Reblogged from Irish Dysautonomia Awareness:

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!! #1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea most days, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, the hubby did his research while I was having a bad …

Very helpful article…

I am doing portraits…people as well as pets. Let me know if you might be interested.
 
 

UPDATE: The finished painting is now also on Flickr.

I also have visual hallucinations…this is whenhype see swirIng/moving colors and shapes in the darkness or with closed eyes. I am not sure if either of these conditions have any relation to my Hemiplegic Migraines (migraines that exactly mimic a stroke…scary aura!) or optical migraine, but to me that would make sense.

I have had a terrible time with ‘blushing’ all my life…at least, that is what I believed it was for most of my life. It was embarrassing because people so often thought I was embarrassed when I was not embarrassed at all! It got worse as I got older, finally getting so bad that it looked like the classic Lupus butterfly facial rash. So far, I have tested negative for Lupus. By ruling out other likely causes of the flushing (and other MCAD symptoms), I now have a presumed diagnosis; a definitive diagnosis would require a painful bone marrow biopsy, a measure which at this point seems unnecessary since I am responding well to the MCAD therapies I have tried thus far (antihistamines, H1 H2 blockers, mast cell stabilizers).

I will swallow my vanity and show you two ghastly looking photos of a recent MCAD flushing episode. I was actually even redder in person…the camera actually toned down the redness somewhat. I did not adjust the images in any way. The pictured episode was triggered by activity and allergens. It lasted about six or seven hours.

MCAD (Mast Cell Activation Disease) flushing feels rather like a combination of sunburn and windburn, a sort of stinging sensation. I can feel a flushing episode before it becomes visible and also for a little while after it visibly fades. An episode can last a half hour or so for a very mild one to several days for a major one. During bad episodes, the reddened area is slightly swollen/raised.

I tend to get such severe flushing that it has shocked several medical professionals. I say this because one does not have to look like these photos in order to have MCAD. It seems as though I am a medicinal overachiever of sorts, a habit I would really like to be rid of! Unluckily for me, it seems every medical thing with me has to be some kind of really extreme version of whatever it is. Many things are severe to the point of ridiculousness. But I digress.

MCAD is fairly rare, but more common with POTS and EDS patients such as myself. Though not curable, it is at least treatable. I believe it is likely the primary culprit of my voice loss issues, as well.

HELPING YOUR LOVED ONES UNDERSTAND DYSAUTONOMIA

What is Dysautonomia/POTS:

Dysautonomia is a malfunctioning of the Autonomic Nervous System, or the unconscious bodily functions – your heart rate, digestion, breathing, blood pressure, digestion, heartbeat, bladder function & narrowing or widening of the blood vessels, body temperature, sweating, bowel function & sleep patterns. Dysautonomia can also be referred to as Autonomic Neuropathy. Think of it this way – Dysautonomia can interrupt the inner workings of the human body. A patient with Dysautonomia is most often bedridden, because when they stand up, their brain forgets to send the correct signals to the heart to pump blood to the brain. This results in a significant drop in blood pressure upon standing, along with an increase in heart rate, because the patient’s heart must try to beat overtime to get blood to the brain so the patient doesn’t faint. Testing revealed that for me, when I stand up, my heart rate typically reaches between 120 & 145 beats per minute, without even having taken a few steps yet. This is often a target heart rate for someone that has been running on a treadmill for over 25 minutes. This is a hallmark characteristic of the condition.

The autonomic nervous system, also known as the involuntary nervous system, regulates those facets in the body that occur automatically, such as breathing, It is composed of two branches – the parasympathetic nervous system & the sympathetic nervous system.

Sympathetic – The sympathetic nervous system is also known as our stress response system, or the fight or flight system, & it is set into motion when we experience stress. It increases our heart rate & blood pressure, dilates pupils, restricts circulation, slows down digestion, relaxes the bladder, makes us more alert & aware & provides a boost in energy so that we are capable of dealing with the stressful situation effectively. It increases energy & is often referred to as the accelerator of the autonomic nervous system.

Parasympathetic – The job of the parasympathetic nervous system is the exact opposite. Once the stressful event is over, it brings the heart rate & blood pressure back to normal, constricts pupils, improves circulation, enhances digestion, calms us down, contracts the bladder & puts us into a state of rest & relaxation. It conserves energy & is often referred to as the breaks of the autonomic nervous system.

What Causes Dysautonomia or Autonomic Nervous System Dysfunction?

When the autonomic nervous system is functioning as it should, the sympathetic nervous system & the parasympathetic nervous system work in perfect harmony together to maintain balance in the body. The sympathetic nervous system provides us with the tools we need to respond to stress adequately & the parasympathetic nervous system restores us to our normal state of peace & tranquility.

Dysautonomia, or autonomic nervous system dysfunction, occurs when these two systems fail to work together in harmony. The most common scenario is the sympathetic nervous system remains dominant most of the time & the parasympathetic never turns on. When this occurs, then the body remains in a state of fight or flight at all times. The stress response system never turns off. If the body remains in a state of fight or flight at all times, then many degenerative processes begin to happen & result in a variety of chronic health conditions & overall poor health like those in our list above, because it is only supposed to be used for brief emergencies.

The stress response system was designed to deal with brief emergencies that threaten survival. It isn’t supposed to last very long because the body cannot sustain itself for very long in this state. The natural & preferred state of the mind & body is the parasympathetic state, because it is regenerative. However, it is willing to forgo its preferred parasympathetic state to deal with acute emergencies & will remain in that state if the emergency continues. If the brain & the body remain in the sympathetic fight or flight state for too long & too often, it is degenerative; it breaks us down. If this cycle continues, then eventually the system burns out. It is this cycle that results in Dysautonomia or autonomic nervous system dysfunction.

Symptoms of Dysautonomia/POTS

The quantity & severity of symptoms varies from day to day.

Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly.
Appears to have more viral illnesses than general population.
Aches & Pains
Aching neck & shoulders
Acid Reflux
Anxiety (Non-mentally induced/uncontrollable)
Arrhythmias
Bladder dysfunction
Bloating
Blood pooling in limbs (legs feel heavy & appear mottled & purple in color)
Blurred Vision
Body temperature regulation difficulty
Chemical sensitivities (air fresheners, bug spray, some perfumes, hairsprays, deodorants)
Chest discomfort &/or pain
Chills
Clamminess
Cognitive impairment (difficulty concentrating, brain fog, or word recall)
Comprehension difficulties. Inability to follow a conversation. May hear words but is unable to understand their context in the sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Loses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
Constipation
Decrease sensitivity to pain/touch in certain areas. If standing or sitting too long causes hands & feet to turn cold & blue, patient will have decreased sensation in these areas due to poor blood flow.
Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because they did not perceive anyone or anything next to them.
Delayed gastric emptying
Depression
Diarrhea (with alternating constipation)
Distorted depth perception resulting unsteadiness. Often appears “clumsy” or excessively cautious when climbing stairs, reaching for object, etc.
Dizziness
Drifting to the right or left when walking. Most patients report drifting to the right. Many report always fainting to the right as well. Appears to be unrelated to hand-dominance.
Easily over-stimulated (excited, nervous, startled, or scared)
Excessive sweating
Exercise Intolerance
Excessive Fatigue (which can be disabling)
Feeling “wired”
Feeling cold all over
Feeling full quickly
Flushing
Food allergies/sensitivities
Frequent “bumping into things”. Attributed to a combination of visual & depth perception deficits.
Forgetfulness
Generalized weakness
Headaches
High blood pressure
Hyperreflexia (overactive physiological reflex)
Hyperventilation
Hypovolemia (decrease in the volume of the circulating blood)
Inability to concentrate or remember (frequently referred to as “brain fog”)
Increased Emotions
Intelligence normal when receiving adequate cerebral perfusion.
Intolerance to heat/cold
Irregular menstrual cycles
Irritability due to decreased blood flow to brain
Lack of Low/High Blood Sugar Warning
Light Sensitivity
Lightheadedness
Loss of appetite
Loss of sweating
Low Back Pain
Low blood pressure
Low blood pressure upon standing
Migraines
Mild or severe anemia
Muscle aches &/or joint pains
Myofascial pain (regional muscle pain)
Narrowing of upright pulse pressure
Nausea
Nerve Pain
Neuropathic pain (chronic pain by damage or disease of peripheral/central nervous system.)
Noise Sensitivity
Numbness or tingling sensations
Overall slowing of metabolism is common. -Increased metabolism
Palpitations (rapid/violent heartbeat)
Panic (Non-mentally induced uncontrollable)
Polydipsia (excessive thirst)
Postprandial hypotension (low blood pressure after meals)
Pupillary dysfunction such as: Blurred Vision & Tunnel vision
Restless leg syndrome
Seizures (Anoxic/convulsive seizures, not epileptic)
Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain especially right after an episode or if the patient has not had enough sleep.
Sexual Difficulties
Shortness of breath
Sleep pattern problems (Need to sleep 12-14 hours perform to simple activities of daily living)
Sluggish Pupil Reaction – Difficult to drive at night.
Speech disturbances: Inability to finish a sentence, loss of train of thought, especially if up & about for 2 hours or more without lying flat & resting.
Stress- our bodies simply can’t handle stress as they’re supposed to. Our bodies (which are so much weaker to begin with) go into fight/flight on the tiniest of stresses (physical or emotional) and they get stuck in sympathetic mode. A normal person’s body will return to parasympathetic mode, whereas ours don’t. We get trapped in overwhelming anxiety which is due to the dysfunctional autonomic system.
Sweating Abnormalities
Swollen nodules/lymph nodes
Syncope/Fainting/near syncope
Tachycardia (rapid heart rate)
Taste & appetite changes. Fruits & other acidic foods may taste extremely acidic. Foods may taste different if patient is tired, stressed, or post-syncopal episode.
Tremulousness
Trouble Breathing
Vertigo
Vomiting
Weakness & weakness in legs
Weight gain regardless of diet modifications.
White appearance of fingers. Some present with white patches of skin on arms & legs. Often have the appearance of blotchy like skin.

Chronic Stress & the Autonomic Nervous System (ANS)

There are many different kinds of stress or types of overstimulation & each one is perceived by the body in the same way — a threat to survival that activates the sympathetic fight or flight system. Dr. Charles Gant, tells us there are 12 different kinds of stress, but underneath each of these categories is a never ending list of possibilities.
Emotional stress – this is the form of stress most people are familiar with & what comes to mind when they think of the term. This may include loss of any kind like a divorce or break up, loss of a job, loss of abilities or characteristics, depression, conflict in relationships, financial struggles, internal conflict, dysfunctional or toxic relationships, employment issues etc.

Cognitive stress – unrealistic demands or expectations for yourself &/or your life, trying to live up to expectations of others, keeping up with the Jones’s, seeing the glass half empty, etc.

Sensory stress – chronic pain, loud noise, constant stimulation from external sources.

Metabolic stress – syndrome x, too much exercise, ph, blood sugar, hypoglycemia.

Toxic stress – I usually refer to this as environmental toxins. Things like heavy metal toxicity, amalgam fillings, mercury in your food, air pollution, electrosmog, pesticides, herbicides, mold, disinfectants, perfume, air fresheners etc.

Immune stress – food allergies or sensitivities, inflammation, autoimmune disorders.

Endocrine & neurotransmitter stress – adrenal glands, cortisol, thyroid disorders, hormonal imbalances, menopause, andropause, insulin, dopamine, serotonin, norepinephrine, GABA etc.

Purposelessness stress – I call this spiritual stress. Lack of meaning & purpose in life, inability to find gratitude, lack of love & empathy, not connected to the Universe, loss of self.

Infectious stress – Candida, parasites, viruses, bacteria, lyme etc.

Oxidative stress – veins & arteries, emphysema, lack of fresh air, sleep apnea, phase 1 & phase 2 detoxification.

Energetic stress – electromagnetic fields from cell phones, electronics etc., geopathic.

Structural stress – spine alignment, posture, TMJ, cranio-sacral. Etc.

This list is not exhaustive either, & many experiences or conditions could probably fall under more than one category but it gives a good outline to begin identifying sources of stress, or things that cause overstimulation to the stress response system.

Why is Chronic Stress Harmful?

If you experience only one or two stressors in the list above, your sympathetic nervous system will deal with the situation at hand & you return to the parasympathetic state. However, the more stressors you have to deal with in your life, the more your sympathetic nervous system is activated. When your total stress load, which is the sum of all your stressors added together, becomes too high then Dysautonomia occurs.

When we are under stress, the fight or flight system is activated & the sympathetic nervous system is in control; digestion is shut down, metabolism is impaired, blood pressure & heart rate increase, circulation is impaired, high levels of norepinephrine are released in the brain & the adrenal glands release hormones like adrenalin & cortisol. In a state of chronic stress, the body remains in this condition continually. It’s easy to see how remaining in constant fight or flight would lead to a variety of digestive & circulation disorders as well as high blood pressure.

High levels of norepinephrine in the brain result in anxiety, panic attacks, insomnia, & inability to relax while adrenalin triggers the liver to dump its sugar reserves into the blood stream. High levels of sugar in the blood steam alert the pancreas to release high levels of insulin. High levels of insulin in blood stream in ongoing basis lead to many degenerative health conditions like insulin resistance, obesity, type 2 diabetes, heart disease & many more.

Cortisol is extremely important because it helps counteract some of the negative effects of stress & keep things in balance. It enhances digestion & metabolism, restricts insulin, is a crucial player in blood sugar management, glucose metabolism, immune function & the inflammatory response. However, excessively high levels of cortisol that occur when the demands of stress are too high result in high levels of anxiety & fear, disruption of the hormonal system, may impair memory & cognition & eventually leads to burn out. If the demands for cortisol remain high & incessant, eventually the adrenal glands can no longer produce enough cortisol.

It is the combination of these negative effects of excessive sympathetic nervous system activity that lead to Dysautonomia. At this point there is a domino effect on other organs & systems in the body, the entire nervous system, immune system, endocrine system, hormonal system, cardiovascular system, digestive system, etc. Etc. Become affected & degradation in many areas of health may occur.

