by Margaret Rose Lombardi
Being adequately hydrated isn’t just an important part of physical health for people with POTS and other forms of dysautonomia. Without proper hydration, anyone's body can experience severe damage and even death. Knowing the signs and symptoms of dehydration for yourself and your family is critical during the summer months.
Feeling thirsty is the least reliable way to tell if a person has enough fluid in their body. Many people don’t feel thirsty until they are already dehydrated.
Not urinating at all, urinating infrequently, or urinating very small amounts
Dark colored urine with a strong odor
Feeling confused or acting “spaced out”
In Babies and Small Children
Dry mouth and tongue - lips sticking together
No urination or wet diapers for three hours
Extreme tiredness or irritability
Eyes and cheeks looking “hollowed out” or “sunken”
Indentation of the soft spot on top of the head (infants)
For both children and adults, dehydration is possible in hot weather, during exercise, and during illnesses, particularly if the person has diarrhea, vomiting or fever.
Dehydration can cause extreme damage to the healthiest of people, including:
Heat stroke, cramps, and heat exhaustion
Urinary and kidney damage - including kidney failure
Seizures - potassium and sodium (electrolytes) can become too low causing seizures. Electrolyte imbalance can also cause involuntary muscle contractions and unconsciousness.
Hypovolemic Shock - low blood volume causes a drop in BP and the amount of O2 in the body.
Why does dehydration affect POTS patients more than the average person?
For POTS and many other dysautonomia patients, the mechanism that regulates BP and HR when a person stands up is dysfunctional (BP goes down, HR goes up). Water intake counteracts this response, helping the symptom that leads to dizziness, pre-syncope, and syncope. Water intake can help to minimize BP’s reaction to standing in most patients.
In understanding the effect increased water intake can have on the symptoms associated with POTS and Dysautonomia, it is easy to understand how drinking just an average amount of water isn't enough and won't necessarily prevent symptoms.
It is extremely important, truly critical to understand that although the results of dehydration will be similar for POTS patients as it is for the healthy person, the steps to becoming dehydrated should not be underestimated. Excessive sweating is another of the functions of the autonomic nervous system that is dysfunctional in a person living with dysautonomia. Because of this, a person with these disorders can dehydrate regardless of the outside temperature. Couple this symptom with the body’s reaction to high summer heat and a potentially dangerous picture emerges.
The recommended way most POTS patients protect themselves from dehydration is by maintaining a combination of salt intake and electrolyte-rich drinks - all under the supervision of their physician. This is a crucial part of management that can’t be ignored, especially during the lazy, hazy days of summer.
The contents of this Web page are provided for informational purposes only and should not be used as a substitute for professional medical advice, diagnosis or treatment. Please keep in mind that new treatments are continually emerging and some of the older treatments may rarely be used.
Your physician may prescribe medication to decrease the symptoms of POTS. Doctors admit that treatment can be a challenge and that no single therapy is uniformly successful. Medications that are useful in some patients may have no effect in others (Jacob & Biaggioni, 1999). Occasionally medications can worsen symptoms. Medications used to treat POTS include the following:
Anti-arrhythmic drugs, such as disopyramide (norpace), have been used to treat POTS patients. However, studies have shown that some anti-arrhythmic drugs may increase the risk of death, and they are usually used only to treat life-threatening arrhythmias.
Benzodiazepines, such as Clonazepam (klonopin) or alprazolam (xanax), are not used as a first-line of treatment and can worsen tachycardia and hypotension. However, they may be helpful in select patients. Klonapin has been shown to be effective in the treatment of some patients with neurally mediated syncope (Kadri, Hee, Rovang, Mohiuddin, Ryan, Ashraf, Huebert & Hilleman, 1999). These drugs are central nervous system depressants. They are thought to enhance the effect of gaba, an inhibitory neurotransmitter. Benzodiazepines should be used with caution, as they are highly addictive. Some physicians do not advocate their use.
Beta Blockers are especially useful in those with elevated norepinephrine levels, beta-receptor supersensitivity and a hyperadrenergic state. Beta blockers can exacerbate hypotension and are not well tolerated by some dysautonomics. Beta blockers need to be used with caution, as they are known to reduce plasma renin activity. Research shows that hypovolemic orthostatic intolerant patients commonly have inappropriately low levels of plasma renin activity (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997). Reduced plasma renin activity may be an important pathophysiologic component of the syndrome of orthostatic intolerance (Jacob et al., 1997). Hence, some POTS patients may have low plasma renin activity that is contributing to their disorder. Beta blockers may further lower plasma renin activity in these patients. Therefore, the use of beta blockers in some hypovolemic patients may be counterproductive.
Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Beta blockers may trigger mast-cell activation.
Cerefolin is a vitamin supplement that may help patients combat fatigue and feel more alert.
