Q&A with the doctors

Question:

Do people who were not born with POTS ever recover completely and, if so,how long does the recovery take?

-R. Tendolkar

Answer:

First, I am not aware of anyone born with POTS. POTS seems to be acquired. Recovery is variable, but a figure on the order of five years is often given. There are certainly young people who I have seen who have taken much longer but most seem to recover. I cannot speak as to older patients. There is a natural history study underway at Mayo Clinic under the auspices of Dr. Phillip Low.

-Dr. Julian Stewart, New York Medical College

Question:

What suggestions do you have for temperature regulation? My daughter's temp was 105.3 last night. She is on wellbutrin, pindolol, midodrine and just started clonindine and domperdine. Any suggestions would be appreciated.

Symptoms:
temperature regulation
dizziness (passing out)
gastroparesis
increased heart rate,etc.etc.

-Angie M.

Answer:

I have not had much experience with this since fever has not been much of a complaint in my patients and research subjects. Often they are hypothermic. If there is a fever of unknown origin, that requires an evaluation all on its own and can often lead to a diagnosis. One autonomic cause of fever might be absence of sweating, which is usually very apparent to the subject. The skin is the major thermoregulatory organ. Are there problems with skin circulation? Also clearly the brain center in the hypothalamus needs to be evaluated by a neurologist. There could also be metabolic concerns. I believe that the Vanderbilt folks are still doing a fairly detailed evaluation of these matters as part of on-going research.

-Dr. Julian Stewart, New York Medical College

Question:

Exercise guidelines:

There seem to be 2 points of view regarding fitness training for patients with OI. 1) exercise lying down like pilates, swimming, or a recumbent bike, and 2) train your body to accept standing by exercising in the upright position--walking etc.

Is there any consensus? Does it depend on the individual's diagnosis?

This question also extends to whether we should avoid standing, sit with our legs up, and use pressure garments to compensate for the OI.

Thanks,

-S. Thomas

Answer:

For many years, most autonomic physicians have felt that ongoing exercise is an important component of therapy. However, there is very little data on how useful or important this is, nor as to the best exercise regimen. This recommendation was based on older data that exercise can increase one’s blood volume, and on the anecdotal observations that those patients who did exercise regularly (despite the fact that they felt worse in the short-term) seemed to function better over time.

Currently, Dr. Benjamin Levine in Dallas is conducting a rigorous study of a fairly aggressive exercise regimen in patients with POTS. Preliminary data suggests that it does help to “remodel” the heart and to improve the orthostatic tachycardia. If any interested patients live in commuting distance of the greater Dallas area, then they may be interested in participating in this exciting study.

At this time, we recommend starting (for several months) with non-standing exercises. Rowing machines have been thought to be ideal, although water exercises are also thought to be good (and lower impact for those with joint problems).

-Dr. Satish Raj, Vanderbilt University Medical Center

Question:

About a week before my menstrual period, my POTS symptoms flare up and I faint frequently. I can barely get out of bed for 4-5 days. Others with POTS have told me that going on birth control is the best option for dealing with my symptoms, but I really don't think it's a realistic option for me. I have tried several kinds of birth control pills, depo, and the nuva ring, but these have only made me feel worse (mainly due to migraines). I currently have a copper IUD. Are there any other options for dealing with the symptoms (mainly the syncope)? Thanks you for any tips/advice.

S. Skelcher

Answer:

Flaring of symptoms before the menstrual period is fairly common in patients with POTS. Oral and other contraceptive methods can be helpful for patients who have no contraindications and can tolerate hormonal therapy. There are several options that can be explored in those who cannot tolerate contraceptives:

1. Begin preventative treatment every month a week before your period and prior to the expected worsening of symptoms. This may include increasing and supplementing the medication and non-medication treatment that you are implementing daily. For example, taking extra doses of Midodrine, Mestinon, a beta-blocker or a benzodiazepine a week before your period may help decrease or prevent symptoms before the expected flare-up. Increasing fluid and salt intake above your daily amount may also help.

2. Depending on the status of your POTS beyond the premenstrual exacerbation, you may want to discuss with your doctor adding another medication on a daily basis, with the goal being to better control both daily symptoms and flare-ups before your period. Selective serotonin reuptake inhibitors (SSRI) can be helpful, with some physicians using these during the luteal phase of the menstrual cycle only - i.e. in the 2 weeks preceding your period. Serafem (Prozac) can be used in this fashion.

3. There is also the option of taking oral contraceptives while starting on a medication that would treat and prevent migraine. This may be worth considering if a trial of oral contraceptives results in more stable blood pressure/heart rate and a decrease or elimination of fainting, and if migraine is the only side effect that prevents you from taking oral contraceptives.

- Svetlana Blitshteyn, Mayo Clinic, Jacksonville

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