What Might Help Restore Balance to ANS

The process of restoring balance to the autonomic nervous system requires a complex & comprehensive approach that addresses each & every one of the contributing chronic stress factors that exist for each individual, also a variety of techniques & lifestyle changes that encourage activity of the parasympathetic nervous system & oppose the high levels of norepinephrine.

Reduce Your Total Stress Load – One must go through the list of stressors above, identify each one that pertains to your situation, & address them accordingly. If you have a boat filled with water & it is sinking, you take a bucket & toss the excess water out & the boat will stop sinking. The same applies to the stress load. Start tossing them overboard so you can get your head above water. Whatever stressors apply to your life, these are the areas you need to focus to reduce your total stress load.

Get Lots of Rest – Unfortunately in our society we tend to frown upon people who rest & take naps. We are expected to be doing something all the time, & if we aren’t then we are often labeled as lazy or lacking in motivation. Taking time to rest & nap is very healthy & getting plenty of it is a crucial part of recovery for an overactive sympathetic nervous system. This includes insuring that you get your 8 or 9 hours of sleep each night.

Cholesterol Level – Dr. Charles Gant tells us that a cholesterol level of below 160 is very hazardous to your health. Cholesterol is needed for the synthesis of all our steroid hormones. If you don’t have enough cholesterol, you can’t produce life sustaining hormones like dhea, progesterone, estrogen, aldosterone & testosterone & importantly regarding the autonomic nervous system, cortisol.

Diet – What you eat has a profound impact on your autonomic nervous system. Sugar, food additives, preservatives, dyes, caffeine, nicotine, pesticides all trigger the fight or flight system & keep the sympathetic nervous system in high alert & should be eliminated. High starches foods like whole grains, potatoes & beans break down into sugar in the body & should be avoided or at least greatly reduced as they trigger the fight or flight. The diet should be high in animal protein & low-starch vegetables, eggs, & low sugar fruits, nuts, & seeds. Butter & yogurt are good for the endocrine & nervous system as well.

Environmental Toxins – Most of the common everyday chemicals found in your cleaning products, personal care products, perfume, cologne, laundry products, air fresheners, pest control, lawn products etc., contain harmful toxins that not only over stimulate the sympathetic nervous system, but are destructive to the endocrine system, immune system, detoxification system & central nervous system as well. This is especially true of pesticides. They are one of the most harmful toxins that exist. & this applies to mold as well; they emit mycotoxins that are harmful to the mind & body in the same manner as any other toxin. It is crucial to eliminate these substances from your life, eat organic, & switch over to environmentally friendly products. The autonomic nervous system simply cannot be restored to balance if it is constantly exposed to environmental toxins.

Exercise – Getting regular exercise is very important for healing the autonomic nervous system; however the type of exercise you engage in is even more important. Exercise that is too intense & strenuous will put too much pressure on the endocrine system & add to depletion of cortisol & neurotransmitters in the brain. Mild, gentle exercise with a few short bursts of intensity will turn off the sympathetic nervous system, such as that found in the PACE exercise program. This also boosts endorphins, serotonin, & dopamine which oppose norepinephrine.

Replenish Nutrients – People with Dysautonomia typically have a long list of nutritional deficiencies they are unaware of. Adequate levels of vitamin c, zinc, pantethine, folic acid, b12, b1, b2, b3, pyridoxal 5 phosphate, as well as a variety of amino acids, fatty acids, & minerals are essential for a healthy nervous system & neurotransmitter production & function. An Organic Acids test is a good place to start for identifying nutritional deficiencies.

Deep Breathing Exercises – Breathwork & deep breathing exercises is one of the most effective & affordable tools you can find for assistance in restoring balance to the autonomic nervous system. With our breath we can use our voluntary nervous system to influence our involuntary nervous system. We can turn off the sympathetic nervous system & turn on the parasympathetic simply by changing our patterns of breathing & also stimulate the feel good, relaxing alpha brain waves & neurotransmitters like endorphins, dopamine, & serotonin.

Mindfulness Based Meditation – Simple mindfulness based meditation is also very effective for activating the parasympathetic nervous system & stimulating the neurotransmitters serotonin, dopamine & endorphins which help us feel more relaxed, harmonious, balanced & happier.

Meditation & deep breathing are just two of the activities that can be used, but there are many others. Any activity that brings peace, harmony, oneness with the Universe, balance, & happiness to your life or makes you feel centered, like art, dance, social activism, love, yoga, tai chi, writing, spending time with nature etc., will also aid in soothing your stress response system.

What to avoid when you have Dysautonomia/POTS

Ablation of the sinus node may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia & postural orthostatic tachycardia. However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms…

Alcohol enhances peripheral venous pooling, which will exacerbate hypotension. Alcohol can also lead to a dehydrated state.

Anesthesia can be especially challenging for patients with autonomic dysfunction. When anesthesia is absolutely necessary, an arterial line should be inserted to monitor beat to beat variations in blood pressure. Heart rate should also be constantly monitored, as anesthesia can disturb cardiovascular function. Extra IV fluids are also needed.
Bending up & down, as done when picking items up off of the floor, may increase symptoms. It is best to bend at the knee & squat down rather than to bend over forward at the waist.

Blowing up balloons is similar to the valsalva maneuver & can exacerbate symptoms in some patients.

Certain Foods, such as dairy products, may increase symptoms in patients. White sugar & other refined carbs can exacerbate hypotension by causing increased dilation in the gut. It is important to identify & avoid food triggers.

Climbing stairs will make some patients feel worse.

Dehydration is one of the worst states a POTS patient can be in. It is very important to always stay well hydrated.

Doctors who don’t know much about POTS will surely leave patients feeling frustrated. Patients of inexperienced doctors may not receive expert care & may not return to optimum health. Finding an experienced physician is not only desirable, it is a necessity.

Eating large meals can worsen hypotension in some individuals with Dysautonomia. This is because large meals can cause blood to pool excessively in the abdomen.

Energy Drinks, such as Red Bull, should be avoided in those with POTS. Postural tachycardia syndrome associated with a vasovagal reaction was recorded in a volleyball player after an excess intake of Red Bull.

Epinephrine is used by doctors & dentists for a variety of reasons. It is commonly used in numbing shots. It is wise to avoid epinephrine as it stimulates the heart.

Exercise will make many people with Dysautonomia feel worse. Strenuous, exhausting exercise should be avoided. Some patients will experience an exacerbation of symptoms after exercise that may last for a day or more, especially if they suffer from mitochondrial disease. These patients should check with a physician before starting any exercise program. Exercise may be helpful in abating blood from pooling in the limbs. Exercise to build & strengthen the leg muscles can be especially beneficial.

Fatigue enhances peripheral venous pooling. Those with POTS do well to live life at their own pace. It’s important that patients don’t overdo it; this will make them feel even worse. POTS will require some lifestyle modification.
Giving blood can be harmful to people with POTS. Blood pooling in the legs already diminishes the blood flowing to the heart & brain. Further, some patients have low blood volume & need every drop of blood that they have.
Heat dilates blood vessels & will make POTS symptoms worse. Patients should avoid spending a lot of time outdoors on hot days. POTS patients should not take hot showers/baths or subject their bodies to saunas, hot tubs, or greenhouses. Heat enhances peripheral venous pooling.

Holding the arms up in the air can cause problems for some individuals. Holding the arms up requires the heart to work harder to counteract the effects of gravity. This is especially difficult for the heart if there is already excessive venous pooling in the lower limbs. The heart may not be able to effectively pump blood up into raised arms & tachycardia will result from its effort.

Lifting objects can aggravate the symptoms of POTS. This may be due to the increased work load on the heart, especially if blood is pooling in the legs. Pooling blood in the lower body makes less blood available for the muscles in the upper body. Also, straining, bending over, coughing, & sneezing all raise cerebral spinal fluid pressure.

Many medications will affect autonomic testing results. Some medications that have been reported to significantly affect autonomic testing results include: chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazapine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates, & topical capsaicin. Some physicians believe patients should discontinue medication before autonomic testing. Numerous over-the-counter products, such as melatonin, can negatively affect the POTS patient. Many products stimulate the heart or lower blood pressure or have diuretic effects, etc. For example, caffeine can have the positive effect of raising blood pressure in some individuals. Caffeine also increases the length of time that catecholamines remain active & this can be detrimental to those with a hyper adrenergic state.

Over-stimulating environments can make POTS symptoms worse. A number of POTS patients report being overly sensitive to bright lights, loud noises & busy environments.

Singing has been reported to temporarily worsen symptoms in some individuals.

Some pharmacologic agents may cause or worsen orthostatic intolerance. Please check with your physician before taking prescription or over-the-counter medications.

Stress will often aggravate the symptoms of POTS. The body is continuously adapting to stress, whether it is physical, mental, or chemical. POTS patients sometimes lack the ability to correctly process stress due to malfunctioning or excessive functioning of the autonomic nervous system (ANS). Patients may also already have high levels of norepinephrine, which is a stress hormone. POTS patients need to avoid stress (when possible) & live life at their own pace.

Travel by airplane is challenging for dysautonomics & may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some Dysautonomia patients to hyperventilate. Those with POTS do need to know that the air in an airplane is some of the driest in the world. Flying can have dehydrating effects in normal individuals. How much more so flying might dehydrate someone with low blood volume. Everyone should be well hydrated before boarding a plane.

What Might Help Dysautonomia/POTS Symptoms

Elevating the head of the bed 4-12 inches has helped POTS patients become less symptomatic. It expands plasma volume.

Exercise can be helpful to those with Dysautonomia. It is important that one does not let their body become deconditioned, as this will exacerbate symptoms. Tightening and building the leg muscles will help them to squeeze pooling blood back to the upper part of the body. Swimming in water has been reported to help many dysautonomics; however no one who faints should go into water alone. Yaz Exercises and recumbent stationary bikes may be beneficial to some patients with POTS. Swimming for 20 minutes a day, three times a week, is the most recommended exercise for patients as they are not being pulled by gravity as they would be standing up.

Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances. These patients may require more sleep than the average person.

Heart rate watches can help patients identify situations that trigger heart rate increases. These watches are available at sports stores or can be purchased on the Internet.

Ice has reportedly helped some POTS patients. Rubbing ice on the body, especially on the bottom of the feet or neck, may help some POTS patients ward off an episode.

Increasing fluids helps many people with POTS feel better. Many POTS patients report Gatorade or electrolyte solutions to be helpful. Drinking alot of water helps to raise blood pressure. Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Patients should not drink excessive amounts of water because it can cause essential electrolytes to become diluted in the bloodstream, which may affect heart rhythm.

Increasing salt is a treatment used for many people with POTS, however salt is not recommended for all patients.

Magnesium may be helpful to a number of POTS patients. Magnesium is sometimes prescribed to POTS patients with Ehlers-Danlos syndrome. Some patients report a decrease in arrhythmias after taking this mineral daily for a few weeks.

Scheduling activities in the afternoon as opposed to the morning is a wise decision for those with POTS. Most patients report symptoms being greater in the morning hours.

Sitting down in the shower instead of standing is helpful to many patients. It is important to avoid hot water as this will dilate blood vessels and exacerbate symptoms. Rinsing the legs (or whole body) in cold water before exiting the shower will constrict the blood vessels and should help one to feel less faint.

A sock filled with warmed rice may provide some relief from the headaches that can accompany Dysautonomia. Rice socks can be made by filling a tube sock with uncooked white rice, tying sock closed at the end. Heat rice filled sock in microwave.

Standing up slowly will give a patient’s body more time to adjust to upright posture. Patients getting up from a lying position may find it beneficial to sit up for a few minutes before standing.

Treating allergies might help one to feel better. It’s been reported that people with POTS lose their ability to vasoconstrict. This means that many POTS patients have problems with their blood vessels being excessively dilated.
Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients.
Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants.

Walking around right after getting out of bed is beneficial to some patients. The constricting leg muscles help to counteract pooling blood.

TAKING A SHOWER WHEN YOU HAVE DYSAUTONOMIA

For most people, taking a shower is something you take for granted—something you automatically do in the morning, or before going somewhere. It may be refreshing or it might help wake you up in the morning, helping you to get ready to face the rest of the day. For somebody with Dysautonomia though, taking a shower is anything but refreshing. It is a major task that is time consuming & requires careful preparation & planning. To give the average person an idea of what a typical day is like for a person with Dysautonomia, the following is what it is like to do one of the most basic tasks: taking a shower. This is not meant to depress or get sympathy, but hopefully give a little understanding.

There are many steps to taking a shower, but before you undertake any of them, try to plan your shower so that you don’t have to do something else that strenuous like doing laundry or going out somewhere, in the same day. If this is not possible, at least try to plan so that it isn’t in the same part of the day (if you’re going out in the afternoon, shower in the morning or evening).

Make sure you have eaten recently, but not too recently. If you haven’t eaten, you shouldn’t shower, unless you don’t mind passing out. If you have just eaten, wait at least a half hour. If you don’t, your blood will go to your abdomen to digest your food, & not to your brain where you need it—not a good thing when your circulating blood volume is much lower than other people’s. Also make sure you have taken your meds.

Drink a glass of water. This will help keep your blood pressure up & keep you from getting dehydrated during the strenuous task you’re about to undertake.

Lay out the clothes you’re going to wear. You might be too tired after your shower to get them out. Also make sure to lay them out in the order you’re going to put them on. If you don’t, brain fog may later prevent you from easily figuring out what you need to put on first.

Rest for a few minutes. You may not be tired at this point, but you will need all your energy for your shower.

Walk to the bathroom. This is considered a separate step because of all the energy it takes.

Turn on the water & make it as cool as you can stand it. If it’s too warm, you increase the risk of passing out.

Get in slowly, sit down on your shower stool, & rest for a minute. Standing up in the shower is not a good idea. You want to make sure to rest after you get in to conserve energy so you don’t overdo it too early.

Washing may take several steps. You need to wash part of your body, rest, wash another part, rest, & repeat.

Make sure you check your heart rate a few times throughout your shower. If it’s too fast you may need to stop & rest, cool down the water, or even lay down. Any time your heart races too much you need to wait until it’s down to a more reasonable speed before continuing. If you don’t, you might pass out.