Clonidine (Catepres) is a centrally acting alpha-agonist agent. Clonidine inhibits sympathetic outflow (Grubb & McMann, 2001, p. 117). It can stabilize heart rate and blood pressure in patients with post-ganglionic sympathetic involvement (Gaffney, Lane, Pettinger & Blomqvist, 1983). Clonidine will actually display a vasoconstrictive effect in these patients.
Clonidine is started at 0.1 mg a day and titrated upward (Grubb, Kanjwal & Kosinski, 2006). It is available in a long-acting patch form.
DDAVP (Desmopressin) is used to help patients retain water. DDAVP can raise blood pressure and seems to be especially useful in lessening morning hypotension. It is a man made copy of the anti-diuretic hormone vassopressin. Vassopressin and DDAVP stimulate the kidneys to concentrate urine.
Droxidopa (Northera) Droxidopa, a norepinephrine (NE) precursor, improves symptoms of neurogenic orthostatic hypotension (nOH) by replenishing NE levels. Central NE effects are poorly described but may offer potential benefits given the pathophysiologic progression of alpha-synuclein related disorders.
Erythropoietin raises blood pressure and red cell mass. Red blood cell volume has been found to be low in POTS patients (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Erythropoietin is also a potent vasoconstrictor and is quite useful in the treatment of orthostatic disorders (Grubb, Kanjwal & Kosinski, 2006). There may be an impairment in erythropoietin production and/or function in some individuals with POTS. Erythropoietin reportedly works in 80% of patients (Grubb, 2002). One study showed that erythropoietin administration led to dramatic improvements in some patients with orthostatic hypotension (Hoeldtke & Streeten, 1993). However, a later study of (only) 8 patients with orthostatic tachycardia reported that erythropoietin did not help the tachycardia (Hoeldtke, Horvath & Bryner, 1995). Erythropoietin is not commonly used because it has to be injected and is expensive. Procrit is a common medication that increases erythropoietin, which in turn increases red blood cell mass. Patients treated with erythropoietin may need iron supplementation as their hematocrit rises.
Prior to starting erythropoietin, a complete serum blood count (CBC) as well as a serum iron, total iron binding capacity, and ferritin level should be obtained by one's physician (Grubb, Kanjwal & Kosinski, 2006). Erythropoietin can be employed as long as the hematocrit (HCT) is less than 50, and patients appear to achieve the best hemodynamic effect when the HCT is in the low to mid-40 range. The usual starting dose of erythropoietin is 10,000 units injected subcutaneously once weekly, and it usually takes 4-6 weeks to see the full effects of this medication (Grubb, Kanjwal & Kosinski, 2006). Patients should have their HCT checked monthly to make sure it is below 50.
Florinef (Fludrocortisone) increases plasma volume. It helps the body to retain salt and water. It also sensitizes blood vessels so that they can constrict more easily (Haran, 2004). Some doctors administer salt tablets with florinef. This is because the effectiveness of Florinef depends upon salt intake. Florinef can deplete potassium and magnesium and supplements may be required. Florinef increases intracranial pressure and should not be used in patients with hind brain compression. Numerous symptoms of sympathetic overactivity are enhanced by Florinef and some people develop severe headaches as a result of treatment (Schondorf & Freeman, 1999). Florinef is a mineralocorticoid and, like beta blockers, can reduce levels of plasma renin activity (Jacob et al., 1997). Reduced levels of plasma renin activity correlate with the hypovolemia observed in some POTS patients. Florinef may be a counterproductive treatment in these patients.
Usually, POTS patients are prescribed 0.1-0.2 mg of fludrocortisone daily. The dose should never exceed 0.4 mg orally each day as adrenal suppression may occur (Grubb, Kanjwal & Kosinski, 2006).
Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects.
Labetalol is sometimes used in POTS patients because it induces both alpha- and beta-blockade. Dosages of 100-400 mg orally twice a day may be employed (Grubb, Kanjwal & Kosinski, 2006). Carvedilol works in a similar fashion to labetalol and is also sometimes employed as a treatment for POTS.
Methyldopa is helpful in select POTS patients (Grubb, Kanjwal & Kosinski, 2006).
Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myasthenia gravis, but is now sometimes being used to treat POTS patients (Grubb, 2002). Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS. Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary (Grubb, Kanjwal & Kosinski, 2006).
Motrin (Ibuprofen) or Indocin (Indomethacin) might be beneficial treatments for patients with postprandial hypotension (Hilz, Marthol & Neundorfer, 2002). Postprandial hypotension refers to low blood pressure occurring after meals. Motrin and indocin block the blood pressure lowering effects of prostaglandins (Hain, 2001). Studies have suggested that nonsteroidal anti-inflammatory drugs may also lower one's risk of developing Alzheimer's disease(in t' Veld, Ruitenberg, Hofman, Launer, van Duijn, Stijnen, Breteler & Stricker, 2001). However, long term use of nonsteroidal anti-inflammatory drugs can have serious side effects.
