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. 1. Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly. 2. Appears to have more viral illnesses than general population. 3. Aches & Pains 4. Aching neck & shoulders 5. Acid Reflux 6. Anxiety (Non-mentally induced/uncontrollable) 7. Arrhythmias 8. Bladder dysfunction 9. Bloating 10. Blood pooling in limbs (legs feel heavy & appear mottled & purple in color) 11. Blurred Vision 12. Body temperature regulation difficulty 13. Chemical sensitivities (air fresheners, bug spray, some perfumes, hairsprays, deodorants) 14. Chest discomfort &/or pain 15. Chills 16. Clamminess 17. Cognitive impairment (difficulty concentrating, brain fog, or word recall) 18. 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. 19. Constipation 20. 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. 21. 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. 22. Delayed gastric emptying 23. Depression 24. Diarrhea (with alternating constipation) 25. Distorted depth perception resulting unsteadiness. Often appears "clumsy" or excessively cautious when climbing stairs, reaching for object, etc. 26. Dizziness

27. 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. 28. Easily over-stimulated (excited, nervous, startled, or scared) 29. Excessive sweating 30. Exercise Intolerance 31. Excessive Fatigue (which can be disabling) 32. Feeling "wired" 33. Feeling cold all over 34. Feeling full quickly 35. Flushing 36. Food allergies/sensitivities 37. Frequent "bumping into things". Attributed to a combination of visual & depth perception deficits. 38. Forgetfulness 39. Generalized weakness 40. Headaches 41. High blood pressure 42. Hyperreflexia (overactive physiological reflex) 43. Hyperventilation 44. Hypovolemia (decrease in the volume of the circulating blood) 45. Inability to concentrate or remember (frequently referred to as "brain fog") 46. Increased Emotions 47. Intelligence normal when receiving adequate cerebral perfusion. 48. Intolerance to heat/cold 49. Irregular menstrual cycles 50. Irritability due to decreased blood flow to brain 51. Lack of Low/High Blood Sugar Warning 52. Light Sensitivity 53. Lightheadedness 54. Loss of appetite 55. Loss of sweating 56. Low Back Pain 57. Low blood pressure 58. Low blood pressure upon standing 59. Migraines 60. Mild or severe anemia 61. Muscle aches &/or joint pains 62. Myofascial pain (regional muscle pain) 63. Narrowing of upright pulse pressure 64. Nausea 65. Nerve Pain

66. Neuropathic pain (chronic pain by damage or disease of peripheral/central nervous system.) 67. Noise Sensitivity 68. Numbness or tingling sensations 69. Overall slowing of metabolism is common. Increased metabolism 70. Palpitations (rapid/violent heartbeat) 71. Panic (Non-mentally induced uncontrollable) 72. Polydipsia (excessive thirst) 73. Postprandial hypotension (low blood pressure after meals) 74. Pupillary dysfunction such as: Blurred Vision & Tunnel vision 75. Restless leg syndrome 76. Seizures (Anoxic/convulsive seizures, not epileptic) 77. 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. 78. Sexual Difficulties 79. Shortness of breath 80. Sleep pattern problems (Need to sleep 12-14 hours perform to simple activities of daily living) 81. Sluggish Pupil Reaction Difficult to drive at night. 82. 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. 83. 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 persons body will return to parasympathetic mode, whereas ours don't. We get trapped in overwhelming anxiety which is due to the dysfunctional autonomic system. 84. Sweating Abnormalities 85. Swollen nodules/lymph nodes 86. Syncope/Fainting/near syncope 87. Tachycardia (rapid heart rate) 88. Taste & appetite changes. Fruits & other acidic foods may taste extremely acidic. Foods may taste different if patient is tired, stressed, or post-syncopal episode. 89. Tremulousness 90. Trouble Breathing 91. Vertigo 92. Vomiting 93. Weakness & weakness in legs 94. Weight gain regardless of diet modifications. 95. 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. 1. 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. 2. 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. 3. Sensory stress - chronic pain, loud noise, constant stimulation from external sources. 4. Metabolic stress - syndrome x, too much exercise, ph, blood sugar, hypoglycemia. 5. 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. 6. Immune stress - food allergies or sensitivities, inflammation, autoimmune disorders. 7. Endocrine & neurotransmitter stress - adrenal glands, cortisol, thyroid disorders, hormonal imbalances, menopause, andropause, insulin, dopamine, serotonin, norepinephrine, GABA etc.

8. 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. 9. Infectious stress - Candida, parasites, viruses, bacteria, lyme etc. 10. Oxidative stress - veins & arteries, emphysema, lack of fresh air, sleep apnea, phase 1 & phase 2 detoxification. 11. Energetic stress - electromagnetic fields from cell phones, electronics etc., geopathic. 12. 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. Its 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, longterm 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. Its 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. Its 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 grantedsomething 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 dont 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 isnt in the same part of the day (if youre going out in the afternoon, shower in the morning or evening). 1. Make sure you have eaten recently, but not too recently. If you havent eaten, you shouldnt shower, unless you dont mind passing out. If you have just eaten, wait at least a half hour. If you dont, your blood will go to your abdomen to digest your food, & not to your brain where you need itnot a good thing when your circulating blood volume is much lower than other peoples. Also make sure you have taken your meds. 2. Drink a glass of water. This will help keep your blood pressure up & keep you from getting dehydrated during the strenuous task youre about to undertake. 3. Lay out the clothes youre 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 youre going to put them on. If you dont, brain fog may later prevent you from easily figuring out what you need to put on first. 4. Rest for a few minutes. You may not be tired at this point, but you will need all your energy for your shower. 5. Walk to the bathroom. This is considered a separate step because of all the energy it takes. 6. Turn on the water & make it as cool as you can stand it. If its too warm, you increase the risk of passing out. 7. 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 dont overdo it too early. 8. Washing may take several steps. You need to wash part of your body, rest, wash another part, rest, & repeat. 9. Make sure you check your heart rate a few times throughout your shower. If its 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 its down to a more reasonable speed before continuing. If you dont, you might pass out. 10. 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. 11. Rinse your hair. Again, only one arm up at a time. 12. 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. 13. Put in your conditioner & rinse, following the same steps & rules as for washing your hair. 14. 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. 15. Rest until you are feeling ok to stand up. 16. 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. 17. Get out slowly. Check your heart rate. If its 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 isnt too fast but youre not feeling well, you may feel better by just sitting down. 18. Dry off. As with washing up, this might consist of several steps as you rest periodically. 19. Comb or brush your hair. Do this while youre still in the bathroom so you can limit the number of trips to & from the bathroom. Dont 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.

20. This is not the time to use things like hair dryers or curling irons. Its too soon after your shower, & if you try you will probably pass out. Rest for a minute, until youre sure youre ok to walk back to your room. 21. 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. 22. Sit up slowly, & drink another glass of water. This will help raise your blood pressure & give you a boost. 23. Get dressed slowly. Dont 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 doesor who has any other chronic illnesskeep 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.