Wash your hair. Make sure you never have both of your arms above your head at the same time. If you do, you will lower your blood pressure, speed up your heart, & you might pass out. If you start feeling lightheaded or faint, put your arms down & wait until you feel better before finishing washing your hair.

Rinse your hair. Again, only one arm up at a time.

If you usually use conditioner, rest first. Having even one arm above your head for too long without rest is a recipe for disaster. If you are not feeling well by this point, you may need to skip the conditioner this time. Put in your conditioner & rinse, following the same steps & rules as for washing your hair.

Once you are finished, turn the water off. If you are feeling faint, your feet are purple (from the blood pooling), or your heart is racing, you should run cold water on your feet & lower legs first.

Rest until you are feeling ok to stand up.

Stand up slowly, be sure to hold to something for balance. This is the part of your shower where you are the most likely to faint. If you feel faint, sit down & repeat the above step as many times as necessary.

Get out slowly. Check your heart rate. If it’s too fast, lay down on the floor. This will cool you off & should eventually slow down your heart as the blood returns to your brain. If you are feeling really bad, put your feet up. If your heart rate isn’t too fast but you’re not feeling well, you may feel better by just sitting down.

Dry off. As with washing up, this might consist of several steps as you rest periodically.

Comb or brush your hair. Do this while you’re still in the bathroom so you can limit the number of trips to & from the bathroom. Don’t put your robe or towel on yet, as this could make you get too warm & pass out. Once again, observe the rule of one arm above the head at a time. You may need to sit down while doing this.

This is not the time to use things like hair dryers or curling irons. It’s too soon after your shower, & if you try you will probably pass out. Rest for a minute, until you’re sure you’re ok to walk back to your room.

Lay down until your heart rate & blood pressure get back to normal (for you), & until you stop shaking. This may take a few minutes or a half hour or more.

Sit up slowly, & drink another glass of water. This will help raise your blood pressure & give you a boost.

Get dressed slowly. Don’t stand up any more than you have to. If it is a particularly bad day, you have probably figured out how to put your pants on without standing up. Rest in between articles of clothing if needed. Brain fog may make aspects of getting dressed difficult, but if you have laid your clothes out in the correct order as instructed above this should minimize the difficulty.

You will need to rest for at least a half hour before getting up & doing anything else. Things like putting on makeup & styling your hair are not considered to be part of the “taking a shower” process. Considerable rest will be needed before you attempt these tasks, & some days they may not be possible at all.

Dysautonomia is not the same for everyone. Some people may have very little trouble taking a shower & others may not be able to shower by themselves, if at all. Some days will be better & some worse. If you are reading this & you do not have Dysautonomia, but know someone who does—or who has any other chronic illness—keep this in mind the next time the person cancels on you for the millionth time, or takes 2 hours to get ready in the morning.

Okay, calling all POTSies and Zebras out there…this post is a sort of plea for opinions and advice. First, you might want to peek at my last post and listen to the BlipMe link (recording of my voice so you can hear how raspy and hoarse my voice gets). I am not sure what to do about this combination of factors:

• Frequent loss of voice or extreme hoarseness
• Intermittent trouble swallowing, even my own saliva; aspirating things
• Asthma seems worse (same symptoms as VCD)
• MCAD (Mast Cell Activation Disease) worse

I know that is vague, but I wanted to quickly hit the high points. Now I will ‘splain some more, or try. It is very difficult to tell the difference between VCD (Vocal Chord Disorder) and asthma. The symptoms list is pretty much identical. MCAD is basically an overload of mast cells in the body that release a crap load of histamines, so it gives you allergic type reactions, often affecting the skin. I am wondering if the MCAD is affecting the tissue in my throat and airway. It feels sort of damaged, which is mostly from what the doc said was (borderline pneumonia) severe bronchitis/sinusitis that began like over three months ago. Did the z-pack of antibiotics. Doing the Albuteral inhaler, which helps a little bit, but not nearly enough. The thing that has actually helped the most is NasalCrom spray, which is a mast cell stabilizer and prevents my MCAD caused constant drippy nose, and actually does help my throat a bit. There is a point for MCAD.

What has been happening is I will have a dry coughing jag, and on exhale, it feels like my throat and airway/trachea is sticking to itself, and I can only suck in hard won tiny gasps of air…it all slaps shut between each bitty gasp of air. I guess I need to find out whether a rescue inhaler will help this? I have never had to use one.

Because of my fatigue, I need to keep my outings to a minimum, and I don’t want to waste time going to a half dozen different doctors who don’t know what to do with me (yes, that has happened a LOT). So any thoughts or advice on approach, what kind of doctor would be best to see…having EDS (connective tissue disorder) complicates things a bit.

If anyone has been through this, I am interested in your experiences. I should add that I have been losing my voice and having trouble swallowing for a good 10-15 years, but it has gotten increasingly worse over the past several years. So it is this thing I have lived with so long that it doesn’t seem like any sort of urgent thing. It is the airway closing up thing that is freaking me out. I am not sure if I have a floppy trachea and throat because of EDS? My throat has always had issues…recurring strep and tonsillitis, had the tonsils removed at age 14. I dunno…just really frustrated with all this. It seems like if it were simple asthma, the inhaler would be doing more for me.

I have this recurring problem with losing my voice. It has been happening for a good decade or so, getting worse in recent years. Typically, it will happen with exertion, in the afternoon and evening, and when I speak often. Mostly, it is just obnoxious, I suppose. I also have difficulty swallowing and have worsening asthma…whether these are related, I am not certain. It could be an aspect of my MCAD (mast cell activation disease), the CFS/ME, and/one EDS. In all likelihood, it is an overlapping thing. Wanna hear how I often sound?

I am struggling pretty hard at the moment, and I’ve been bashed over the head with some daunting realizations. This is it. It is ALWAYS going to be a roller coaster, and I am not ever going to achieve some stable result, some place with a nice view from which I can enjoy the grandeur of achievement. This is it. This is how I roll, now, for better or worse. And even this is subject to change.

I do not say this to be depressing or exhibit self pity. I feel disappointment and frustration, but very little self pity. I say this to be pragmatic. I say this because, in order to continue my fight, I have to assess and the odds and the lay of the battlefield. I have to know my enemy, and what my enemy wants from me. Without this knowledge, it is that much harder (not to mention highly unlikely) to kick the ass of my enemy…or should I say enemies. After all. I am blessed with more than one incurable rare POS condition. POS is piece of $#*+, by the way, not some new medical acronym.

I came to these nasty realizations after being knocked yet again back to square one, bottom of the tall mountain, looking up dismally at the altitude I must find a way to attain once again. And I may not get there. I might, I might not. But I am gonna fight like a bushido warrior to get there. Again. And again. Rinse and repeat. Therein lies the realization rub; it will continue to be this kind of battle. There is not going to be a victory point at which my enemies surrender and sign the peace treaty. This is my own personal never ending war on terror. It is a battle that has no ending; no defined rules of engagement. And it will screw with me every way it can.

I am oddly calmed by this…knowledge. I was tempted to say acceptance, but I suck at acceptance, and I just don’t see a reason to change now. I don’t want to accept it; I will instead fight back, get creative, look for ways to beat the unbeatable, James Tiberius Kirk-style. Eff acceptance. That’s for sheeple.

Just because I am oddly calmed does not diminish my dismay, my frustration, or my “holy crap, this sucks balls” realization; a realization I would very much like to trade in for some other. I can’t do that…at least not yet.

All this comes in the wake of a severe battle with (borderline pneumonia) bronchitis and sinusitis, which I am not entirely sure I can quite get rid of. The cough lingers…three months later. I feel changes inside my airway, trachea, throat…there is tissue damage, which I hope will heal. My asthma is in overdrive. That ticks me off, because I need to start training again, and this is going to be a bitch of an ascent. I have to literally climb the mountain I live on…start hiking again.

My battle begins lying in bed, barely able to sit up many days. I have been here before, minus the effects of the bronchitis and worsened asthma. I know how hard the beginning is; now daunting; how physically miserable. But I WILL do this. Again. And whether I reach the summit, itself, it WILL reach a personal summit. Maybe, just maybe, I will exceed all my hopes…hope is a fabulous four letter word. But in the meantime, it is gonna be pretty excruciating (mentally, physically, emotionally). So I am readying for this battle. I am the 300. I will push through the misery. Again. And I will prevail.

The part that sucks most is really understanding that this cycle IS my reality. I don’t get to do it one time, two times, three…(I have already done it far in excess of that…a dozen times, perhaps). I get to keep doing this, probably for the rest of my life.

So why bother? Because I CAN. Because I want a life, and to feel strong, able, fit, battle ready…even if it is a part time gig. Part beats none, yo? And no way am I rolling over in some ditch and letting a bunch of cruel enemies chortle over a badly won victory. Nuh uh. Not this girl. Not on your life, or mine.

I do think it sucks monkey crotch that I have to keep doing this. Especially the initial part (that really miserable beginning) of each new battle. I don’t want to go trough this crap over and over. I really don’t. I’d honestly rather eat dirty worms. But what I do want is what I have experienced on the other side of each fight. I am not willing to give that part up, just because it sucks REEEEAAAALLLYYY bad getting there. So there you have it.

Rinse. Repeat.

oh, and when I start whining and moaning like a total sissy, please link me back here…tell me to STFU and re-read this, and get off my self pitying ass and start climbing, okay? I’d really appreciate that!

Bella

If you are interested in having a portrait done from a photograph, please get in touch. I also paint animals.

My painting of Rachel

Rachel Phillips was a ballet dancer who performed with the Royal Ballet in London, the Kirov in St. Petersburg, Russia and other major companies in the US and abroad. Her world came to an abrupt halt when she began to have complications from a rare connective tissue disorder. With her airways now over 90% collapsed, her only option is to regrow her trachea using her own stem cells.

This life-saving therapy is not yet approved to be performed in the United States, nor will it be covered by Rachel’s health insurance. In addition to the fight of their lives, Rachel and her husband Steven face mountains of medical and other related expenses. They must raise the funds necessary, not only for this life-saving treatment, but also to travel overseas and stay there through Rachel’s recovery, care for Rachel’s service dog Siena, and so on.

The clock is ticking. We need your help NOW in bringing awareness of Rachel’s life-threatening situation to a wider audience for the purpose of knocking down regulatory barriers standing in her way and to raise the funds necessary to pay for this necessary treatment.

I would like for you to please watch this video as it explains exactly what Rachel is facing and experiencing in her own words……http://www.youtube.com/watch?v=waCOXBkVNbw&feature=share

Many many efforts are in the works to help Rachel get to Europe;

The website with the most information (including all efforts and past media coverage) is www.helprachelbreathe.com

A store featuring the artwork of Dar WcWizard and pictures of Rachel has been created and is open for business @ www.zazzle.com/helprachelbreathe.com

A store @ cafe press with computer art work by Michaela Oteri, Angel Oteri and myself at www.cafepress.com/zebrasneedzebras

A FB page supporting Rachel was also recently created @ https://www.facebook.com/groups/198660840207194/

Rachel Phillips also has a CAUSE page on FB to help with donations and to share her story.

Cliff Phillips (Rachel’s father-in-law) raised $5,000 to help with the cause by shaving his head.

Efforts continue world wide amongst the ‘zebra’ (EDS) community, as members of the herd offer creative fundraising, moral support, and spread the word far and wide. You can be part of these efforts!

As an admirer, friend and fellow zebra, I implore you to help Rachel in any way possible…even spreading this message is a huge help!

If your have questions or would like to help in any way, please get in touch with me. I have all of the contact numbers for Steven….however I would ask that you first contact me so that I may relay the information to Rachel and Steven Phillips since Steven is now Rachel’s caretaker as she waits at home to make her trip overseas to have her life saving surgery.

I thank you for taking the time to read this…please explore some of the links below, as well. There is a message in Rachel’s own words, information about the procedure she needs in order to stay alive, information about Ehlers-Danlos Syndrome, and beautiful video clips of Rachel dancing before her illness took away her breath.

Wikipedia has a clear definition of Ehlers-Danlos Syndrome in Layman’s words @- http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome

Most recent news coverage NY1 news story-

http://www.ny1.com/content/ny1_living/health/149173/world-s-first-artificial-windpipe-transplant-may-open-the-door-to-more-procedures?r=5786225461

(KHQA/Quincy, Il to run a two part series October 28th & 29th once it airs it will be added to the websites)

Rachel in her own words:

http://www.youtube.com/watch?feature=player_embedded&v=waCOXBkVNbw (rachel talking with traceostomy)

http://www.youtube.com/watch?v=hyXUvSgzyr4&feature=player_embedded (This is a short clip of one of Rachel’s coughing jags that last for hours… and it isn’t as bad as they get)

MEDICAL VIDEOS

http://www.youtube.com/watch?v=SehlJen0xIs&feature=player_embedded(Film of bronchoscopy showing collapse of the trachea, both main bronchi, and lower airways. It was done in late October, five weeks after Rachel’s tracheobronchoplasty.)

http://www.youtube.com/watch?v=HH0vas1wFq8&feature=player_embedded (Bronchoscopy 11-22-2010 showing metal airway (tracheal) stent encased in cemented secretions. Acetylcysteine (Mucomyst) was used in an attempt to loosen the secretions.)

http://www.youtube.com/watch?v=TI-xaA6CP2Q&feature=player_embedded (Bronchoscopy 11-22-2010 showing metal airway (tracheal) stent encased in cemented secretions. Acetylcysteine (Mucomyst) was used in an attempt to loosen the secretions.

http://www.youtube.com/watch?feature=player_embedded&v=252UbpvMDZA (Bronchoscopy to look at stent treating tracheobronchomalacia. Mucomyst and Pulmozyme were used to break up secretions, but shortly after this, Rachel was rushed to her airway specialist to get it removed as the granulation tissue was growing in way too much.)

http://www.youtube.com/watch?v=M4Li9Rr56Oc&feature=player_embedded (Bronchoscopy showing metal tracheal stent with granulation tissue at the distal end. This requires it to come out as soon as possible and they will have to debride the tissue in order to remove the stent.)

http://www.youtube.com/watch?v=1rejUgAF6Mw&feature=player_embedded (Bronch to check vocal chords and the healing progress of granulation tissue in the airway

Here are the links to her dance videos:

• http://www.youtube.com/watch?v=esubNlll4kU&feature=player_embedded
• http://www.youtube.com/watch?v=n_GNjZdaXAU&feature=player_embedded
• http://www.youtube.com/watch?v=UFXyRgo90JY&feature=player_embedded
• http://www.youtube.com/watch?v=_Ma7cw9poH4&feature=player_embedded
• http://www.youtube.com/watch?v=ahjjj0QXwHQ&feature=player_embedded
• http://www.youtube.com/watch?v=vKU95nLysAo&feature=player_embedded
• http://www.youtube.com/watch?v=esubNlll4kU&feature=player_embedded
• http://www.youtube.com/watch?v=lJPdAl8qxco&feature=player_embedded
• http://www.youtube.com/watch?v=7FbyQNHwffw&feature=player_embedded
• http://www.youtube.com/watch?v=36pMv0o5TKM&feature=player_embedded
• http://www.youtube.com/watch?v=NN5VVbLxRkY&feature=player_embedded
• http://www.youtube.com/watch?feature=player_embedded&v=uaCc-8nBPTwRachel

Rachel PhillipsGrand Jete Photo

Rachel and her service dog SienaRachel and her beautiful smile

PLEASE HELP RACHEL BREATHE! You can help save her life by ordering this pendant like I just did…and pass the word! Every dime is critical at this point to save this amazing woman’s life…to learn more about my friend and her life threatening battle, please visit www.helpRachelbreathe.com

List of a$$e$ I’d love to kick: Newton and his stupid apple; the bald kid who ran off with all of my special bendy spoons; the dude who told me I should live in interesting times…they are probably all hanging out together. Whaddaya bet me?