Phenobarbital is a central nervous system depressant. It can be useful in the hyperadrenergic form of dysautonomia. However, phenobarbital is a barbiturate and people can become addicted to this drug. Barbiturates can also cause fainting (Grubb & McMann, 2001, p. 109).
Prednisone, plasma exchange or intravenous gamma globulin may be used in patients who are in the acute post-viral phase of the illness (Low, Schondorf, Novak, Sandroni, Opfer-Gehrking & Novak, 1997, p. 694). These treatments are most likely to be effective in patients displaying evidence of an acute autonomic neuropathy.
Saline has shown to be very beneficial in decreasing POTS symptoms. It is an inexpensive treatment with few side effects. However, saline must be given through an IV, which is time consuming and may require trips to the doctor's office. Some of the most severely affected patients report having a peripherally inserted central catheter (PICC line) inserted so that IVs can be administered at home. However, some physicians do not believe the benefits outweigh the possible risks associated with a PICC line.
Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.
Sleep medications are used by some POTS patients. A number of patients have significant sleep disturbances (Low, 2000). Some patients report successfully using natural alternatives to sleep medication. Herbal remedies should be used with caution and under a physician's supervision, as there are known risks with some OTC sleep aids. For example, the FDA has issued warnings regarding Kava Kava and melatonin supplements have been shown to worsen orthostatic intolerance.
Stopping menstruation through the use of birth control pills has reportedly helped some patients feel better. Many women report a worsening of symptoms around menstruation. Stopping menstruation is somewhat controversial, and not all physicians advocate it.
Vasoconstrictors such as ergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline and ritalin improve venous tone which decreases pooling blood.
Midodrine is particularly useful in patients with peripheral denervation (Low, 2000). Midodrine is usually started at 5 mg orally three times a day and can be titrated up to 15-20 mg orally four times a day, if necessary (Grubb, Kanjwal & Kosinski, 2006). Midodrine can be used on an as needed basis. Theoretically, continuous use of midodrine could result in constriction of blood volume due to chronic sympathetic activation (Jacob & Biaggioni, 1999).
Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007).
Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day (Grubb, Kanjwal & Kosinski, 2006). A long-acting injectable form has also been developed.
Ephedrine is not often used due to its short half-life and undesirable B-adrenergic actions (Jacob & Biaggioni, 1999). Ephedrine can cause tachycardia.
Theophyllineis primarily used in asthma patients. One of its effects is to increase vasoconstriction, therefore theophylline is sometimes used to treat dysautonomia (Grubb & McMann, 2001, p. 116).
Ritalin increases peripheral vascular resistance via alpha receptor stimulation (Grubb, Kosinski, Mouhaffel & Pothoulakis, 1996). Ritalin is prescribed by some physicians, but can be addictive.
Wellbutrin (Bupropion) is a central nervous system stimulant. It is a dopamine agonist and also a weak blocker of the neuronal uptake of serotonin and norepinephrine. Wellbutrin is not habit forming and works immediately. Wellbutrin can sometimes be used to combat the fatigue that plagues POTS patients.
There are also many non-pharmaceutical methods to decrease the symptoms of POTS. These include the following:
Butcher's broom may lessen orthostatic hypotension in some patients (Redman, 2000). Studies show that butcher's broom does not cause supine hypertension and that it can alleviate the worsening of symptoms in hot environments. Butcher's broom is a vasoconstrictor that reduces capillary permeability. Butcher's broom has been used as a diuretic, so patient's need to be especially cautious about taking it. Butcher's broom should only be taken under a doctor's supervision.
Changing eating habits and diet can help relieve hypotension. Patients should eat frequent small meals instead of three large meals a day. This will help reduce the amount of blood needed for digestion. Hence, more blood will be available for the brain and heart. Refined carbohydrates, such as white flour and sugar, can exacerbate hypotension (Mathias, 2000). There are patients that report a worsening of symptoms when eating certain foods, such as dairy products. It is important for each patient to identify and avoid their food triggers.
Cooling devices can help POTS patients. There are many different types of personal cooling vests available that may help patients tolerate hot environments.
Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting.
Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. Many insurance plans will cover the cost of prescribed compression stockings if purchased through a medical supply company. They are also available without prescription through many online retailers.
One POTS patient has found relief of symptoms by wearing a G-suit, and she has created a website that details her experience with this compression device. Her website begins "G-suits are pants that can save the life of a fighter pilot. G-suits are pants that have 'saved' my life too." Click here to visit this patient's informative website.
Correcting anemia has been shown to improve orthostatic tolerance (Low, 1994).
Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).
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. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006).
Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances (Low, 2000). 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 to feel better. Many POTS patients report Gatorade or electrolyte solutions to be particularly helpful. Drinking water has been shown to moderately reduce orthostatic tachycardia in patients with idiopathic orthostatic intolerance (Shannon, Diedrich, Biaggioni, Tank, Robertson, Robertson & Jordan, 2002). Drinking large amounts of water helps to raise blood pressure (Jordan, Shannon, Grogan, Biaggioni & Robertson, 1999). Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Some patients report that drinking water before getting out of bed in the morning helps decrease symptoms. Physicians suggest patients drink eight eight-ounce glasses of water daily (Low, 2000). Patients should not drink excessive amounts of water because doing so 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.
While normal subjects reduce urinary sodium excretion on assumption of upright posture, patients with orthostatic intolerance do so ineffectively (Vanderbilt University Autonomic Dysfunction Center, 1999). Impaired renal sodium conservation can contribute to hypovolemia (Streeten, 1999). One study found POTS patients to have inappropriately low levels of renin and aldosterone, two hormones that promote sodium retention and increase plasma volume (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Renin and aldosterone are both regulated by the kidney.
Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. A number of patients find salt tablets and/or electrolyte solutions to be helpful. Some physicians suggest patients who benefit from salt take in 10-15 grams daily (Low, 2000). Other physicians suggest between 3-5 grams of salt per day (Grubb et. al., 2006). Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium.
Licorice root has been used as a remedy for various disorders throughout history. Itcan sometimes be used as an alternative to Florinef. Licorice root does have some side effects, and patients should get a physician's approval before taking it.
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. Magnesium deficiency can cause many of the symptoms associated with POTS. Excessive norepinephrine levels can deplete magnesium levels. Magnesium should be used cautiously as it can lower blood pressure.
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 the sock closed at the end. Heat the rice filled sock in the microwave for a couple of minutes until warm. Be careful not to overheat, and be cautious of hot spots. The rice will hold heat and provide long-lasting relief of headaches.
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 has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). 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.
Wearing ankle weights compels the leg muscles to work harder, thereby forcing pooling blood back into the upper body. It is especially helpful to put the weights on before getting out of bed in the morning. Ankle weights should not be worn continuously, as the body will then adjust to the extra weight and they will no longer be effective. Ankle weights should be used with caution, as they can possibly interfere with one's normal gait which can cause injury.
It is important for one to consult a physician before trying any of the above treatments. Treatments that are beneficial to one patient may be detrimental to another.
Do you know of something that may help POTS patients but is not listed here? Please send suggestions to: email@example.com
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30. Shores, M. M., Pascualy, M., Lewis, N. L., Flatness, D., & Veith, R. C.
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Managing & Enjoying Life After reading an article, use your browser's back button to easily return to the Table of Contents on this page.
Surviving the Guilt that Comes with Chronic Illness by Amy Keys The Ins and Outs of Owning and Training a Service Dog by Ellen Driscoll Dehydration by Margaret Rose Lombardi Enjoying Life at National Parks by Hallie MacDonald Beat the Heat by Amy Keys Meet the Member: Erin's Story by Chelsea Goldstein Medical Q & A - Member Questions Answered by DINET's Medical Advisors Updated - Research and News about Dysautonomia and Related Illnesses Updated - Open Recruitment Studies
by Amy Keys
Chronic illness comes with a smorgasbord of difficulties, but one sure to be at the center of the struggle buffet is GUILT. Guilt manifests in many forms and can quietly sneak in a bit at a time or viciously attack all at once. It's silly to think that a person could feel guilt over something that certainly wasn't their doing or their fault, but yet it is incredibly common. Understanding the different types of guilt experienced can be helpful for the patient, and more importantly, for the family and friends of that person as well.
The most obvious type of guilt comes with the financial burden. “My medical procedures and medications are costing this family so much money.” “Maybe we would have a saving account if it weren’t for the emergency room visits.” “I could be making money if I weren’t sick." It's one thing to be too sick to work, but how discouraging to not only be unable to make money but also spend money on health expenses nonstop.
Beyond finances, frequently the one who suffers from a chronic condition feels like a physical burden to family and friends. From needing a lift assist to helping with simple hygiene needs, the physical toll can be exhausting to those acting as caretakers. It can be hard to think that your health is draining the energy of your family.
The guilt that comes with canceling plans at the last minute or even failing to commit to begin with can be quite upsetting as well. Once again, becoming ill or flaring is not something within a chronically ill person's control. It's so hard to imagine people thinking of you as an irresponsible person because you can't always be counted on for an event. This perception is even more likely with so-called 'invisible illnesses' - nothing like looking great but feeling too fatigued to even leave bed. It can be debilitating to wonder and worry about what people are saying about you behind your back. What if they truly think you're just a flake? What if you have to call in sick to work? Now the person with the condition feels like they are burdening not only their family but their coworkers too.
Several people deal with guilt over having specific food restrictions and needs. It can be hard to be the 'high maintenance' one of the group who can only eat at particular establishments, or can only cook certain foods.
