Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Information Resources


Goldstec
Claire is a thirty-six-year-old mom, with a  refreshingly real disposition, shares her experiences of living with POTS. Her dysautonomia is accompanied by gastroparesis, irritable bowel syndrome, hypermobile Ehler-Danlos Syndrome, polycystic ovary syndrome (PCOS), and endometriosis among others. She worked as a Certified Dental Assistant for ten years before she resigned due to disability.  

Though Claire recalls she has probably had POTS and EDS for many years, she officially sought a diagnosis at age twenty-eight. At the time, she was working full-time, married, and preparing to start a family. While she has always had some symptoms, she attributed them to her PCOS and endometriosis. However, she knew there must be another explanation when her symptoms flared during her pregnancy in 2010. Most of that year was filled with debilitating pain, migraines, unrelenting morning sickness, and both erratic heart rate and blood pressure. While she felt something was not right, her doctors dismissed it as typical pregnancy symptoms. She had a difficult nineteen-hour labor  followed by several months of caring for a newborn, and trying to care for herself at the same time. By this time, she knew her symptoms were not typical of a pregnancy, nor postpartum depression, and actively began to seek answers. 
In the next four and a half years, she persevered in her search for answers, and saw nearly fifty doctors.  Most of these doctors told her she was “too young” or “too pretty” to be so sick. Some argued her symptoms were due to the stress of being a new mom. Even some friends and professionals questioned her experiences, believing she was not sick enough to seek help. She inevitably felt some sense of defeat after years of dismissal, and it was then that a twist of fate led Claire to a diagnosis – a close friend spoke with a doctor about her case, and the doctor wanted to see Claire. During their visit he spoke the magic words that we all long to hear: “I believe you, you are not crazy, and you are not alone.” Her search continued for several more months during which time she also discovered her home was filled with black mold. She was finally diagnosed with POTS and EDS at age thirty-two. 
After such a long and harrowing experience, Claire was elated to have a diagnosis. She felt she could finally start treating her conditions,  as well as receive belated empathy and validation from professionals. While her diagnosis was empowering and encouraging, Claire astutely articulates that we must remember that a diagnosis does not always change the way people with dysautonomia are treated. Even with a diagnosis, there is not clear and simple treatment for dysautonomia. Additionally, many professionals still do not understand the condition and, at best, provide little support while, at worst, continue to minimize and mock the experiences of patients. This roller coaster is familiar to many of us – we desperately seek answers for a smattering of life-altering symptoms. Then we finally receive them, and we are consumed by relief. However, then we must endure an entirely different emotional process of realizing the complexities of dysautonomia treatment and the lack of understanding about the condition in our society. 
Today, Claire still struggles with her dysautonomia. She is in her mid-thirties and uses a shower chair, walker, cane, accessible parking, and occasionally a wheelchair. She used to love camping, but has had difficulty getting outdoors even with adaptations. One of the most thought-provoking points that Claire makes is that there seems to be a stereotypical success story of individuals who are expected to “overcome” illness by running marathons and raising a lot of money. According to that stereotype, many of us feel  'less than' if we don’t reach these often unrealistic heights. I would argue that this stereotype needs to be challenged. On the contrary, Claire is a refreshing and real inspiration through her courage to share her story even when she does not feel she has fully figured out her path. She reminds us that it is human to experience hope, despair, frustration, and inspiration all at once. She shows us that it is okay to be complex because if we all fit the cliché inspiration success stories we would lose the diverse, empathetic, creative, and intuitive individuals who make up our community. I believe that many of these qualities are cultivated among individuals living with dysautonomia specifically because of the unpredictable struggles of their daily lives. Claire teaches us that being real about where we are each day is, perhaps, the most inspiring story of all. 