Trickery, that’s what it is! I will start to think I might feel pretty decent while supine in bed…doing some gardening starts to feel very appealing. I want to jump up and MOVE. But if I get up…slowly…I am reminded that gravity thinks I am its b*tch.

I feel as tho I am caught in a me-shaped torture chamber! Whatever entity came up with this crap is a humorless and cruel bastard.

Before I had a zebra posse (awesome EDS support groups on fb), I had no idea that there were other people who routinely got their butts kicked by bottle caps! Thought it was just ME!

- Posted using BlogPress from my iPad

- Posted using BlogPress from my iPad

And below you can see it with the photo. I did this by hand on iPad 2 in the ArtRage app with BoxWave stylus.

I have always assumed I probably have combo POTS. I was also diagnosed with NCS (neurocardiogenic syncope), which tends to throw an additional wrench into the mix, but then that is how I tend to roll. I can’t do anything the simple way!According to my friend, who is NOT a doctor, but is a fellow POTSie with four years of medical schooling and a whole lot of personally motivated research on the ANS and Dysautonomia, this is what the picture looks like:

“Ok, this is what I know from (your) statistics.. your Sistolic BP never changes, your diastolic however does change when you change positions, it increases and that makes us think more of a pooling or a venous problem than a volumen problem, your HR increases linearly with your position, but the interesting part and what makes you sick is that even without your sistolic changing and your diastolic going up while your pressure pulse drops almost 50% when you stand up. When supine and semi supine your pp is 30, not awesome but not bad, still on the low side, however as soon as you sit it goes down to 25 ( lower bar ) but when you stand it goes to 12 that is why when you sit to feel a bit dizzy but when you stand up, you either almost faint or faint. A pp of 12 is not good…your irrigation is not enough. Basically your increase in Diastolic pressure narrows the pulse pressure so much that the irrigation is not efficient…it’s interesting your blood always leaves your heart with the same pressure but when you stand up it returns with more pressure… as if your veins where overcompensating, they are working harder and pumping the blood harder than when you are supine…don’t take my word for it nor do it but I would look for a way to lower your venous return by using something to dilate your blood vessels, something like amplodipine that lowers bp by opening blood vessels…”

And here is the XL format of the statistical analysis spreadsheet with all the data and charts done by my friend: Shae’s Statistical Analysis

So my diastolic is the key here. I do have monstrous purple feet when standing, sometimes even from sitting. Compression hose DO help me, which makes me wonder a bit about vasoconstriction versus vasodilation. Sometimes these things can be counterintuitive, so perhaps the reason the compression hose help me is not because they help push the blood back up, but maybe because they help prevent too much accumulation in the lower limps to begin with, thus reducing the pressure of the diastolic return? That is the only logic I can make of things thus far. Either way, this gives me some specifics to take to the pros. I think Vandy may be my only hope of getting further conclusions. At least I can show up with a lot of data and research, since my case is particularly unusual. But again, that’s how I roll.

In the graphs below, the bottom row numbers 1 through 4 are as follows:

1. Supine
2. Semi Supine
3. Sitting
4. Standing

And here is the XL format of the statistical analysis spreadsheet with all the data and charts, above, done by my friend: Shae’s Statistical Analysis. Below is a table containing the raw data used in the analysis:

READINGS FROM WITHINGS APP:

Date: 2011-07-05 16:24:40 SEMI SUPINE
SYS/DIA: 105/64
BPM: 74

Date: 2011-07-05 16:32:01 SEMI SUPINE
SYS/DIA: 108/64
BPM: 82

Date: 2011-07-05 16:34:08 SITTING
SYS/DIA: 99/69
BPM: 91

Date: 2011-07-05 17:42:27 STANDING
SYS/DIA: 111/82
BPM: 107

Date: 2011-07-05 22:19:34 STANDING
SYS/DIA: 107/80
BPM: 138

Date: 2011-07-26 16:56:16 SEMI SUPINE
SYS/DIA: 118/78
BPM: 87

Date: 2011-07-26 17:00:37 STANDING
SYS/DIA: 94/81
BPM: 156

Date: 2011-07-26 17:04:11 SEMI SUPINE
SYS/DIA: 109/68
BPM: 82

Date: 2011-07-26 17:07:35 SEMI SUPINE
SYS/DIA: 100/62
BPM: 87

Date: 2011-07-27 21:25:56 STANDING
SYS/DIA: 92/79
BPM: 126

Date: 2011-07-27 21:56:03 SITTING
SYS/DIA: 101/78
BPM: 111

Date: 2011-07-29 13:40:05 STANDING
SYS/DIA: 100/84
BPM: 148

NO ADDERALL

Date: 2011-09-18 14:42:00 STANDING
SYS/DIA: 126/91
BPM: 100

Date: 2011-09-18 14:44:27 STANDING
SYS/DIA: 115/91
BPM: 115

Date: 2011-09-18 14:58:12 SEMI SUPINE
SYS/DIA: 119/80
BPM: 74

ON MUCINEX

Date: 2011-09-23 14:17:34
SYS/DIA: 125/71
BPM: 76

Date: 2011-09-23 14:21:41 SEMI SUPINE
SYS/DIA: 114/69
BPM: 73

Date: 2011-09-23 16:50:54 STANDING
SYS/DIA: 118/89
BPM: 105

Date: 2011-09-23 16:52:30 SITTING
SYS/DIA: 114/87
BPM: 103

Date: 2011-09-23 16:53:53 SEMI SUPINE
SYS/DIA: 118/69
BPM: 67

- Posted using BlogPress from my iPad

First, let me clarify which label I am talking about: EDS (Ehlers-Danlos). The why: it is an easy answer when folks ask The Inevitable Question, “So what’s wrong with you?”

Before I had my lovely label, answering that question was complex. I had no bucket in which to carry my slop or comorbid soup. Even when I learned I had Dysautonomia, it did not help me to explain things like my spine issues. EDS is the root cause of it all, including the Dysautonomia. So yes, despite the label aspect, I do like having this bucket for my soup. It gives me a concise and easy answer for when I am low on spoons, and it gives me a root cause to explain things when I am in an advocating mood (with corresponding spoons available).

I have been asked why it was a big deal for me to have this official diagnosis, if it was something incurable anyway…I mean, what would the difference really be? It is actually a huge difference.

First, there is the emotional relief of KNOWING.
Second, the easy answer thing.
Third, the logic of being able to trace other conditions back to this root.
Fourth, being able to advocate…when your body betrays you, you feel powerless…and advocacy gives you back a sense of that power.
Fifth, it gives me another path to research how all of this ties together. Doctors will not do this for me. Any patient with an incurable condition will tell you this one truth: you are totally responsible for everything about your care, from research to cross referencing every medication for possible interactions with not only your other meds, but your various ‘crap’ list.

So yeah, the label, if you wanna call it that, is very important. It is knowledge. It is power.

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I was active and athletic before and after I became acute. Born with EDS and Dysautonomia, my symptoms were mostly manageable until a severe herniation at L5/S1 left me with permanent nerve damage and partial paralysis in my right calf/ankle/foot. Because of that damage, there is nothing I can do to improve the ‘second heart’ muscle group responsible for assisting blood return.

Sadly, I am left with atrophy and am not able to even lift my right heel off the floor like you do when you stand on your toes, or like when you push forward to walk. So my POTS will probably remain somewhat severe no matter what I do, though I still keep trying anyway. I am losing strength in my legs despite exercises because of spinal deterioration and progressive nerve damage.

This puts me in a more unusual position, I realize, than most POTS patients. Having said that, I should amend with the thought that more people may have a similar progression than people realize, including the patients themselves. Since many potsies also have EDS, and EDS often causes degenerative disc disease, I think leg denervation to one degree or another is a participant more of the time than people understand. A person can have mild denervation without realizing that fact, and I have seen many complaints of neuropathy that could be consistent with my theory.

So I would advise any POTS patient to verify whether or not they have EDS and/or possible spine issues that could co tribute to their dysautonomic decline. It never hurts to check into these things.

UPDATE 2:59 pm
Pulse was 71 semi-supine. Dropped to 43 upon standing. Went to kitchen for drink, ran BP machine (standing still) after that. Two consecutive readings about 2 minutes apart:

1. 126/91 and 100 bpm
2. 115/91 and 115 bpm

Today is a Hemiplegic Migraine (HM) day. These sneaky little bastards mimic a stroke. I probably do not have to describe a stroke to you…it is pretty common knowledge, but just to be thorough:

I am pretty sure you can tell from the comparison above why an HM is so freaking scary and painful. It is one of the most horrific things you can go through, because while you go through the worst of it, you are AWARE. You wonder if this will be it; if you will be this HM vegetable for life, if in fact you live. Which you don’t wish to do if this state is IT. So yeah, all these thoughts are in the slurry brain, and I know I have to work really hard at staying calm during this neurological super storm. We really should start naming them like hurricanes.

NEWSWIRE: Today, the person of Shae experienced category 4 HM ASSHAT. The storm has not yet ended, though the worst has passed with the eye. We await word of full impact…

I’ve tried my opiod (percacet 10-325). Took the edge off my back and joint pain, but did NOTHING for the blasted HM except make the II Gods laugh at me. So I took my clonazepam early (this is an anti-seizure med in the valium family, relaxes muscles in spasm) to counteract the severe knots in my neck which only exacerbate everything. It is a viscous cycle, with one condition triggering another, and another…like dominoes falling in some complex pattern that somehow restarts where it began. You cannot break this cycle…the best hope is to slow it down for a spell. It is a balancing act of figuring out which meds to take, positions to tuck into, etc. The clonazepam also calms my heart a bit (POTS causes me severe tachycardia, sometimes even lying down, especially when in great pain or anxiety…and lemme tell ya, something that acts like a stroke causes a LOT of anxiety, even if you know it probably ain’t a damn stroke, pardon my vernacular). Then I have my memory foam wedge to drain some of the blood throbbing in my head, but not TOO much. Add a coke and chocolate for caffeine, which would make my heart racy if not for aforementioned clonazepam, and you have a slight but important reduction in head and neck and face pain. I am still pretty slurry (my speech) and incoherent feeling as I type this. Believe it or not, it is taking an inordinate amount of time, and I am struggling thru this bit. I am improving, though, and that is good. I have traded some HM off for some additional tachycardia, but you do what you have to do to get by. A little tachy won’t kill me, it is just very uncomfortable.

Hopefully I will be able to sleep this off, soon. But I wanted to share these thoughts while still in the grip of the trade off.

An aside, I did have a remarkable thing happen during this HM. I invented something. Something that I think will help millions of suffering people. I am going to take this thing to market, too. Seriously. It’s top secret until I get a patent in. THIS time, I am going all the way with my idea.

WATCH THIS AURA DEMO FROM THE MAYO CLINIC

Transcript follows…

A migraine is caused by changes in your nervous system. Migraines may progress through four stages: prodrome, aura, attack and postdrome. Not everyone experiences all the stages.

Many people with migraines experience the prodrome phase — subtle changes one or two days preceding the attack. This may include constipation, depression, diarrhea, drowsiness, food cravings, or hyperactivity and irritability. Alternatively, you might not notice any symptoms.

Some people with migraines experience a more distinct migraine warning sign in a second phase, called the migraine aura.

Auras are usually visual but can also be sensory, motor or verbal disturbances. Visual auras are most common.

A visual aura is like an electrical or chemical wave that moves across the visual cortex of your brain. Here, you see a functional MRI of a person during an actual visual aura. The yellow and red colors indicate activation in the visual cortex — the part of the brain that processes visual signals. As the activation spreads during an aura, a person loses normal visual function.

The best known visual aura is called a fortification spectrum because its pattern resembles the walls of a medieval fort. It may start as a small hole of light or sometimes as bright geometrical lines and shapes in your visual field.

This visual aura may expand into a sickle- or C-shaped object, with zigzag lines on the leading edge. As it moves, it may appear to grow. Auras aren’t the same for everyone, so you might also experience bright spots or flashes. Auras are sometimes accompanied by a partial loss of vision referred to as a scotoma. Auras commonly last 10 to 30 minutes.

A sensory aura can occur at the same time as the visual aura, directly afterward or on its own. A sensory aura begins as a tingling in one limb or a feeling of numbness that travels up your arm over 10 to 20 minutes. The sensation can spread to one side of your face and tongue.

Another aura causes transient speech or language problems referred to as dysphasic aura. In the rarest of auras, the limbs and possibly the face on one side of your body might become weak; this is referred to as hemiplegic migraine (this is what I have).