The types of guilt experienced can seem daunting and unending. So, what can be done? I find it helpful to think about the facts of the matter and only what is within my control. Can I suddenly make myself able to work? Can I decide not to have medical expenses? Can I make myself well enough to be sure I can make it to that event? No. It's ok to feel frustrated for a moment, but don't allow yourself to spend too much time on something that you have no control over. It's important to stop, take a deep breath, and empower yourself by shifting your focus and guiding your thinking in more positive directions.
First of all, remember that your health is the top priority, both physical and emotional. Try a gratitude journal to keep your mindset on the positive, instead of frustrations and negatives. Remember to take time for self-care as well; whichever type is best for you.
Focus on the fact that if it were your family member who was struggling with illness, you wouldn't feel burdened. You would take it in stride and not resent them for the changes to both your lives. Perhaps when a loved one tells you that you aren't a burden, give them the same benefit of the doubt and know that they mean it.
Realize that you still have value and purpose; it may be different than it was, but you still have a place in the lives of your family and friends. You can still encourage the people around you and help in other ways. This is not the end of your story.
We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to firstname.lastname@example.org
Related Questions from Two Members:
Question #1 from Member Bxxx:
Hello, Please can you explain how someone can feel extremely lightheaded and faint when they are sitting with a completely normal heart rate and blood pressure?
I understand you can still have low stroke volume and hence cardiac output, which is not measurable without invasive tests.
I have heard other patients say they also feel presyncopal with normal observations, but medical professionals often do not seem to understand this.
Question #2 from Christina
Hello, I’m a Dinet volunteer, username clb75. I have a question for the medical advisory board.
Many people with Pots experience dizziness when upright even though their BP and heart rate are normal. What causes this and what are the best ways to treat this type of dizziness?
Answer from Dr. Satish Raj
I think that there are a couple of issues here – one of nomenclature and one of physiology.
The nomenclature problem is with the word “dizzy”. It is not a medical term and could refer to two different medical problems: vertigo or light-headedness. Vertigo is where either the room spins around you or you spin within the room. This is usually not a blood pressure (or heart rate) issues but can be due to problems with the inner ear or brainstem. Light-headedness is the feeling that one is going to faint, although to a lesser degree than when actually fainting. In some languages, the term for light-headedness directly translates to “head spinning”, making it difficult at times to sort these out.
The second issue, assuming that it is light-headedness that is being discussed, is physiology. Low blood pressure or a low or high heart rate DO NOT, in and of themselves, cause light-headedness. They do this presumably by altering blood flow in the brain, and perhaps the delivery of nutrients (such as oxygen or glucose) to the brain. This disruption could occur on a more local scale (within the brain) as well. Many things alter blood flow in the brain…many more than I can name. Something as simple as breathing can do so. Hyperventilation, for example, can do this.
The challenge is that light-headedness is a common symptom that can be caused by many/most medical disorders. That is why, in many cases, more specific presentations (e.g. association with tachycardia or with fainting) are needed to help to narrow down the list of possibilities.
By Ellen Driscoll
When an animal joins your life, you receive health benefits, both physical and mental, that are far beyond what most people expect. Pet ownership has proven to have a positive impact on depression, anxiety, blood pressure, and heart rate changes, to name a few. Add all of that to the companionship, loyalty, and love they give us, and is it any wonder that 68% of U.S. households have at least one furry family member?
For people living with a chronic illness, a pet specially trained as a service animal brings another priceless asset...independence.
When most people think of service animals, a dog is what comes to mind, and with good reason. Dogs are the most often used species trained to be of service for disabled people. Cats, dolphins, miniature horses, monkeys, ducks, parrots, and ferrets have all been trained to perform specific tasks as “service” to the disabled. However, the legal title of “service animal” is given to different species dependent on state requirements. (1)
The ADA (the Americans with Disability Act) defines a Service Animal as a dog (2) “individually trained to do work or perform tasks for the benefit of an individual with a disability including a physical, sensory, psychiatric, intellectual or other mental disability.” The tasks can be a variety of things that help a person manage their day to day lives as long as it is directly related to the person’s disability.
The ADA protects the rights the disabled person has regarding housing, workplace, and other public places where a person may want and need to be accompanied by their dog. Most states have specific rules regarding inclusion and exclusion of animals, and each state’s Attorney General’s office can provide the specifics for that state.