*If you would like your story to be considered for a future "Meet the Member" article, please reach out to Chelsea at chelsea.goldstein@dinet.org
 

edriscoll
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 webmaster@dinet.org
Newsletters:
February 2020 Newsletter - Paths & Stories
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
DinetSeptember2016_FINAL.pdf
2016_June_Newsletter.pdf
 
2015_Summer_Newsletter.pdf  
2015_Spring_Newsletter.pdf
2015_Winter_Newsletter.pdf 
2014_Summer_Newsletter[1].pdf
2014_Spring_Dinet_Newsletter[2].pdf
2014_Fall_Newsletter[1].pdf

edriscoll
It's that time again to promote awareness and education wherever we can.  Let's face it, we are all dedicated to doing this 365 days a year, we don't need a special month to tell us to push awareness.  But it is a great reminder to consolidate our efforts and start reaching out in ways we haven't before.
NEW YOUTUBE FEATURE:  So for 2019, we have launched a new YouTube channel for DINET - with a feature called "The Chronic Corner".  Our Social Media Coordinator, Lauren Mlack, will be posting new videos every month, with topics ranging from the latest information about treatment options to understanding the many forms of dysautonomia to living with chronic illness.  There will always be something to learn, explore, share and question. 
DISCUSSION AND SUPPORT have always been at the top of DINET's priorities.  Whether you are more comfortable on Facebook or you prefer anonymous chats on our moderated forum, both offer you a way to connect with other people living with dysautonomia.  Discussions range from comparing symptoms, asking questions about others experiences with a medication or treatment option, to handling the stress of chronic illness and so many more.   You can read the forum anytime, but you do need to become a member if you want to join in the conversation.  https://www.dinet.org/forums/ or check out our Facebook page - https://www.facebook.com/DysautonomiaInformationNetwork/
INFORMATION GUIDES:  This is the time to share info with family and friends and help them understand what you live with everyday.  Share the link or scroll to the pdf link at the bottom of the page and print.  Share with people in the medical community who just don't understand the words on your chart like POTS, Dysautonomia, NCS, etc.   Also, if you would like to share information with a group, we have printed materials that we are happy to send along.  Please contact webmaster@dinet.org with the name of the group and the number of packets you will need. Please allow 2 weeks to receive your request.  

edriscoll
Newsletter Content
Patient Advocates by Reanna Mathis
Compression Stockings by Mona Hussein
Meet the member: Kat's story by Chelsea Goldstein
Medical Q & A, answers provided by DINET's Medical Advisory Team
Dysautonomia Research
Information Patient Guides
Looking Back and Looking Forward - 2017 to 2018
 
 
 
 
 
 
 
 
 
 
 
 
 

edriscoll

Pure Autonomic Failure (PAF)

By edriscoll, in PAF,

Pure Autonomic Failure (PAF)
A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat.
Our web site provides links in our Link Directory to pure autonomic failure resources on the Internet.
References 
Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.

edriscoll

Neurocardiogenic Syncope (NCS)

By edriscoll, in NCS,

Otherwise referred to:  Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope
This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes.
Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment.   More information about NCS can be found here - https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/   We also include links to more web resources in our Link Directory.
 
Reference
Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.

MRoseLombardi

Dehydration

By MRoseLombardi, in Newsletters,

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.
Adults
Dizziness Extreme thirst Not urinating at all, urinating infrequently, or urinating very small amounts Dark colored urine with a strong odor Fatigue 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.

edriscoll

POTS What Helps?