A migraine aura usually precedes the migraine attack but can also occur during the attack. A migraine aura can also occur without an associated headache. The migraine attack itself can last as little as four hours or as long as several days. The attack is followed by a postdrome phase, where you might feel drained or washed out.

This is a wonderful project for awareness! Thank you, Hannah, for putting this together

Excellent piece! I have combo POTS and NCS, as well as EDSIII (which seems to be my underlying cause). The research is really, really important. So is the support. Really, everything she mentions is very important. I am partially bedridden. I swim or hike whenever able. I do short bursts of gardening of housework (these ARE exercise)…short bursts because on a semi-bad day, I can sometimes still get up for 10-20 minutes as long as I keep MOVING CONSTANTLY, then I get back in bed before the pre-syncope turns into syncope. Some days, I only make it to the bathroom, and the fridge to get fluids and pickle juice, which I now chug like a champ and LOVE and even CRAVE.

Excerpt about standing test vs tilt table for testing of POTS:

“Some authors advocate the use head-up tilt table testing as a standardized method to assess an individual’s response to a change in posture [1]. The patient is positioned on a standard tilt table and following baseline measurements of blood pressure and heart rate, the patient is inclined to a 70-degree head-up angle. Blood pressure and heart rate are then measured either continuously or at least every 12 minutes. The orthostatic tachycardia is often measured in a similar fashion to the standing test, with a similar threshold used to diagnose orthostatic tachycardia (an increase of ≥30 bpm) [1]. However, the physiology in response to passive standing on a tilt table (with the legs still) is not the same as“active standing” where the patient must support their own weight and maintain their balance. The latter requires use of the “skeletal muscle pump” and mimics real life, while the tilt table does not. For this reason Streeten et al. use similar criteria for orthostatic tachycardia (>27 bpm), but only with active standing [18]. In a recent study, we compared the orthostatic heart rate response of these 2 methods, and found that the tilt table test was associated with an increased orthostatic tachycardia in both patients with POTS and control subjects [19]. While both tests were sensitive for the diagnosis of POTS with a 30 bpm threshold for orthostatic tachycardia, the stand test had a specificity of 79% compared to only 23% for the tilt table test.”

- Posted using BlogPress from my iPad

Who….ME???? Seriously?

She moved me around, bent my thumb to my wrist, stuff like that, and we went over my list of crappola that i have already been dx’d for, all my symptoms, family medical background, etc. No gene testing yet, tho I would like to. She suggested I go to Vandy clinic, and also ask if they have a collagen clinic. She said there is one in Baltimore at Hopkins, but that would mean more travel, which i did not even have to tell her could be such a damn nightmare, physically (and oh, how I used to love to travel…sigh). She asked me stuff like did i have IBS, lactose or gluten intolerance (yep). When we got to four describable generations of same symptoms and bendy people, it was really evident. She said my skin was not quite stretchy enough to consider vascular type, which was a relief!

Sorry this post is quick and messy, but I am just exhausted from the long day. It rained and thundered and we got drenched.

This is an excellent site…also offers insight into mitochondrial issues. I have some concerns about the latter because of blood work results (low neutrophil, high lymphocyte count) and comorbidity, symptoms, etc. I am hoping the rheumatologist can help with this next week, even if only to refer me to the right place and maybe order additional testing. Going for RA and EDS issues.

I can tell you all about this sort of thing, but seeing it is different. More real. That’s one thing I have definitely learned from having several incurable invisible conditions. People tend to believe in what they can see or feel. What you tell them may be dismissed as exaggeration, or simply not really understood.

So here you go, folks…this is how I roll on an average decent day. On this day, I was only spiking into the lower 140′s, but my resting rate was in the mid 60′s to 70′s. You do the math. If your rate jumps from say 70 to 140, it just DOUBLED. Enough chatter. Just watch. Bear in mind the little gizmo has a bit of a lag in response to my heart rate changes. Here we go…

POTS. It sucks. I’ve had no relief for several days now. Spent all my time curled on my side, trying my best not to whimper in pain. Migraine from hades. Radiculopathy from both my cervical and lumbar/sacral spine….burning pain and spasms. EDS joint issues, GI protestations…can barely eat. Tachycardia even lying down, several times. Probably from the stress of everything else attacking me. Ran out of spoons many days ago. How many incurable things should one person have to bear up to at one time? Seriously. This has gotten old. I am groping in the wiggly dark in between flashes of migraine light, trying to find that snarky humor I always rely on to get through these bouts, but I think it bugged out…said “eff this mess” and bounced.  Wouldn’t you? I would if I could. I am still hoping to drag my sorry tilted self out to the pool for some relief…think I may wait for Jase to get back and have him walk me out there and supervise the official Climbing of the Pool Ladder. Wouldn’t do to faint up there and crack my noggin open on our gorgeous new concrete patio.

Welcome to the Funhouse…if you thought the Jungle was something wait to you get a load of this place.

in the funhouse

“I wish I could just stay at home.”

Those are the words I hear (or see) very often, and they barely conceal the usual barb of envy beneath. Sometimes, I can even pick it out of people’s brains. There’s a tell. Oh, the things they just don’t know. Well, who would not want a life of leisure. you may ask? Well, dang…hell if I know. I’d sure like one, too. Just because I am almost always at home does NOT by any means indicate any sort of leisure. I’d be happy to life swap with you for a week. I guarantee you’ll never envy my circumstances again, after that.

Guaranfrakkingtee.

I am not even going to supply a list of the reasons why in this post. If you really want to know, stick around and read. Suffice it to say that it’s hard to relax and chill when everything hurts and you are fatigued beyond reason and struggle through brain fog so dense that you can hear the foghorns blasting like klaxons. Yeah. Fun.

Occasionally (and by occasionally I mean FAR less often than your average overworked & underpaid but highly misinformed slinger of casually careless assumptions and jealousy who would ever utter such words within earshot of me) I do experience brief bits of something clad in leisure’s disguise, and I make the most of whatever straws of anything good I can grasp. I take nothing for granted. Not ever. What is so incredibly sad to me is the knowledge that those who utter such things likely take nearly everything for granted. How heartbreaking.

Anyway, I needed our sloped rock farm to have a level spot, one that the wisteria could not penetrate. So we went with the idea of the cement pad underneath. The cement pad became a large patio with an upper overlook patio and stepped walk, as well as custom steps so I could actually use and enjoy the antique wrought iron railings that my grandmother had custom made in New Orleans for her mother as a gift a long, long time ago. Thanks to my clever husband, we (the royal ‘we’ – he did the actual salvaging) were able to bring them back to the Rock Farm in Virginia’s serene Shenandoah Valley when we were settling her estate. I’ve had them stored for a few years, imagining a place for them, daydreaming about someday being able to enjoy them in my daily life, a tangible connection to my memories and my roots. As a genealogist and the family historian, such things are crucial to me.

So concrete was poured (thanks to Diddiwick Construction) and ideas exchanged and escalated. The pool was erected. Almost 200 pounds of salt had been dissolved in almost 8,000 gallons of water, perfectly level. We now not only have my saltwater system pool for my swimming therapy, but also several entertaining areas and new garden beds. I am still planting things. The gardening and designing is just as therapeutic, in its own way, as the swimming exercise. Bonus: the results are serene and relaxing, which is also awesome therapy. When you have the chronic illnesses and issues that I have, getting out becomes fairly rare, so I am creating a vacation at home. Cue Aerosmith’s ‘Permanent Vacation’ and rock out or relax…read a book under a sunbrella, roast a marshmallow over the fire pit, or swim until your fingers and toes look like Sun Maid’s best raisins.

Tomorrow (technically today, actually) I have a load of planting to do around the back of the patio, and a few more things in the upper bed. I just have to be very careful about not overdoing things…flares are not fun. On the other hand, when I have a day of feeling well enough to dig holes and shovel mulch, I do as much as I can, because a day or two of mostly bed rest is guaranteed after such exertion anyway…might as well get some punch for my pillows. I am solely responsible for the garden beds, brick border, rock walls, pool installation, lighting installation, and more. Not bad for a potsy zebra girl with bendy, runaway spoons!

Having said all that by way of explanation of the process and the whats and whys, I will leave you with some photos of the Rock Farm Oasis.

I am still fighting through the doctor dating game, so to speak (I’ve been dumped by a few, too…one such incident resulted in permanent serious nerve damage). I have always felt I have cranial instability, and have always had trouble holding my head up. In school, I had to rest it on my hands or arms. In the car, as a passenger, I hold my face up with my hands much of the time. I always have to have my neck ‘packed’ with pillows for support. I have had headaches that lasted YEARS at a time…and have them most days for at least part of the day. The ‘brain on a spike’ headache is the one I believe to be connected to a chiari malformation.

Having Dysautonomia and Thoracic Outlet Syndrome already diagnosed, I already have two major components commonly found with EDS confirmed. Those are not the only ones, either…my spine issues and joint problems are all probably related. I wrote a post earlier about some of my suspicions and the connections, so I won’t repeat everything here (plus I am running low on spoons). There is also already a family history factor established.

The funny thing (as in funny-odd, not funny-ha ha) is that I sometimes STILL wonder if this is all my imagination. Even when I am staring at a grossly obvious MRI, or recovering from syncope. Even when I watch the reading on my BP machine show my tachycardia shooting up to the 170′s or 180′s. Even faced with physical evidence, such as my vastly colorful array of black, blue, purple, green, yellow, and baby-crap-orange spots…some bruises are the size of a thumb tip, others as big as my hand…and I rarely have any idea where they came from. Even with all this evidence, both internal and external, it still feels surreal many times. I think that is partly human nature, maybe, and possibly partly leftover head games from teachers who called me lazy, or the D’s and F’s in gym because I often simply would not ‘dress out’ for class because I knew I couldn’t participate in particular sports (tho I was good at and enjoyed several, they were outweighed by those that I either hated because it hurt so much to do it, or because I was constantly injured doing it). I always did better at individual sports…swimming, gymnastics, dance, hiking, biking, that kind of thing. But I digress.

Watch the video, even if you have no reason to think you should be interested in EDS, itself. Much of this applies to a variety of incurable invisible illnesses, such as MS, Dysautonomia, CFS/ME and so many more.

1. My eldest son just returned from deployment in Afghanistan, and we made a journey that lasted a few days to Camp Lejeune to meet him as soon as he got off that white bus. Awesomeness followed by much needed recovery.

2. My patio and pool are all set up and I have been back into my swimming therapy (in saltwater this time, which is so much better).

3. I have also been working on gardening and landscaping around the patio area. Work on it one day, pay for it in bed two days. Rinse, repeat. Yes, I will post photos.

4. Other people’s drama has been intruding on my serenity. DISLIKE. Not into head games or drama queens, yanno?

5. Pain. Tacchycardia. Dislocating joints. The usual crap, worse in the heat and from stress. Even GOOD stress has it’s price.

I promise to do better about posting. That is all I can manage just now, so good nite:-)

There is still a bit of finishing touch work to do, but I will post photos soon.

Wear it. Live it.

Preview of Contents

Filed under: Autonomic Function, CFS/ME, Disorders of the Spine, Dysautonomia, EDS, Genetic, POTS, Research, Syncope ]]> http://potsville.wordpress.com/2011/08/04/dysautonomia-newsletter/feed/ 0 shaeleighland DysNews http://potsville.wordpress.com/2011/07/29/epic-fail/ http://potsville.wordpress.com/2011/07/29/epic-fail/#comments Fri, 29 Jul 2011 22:09:55 +0000 Shae http://potsville.wordpress.com/?p=1300 ]]> I mean to tell you, I really HATE this stupid POTS right now. I’m miffed on so many levels. Let me back up. We had made an appointment at the vet’s office for The Boo and the baby kitties. That was set for 2:30. So I figured I could go out for an hour or so in the morning (with lots of shade breaks and sitting) and at least put the Gorilla Pad down (that’s what goes under the pool rather than sand – it’s impervious to nearly anything and will make the liner last longer and be softer on the feet), then maybe open the pool crate and find the manual and set the components out.

I read a tip that if you spread the liner out in the sun for a while, the heat makes it more pliable and thus easier to position when the frame is up. So I did those things, and barely made it through just that. I was out there maybe 45 minutes. Plenty of time to spare, since I came in before 1:00 and it only takes a few minutes to get to the vet’s place.

Problem was, I didn’t factor in the time of day. I am not used to being outside in a heat wave (there’s another advisory…been like that all week and last week). Last summer, the old pool (which was barely hanging on) was open since early April, so any time I was outside mid day, it was in the water. Water not only keeps you cooler, it acts as a whole body compression stocking, which is awesome when you have POTS.

pool components

So I wasn’t really cognizant of the nasty effect this foray onto the patio in full bright sun at 99 degrees and who knows what heat index would have on my symptoms. Holy crap, I will never do that again!

I barely made it into the house (had to go UP a full flight of STAIRS to get in!!!!) without blacking out. I grabbed a water, pediolyte and a banana and headed for the bed. My tachycardia was only 148. Usually I can manage better with that…it’s not that high for me. I often got into the 160′s and have been over 180 many times. I had a slight narrowing of the pulse pressure at 100/84, meaning the pulse pressure (rate of blood flow) was 16 mm Hg. Anything below 20 is Not Good. But I have been much lower even than that.

Sometimes this Dysautonomia crap is confusing. There are times when the numbers look terrible, and you don’t feel nearly as horrible as the numbers say you should, and other times the reverse…the numbers are not good, but not so bad to warrant the nightmare you are fighting your way through. I wish I understood this part better so that I could have some kind of control. I HATE not having any real control. Every time I think I have learned some new bit of information that should give me a measure of control, Dysautonomia smacks me down hard, putting my back in my place. DISLIKE!!!

I keep getting back up and spitting in its face, though. No ‘rare incurable disorder’ with a stupid marble mouth name like ‘Dysautonomia’ is gonna keep me down.

So I had to change the vet appointment, which made me feel like a failure. I try so hard to help my husband out as much as I can, and I can’t even do this simple thing, even with my son’s help? I just couldn’t get back up, and had such awful pains in the gut, and nauseated every time I so much as breathed, which itself was a struggle. Then I had that dumb hot-cold thing that I hate. I am just now, four hours later, starting to feel a bit better.