Not all service animals do the same things. Besides guide dogs and hearing aid dogs, there are dogs trained for Mobility Assistance and Medical Emergency Response. Service Dogs can be trained to offer both types of assistance. There are emotional support animals that provide life-changing service for their owners also. While this category of animal is not recognized as a service animal by the ADA, most states will grant qualified, well-trained emotional support animals the same access to public spaces that an ADA dog has. There is a great site from the UK about the difference between emotional support animals and Service Dogs. The site, called “Dog Owner” is a wealth of information about the benefits of dog ownership for mental and physical health - https://www.dogowner.co.uk/dogs-mental-health/
A dog trained as a mobility assistance animal may provide help such as retrieving items from the floor, giving medication reminders, pushing elevator buttons, and many other helpful tasks. Medical emergency response animals frequently referred to as “seizure alert dogs” are trained to pick up changes in their owner’s bodies or behavioral cues that can warn that an emergency is about to take place, giving the owner a chance to react safely. This type of training has been critical for POTS and dysautonomia patients. If trained well, the dog can sense pre-syncope and give an alert signal, providing the owner time to move themselves to a safe space. They will also remain at attention by their owner’s side until the person is revived and can give the “okay” signal to the dog. Anyone who has been alone and incapacitated in a public place knows the potential dangers and the difference a service animal makes in that situation.
Two of the most common breeds trained for this invaluable profession are Labrador Retrievers and Golden Retrievers. (3) These breeds are smart, loyal, and known for their patience, all qualities needed for this work. However, It is vital for people to understand and accept the difference between owning a service animal and a pet. There is a good reason that the jackets that these dogs wear in public ask people not to pet or interact with them. Unlike owning a pet that you would encourage to be people friendly, a service animal needs to be focused on the disabled person solely. The distractions inherent in public places can make it difficult enough for the animal. If people are petting and playing with the dog, they could easily miss the subtle cues necessary for them to do their job effectively; to provide the service they are trained to do, the dog needs to be attached to the person they are assisting. So regardless of what method you elect to use, there is always some training needed between the disabled person and the animal.
Types of Training
There are many ways to bring a service dog into your life.
Buy an accredited Service Dog
Bring your dog to a professional company for training.
Train the dog yourself.
Service dog training is a very long process and can be very expensive. For a dog to become accredited, the animal must be able to respond to commands and be proficient in specific skills. They also must be able to pass the Assistance Dogs International Public Access Test.
Buying an accredited Service Dog
Assistance Dogs International is an organization that establishes the standards for the Service Dog industry. ADI provides links to accredited companies that meet these standards. You can search for a company on their website - https://assistancedogsinternational.org/members/programs-search/
Buying a service dog is not as easy as just picking one out. The application process is a long one with the initial inquiry form taking 6 - 8 weeks to be reviewed. If the preliminary form is approved, then the actual application is sent out. Once received, it takes another 6 - 8 weeks for a medical review board to process the application. At that point, the person wanting a dog is either approved or disapproved. If you pass to this point, the process goes forward. The average cost for a Service Dog is $25,000. Many companies will work with approved applicants on fundraising and cost options if there is financial hardship. Most programs require the disabled person to stay at the company’s training facility for three weeks to a month to train the dog and the owner and to prepare them for the public access testing. Most programs include periodic training, evaluation, and recertifications as needed.
Training Your Own Service Dog
Some companies provide training for disabled people who have a dog that they believe would make an excellent Service Dog. However, the personality of a great pet is not necessarily the same as a great Service Dog. The American Kennel Club offers the following list of qualities that make a dog a good candidate for service:
Calm but friendly
Alert but not reactive
Able to be touched by anyone, including strangers
Willingness to please
The natural tendency to follow you around
Socialized to many different situations and environments
Ability to learn quickly and retain information
Many companies that offer training will also evaluate your dog to see if he or she is a good fit. They may also help you find a dog that they believe will offer the best chance for success.
The upfront cost of a professional program is much less than buying an already accredited dog, averaging $5,000 to $10,000. However, there is not a guarantee that the dog will pass the accreditation test the first time. Also, this upfront fee doesn’t include ongoing training or recertification in most cases. Those fees are usually in addition to the upfront costs. It is important to talk to the company or the ADI to find out about any ongoing costs required to maintain accreditation.
Most professional training programs require about six months to complete all courses and prepare for the access test. Many organizations will offer training classes where professional trainers work in small groups providing the guidance needed for the owner to work at home with the dog to develop those skills. They also will offer private training that involves one-on-one instruction between the owner and the dog.
There has been a recent trend toward owners taking on training without hiring a professional. There are many resources online and blogs by people who have trained their animals. On the site, “The New Mobility,” Holly Koester (4) describes the process of teaching her black lab basic obedience and additional commands before seeking the specific training her dog would need for accreditation. Koester clicker trained her dog to be proficient with “sit,” “lay down,” “stay,” as well as other basic commands. After she had full confidence in that stage of learning, she moved on to teach commands like “pull” and “push,” giving her dog the headstart toward learning the skills to offer assistance in things like opening a door or closing a drawer. Koester estimates this approach shortened the amount of time her dog Spokes needed for professional assistance training down to three months.
