Pots

[gelann]

Rita,

I am working on going to Mayo after not having much luck with the U of M Neuro department. Did you feel like Dr. Low was helpful?

Rhonda

Excuse me for jumping in, Rhonda did you go to U of M mean University of Michigan or is there another u of M. Who did you see there? And I gather that you would not recommend them? Gelina

[MNsue]

I am going to the University of Minnesota. I have a good cardiologist at the University of Minnesota, however I seem to be stumping the neurology department. I hope to be going to mayo for more answers.

Rhonda

[briarrose]

I agree with most of you that they are missing something. However I believe that this is an Autonomic issue and not specifically Cardiology. On that note, I've only been able to find cardiologists to treat as all of the Neuro docs that I've met up to this point don't want to touch this disorder.

As for tremors being thyroid. I know that it can be one symptom of a thyroid disorder but for me it's not thyroid. I experience my worst tremors with bursts of adrenaline or exhaustion.

I liked Dr. Grubb's explanation of Dysautonomia; let me see if I can remember how it goes, my interpretation might be a little crude though Think of your brain as a thermostat and your body as the furnace. You set the thermostat at a certain temperature say 70 and you expect your furnace to turn on to accommodate you, however the furnace doesn't always fire up. So the message is getting lost somewhere between your brain & your body (this usually takes place in the Thalamus & hypothalamus.) So where is the signal being lost the thermostat or the furnace, thus in lies the problem.

I tried to find you guys some websites not sure about the credibility of the first one though

http://www.incrediblehorizons.com/balance-...%20function.htm

This might be better - Hypothalamus

http://biology.about.com/library/organs/brain/blhypothal.htm

Thalamus

http://www.architecture-mind.com/thalamus.htm

To get a better explanation of all of this I would recommend downloading the book that is offered for free download from the NDRF ?For Patients with Dysautonomia.?

http://www.ndrf.org/Reference.htm

[ellen]

Briarrose- thankyou for the info. I was a bit overwhelmed by the volume ( I feel like I need an "intro to hormones" 101. Then "intro to ANS" 101, intro to cardiology, etc. ... ). but I'm learning.

I have had tremors all my life, even before I was hypothyroid. But my doc (who doesn't seem to understand POTS although he said he had heard of it) blamed it on too high a dose of thyroid. As for the pain in the back of my neck, he said that was probably the most common complaint of people over 50 (I've had it since I was 36).

He couldn't explain my fainting, low blood pressure, joint pain, orthostatic tachycardia, so he did finally agree to send me to a cardiac EP.

I'm very frustrated with the doctors I have seen-they have definitely missed something in my case. I'm so grateful for this website and so many of you members who have had the perseverence to continue seeking answers, and are willing to share your experience and knowledge.

[icthus]

Thanks so much for asking this question. I can relate to your quandry.

Today, while trying to find some answers for myself, I bit the bullet and researched Multiple System Atrophy. There is a very informatiive article regarding dysautonomia and how it negatively impacts the body by system (gastro, urinary, cardiac, etc). It was really helpful. They said things in there that I've not read elsewhere, and vindicated many of the symptoms which physicians have said are "most unusual." You might want to try it.

http://jnnp.bmjjournals.com/cgi/content/fu...4/suppl_3/iii31

"Autonomic diseases: clinical features and laboratory evaluation"

I used an online medical dictionary to get through some of the jargon.