I am crossing my fingers that in another hour, I might could go work on setting up the pool. I want so badly to get back in it. It helps me SO much. I hate waiting. I hate Dysautonomia telling me when I can do things, how I can do them, or that I have to stay in bed until IT decides to let me have a freaking break.

I think I am done ranting for now. I still feel crappy about the EPIC FAIL, though.

I used my new Withings BP machine (works with iPhone and iPad to record your data and save it) after my breathing was a bit more even. Then I got up and took it again after standing still a few minutes. Heart rate shot right up 68 beats per minute in four minutes. My pulse pressure dropped as my Systolic and Diastolic narrowed to a pulse pressure of only 13. I am sure my numbers were much worse outside before I came in to recline and hydrate. My Diastolic was climbing again while my Systolic dropped. I posted my readings screen shot below. I wonder how narrow the numbers were when I was outside enduring the dreaded whoosh?

Withings App

As far as the Withings deal goes, I love it. It doesn’t hurt my arm the way most machines do. It is easier to use. You simply wrap it around your arm and plug it into the iPhone or iPad (the Withings app is free). Turn your device on and it automatically opens the app. You just touch the green start button. I recommend it. It’s really nice to have the data automatically recorded and saved (you can have several profiles). It will email your readings, also. I understand that it integrates with iBP (the app I used to record readings from a standard BP machine) also, but I haven’t tried doing that yet.

I now find myself feeling so frustrated…there are things I want to do, and more importantly, NEED to do, and I have to rest like an invalid. I know it isn’t forever, and when it cools down a bit and I’ve rested, I can get back up and do a little bit more. But not as much as I will want to do, or need to do. I am not whining, just stating a fact. And I don’t want any pity. We all have our issues. I am just sharing the ins and outs of what it is to be Dys Girl, with the hope that it helps others understand what it is like to live with this incurable condition.

Withings BP Readings

I have invisible tattoos facing forward on my deltoids in honor of what Joe Pike taught me, and what I taught myself in the hours of reflection and meditation spent on this concept. These things…having something to look forward TO…are good for anyone, but when you are chronically ill/disabled/fighting the heavy tide of an incurable condition or two, I can guarantee you that it means so much more than this. For many like me, such a thing is, like hope, a reason to keep on keepin’ on, fighting the good fight. And whatever joy we can find is worth more than all that heavy bling loaded up in Fort Knox.

I would like to write more about this, but cannot do it tonight. It’s been a long week, a hotter than hot week (which makes my symptoms worse), and a lot has been going on. Best of all, though, is knowing that very son, Jesse (my oldest son) should be on a flight returning from war. I am hanging on to the view forward. I have waiting a long time for the hug I am anticipating.

I also would like to dedicate today’s theme to my cousin, Barbara, who passed away after a long battle with cancer. She had grit and moxy, and knew joy despite pain. She is another example of courage and I take this moment to honor her spirit and memory.

Here are some still shots of the painful waking moments…

I have been neglecting my blog lately. I have two excuses:

1. Much of the time I have felt so bad I could not even gather the interest to open packages that I’d been excitedly waiting for. And the fatigue…lordy, the CFS has been SO bad lately.
2. When I wasn’t feeling so bad, I was doing things. Gardening, fixing up the house, milking every moment until I was too exhausted to contemplate a quick blog post afterward.

There are so many things I want to do, and it takes so much time to gather the ‘spoons’ and moments of feeling well enough to do those things…and I am not a patient person. I am having to learn to deal with that, but I resent having to deal with that. Maybe I will mature into a stage of not resenting it very often (tho I would look for flying pigs before that will happen).

I’ve had a lot of things to be excited and pleased about, and to look forward to of late, and I am focusing mainly on that. It takes effort, though, to stay focused when Dysautonomia (and other ailments) are constantly making fun of me, poking me, pushing me to my limit and then some. But if you know me, then you know I will never go down without a helluva fight. It will leave marks. Dysautonomia will rue the day it chose me as a playmate. Rue. The. Day.

dreaded morning claw

On the 19th, I go for my rheumatologist appointment. Several things play into this, but I need to know about the EDS, and I need to know if I have RA. I’ve been getting hellacious ‘morning claw’, and that could be from either thing (or both). I am pretty sure I have the EDS. RA also runs in my family…won’t surprise me if I have both. My joints, especially hips and hands, have been really painful. Hard to take. I still garden. I still do as much as I can. My right knee is also doing the poppy razor blade inside thing a lot, and that always makes for good times.

Worst thing is the morning (or anytime I’ve been resting a while). The hands (especially the right one) hurt incredibly badly, and my fingers get stuck. My right ring finger is the worst one. It’s really hard to un-stick that one. I am hoping that when I see the Rheumy on the 19th, I can arrange to get some of those silver ring splints. I think they will help immensely. Can’t get them without having seen a doc about it first.

morning claw from side

morning claw fingers stuck

The Skinny Dysy Girl

skinny legs	concave
ribs anyone?	and the cam adds 10 lbs
hamming off	at least I still have abs

Here it is your chance to PRE-ORDER our cookbook MILITARY CHOW TIME, A TASTE OF HOME FOR OUR HEROES and get a $2 per book discount!! This discount will only be available until July 31st!! It is $15 now and after July 31st it will be $17 per book. It is a beautiful (padded 3-ring binder) cookbook and will be shipped out in early September just in time for holiday gift giving!! So order yours today!!!

The cookbook is comprised of 315 recipes submitted by our members along with dedications to their service members and loved ones. You can submit your order using the following link!

http://www.marinemomsinc.com/OnlineStore.html (scroll down the page to where it says cookbook)

If you would prefer to pay by check you can send your order to:

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Pre-order your cookbook today!

My son, Jesse, currently deployed in Afghanistan.

Read his story at DamianMartaFundraiser.com and consider making a donation…even a small one will help. I hope you will share his link with friends and family. Each of us has the chance to make a real difference in Damian’s life, and if I ever met a person who deserved that opportunity, it’s definitely Damian.

A message from Damian:

Damian

Happy Fourth of July to all my friends and family! I hope you all are doing very well and have a safe and fun holiday weekend planned. As you may know, last year I took a trip overseas for stem cell therapy to treat my Muscular Dystrophy. No one knew exactly what the results would be of the treatment. We were hoping for good things, but the treatment was so new, no one knew exactly what to expect. The doctor who treated me said …that if I see positive results, I should consider a second round of treatment in the near future.

I am pleased to tell you that I have seen significant improvement in a number of areas. After returning home from my treatment last summer, I went back to my neurologist (Dr. Brooks) for my post treatment checkup. During this visit, he put me through some pulmonary function testing to measure my overall respiratory system and how it was functioning. They compared the results to the last time I was tested (February 2009). The results showed an 11% improvement!!! We know for sure that I had deteriorated since February of 2009 so we have no idea what my overall level of improvement is when compared to my ultimate low point. It would be much more than 11%!! A week later, my physical therapist performed some muscle testing. When compared to the muscle testing which was performed three weeks earlier, with the exception of my shoulder muscles, all of the muscles in my arms and wrists showed a 20% improvement. My physical therapist said that she had not seen results like this in such a short period of time!

It’s been nearly a year since my treatment. The improvement that I have seen in my breathing and vocal quality have remained very consistent over the past 12 months. However, the strength that I realized in my upper body has started to deteriorate slightly. My neurologist has recommended that I go back for another round of treatment. The hope is that this additional session will help to solidify my current improvement, while at the same time, promote further improvement throughout my body.

Unfortunately, these treatments are still not covered by medical insurance and they’re extremely expensive. I am again reaching out to you asking for your help. I am asking for you to please consider contributing to a Medical Treatment Fund which will be used to pay for this latest round of treatment. I will be unable to receive these treatments until the necessary funds are raised. I need to raise approximately $20,000. Anything you can do to assist in this endeavor would be greatly appreciated.

There are multiple ways that you can contribute. You can donate electronically through my personal website (www.DamianMartafundraiser.com) or if you would prefer to donate by check, my PO Box is:

Damian Marta
Po box 38644
Charlotte, NC 28278

Thanks again for your love and support. It’s ironic that I’m sending this e-mail on Independence Day weekend because, with your help, this treatment could help me to regain some of my own personal independence. Love to you all.

- Damian Marta (RSVP for the fundraiser on Facebook)

Lower dermatomes

I have ‘combo POTS’ (meaning I have both hyperadrenergic and PD POTS, and in addition I have neurocardiogenic syncope (NCS) so what this site says applies to me very much. My diastolic (bottom number) rises so high that there are times when there is only 1 number difference between top and bottom number (in mmHg, meaning systolic and diastolic are one number apart such as 111/110).

What does that mean? The difference between diastolic and systolic readings is the pulse pressure, meaning the force with which the blood is actually moving through the veins. Any difference below 20 is considered BAD. Mine, when standing, is often less than ten, frequently less than five, often three, occasionally one. These are HORRIBLE.  Think of pulse pressure as being like water pressure in your house. If something isn’t right, your water may barely trickle out of the faucet. A low number like three or one is basically barely a drip from that faucet.

When there is a greater separation between those upper and lower BP numbers, it tends to indicate arterial stiffening and/or inflammation. Conversely, when there is a narrowing (smaller difference where they are close together, like mine get when standing) it would logically indicate the opposite; stretchier arteries. Here is another reason I suspect EDS (Ehlers Danlos Syndrome). I’ll be finding out for sure pretty soon.

So not only do I have to watch my heart rate; I have to pay close attention to my pulse pressure. I used to think if my tachycardia was ‘only’ in the 130′s or low 140′s, I could power through a few tasks…didn’t feel that abnormal. Now I understand that if my pulse pressure is down, I have to quit and lie down, or I WILL pass out. My face tends to get numb and I flush a lot when like this. You might also notice me acting more confused, easily distracted or disoriented…clumsier than normal, etc. If I get to the point where I am slurring my speech, think of this as a disaster warning siren going off.

Combo POTS is  trickiest to treat, because your body can do anything…BP up, down, narrow (that means low pulse pressure/numbers close together) and this means it is harder to select a medication. How do you know what to treat when the numbers are so haywire? When my diastolic tends to most often go quite high (into pre-hypertension or full out hypertension –hypertension is when EITHER systolic or diastolic, or both, gets high) taking something like Midodrine, which raises BP (including diastolic) doesn’t sound like a great thing to do, does it? But we don’t want to lower my BP, because resting rates are often quite low, and often after prolonged standing my BP will start dropping drastically.

Anyway, enough about all that. One thing I do wonder, though, is whether a person can trend more one way or the other as time progresses. In other words, is is possible that I am becoming more hyper than PD? MY diastolic didn’t used to shoot up so high. POTS is a disorder full of whims; it is impulsive and unpredictable.

My hands have been getting so much worse lately. In the mornings, I cannot straighten out some of my fingers, especially on the right hand. It hurts rather badly, and is more than a little off-putting. I’d like to try these silver finger splints, but I can’t until after my appointment, and the earliest appointment I could get is July 20th. Not horribly far from now, but a bit more of a wait than I’d like. But then, how can I complain after procrastinating so long, myself? Then I am going to have to look into this whole Chiari/tethered chord thing, but one bit at a time.

On the plus side, I hung drapes today, and did some arty projects. Only put my pulse ox on once, and my heart rate was at a measly 147. That’s lowish for me when on my feet. I have been slacking about taking readings because I just got totally sick of doing it; totally sick of seeing the numbers shoot up into the 180′s for heart rate, tired of the pulse pressure dropping to a trickle much akin to an annoying drip from a faucet that leaks…slowly.

And these are just some little ones!

I’ve been pushing myself to get things done, and pushing myself to get exercise. Not a lot changes. I am (accused of) becoming fairly skinny. Bony. But I am colorful! You should see the amazingly colorful display of bruises all over my arms and legs. I am a rainbow. No idea how I got most of them. The least little thing leaves a bruise. I have a nice new one the size of a baseball on the back of my calf. I am considering telling the lookie-loos that I am wearing technicolor leopard tights.

The photo on the right is just showing some minor ones…this is fairly usual for me. I often have a mix of these little ones and several rather large ones, all ranging in color from yellow to green to blue to purple to black. Yes, Dys Girl is a rainbow.

Now you can get here via www.DysGirl.com!

This video is a great basic explanation of what the symptoms are like, and also how you can test yourself at home.

via PrettyIll.com Video: POTS and Dysautonomia.

Rosemary is my passion. I love its scent, its coloring, and the fact that it is an evergreen. I would have hedges of it everywhere, if I could…and I might one day! I’ve been propagating the stuff like mad. I’ve done the cuttings (rooting them in water, then planting in little windowsill pots until well established). I’ve also been layering, which is a means of propagation by which one scrapes a thin layer of the outer ‘bark’ away, and pushes that area down into the dirt near the ‘mother’ plant, then cover with a bit of soil and secure with a rock or similar. I have found the layering technique to work fastest. You can also produce larger ‘baby’ plants this way. Once you have a few fairly well established Rosemary plants, you can rather quickly layer your way into a little Rosemary forrest.

Crowding can become a problem. These plants grow fairly big…I have several that are several feet wide and easily 4-5 feet tall without being pulled straight. These started as six inch plants three years ago. Rosemary needs a lot of direct sun, and doesn’t like to be crowded; doesn’t like ‘wet feet’ (keep the soil well drained and do not over water). It dislikes being moved, let alone transplanted, so this becomes the real challenge. All this layering, you find you have to start thinning out, moving some plants. I moved two fairly large ones, and have been worrying over their survival. They have been looking too curly, many brown needles…just really cranky plants! I shook off the dead needles and trimmed the dried out branches away. I think they may make it. It’s been not quite a week, and they are starting to look a bit less traumatized.

So I have begun to think about strategic propagation. The idea being to layer these things in such a way that I can have a more spread out row. Also, I am now layering into pots. Some small pots for inside, other quite large pots that can be out or in.

Yanno, for such hardy plants (the ARP variety does fine in Virginia’s snowy winters and gets through the droughts of summer without too much fuss…a bit of extra watering, but really not as much as you’d expect) these lovelies sure can pitch a fit over change. I guess I can understand…even relate to that. There is a sense of powerlessness when change is imposed upon you, not at your behest. Funny how gardening can wind up as a metaphor (or metafive?) for so many things in my own life. My Rosemary plants give me lots of quiet contemplation and a sense of accomplishment (mostly…I do feel the sting of an occasional loss).

