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Who has been told they have POTS or Dysautonomia ?

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Posted 12/4/2009 12:57 AM (GMT 0)
Just curious as I have been told both. POTS= Postural Orthostatic Tachycardia Syndrome. Dysautonomia is dysfunction of the Autonomic nervous system. POTS is part of Dysautonomia, but Dysautonomia is much more vague in that other things such as Tremors, Breathing Regulation, etc. is messed up.

I'm sure most have Dysautonomia by definition if you have Lyme, but more curious about the POTS.

When I was first told I had POTS, my resting heart rate would go from 75 sitting to 150 standing. It's doing weird stuff now that I'm Rifing for Lyme and Babs. Sometimes it doesn't go past 100 standing and sometimes it hangs in the 60's at rest. I was never Orthostatic with my blood pressure.

Gary
Posted 12/4/2009 4:48 AM (GMT 0)
I was never told I had POTS but my heart rate can get a little crazy sometimes. It will elevate while I'm sitting down resting. I'm asumming tachycardia with POTS only happens while standing?
Posted 12/5/2009 2:10 AM (GMT 0)
I am now on lopreesor twice daily to keep my heartrate and bloodpressure under control. Otherwise when I stand up they both shoot up to crazy numbers and I get all dizzy and sweaty. isnt that weird?
Posted 12/5/2009 2:34 AM (GMT 0)
Hi,

I have had a naturopath, and other people with POTS suggest to me that I have it, but I have not got a doctor to diagnose me. I have trouble getting doctors to believe anything is wrong at all- let alone test me for something like this, which is apparently missed a lot.

I'd almost (or actually) pass out if I stood up to long, and my heart race would be super fast all the time. Going up stairs makes me feel like I'm going to pass out (I routinely gray-out), and makes me exhausted and out of breath. I'm hoping it'll go away when my Lyme goes away, because as I said, I can't get a doctor to take me seriously. Anyway, I know a lady who is a member of some national POTS and Dysautonomia thing (sorry, don't remember what), and she thinks I have POTS....but that's all I know.
Posted 12/5/2009 3:07 AM (GMT 0)
Nikki,

What you describe is POTS. Don't waste your time for the diagnosis as they think it is caused by an unknown bacterial or viral infection :-).

I had what you describe very early on in my treatment. I went to about 10 cardiologists before I was sent for a tilt table test and was told it was POTS.

There is no real treatment for it. Beta Blockers and increasing your salt intake are recommended. I have done both with no success. My old LLMD says many with Lyme get POTS and it is very common and just part of the disease.

Gary
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