Q&A with the doctors

Question:

I am a 26 yr. old dentist that has been diagnosed with Dysautonomia and MVPS in the states two years ago. My biggest concern is hand tremors, which cause problems in my field due to the overactive sympathetic
nervous system to stresses. I am currently on 40mg of Inderal per day but still have a very overactive sympathetic system. I have problems seeking doctors that understand my condition in Egypt, so I would like to have your help in alleviating such bothering symptoms.

Answer:

Tremors can be caused by several different disease processes. First and foremost, you should determine if you actually have Dysautonomia and mitral valve prolapse. The definition of mitral valve prolapse has changed over time. If you actually have sympathetic overload, sometimes Clonidine given at a very low dose (0.1mg at night or 0.1mg bid) can help. This change should be reviewed and followed up by your treating physician.

- Dr. Suleman, The Heartbeat Clinic, Texas

Question:

Can you tell me if there is any information regarding how the weather affects people with POTS? It seems my symptoms become a lot worse in the winter whereas I can only detect a small change in the fall and spring. It is very difficult for me to function in the winter.

Answer:

I know of no systematically collected data about seasons and symptoms in POTS. Anecdotally, I expect that symptoms are often worse in the summer than winter-presumably related to the increased heat. I do not have a cogent explanation for the worsening in the winter.

- Dr. Satish Raj, Vanderbilt University Medical Center

Question:

I have POTS and have managed to self treat myself with herbal compositions, diet, exercise and magnesium + Vitamin B6. I work full time as a physiotherapist and do not need to lie down during the day. My question is how free of symptoms are patients who take medications? I have noticed an exacerbation of symptoms in the spring and fall -is this my imagination or a general observation?

Answer:

Response to medications is quite variable among patients. However, my impression is that in most patients the medications may help to improve symptoms and functioning, but they do not totally “cure” the symptoms. It sounds like with the current cocktail of vitamins and supplements that you are doing fairly well. Again, I have not noticed a spring/fall worsening of symptoms. This is not to say that it is not true, but I cannot currently explain this phenomenon.

- Dr. Satish Raj, Vanderbilt University Medical Center

Question:

My seventeen year old daughter has been diagnosed with POTS. She has severe issues with “brain fog.” Is brain fog due to fatigue or the lack of oxygen from decreased blood circulation?

Answer:

“Brain fog “is a term that people typically use to describe lack of concentration, attention and a general lack of “mental” energy. It can certainly be due to “physical” fatigue that accompanies any chronic illness. Brain fog is described by patients with POTS, NCS, chronic fatigue syndrome and fibromyalgia, but it is also common in a variety of other neurologic, cardiovascular and autoimmune conditions. Unfortunately, the cause of mental fatigue is not clearly understood at this time, but addressing factors that are treatable, such as improving sleep, managing potential depression or anxiety and improving nutrition and “physical” endurance can help alleviate and improve mental and cognitive status. For POTS, maintaining adequate fluid and salt intake is essential for both physical and mental energy. Using stimulants in small doses such as certain medications or caffeine can be another therapeutic option that can increase alertness in patients with POTS. I often recommend continuing to perform cognitively challenging tasks as much as possible, such as reading, writing, doing cross-word puzzles, etc., despite the “brain fog," in order to maintain cognition, memory, concentration and attention.

- Svetlana Blitshteyn, Kinkel Neurologic Center, LLP, Buffalo, NY

Question:

Can a person who has dysautonomia be incontinent of urine during an episode? I have seen the “seizure like” symptom listed but nothing about urine incontinence.?

Answer:

Urinary incontinence can sometimes accompany a fainting spell. However, any episode that involves a sudden loss of consciousness without any warning signs and is accompanied by urinary incontinence should be thoroughly investigated for a possibility of a seizure disorder. Only after a seizure has been ruled out by appropriate testing is it safe to conclude that the episode of urinary incontinence with loss of consciousness was NOT a seizure and was likely due to syncope (fainting.)

- - Svetlana Blitshteyn, Kinkel Neurologic Center, LLP, Buffalo, NY

Question:

By way of a tilt table test, I was diagnosed with dysautonomia three years ago. This was after several years of generally just not feeling well, which included fatigue to the point of barely functioning, facial muscle spasms, chest pain, shortness of breath, tingling in my arms, joint pain, and more. My GP sent me for the tilt table test as a last resort. I am currently taking Midorine twice a day and am on high volume water and salt intake. I tend to go through cycles of having facial muscle spasms, hives/rash, anxiety and fatigue. Recently I have noticed that my vision seems to have changed, and in my left eye I will often feel a sharp pain. I have always had tiny pupils that don't dilate. Also, sometimes I will feel as if I have been pricked by a pin on my left hand and fingers. Could these be related to my Dysautonomia? I am scheduled to visit the Vanderbilt clinic in October and am looking forward to that appointment. I want to understand this condition more fully and make sure I am taking the best care of myself as possible.