I also play with mint, camellias, lilies, ferns, and many other herbs and plants. I even favor soapworts and wild clover…both make great container plants. My clover returns year after year, even though it looks thoroughly hopeless and dead each winter. By spring, it is thriving and flowering, flowing over the edges of its pot. Soapworts are similar, though they sometimes can be nursed through a winter. I had one container of them outside all winder, and the things remained green to greet the spring. Many folks would call these weeds, especially the clover, but what is a weed but a misplaced plant? The clover and soapworts were completely free…dug up from my own yard and thrown in pots I already had. So if you garden on a budget, or just like to be frugal, don’t discount your friendly weeds, if they are pretty. Some are rather invasive, so keep them contained, especially if you are not sure what they will do. Soapworts spread like crabgrass, for example, and will wander around. Not aggressive the way things like wisteria are, though, but you might not want to plant them in existing beds were they could take over less hardy plants. They do make a nice ground cover in beds where you have primarily large shrubs.

One thing I cannot stand is ‘Virginia Creepy’ (Creeper, that is…the highly invasive native vine that, while sort of pretty in its way, particularly in fall when it turns a very deep red, is so invasive that once you have the stuff, getting rid of it is a nightmare of epic proportions. I don’t think one can ever be entirely rid of it, but if you pull out (and dig out) as much of the root as possible (some roots will be bigger than your wrist!) then watch for any new growth, and nip it right away before it can settle back in, you stand a chance at keeping the upper hand in the battle.

I am not sure why I feel like rambling on gardening, really. Perhaps because it’s what I do a lot of. Perhaps because it is meditative for me. Perhaps because my grandmother always created this magic, secret garden in her yard…and this is close to that time of year when we lost her. I tend to feel such a strong pull, still, to those magic gardens of my youth. I brought back a few of her plants three summers ago; some Rosemary, a lone camellia (wish I’d gotten more) and a few other odds and ends, and I’ve carefully nursed them along, as if in so doing, she is here somehow. I still can’t muster the language to speak of her in the past tense. It feels all wrong in my mouth, though you’d think that by now, I’d be over this, at least. But I won’t think of the sad parts just now. Instead, I’ll keep watering her camellia.

Two poems dedicated to my grandmother from my book, The Weight of Dust (writing as C.E. Laine)…

planter box

Feeling pretty fried, though…exhausted from it all, and dizzier. But got something ‘big’ done, so I am ending the day on a positive note.

Irritatingly, though, I am finding it increasingly hard to type anymore. I guess it is mostly the arthritis in my hands, coupled with good ‘ol brain fog. It’s just so irritating seeing that dashed red underline from the spell checker all the time…something I rarely used to ever see. Sigh.

Neck it feeling it, though, and my lower back is doing its best to kick my butt. That thing is a scrapper, too…it’s doing a decent job of it. I CAN spell ‘pain pill’, no matter how foggy my brain gets.

BT-13A

My point is that I have spent most of my life engaged in activities and interests typically populated not only by men, but by the good old boy network kind of men. The nice older fellas who wink at you, conveying their assumption that your man dragged you out to this hot ramp full of ancient warbirds. I used to enjoy whipping my ‘snoopy tool’ out of my pocket with a return wink as I stated, “and I know how to use it, too.”

I suspect most of you will find this post boring, but I made an excellent soldier. I am STILL ticked off that they didn’t let ‘girls’ go to sniper school. Yes, I like cooking, decorating, vintage clothes and gardening…but most of my other interests are rather masculine by nature. Stuff like motorcycles (yes, I do have my M class) and old machinery. I could go on with lists of stuff, but that would really be a digression.

So back to my point (I think). I overdo it a lot. Partly to prove something to others, maybe…that I am still capable despite disabilities. Perhaps a lot more so to prove that to myself, though. I have always prided myself on my independent nature and my resilience and resourcefulness. MacGuyver WISHES he could be me for a day, yanno? I pride myself on being a tough survivalist who can do an awful lot with very, very little.

So I overdo it (physically) to prove I ‘still got it’. To me, and to anyone who cares to notice (although I am not hung up on other people’s opinions terribly much).  There is one cool aspect to my limitations imposed on my by my various and sundry disabilities and chronic conditions…and that is being forced to be even MORE resourceful in my daily life. It’s all in how you look at it, I guess. I could pine away for the old me, but I don’t bother, because where it counts, I *am* still me. Just because some parameters have changed doesn’t alter this fact. Okay, so I can’t stay on my feet long, can’t wait in lines least I pass out on some greasy floor. I admit this is not only a problem, but a major effing inconvenience. Well, guess what? I can get pretty creative. A little visit with my guys to Extreme Outfitters (oh, how I love stores like that!!!) and I spotted me a great tool….the Basic Black 60 model Walkstool. Oh, yeah! Now I have a lightweight seat I can clip to my belt or whatever, and whip it out if I feel wonky in a line (or wherever).

That’s just one example. If it doesn’t kill me, it made a HUGE mistake, because I will kick it’s ass. There are many ways to accomplish a thing. I spend a lot of my time coming up with alternate methods, but I am okay with that. I sort of like the challenge. I could do without the pain and stuff, but let’s not dwell.

I rather like the shocked looks on peoples faces when I drop my cane, then slide my left shoe off and retrieve it with my toes. So if you see some girl loping along with a cane (sometimes two), don’t assume she’s a gimp, because she might be me…and I know Cane Fu.

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In some ways, my life is much different than 2 years ago, but in other ways, not so different at all. I’ve been sick for all my life to one extent or another (most of my early life it was fairly mild), and have gotten progressively worse over the last 15 years or so…the biggest shocker for me wasn’t as much from the Dysautonomia/POTS as from the leg denervation (permanent nerve damage from a massive herniated disc). I spent a lot of time bedridden, then slowly learning to walk again. That down time, along with the shock to my system of the excruciating pain, the surgery, the recover, the deconditioning…all those things struck me a quadruple whammy in making my Dysautonomia grow incredibly severe. Add in the leg denervation…and, well, things got really ugly.

I lost partial use of my right leg (portions of calf, ankle and foot) and will never, ever, ever be able to do certain things again. Like stand on my toes with my right leg, even. Sounds simple, but can’t even push off to walk normally with that leg. I got pretty depressed about that for a while, thinking about the many things I knew I’d never do again, and the many things I wondered if there was any way I might possibly ever do again. I wondered if I’d be able to walk on the beach…swim in the ocean. I knew I’d never ice skate again, or go horseback riding. I knew I’d never fly again except as an ‘involved passenger’. So many things…could I ever dance again? Do martial arts? I dwelled on these things, and grieved for many of them, like little deaths. Want a little extra icing on the self-pity cake? That leg denervation also meant that my ’2nd heart’ would never work properly, and this, in turn, meant that my Dysautonomia would remain worse than it had been before. And that meant even MORE limitations.

I did the anger thing, the grieving thing, the ‘why me?’ thing, the pitching a fit thing, rinse and repeat. Staring at a ceiling and struggling to get to the lavatory leaves you alone with a lot of thoughts you’d otherwise ignore. As I gradually was able to start making trips up and down the hallway, then up and down the stairs (with a ‘spotter’ in case I lost it), and eventually on to tackling the treck up and down the short driveway, I started to feel more hopeful. Part of it was less cabin fever, and part of it was slowly accomplishing these little things. My husband (then fiance’) walked with me, always ready to grab me if I looked ready to hit the deck, always matching my speed, however slow that was. We worked up to a very slow mile and a half on the paved bike trail. That felt as good as having run a major marathon, silly as it may sound. Then again, standing at the checkout line feels like I am running a marathon (tachycardia).

I started thinking differently. I began to wonder….what if? I began to search for alternate ways of doing things. I got creative, and I started to even enjoy the challenge of *being* creative and resourceful. It became something of a personal competition between me and my disabilities…let’s see if I can outsmart them! I didn’t always succeed, but my win rate steadily improved. And it will get even better. Mark my words.

So I got serious. It was ON.  I took on the challenge of finding ways to really kick its ass. During cool (but not cold) weather, las spring and fall, I was able to hike 4 miles in the mountains…up and down VERY steep hills. Took two canes to do it, but I did it, and at a speed of over 3.5 mph. Not bad for a Dyssy gimp! I also started treading water VERY vigorously and worked my way up to 2-3 hours at a time, swimming up to 5 hours a day. Now, I couldn’t hike and swim in the same day, but that’s ok. The water, by the way, acts like compression stockings for your whole body with hydrostatic pressure in addition to keeping you cooled down, so those things help the POTS quite a bit, and helped me overcome the exercise intolerance. Thats the Catch 527 (there are so many more catches than 22 going on here!) of Dysautonomia…you have severe exercise intolerance and horrible fatigue, but you are supposed to train like an athlete. Huh? Not the easiest thing to do. It requires a lot of trial and error, and you have to find this particular balance. It’s like walking a tightrope with no net. And get this: sometimes the frakking tightrope MOVES on you. Then you have to figure everything out all over again.

I started making it my personal mission to PROVE that no matter how disabled I am, that does NOT mean that I can’t be an athlete, or that I can’t be extremely fit and even buff. None of those things is gonna change the fact that I can’t stand in a checkout line without worrying about passing out cold on the floor. By the way, the WalkStool is great for such moments. If I feel wonky, I pull this lightweight little miracle out and cop a squat. Sweet. Allows me a lot more freedom.  Shae one, Dys ZERO.

The reason I tell you this is that no matter what changes or what you lose, you can fight and you can be resilient and inventive and resourceful. We ‘POTSies (and all sorts of disabilities) are the McGuyverizers of Invisible Illness. We are strong. Some days (weeks even) just suck so badly that it is hard to see that and remember it…but we never give up. Everyone is entitled to setbacks. Perhaps they are even necessary for growth. What’s important isn’t the times I fail, or the times I succumb to that old foul mouthed demon that likes to tell me how gimpy and pitiful I am, but rather the times I pull myself together and smack that demon into next week.

There is nothing wrong with an occasional bit of wallowing, either. I may bitch, whine, wallow, throw a pity party and chuck a spaz (love that saying, Bec H.) until my tissues are too soggy to make confetti. Then I will shake it off. I will go back to kicking Dys in the A$$. I think it is actually a good thing to get a little wallowing out of the system now and then. When you let it out, you let go of it, and then you are free to go back to being the Bad Ass you know you are, ready to Kill Bill.

One thing I need to do is thank my POTsy POSSE. I can’t imagine facing a day without my POTS peeps. The support and understanding in our little group is unparalleled. It’s made my fight that much easier, and given me an outlet to talk about this with folks who also live it, with no fear of being judged. We exchange ideas and coping strategies and all sorts of info, as well…but the biggest thing is having this group of friends who truly have your back, and you theirs, and having that sacred *knowing*. So to all of you, I humbly and inadequately thank you. You all inspire me…and you all ROCK.

I don’t know how much I can improve, or whether the improvements I make will stick around. I suspect it will always be a rollercoaster. Fight my way up a hill…enjoy the view…slide down some (hopefully not too far), and fight up yet another hill. I’ll get tired. Sick and tired of constantly fighting, but I am too stubborn to quick, and no way is Bill (read as:Dysautonomia & fellow disabilitities) kicking MY butt.

And I really do want to prove that point, that you cannot judge a book by its cover. Advocacy and awareness are important to me. I may not look sick. In fact, I may look quite athletic. And under the right set of conditions, I can BE quite athletic. I am physically strong (more in the core and upper body than the legs, but hey…I’m working on it). I have frequent periods of being what people call an ‘invalid’, but by NO MEANS am I ‘in-VALID’.

Definitions of INVALID

1) adj \ (ˌ)in-ˈva-ləd\
: not valid  — SERIOUSLY? Yes, this is listed FIRST!
: being without foundation or force in fact, truth, or law
<an invalid assumption> <declared the will invalid>
: logically inconsequent

2) adj \ˈin-və-ləd\
: suffering from disease or disability : sickly
: of, relating to, or suited to one that is sick <an invalid chair>

3) noun \same as 2\
: one who is sickly or disabled

4) verb \ˈin-və-ləd, -ˌlid
: to remove from active duty by reason of sickness or disability
: to make sickly or disabled

Etymology: Latin invalidus weak, from in- + validus strong — more at valid
First Known Use: 1542

I gotta step up on my soap box for just a minute. Well, maybe I’ll sit on it. Slippery soap box plus syncope equals BAD IDEA. Okay….sitting on soap box, then…I’m just irritated by this ‘invalid’ label. Labels, in general, piss me off to a fare-thee-well. I admit that. I go all rebel on that junk. Here’s the thing, though…NO ONE escapes life without some kind of ‘disability’ or sickness. For some, it does not occur until late in life, but it happens. For others, it may be what people perceive as minor (such as learning disabilities, autism, face blindness/prosopagnosia —all of which I personally also have). Who is to judge what is minor and what isn’t? Until you’ve lived it, you DON’T KNOW. Just as everyone has disappointment, heartbreak, emotional pain in life…those also cannot be compared. Who am I to say mine was worse to experience than yours, whatever yours may be? In our own reality, our worst pain or hardship is very real to us, and should not be devalued. Yeah, technically, some things actually are worse, and we all know that. If you look at those awful, heartbreaking photos of bodies piled like discarded lumber at ‘liberated’ WWII concentration camps, you know in your heart that some things really are worse than others. But within the ‘mainstream’ (whatever that is, however you want to define or label it…that place between the extreme ends) there is, in my view, an equal right to the individual *experience* of pain, whatever it is. And you cannot tell by looking at any person what they have been through, will go through, or what demons they have to slap into next week to keep going. So if you are going to judge or compare, remember that thing about casting stones when you live in a glass house, mmkay? Just sayin’.

