POTS

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Does anyone here have POTS? My heart rate jumps up just walking around the house, showering, etc. Palpitations come along with that. Cardiologist checked it out (halter monitor), said I have SVT. I’m allergic to beta blockers. I could take calcium channel blockers, but I’m a little leery of them. Any ideas?
 

Jyoti

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Hi @alwayshopeful. It is awful, isn't it? I find POTS to be more debilitating and limiting than ME, though it is often hard to know which one is which. I think if you look through the Phoenix Rising fora, particularly this one where you posted-- on autonomic symptoms, you will find a wealth of information. There are a few things--you may already know--that tend to be helpful for some people with POTS or OI and do not involve pharmaceuticals. Things like compression socks or pants and increasing salt intake.

If your doctor hasn't recommended anything other than meds, you might want to read a bit here on Phoenix Rising and/or check out this website: http://www.dysautonomiainternational.org/page.php?ID=48 I apologize if all of this is stuff you've already done, but these are good starting places.

My POTS has diminished a great deal in severity since I started regular cervical traction. This may not be the case for anyone else, but I share it to encourage you to explore because there ARE things possibilities out there that might improve your quality of life.
 

JES

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My POTS has diminished a great deal in severity since I started regular cervical traction. This may not be the case for anyone else, but I share it to encourage you to explore because there ARE things possibilities out there that might improve your quality of life.
Interesting, haven't heard of anyone reporting this kind of permanent effect from traction before. May I ask is this with one of those over-door devices or do you have a person doing it?

There were quite a few reports about cervical traction lately in attempt to diagnose those who may have a condition called CCI (craniocervical instability, you probably know about it). Some of those patients reported they felt a reduction of symptoms during traction. I never felt improvement in my POTS symptoms during traction, so I discontinued it quickly, but if traction did provide you with long-term improvement, perhaps I should trial it again.
 

Jyoti

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I have no idea what is going on in my neck and brainstem @JES. Been trying to figure that out for quite a while. At this point, it looks like AAI but not CCI in terms of the imaging, though definitive diagnosis has not been made. How about you? What is your situation vis a vis the upper cervical spine?

My response to manual traction was positive for CCI. In fact, it gave me such relief, my PT suggested I borrow a supine traction device (Saunders or one like it) from her office and use it at home daily. I did that for a month and the overall improvements during the traction and for a few hours afterwards were so stupendous, I bought one for myself. Not cheap, but they do not pull up on the jaw and provide, I think, a cleaner kind of traction than the over-the-door sorts.

I used that twice daily for another couple months, tapered down to once a day and am now able to use it every other day for about 10 minutes. It has not cured me, but my function has improved about 10-15%. And while I did not notice any specific cessation of POTS symptoms during traction--like you--I have noticed that they have become more intermittent and mild to the point that I haven't had to even think about lying down in public in months!

I think there is something extremely reassuring about knowing that when I start to feel symptoms--POTS/PEM--there is something to DO about it. I cannot directly tie the decrease in POTS symptoms to the traction, but that was the thing that changed, the new treatment introduced.

Jen B's POTS went into remission after her CCI surgery. I don't know where it stands at the moment, but I recall that it was a dramatic improvement she experienced after the fusion. So there may be something to it. As always, we continue to try to shine light into the mystery....
 

Timaca

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There is a Supraventricular Tachycardia FaceBook group that you might find helpful. The Dysautonmia group mentioned above also has a FaceBook group (Dysautonomia International) that is by state (if you live in the USA), so that is a nice way to learn about doctors and other support people.

Good luck!