POTS Symptoms

[mike04021949]

Hello

I am writing regarding my son who has been unwell for over four years but who has now received a diagnosis of POTS from the UK’s National Health Service.  However, he also has the symptoms below which we don't think - though we may be wrong - are necessarily typical in POTS patients.  

1. His temperature drops whenever he does anything.
2. He slumps every day between midday and 5pm.
3. He has “racing thoughts” when he eats.
4. He sweats and shakes when he drinks any liquid.
5. When he needs to open his bowels, he is given the “message” by sweating, shaking and feeling anxious with a raised heart-beat.  This goes instantly he has opened his bowels.
6. When he looks at a computer screen, he seems to release adrenaline with all the symptoms associated with that.
7. If he were to sit in the sun for half an hour or so, he would get fevers two or three days later and these could last for weeks.
8. Between November and April each year, his ESR, CRP and neutrophils are raised.  Conversely, in the summer months, they become normal.

I would be very grateful if anyone could share any thoughts about this and I look forward to hearing from you in due course.

Kind regards,

Mike

[mike04021949]

Thank you very much for your reply.  Below, we have addressed your questions and added a few more of our own.

First of all, In answer to the question about how my son was diagnosed with POTS and what tests were performed, he attended an appointment for tests in London where he underwent a tilt table test along with adrenaline, noradrenaline and dopamine blood tests.  The POTS diagnosis was confirmed when we rang some time after the appointment.

In response to the other question, they did not for causes of small fiber neuropathies.

The questions we would like to ask are as follows:

1.  Does ESR & CRP go up with POTS as, in my son's case, both are raised?

2.  Is it possible to explain why he does not sweat from his face, chest and the palms of his hands although, everywhere else on his body, he sweats as normal?

3.  When you say that vitamin deficiencies could be one possible cause
of small fiber neuropathy, can you say which vitamins might typically be lacking?

4.  Would you expect hair loss with POTS?  My son has lost hair from his head as well as, on the right hand side of his body only, from his thigh, calf and elbow.

Once again, many thanks for contacting us and we look forward to hearing from you again.

Mike

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Postural orthostatic hypotension syndrome (POTS) is defined by an increase in heart rate by 30 bpm on standing with no to minimal change in blood pressure. The etiology of POTS is unknown and may actually have many causes. It is commonly associated with other conditions such as chronic fatigue syndrome, migraines, anxiety, and/or depression.

Many of your son’s symptoms could be a small fiber neuropathy. There are two types of sensory neuropathies in the body – large and small fibers. With small fiber neuropathies, symptoms include burning or buzzing or other vague symptoms starting in the feet and hands then in some cases spreading to other parts of the body. Sometimes these may not be present, but the nerves that innervate the cardiovascular system may be affected. The EMG/nerve conduction studies (NCS) (tests done to check for neuropathy) will not show an abnormality, and a definitive diagnosis can only be made with a skin biopsy so that the number of nerve endings can literally be counted. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves. A tilt table is often performed when there are cardiovascular symptoms. There are several causes of small fiber neuropathy, including diabetes, vitamin deficiencies, and autoimmune problems.

How was your son’s POTS diagnosed? What all tests were performed? Did they also search for causes of small fiber neuropathies?

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.