Answer:

Because the Autonomic Nervous System controls all areas of the body and because most of OI/POTS is ultimately 2 degrees abnormal pooling of the blood in the abdomen and the legs, this leads to a slight decrease in blood flow to the brain and can lead to just about any symptom. One of the more frequent complaints we hear is of changes in vision-usually this is around the time of other symptoms that are related to the pooling of the blood. Often, when the blood flow to the brain is reduced, the very tiny muscles of the eye will fatigue and cause visual changes or even pain from spasms. BUT don’t just assume this is what it is. If you haven’t seen an ophthalmologist, at least have your eyes checked. Hives and rash can also accompany spells of autonomic dysfunction, usually caused by the release of histamine from a special cell called a mast cell. Tests can be done to determine if this is happening with you. Dr.Julian Stewart has done extensive research in this area.

You don’t mention the specific subtype of dysautonomia you have but, especially in POTS, when there is a large release of adrenaline in the body, sometimes the body doesn’t know how to interpret it and will tell the brain this is anxiety when in fact the sympathetic nervous system (the adrenaline system) is trying to compensate for pooling of blood that can result in falls in blood pressure and the release of excess adrenaline. This is the fight-or-flight mechanism and usually when there is no obvious reason for you to have the release of adrenaline the brain tells you that you are feeling anxious. The symptoms are usually the same: sweating, palpitations, fast heart rate and a general feeling of unease. This can possibly trigger the facial spasms. Until about four or five years ago, about 85% of patients would be diagnosed with an anxiety disorder before they were diagnosed with dysautonomia. The pinpoint pupils are usually an effect of the activation of the other half of the Autonomic Nervous System, the parasympathetic, and it is not unusual to see effects of both the sympathetic and parasympathetic symptoms. Unfortunately, fatigue is probably the most common and often the most debilitating symptom of the syndrome. To make a long story short, you’re symptoms could, and probably are, related to the dysautonomia, but we don’t want to assume anything. There could be other factors. You are going to one of the best medical centers in the world, especially in the autonomic field, so they will be able to answer your questions better after this evaluation, so continue to follow-up with your physician to make sure other things are not going on. Also, I would suggest that you make a list of your symptoms to take with you when you go to Vanderbilt.

- Dr. Thompson

Question:

I was diagnosed with dysautonomia in 2004. I have many symptoms that are bothersome, but my digestive tract is the worst. I have had chronic constipation for the last five years. I will go two weeks at a time without having a bowel movement. I have seen several gastroenterologists and usually leave the office with a pat on the head and the recommendation for more fiber. I have tried Contulose, Miralax, etc. -you name it. I am very concerned about the toxicity of all of this waste lingering in my system for such long periods of time. I also have severely delayed gastric emptying and dysphasia. I have no problems eating, so I am just wondering if there are any suggestions or treatments out there that I am missing. I am very disheartened right now because whenever I go to the doctor I feel like I am not being taken seriously. I would appreciate any help/input that you could provide me.

Answer:

I have found both in patients and in myself, the gastrointestinal symptoms are frequently overlooked or are tried to be explained in another way from dysautonomia. But more and more we are finding that symptoms such as yours are related to dysautonomia. I am seeing more and more people who have GI problems as one of their main symptoms. I don’t know of any definitive studies to point you to, but more and more GI doctors are beginning to feel that patients with dysautonomia have severe problems with the motility of the GI tract. When you mention delayed gastric emptying and dysplasia, you don’t mention if you have had a gastric emptying study, an EGD (upper scope) to look for reflux or stimulation, a colonoscopy or a colonic motility study. When you say “you name it” as far as meds, I wonder if the above studies have been done and if you are on a proton pump inhibitor (Prilosec, etc.) because reflux is common in dysautonomia. Also, there are several drugs that can be tried if you have documented gastric emptying problems, but these medications can carry side effects so most doctors want documentation prior to using them. Also, for the chronic constipation, certainly the drug of choice these days is Miralax, but if it is truly a motility problem, Amitiza is indicated. I have read recently that Zelnorm is going to be put back on the market, but it can only be prescribed by a gastroenterologist. The most important thing is to find a gastroenterologist who will listen and work with you. If the above tests have not been done, they need to be considered. If you have not done so, you may want to look into getting a referral to a major university center for further evaluation.