By edriscoll, in POTS,

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: webmaster@dinet.org
References
1. Gaffney, F. A., Lane, L. B., Pettinger, W., & Blomqvist C. G. (1983).   Effects of long-term clonidine administration on the hemodynamic   and neuroendocrine postural responses of patients with dysautonomia.   Chest, 83(2 Suppl), 436-438.   PMID: 6295714 [PubMed - indexed for MEDLINE]     2. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia    Research Foundation Patient Conference. Minneapolis, Minnesota.      3. Grubb, B. P. (2002, October). The heterogeneity of symptoms related to   dysautonomia. Symposium conducted at the meeting of the   National Dysautonomia Research Foundation Northwest Ohio   Support Group. Toledo, Ohio.     4. Grubb, B. P., & Karas, B. J. (1998). The potential role of serotonin in the    pathogenesis of neurocardiogenic syncope and related autonomic    disturbances.  Journal of Interventional Cardiac Electrophysiology,    2, 325-332. No abstract available.    PMID: 10027117 [PubMed - indexed for MEDLINE]     5. Grubb, B.P., & Karas, B. (1999). Clinical disorders of the autonomic   nervous system associated with orthostatic intolerance: an overview of   classification, clinical evaluation, and management. Pacing and     Clinical Electrophysiology.  22, 798-810.    Full text: http://www.ndrf.org/PDF%20Files/disorders.PDF     6. Grubb, B.P., Kanjwal, Y., & Kosinski, D.J. (2006). The postural tachycardia   syndrome: a concise guide to diagnosis and management. J Cardiovasc   Electrophysiol, 17(1), 108-112.     7. Grubb, B.P., Kosinski, D., Mouhaffel, A., & Pothoulakis, A. (1996).   The use of methylphenidate in the treatment of refractory neurocardiogenic   syncope. Pace, 19, 836-840.   PMID: 8734752 [PubMed - indexed for MEDLINE]     8. Grubb, B. P., & McMann, M. C. (2001) The Fainting Phenomenon:     Understanding why people faint and what can be done about it.    New York: Futura Publishing Company.     9. Hain, T. C., (2001). Orthostatic hypotension. Information about dizziness,    ataxia and hearing disorders.  (website no longer available)     10. Haran, C. (2004, January 30). Pressure Drop: Treating Orthostatic   Hypotension [Interview with Dr. Blair P. Grubb]. Retrieved July 30,   2004 from Healtholgy.         11. Hilz, M. J., Marthol, H., Neundorfer, B. (2002). Syncope - a systematic    overview of classification, pathogenesis, diagnosis and management.   Fortschritte der Neurologie-Psychiatrie, 70, 95-107.   PMID: 11823926 [PubMed - indexed for MEDLINE]     12. Hoeldtke, R. D., Bryner, K. D., Hoeldtke, M. E. & Hobbs G. (2007)   Treatment of autonomic neuropathy, postural tachycardia and orthostatic   syncope with octreotide LAR. Clin Auton Res. Aug., 31. PubMed     13. Hoeldtke, R. D., Horvath, G. G., & Bryner, K. D. (1995). Treatment of    orthostatic tachycardia with erythropoietin. American Journal of   Medicine, 99, 525-9.    PMID: 7485211 [PubMed - indexed for MEDLINE]     14. Hoeldtke, R. D., & Streeten, D. H. P. (1993). Treatment of orthostatic    hypotension with erythropoietin. The New England Journal of Medicine,    329, 611-615. PMID: 8341335 [PubMed - indexed for MEDLINE]     15. in t' Veld, B. A., Ruitenberg, A., Hofman, A., Launer,  L. J., van Duijn, C.   M., Stijnen, T.,  Breteler, M. M., & Stricker,  B. H. (2001). Nonsteroidal   antiinflammatory drugs and the risk of Alzheimer's disease. New  England   Journal of  Medicine, 345, 1515-1521.   PMID: 11794217 [PubMed - indexed for MEDLINE]     16. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance   and postural tachycardia syndromes. The American Journal   of the Medical Sciences, 317, 88-101.   PMID: 10037112 [PubMed - indexed for MEDLINE]     17. Jacob, G., Robertson, D., Mosqueda-Garcia, R., Ertl, A. C., Robertson,   M. R., Biaggioni, I. (1997). Hypovolemia in syncope and orthostatic   intolerance: role of the renin-angiotensin system. The American   Journal of Medicine, 103, 128-133.   