I’m still sitting here on this soap box. It’s getting lathered up…I might slide off here in a minute. Or blow bubbles, Lawrence Welk style. Anyway, I also object to the idea that one who is sickly is not strong. Let me point out specific origins:

Etymology: Latin invalidus weak, from in- + validus strong

See what I mean? That translates to WEAK. NOT STRONG. Well, pardon my sailor mouth, but EFF THAT JUNK. First off, there are MANY kinds of strength. Strength of character, of will, of determination…just to name a few. Next, let’s get back to this reality that one can be disabled…an INVALID…and STILL be an athlete; still be fit; still be STRONG. I know that I am. One of my personal agendas in this lifetime is to help change this mistaken perception of what disability means, and to educate others by example as to what the disabled…the INVALID…can accomplish; that we are strong on the inside and can be strong on the outside. And if you can’t see that, then I suggest you exercise your mind a bit so you can overcome YOUR weakness of thought and perception.

Allrighty then. Slippin’ on off this thing. At least I am squeaky clean, right? Rant finis.

For Those Who Served

This is a collage I did of several of my family members (including my husband’s father and Opa) in honor of their service. My son is a Marine serving in Afghanistan right now. I was unable to include everyone…I have many cousins and great uncles, etc.., who also served. This is for them, as well.

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I planted some double-headed soapworts in a hanging basket on the porch. I’ve been working on a new bed out front on the other side of the stone path in front of the mudroom. I am starting with Camellias and will add some ferns and phlox, etc. It will be a big bed, and we will be able to enjoy it from both the living room and the front porch. Also working on plans for three connected planter boxes to ‘hide’ the chain link fence to Sophie’s doggie yard (an L shaped area that runs 80 feet along the cow pasture, and then another 40 feet behind the house). We also have to level a larger area for the new pool, which is supposed to arrive on Tuesday. I am looking forward to those twilight swims!

Here is an informative article on all sorts of treatments for POTS. It describes a wide range of drug treatments, along with pros and cons and how it works in the body. There are also details on non-prescription treatments such as compression hose, supplements and more. You might want to bookmark it, since the information appears to be updated and added to. The site is set up so that if you register, you can add your information to portions of this information, also. I have not tried that, but thought I’d mention it.

Below is an excerpt with a few of my meds (Cymbalta, Clonazepam, Adderall XR). The article contains quite a lot more, but this gives you an idea of the type of info presented. 

Serotonin Norepinephrine Reuptake Inhibitors {SNRI’s}:

• Pros: Ease of dosing, aids central serotonin regulation to help control blood pressure, supress the sympathetic nervous system, treat any existing anxiety/panic symptoms, especially effective in treating hyperadrenergenic states, etc.

• Cons: Contains a “black box” warning for increased risk suicidality, normally used for depression, etc

• Common Side Effects: weight loss, insomnia, drowsiness, decreased appetite, nausea, constipation, increased sweating, and tremors.

• Examples: Effexor {Venlafaxine}, Cymbalta {Duloxetine}, etc.

Benzodiazepines:

• Pros: Can be used on the as-needed bases, helpful for relieving panic symptoms, diazepam in particular is often used in treatment of autonomic crisis, etc.

• Cons: Highly addictive, can worsen hypotension, etc.

• Common Side Effects: difficulty sleeping, drowsiness, dizziness, clumsiness, nausea, and headaches.

• Examples: Klonopin {Clonazepam}, Valium {Diazepam}, etc.

Cental Nervous System Stimulants:

• Pros: Increases vasoconstriction via alpha receptor stimulation, raise blood pressure, etc.

• Cons: Highly addictive, normally used for ADHD, etc.

• Common Side Effects: insomnia, loss of appetite, weight loss, stomach upset, and headaches.

• Examples: Ritalin {Methylphenidate}, Adderall {Amphetamine}, etc.

INTERESTING TIDBITS FROM: THE POSTURAL TACHYCARDIA SYNDROME (POTS): PATHOLOGY, DIAGNOSIS & MANAGEMENT

By Satish R Raj, MD MSCI, Autonomic Dysfunction Center, Division of Clinical Pharmacology, Departments of Medicine & Pharmacology, Vanderbilt University, Nashville, Tennessee.
Indian Pacing Electrophysiol J. 2006 Apr–Jun; 6(2): 84–99.	PMCID: PMC1501099 Published 2006 April 1

Abstract
Postural tachycardia syndrome (POTS), characterized by orthostatic tachycardia in the absence of orthostatic hypotension, has been the focus of increasing clinical interest over the last 15 years. Patients with POTS complain of symptoms of tachycardia, exercise intolerance, lightheadedness, extreme fatigue, headache and mental clouding. Patients with POTS demonstrate a heart rate increase of ≥30 bpm with prolonged standing (5-30 minutes), often have high levels of upright plasma norepinephrine (reflecting sympathetic nervous system activation), and many patients have a low blood volume. POTS can be associated with a high degree of functional disability. Therapies aimed at correcting the hypovolemia and the autonomic imbalance may help relieve the severity of the symptoms. This review outlines the present understanding of the pathophysiology, diagnosis, and management of POTS.

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“Symptoms include mental clouding (“brain fog”), blurred or tunneled vision, shortness of breath, palpitation, tremulousness, chest discomfort, headache, lightheadedness and nausea. While pre-syncope is common in these patients, only a minority (~30%) actually pass out. The chest pains are almost never due to coronary artery obstruction, but are sometimes associated with electrocardiographic changes in the inferior leads, particularly when upright.”

“There is commonly some confusion between neurally mediated syncope and POTS. There is a clinical overlap between the 2 disorders, such that about 30% of patients with POTS also have neurally mediated syncope. Nonetheless, most patients with POTS do not faint.”

I DO faint and seem to be in that 30% of clinical overlap and have both POTS and NMS/NCS. Go figure, right? I have to be the complicated one with combo POTS (hyper and PD, leaning more toward hyper) and NMS/NCS. I’m just lucky like that, yanno? 

“Almost all patients with POTS also have associated fatigue. The reasons are not entirely clear. In some patients, but not all, the fatigue improves with pharmacological control of the orthostatic tachycardia. Some patients with POTS have symptomatic overlap with chronic fatigue syndrome.”

I definitely have the old chronic fatigue issue. Certain medications do assist with the fatigue. The best thing for my fatigue is my Adderall XR. Interestingly, a study was done on chronic fatigue and fibromyalgia patients that demonstrated a significant improvement for many patients who also took stimulant ADHD medication, such as Adderall [Young JL, Redmond JC. Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study. Psychopharmacol Bull; 2007;40(1):118-26. PubMed PMID: 17285103]. For me, it is definitely true. Without that medication, I am rarely able to function much at all. I also find that caffeine helps me somewhat with my POTS symptoms. In speaking with other potsies, some have success with caffeine, while others cannot touch the stuff, so it seems to depend greatly on the type of POTS.

“Many patients complain of significant exercise intolerance and extreme fatigue.Even activities of daily living, such as bathing or housework, may greatly exacerbate symptoms with resultant fatigue. This can pose significant limitations on their functional capacity.“

Um…yeah. I’d say it is pretty limiting, all right.

“The disorder primarily affects women of child-bearing age. The female:male ratio is 4:1. The reason for the strong female predominance is not known, but it should be noted that orthostatic tolerance is reduced in normal healthy females. Other disorders such as autoimmune diseases and irritable bowel syndrome are seen commonly in patients with POTS, and also have higher prevalence in women. Patients frequently report that their symptoms began following acute stressors such as pregnancy, major surgery, or a presumed viral illness, but in others cases, symptoms develop more insidiously. About 80% of female patients report an exacerbation of symptoms in the premenstrual phase of their ovulatory cycle. Gazit et al. have also reported an association between joint hypermobility and POTS. Many patients have bowel irregularities and have been co-diagnosed with irritable bowel syndrome, and some have abnormalities of sudomotor regulation (sweating).”

Yep. I have those IBS and sudomotor/temperature regulation issues. Although I was born with this condition, I will say that triggers like those mentioned have caused incremental increases in severity over the years, or have caused severe flare-ups. Some other research I have read lately has been looking at the probability of there being an autoimmune aspect to Dysautonomia, which makes sense to me.

“The clinical picture of POTS can be confused with pheochromocytoma because of the paroxysms of hyperadrenergic symptoms. Patients with pheochromocytoma are more likely to have symptoms while lying down than POTS patients, and often have much higher plasma norepinephrine levels. The diagnosis of pheochromocytoma is made by assessment of plasma or urinary metanephrines.”

“Patients with POTS are sometimes clinically diagnosed as having anxiety disorders such as panic disorder. Indeed, patients demonstrate elevated scores on the Beck Anxiety Inventory (23±10 vs. 7±8; P<0.001), a commonly used instrument that quantifies the magnitude of anxiety symptoms. Unfortunately, this questionnaire includes somatic anxiety symptoms (such as  palpitation) which can result from a hyperadrenergic state such as is seen in POTS. When a newer, cognitive-based measure of anxiety (the Anxiety Sensitivity Index) is used, there was a trend toward less anxiety in the patients with POTS than the general population (15±10 vs. 19±9; P=0.063). Thus, much of the anxiety attributed to patients with POTS might be due to a misinterpretation of their physical symptoms.”

I have definitely suffered anxiety symptoms all my life, physiologically, even when there is no ‘mood’ associated with it, or any reason for me to think I should feel anxious. I know this one is hard to explain, and probably does not make sense, but I attribute it to my body saying, “Hey, you’re anxious!” when I otherwise would not be, if not for the Dysautonomia. Sort of like false anxiety…the physical responses are there, but the emotional state did not trigger them; malfunctions of the ANS (autonomic nervous system) were the cause. I also think this is probably a much more prevalent feature of those who have hyper or combo POTS, and I suspect an adrenalin connection. I also wonder at associated amygdala involvement.

“We did find that patients with POTS often have diminished attention and concentration compared to matched healthy volunteers. Using the Inattention score from the Connors Adult ADHD Rating Scale, the patients with POTS scored significantly higher than did the normal control subjects.”

This is very interesting to me, as I have also been diagnosed with ADHD. This presents a lot of interesting questions and scenarios of the chicken vs. egg variety. Also, I wonder if more people with ADHD also have some form of ANS disorder? Is there an overlap of some kind here? I do know that my ADHD medication (Adderall XR 30 mg) greatly helps my POTS symptoms. It helps with the ‘brain fog’ and especially with the fatigue. On that note, a study was performed showing that Chronic Fatigue and Fibro patients saw some significant relief of fatigue symptoms with ADHD stimulant medications such as Adderall Young JL, Redmond JC. Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study. Psychopharmacol Bull; 2007;40(1):118-26. PubMed PMID: 17285103]. I know it works for me!

“A striking physical feature of POTS is the dependant acrocyanosis that occurs in 40-50% of patients with POTS (my personal photos are below). These patients experience a dark red-blue discoloration of their legs, which are cold to the touch. This can extend from the feet to above the level of the knees. The reasons underlying this phenomenon are not clear. The current data suggest that the problem is not due to increased pooling in the venous capacitance vessels, but rather due to decreased blood flow in the skin.“

Whatever the reason for my ‘purple people eater feet” is, this is one of the few drastically visually obvious signs to others that something REALLY IS WRONG with me. This is a mostly invisible illness, so the drama of the technicolor limbs is actually sometimes welcome as a means of evidence to others (said in my snarky voice). Here are a few pictures of my own feet in various stages of discoloration. You will note that my right (your left view) foot’s toes are splayed out quite a bit…this is from permanent nerve damage following a herniated disc. This leg dennervation was one of the biggest contributing triggers to my current state of Dysatonomic severity. Anyway, on with the photos…in the last one, you can see where I pressed with my fingers there is a large white patch.

“Some patients with POTS have co-existent complaints of episodic flushing. In about half of these cases there is an associated mast cell activation disorder. This can be diagnosed by collecting urine from individual 2-4 hour voids following a severe flushing spell for determination of methylhistamines.”

I definitely have the flushing. My face flushes drastically, as does my chest, more drastically on the right half. I probably ought to have this test. I have wondered about the mast cell activation disorder thing many times. My flushing episodes often resemble the typical Lupus ‘butterfly rash’ on my face. I have had issues with flushing all my life, but it is much worse, progressively, along with the other factors of Dysautonomia. I also tend to have very strikingly dark acrocyanosis. Mine tends to look much worse than almost every ‘example’ photo I have thus far seen (some of mine are above). 

“Some authors advocate the use head-up tilt table testing as a standardized method to assess an individual’s response to a change in posture…. However, the physiology in response to passive standing on a tilt table is not the same as “active standing” where the patient must support their own weight and maintain their balance. The latter requires use of the “skeletal muscle pump” and mimics real life, while the tilt table does not. For this reason Streeten et al. use similar criteria for orthostatic tachycardia (>27 bpm), but only with active standing. In a recent study, we compared the orthostatic heart rate response of these 2 methods, and found that the tilt table test was associated with an increased orthostatic tachycardia in both patients with POTS and control subjects. While both tests were sensitive for the diagnosis of POTS with a 30 bpm threshold for orthostatic tachycardia, the stand test had a specificity of 79% compared to only 23% for the tilt table test.“

Because of my spine issues, I was not tested with the tilt table, which would have likely caused further injury. This business about active standing makes a lot of sense to me as a preferred and probably more accurate diagnostic tool (not to mention simpler) than the torturous tilt table.  

The article concludes with a lot of detailed information on subtypes and treatment, and is essential reading for anyone who has POTS. The above excerpts and my remarks were just a few of the things that I found of specific interest. I would continue through the subtypes, but I’ve run tragically low on spoons.

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Address for correspondence: Satish R Raj MD MSCI, AA3228 Medical Center North, Vanderbilt University, 1161 21st Avenue South Nashville, TN, 37232-2195. E-mail: satish.raj@vanderbilt.edu

This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

The Cymbalta has made me more nauseated the first few days when I started it and when I stepped up the dosage from 30 mg to 60 mg, so I am prepared for a couple of days of extra nausea now and then in a week when I go up to the target does. POTS causes nausea, anyway, so I am used to it. The extra does suck for those first days, but was worth it thus far.

I also came across a cool natural product that helps relieve nausea naturally using acupressure. They are called Sea Bands; little wrist cuffs with a nodule that you place over a pressure point in your wrist that helps with the symptoms. They really do help. Bonus: I can pretend to be Wonder Woman. Muahahaha!