- Dr. Thompson

Question:

My blood pressure is always normal; I never have pooling in my feet or legs and when I am standing my pulse stays at about 115bpm.The problem is that I do have all of the other horrible symptoms of POTS. While I have been diagnosed with POTS, is there a possibility that this could be something else?

Answer:

Yes, this can be many things including POTS or an associated problem called inappropriate sinus tachycardia. You need to rule out other conventional problems such as thyroid disease, forms of anemia, pheochromocytoma and more. This will require a medical visit to determine if something else could be going on.

- Dr. Julian Stewart, New York Medical College

Question:

My fifteen year old daughter was diagnosed with dysautonomia two years ago. She has now been diagnosed (at a sleep disorders clinic) with narcolepsy. Is there any association between these two disorders?

Answer:

There could be an association in the sense that the central nervous system is involved in both. The problem is that “dysautonomia” is really a non-diagnosis and just means that something is wrong with the nervous system. I certainly would not like to place that handle on kids with simple faint.

- Dr. Julian Stewart, New York Medical College

Vascular Dysfunction in CFS – CFS with and without POTS

We are investigating “Vascular Dysfunction in CFS” in the young (aged 15-29 years). This means problems with blood vessels and circulation. In many young CFS patients we have already demonstrated a circulatory problem called postural tachycardia syndrome or POTS. Our understanding of the mechanisms of POTS is incomplete and not all young CFS patients have POTS. We have proposed that even though some CFS patients do not have POTS, they may still have problems with small blood vessels that can be detected in skin.

When you come for your testing, we will perform a type of tilt testing and other simple noninvasive tests to determine whether you have POTS or not. We will also determine the type of POTS. If you do not have POTS, we will complete testing over a total of two days using a technique called intradermal microdialysis (explained in the consent and in the website). There is a total subject fee of $300.

If you do have POTS, we invite to stay two additional days to undergo tests specific to POTS (4 days in total). On the first of the two days we will study tests of breathing and the function of the nervous system. This is listed on our website as “Hyperpnea in Postural Tachycardia” and carries a subject fee of $300. On the second of the two days we will test specific treatments for POTS which carries a subject fee of $150.
Further details of the research and representative consent forms can be found on my web-site, www.syncope.org. 

Please reply to:
Courtney Terilli, Research Coordinator
Courtney_Terilli@NYMC.edu
Telephone 914-593-8888
Or
Julian Stewart, Principal Investigator
Julian M. Stewart MD, PhD
Professor of Pediatrics and Physiology
Associate Chairman for Patient Oriented Research
Director, Center for Pediatric Hypotension
New York Medical College
Suite 3050,
19 Bradhurst Avenue
Hawthorne, NY 10593 USA
Research Office 914-593-8888
Pediatric Cardiology Office: 914-594-4370
Website: syncope.org
Email: stewart@nymc.edu

Hyperpnea in POTS, Local Vasoconstriction in POTS, Sympathoexcitation in POTS

We are currently continuing our studies of postural tachycardia syndrome in the young (aged 15-29 years). However, our understanding of the mechanisms of POTS is still incomplete.

Our current investigations can be separated into 3 days of study. On the first of the two days we will study tests of breathing and the function of the nervous system. This is listed on our website as “Hyperpnea in Postural Tachycardia” and carries a subject fee of $300. On the second day we will study changes in the skin response to drugs regulating angiotensin, nitric oxide, and oxidative stress using the minimally invasive methods of microdialysis similar to prior experiments. On the third day we will test specific intravenous treatments for POTS. Days 2 and 3 each carry a subject fee of $150.

Further details of the research and representative consent forms can be found on my web-site, syncope.org.

Please reply to:
Courtney Terilli, Research Coordinator
Courtney_Terilli@NYMC.edu
Telephone 914-593-8888
Or
Julian Stewart, Principal Investigator
Julian M. Stewart MD, PhD
Professor of Pediatrics and Physiology
Associate Chairman for Patient Oriented Research
Director, Center for Pediatric Hypotension
New York Medical College
Suite 3050,
19 Bradhurst Avenue
Hawthorne, NY 10593 USA
Research Office 914-593-8888
Pediatric Cardiology Office: 914-594-4370
Website: syncope.org
Email: stewart@nymc.edu

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