No matter what the approach, training a service animal begins with teaching the owner. For people who don’t feel equipped to handle the basic obedience pre-training, there are companies like Top Dog located in AZ, (5) and The Dog Alliance in TX, (6) for example, that offer in-person and online classes for owners. Top Dog’s introductory class pairs owners with volunteer training assistants, and guides the owner through teaching the dog the basics and also how to understand the dog and how they communicate with you. The program goes on to the Intermediate, which begins the specific course work for assistance skills. Eventually, the owner and the dog are ready for the Assistance Dog Exam. Although the program is considerably less costly (the intro course is $200), it may not save you any time. Top Dog estimates a year and a half of training until the exam and much longer if a dog or owner doesn’t catch on to commands the first time around.
The Dog Alliance provides accredited dogs as well as owner training classes. The introductory course requires an owner to take a preliminary seminar on basic obedience training and that their dog either pass that class or has instructor approval to move on to the Service Dog training class. The advanced class focuses on assistance skills and preparation for the Assistance Test.
There are also training manuals and online training available to owners who have prior experience with basic command training or have owned a Service Dog before. Regardless of the path taken to get there, the goal should be to have a well-trained animal capable of passing the Assistance Test for Service Animals. Without this credential, there is always a safety risk in using an animal for mobility assistance.
A Final Word
Regardless of the type of training you decide to use, always check for the certification of the program and professionals you choose by researching the company through the Assistance Dogs International site - https://assistancedogsinternational.org/ This organization sets the standards for assistance animals, and trainers, as well as providing the official test for dogs to be accredited Service Dogs.
It is critical to understand that even though it is costly and time-consuming to go through all the hoops necessary to have an accredited Service Dog, it is dangerous and irresponsible not to. To protect the rites of the disabled population, restaurants and other public places are not allowed to question whether an animal is accredited or not, or why they are needed. Also, there are service dog vests that can be bought online without proof that the buyer is disabled or the dog is accredited. Unfortunately, this has led to some people abusing this law as a way of bringing their pets along to places they would not be permitted. This behavior puts accredited service animals at risk and puts any disabled person in their vicinity in unnecessary danger.
A Service Dog that finds a human partner as dedicated as they are to be consistent in their training, generous in their praise and affection, and focused on one another, will have a better quality of life together than they ever would have had alone.
For more information on Service Animals, visit these resources:
For personal stories and to connect with the owners of Service Animals, visit:
Hannah's Story: https://www.dinet.org/member-stories/lean-on-me-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/
Service Dogs for POTS - https://www.facebook.com/groups/110152023042832/ - this is a closed Facebook group, but if you send them a message to join or to get more info, they are very responsive.
1. Federal and State laws regarding Service Animals can be found at https://usaservicedogregistration.com/service-dog-state-laws/
2. In rare cases, the ADA will allow for a miniature horse to be certified as a Service Animal. https://adata.org/faq/i-heard-miniature-horses-are-considered-be-service-animals-ada-true
3. AKC Service Dog Training 101, https://www.akc.org/expert-advice/training/service-dog-training-101/
4. Training Your Own Service Dog by Roxanne Furlong, http://www.newmobility.com/2006/12/training-your-own-service-dog/
5. “Top Dog Teamwork” from the article Training Your Own Service Dog by Roxanne Furlong http://www.newmobility.com/2006/12/training-your-own-service-dog/
6. Service Dog Training, Out and About https://thedogalliance.asapconnected.com/#CourseGroupID=12147
By Chelsea Goldstein
Meet Erin. She has talents for research and storytelling, both of which helped her excel in her work as an investigative journalist and managing editor of several magazines. When she began her career, she did not know that these talents would be central to discovering, in her mid-thirties, critical diagnoses including fluoroquinolone (antibiotic) induced dysautonomia, hyperadrenergic POTS, and neuropathy, that made all the difference in her health.
Erin’s story shares some common elements with many of our experiences. She had a swift and severe reaction to a course of antibiotics that left her with widespread nerve damage and severe disability. She began experiencing extreme dizziness, fainting, tachycardia, and sweating. She visited over fifty doctors in multiple states in pursuit of an answer. Many of the traditional medical tests, such as blood work and CT scans, came back normal, and several doctors told her that her symptoms were “all in her head” or caused by “just anxiety.” Despite these professional dismissals, Erin’s body continued to tell her something was very wrong. She followed this instinct that led her to discover dysautonomia (and DINET!), and she began to connect the dots of her symptoms. Through her own research, she identified the diagnostic criteria for dysautonomia and advocated for her own testing. An understanding neurologist respected her instincts, and testing confirmed that her symptoms were the product of dysautonomia.
While six months is six months too long to seek an explanation for life-altering symptoms, we know that Erin’s diagnostic process is relatively short in the world of dysautonomia. I attribute this to her tenacity in research and fearless self-advocacy. Had she not fought for her own diagnoses and trusted her body, she may still be searching for answers and living in the psychological torment of the unknown. She advocates for improved diagnostic processes for dysautonomia. Her experience of being dismissed, adding unnecessary psychological distress to her already debilitating symptoms is still very fresh. She also calls for all of us to value those doctors who are strong listeners with open-minds.