PMID: 9274896 [PubMed - indexed for MEDLINE]     18. Jordan, J., Shannon, J.R., Grogan, E., Biaggioni, I., & Robertson, D.   (1999). A potent pressor response elicited by drinking water. The Lancet,   353, 723. No abstract available.   PMID: 10073520 [PubMed - indexed for MEDLINE]     19. Kadri, N. N., Hee, T. T., Rovang, K. S., Mohiuddin, S. M., Ryan, T.,   Ashraf, R., Huebert, V.,  & Hilleman, D. E. (1999). Efficacy and safety of    clonazepam in refractory neurally mediated syncope. Pacing and Clinical   Electrophysiology, 22, 307-314.   PMID: 10087545 [PubMed - indexed for MEDLINE]     20. Low, P. A. (1994). Autonomic neuropathies. Current Opinion in   Neurology, 7, 402-406.   PMID: 7804460 [PubMed - indexed for MEDLINE]     21. Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia    Research Foundation Patient Conference. Minneapolis, Minnesota.     22. Low, P. A., Schondorf, R., Novak, V., Sandroni, P., Opfer-Gehrking, T.   L., & Novak, P. (1997). Postural Tachycardia Syndrome.   In P.A. Low (Ed.), Clinical Autonomic Disorders (pp. 681-697).      Philadelphia: Lippincott-Raven Publishers.     23. Mathias, C. J. (2000, July). Other autonomic disorders. National    Dysautonomia Research Foundation Patient conference.    Minneapolis, Minnesota.     24. Mathias, C. J. (2003). Autonomic diseases: management. Journal of   Neurology, Neurosurgery & Psychiatry. 74 Suppl 3:iii, 42-47.   Full Text: http://jnnp.bmjjournals.com/cgi/content/full/74/suppl_3/iii42     25. Raj, S. R., Biaggioni, I., Yamhure, P. C., Black, B. K., Paranjape, S. Y.,   Byrne, D. W., & Robertson, D. (2005). Renin-aldosterone paradox   and perturbed blood volume regulation underlying postural tachycardia   syndrome. Circulation. 111(13), 1574-1582.     26. Redman, D. A. (2000). Ruscus aculeatus (butcher's broom) as a potential    treatment for orthostatic hypotension, with a case report. The Journal of    Alternative and Complementary Medicine. 6, 539-549.   PMID: 11152059 [PubMed - indexed for MEDLINE]     27. Schondorf, R., & Freeman, R. (1999). The importance of orthostatic    intolerance in the chronic fatigue syndrome. American Journal of the    Medical Sciences, 317, 117-123.    http://www.ncf-net.org/library/orthostaticreview.htm     28. Shannon, J. R., Diedrich, A., Biaggioni, I., Tank, J., Robertson, R. M.,    Robertson, D.,  & Jordan, J. (2002). Water drinking as a treatment for    orthostatic syndromes. American Journal of Medicine, 112,    355-60. PMID: 11904109 [PubMed - indexed for MEDLINE]     29. Shibao C, Arzubiaga C, Roberts LJ 2nd, Raj S, Black B, Harris P,   Biaggioni I. (2005). Hyperadrenergic postural tachycardia syndrome in   mast cell activation disorders. Hypertension,  45(3), 385-390.   Full text: http://hyper.ahajournals.org/cgi/content/full/45/3/385     30. Shores, M. M., Pascualy, M., Lewis, N. L., Flatness, D., & Veith, R. C.    (2001). Short-term sertraline treatment suppresses sympathetic nervous     system activity in healthy human subjects. Psychoneuroendocrinology,    26, 433-439. PMID: 11259862 [PubMed - indexed for MEDLINE]     31. Streeten, D. H. (1999). Orthostatic intolerance. A historical introduction to   the pathophysiological mechanisms. The American Journal of the   Medical Sciences, 317, 78-87. PMID: 10037111.     32. van Lieshout JJ., Pott, F., Madsen, P. L., van Goudoever,  J., Secher,   N. H. (2001). Muscle tensing during standing: effects on cerebral tissue   oxygenation and cerebral artery blood velocity. Stroke, 32, 1546-   1551. Full text: http://stroke.ahajournals.org/cgi/content/full/32/7/1546     33. Vanderbilt University Autonomic Dysfunction Center. (1999). Orthostatic   Intolerance. Retrieved May 4, 2004, from the World Wide Web.   http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788  34. Drugs & Medications: Medscape, Northera http://www.webmd.com/drugs/2/drug-166782/northera-oral/details

edriscoll
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
 

Amy Keys
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.

×
×
  • Create New...