Part of Erin’s strength is being vulnerable about her struggle in the first years of living with her conditions. Prior to the swift onset of her symptoms, she was a newly-wed at the top of her field who loved to travel. Much of her identity was based on her accomplishments and go-getter mentality. She admits that she spent a couple of years grieving the loss of her old self, which impacted her mentally, emotionally, and spiritually. She had suicidal thoughts and questioned her beliefs—why do some people experience miracles and others don’t? Erin always viewed her friends as her family and then felt a distancing from many of them. She expresses some empathy toward these friends now, understanding that her disability may remind them of their own mortality.
Today, Erin has bad days and better days. On days that she is bed bound, fears surface that her progressing neuropathy will cause her to lose function in some areas of her body. However, she is actively working to adjust to her new normal and seeks gratitude for the things that she has. Perhaps, most importantly, is finding forgiveness. Erin is working on forgiving the doctors who did not believe her, and she is working on forgiving herself. Like Erin, many of us internalize unnecessary self-blame -what did I do to cause this? What could I have done differently? Is it really all in my head? She is also working on finding forgiveness for her God and finding a path forward with her own spirituality. Her healthy outlook reminds her that acceptance is a process. Erin also credits the strong support she receives from her husband as central to finding her new normal.
So, what can we learn from Erin? We can learn to fiercely and bravely advocate for our own bodies. We can work never to let a doctor’s credentials make us feel small. We can remember to value, and show gratitude toward the doctors and others who have helped us along the way. We can show ourselves love each day - no matter where we are in the acceptance process. In essence, Erin reminds us to be warriors who wear our battle scars proudly. At the same time, she reminds us that warriors experience incredibly challenging life circumstances, and, like true warriors, we must learn to be vulnerable about our mental, emotional, and spiritual wounds so that we can work to heal those, too.
Our Newsletter has been published quarterly by DINET since 2003. Each edition includes information touching on many aspects of living life with dysautonomia. This publication is a labor of love from volunteers that include writers, our medical advisory panel and design and editing staff, all volunteering their time and talents to make each edition informative and worthwhile. New editions are published in article/web format. Older editions are in pdf format and require a download. If you have difficulty downloading, or need a copy of an edition not in the list, please contact email@example.com
June 2019 Newsletter - Managing & Enjoying Life
February 2019 Newsletter - Thriving
August 2018 Newsletter - Investigation & knowledge
April 2018 Newsletter - Communication
December 2017 Newsletter - Looking back & looking forward
July 2017 Newsletter - Challenges
March 2017 Newsletter - Empowerment
If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer. Due to poorer temperature regulation, many of us might experience major health issues this time of year - noted by excessive sweating or the inability to sweat.
Heat intolerance in particular, is a big problem throughout the summer. Fatigue is increased, as well as the possibility of dehydration. Along with those two symptoms, is the near guarantee that others will be increased and/or aggravated such as dizziness, nausea, light-headedness, tachycardia, and weakness.
While there is no cure for the dysfunction of the autonomic nervous system, there are certainly steps that can be taken to help fight the heat. Avoiding direct sunlight is very important, as well as staying as cool as possible. Cooling vests , neck ties and cooling towels can be bought, as well as wick-away clothing that helps to keep the body cool. I have found that a wet towel thrown in the freezer for a little bit can be very refreshing. Even better, I get a towel wet and drop a few drops of peppermint extract on it and then cool it in the freezer. I don’t leave the house without my mini spritzing fan. It has saved my life several times and was certainly worth the three-dollar investment. Ice packs are also an option. They can be used inside the collar of clothing or in the groin area if severely overheated. Although, when using ice, care needs to be taken to avoid the packs coming in direct contact with the skin. It is imperative to avoid standing while in the heat.
Finally, staying hydrated is of the utmost importance. Sweating excessively can lead to a large amount of salt loss which can be life threatening. But even just a small amount of salt lost through sweating can cause symptoms to flare if not hydrated properly. Therefore, it is necessary to replenish electrolytes when out in the heat. While Gatorade and Powerade can sometimes be the quickest and easiest ways to do so, many people may be concerned by the amount of sugar and artificial dye and flavors in these sports drinks.
If you are concerned about commercial beverages, there are many homemade electrolyte drink recipes available online, as well as products that use less sugar and dye. Some of the more popular are Normalyte, Banana Bags, and my personal favorite Nuun electrolyte tablets which can be dropped into a bottle of water. Nuun tablets are also gluten free, vegan, non-GMO sourced, and soy and dairy free which makes them an excellent choice for those who have allergies as well. The product choice is yours, but be sure you don’t skip out on replenishing your electrolytes while out in the heat. Your body will thank you!
Don’t let summertime get you down and sick. Do your best to get out and enjoy the weather, but be prepared to cool down and hydrate up!