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Ways To Prevent Pots From Coming Back?


IceSkate
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After having some problems this summer, and having a tilt table test this fall that showed my heart rate going from 60 to 120, and having 2 months of not being able to taste anything and having full body numbness, I think I can say I had POTS even though my doctor does not think so. I had an MRI to rule anything else out, and it was clean.

My POTS seemes to have gone away, but I am very scared it will come back. I'm 28 by the way (I know adults have different relapse rates than kids).

I'm just really scared because at the time I had POTS I had just graduated and had no job, and I probably would have had an immensely difficult time working. Now that I have a job, I'm really worried it will come back and I won't be able to work.

Has anyone found any way to prevent it from coming back? What's worse is that there probably won't be any doctors to believe or treat it if it does, just like the first time.

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It's typical for POTS to wax and wane unfortunately. That said, many people do get better over time.

Fortunately there are a variety of meds that are possible to try to manage symptoms if you do have problems again.

There has been discussion about the value of exercise, too, on the forum recently.

Glad you are feeling better!

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IceSkate, I don't think it was just anxiety, but certainly there could have been a component of anxiety - perhaps caused by the POTS itself. In terms of prevention I don't really have any experience because I'm still suffering from POTS, but I want to ask if your TTT was done while you were still symptomatic? Either way, they're just numbers, it's great if you're asymptomatic.

I guess if I were looking at preventing a future POTS outbreak I would generally conduct myself as follows:

1.) I would eliminate stress as much as I can. For me, stress seems to bring on POTS episodes, and so I think one should take life a little bit easier than they normally would. I try not to put myself in a position where I am not enjoying my days and I use stress reduction techniques anywhere and everywhere I can.

2.) Aerobic exercise. This seems to have beneficial hormonal effects that are relevant to POTS. It seems to lower angiotensin ii levels, get rid of stress hormones cortisol and norepinephrine, and generally boosts mood.

3.) Vitamin D. Vitamin D is a great renin angiotensin aldosterone regulator and can have many other beneficial effects as well.

These three things I listed in my own theoretical order of importance.

Edited by MomtoGiuliana
medical advice
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Congrats on the remission and being able to work! I agree with Jangle about stress and exercise. (not enough experience with vit. D to comment) I would also add, based on my experience:

-even though you are feeling better, be careful not to overdo it physically or with your diet or alcohol, etc

-get together regularly with your positive friends or family and try to laugh a lot

-don't dwell on it, if you worry too much that your symptoms will come back, they probably will...have you heard the phrase, "What you think about, you bring about?"

-don't schedule any surgeries/medical procedures unless they are absolutely necessary (I suspect one that I had last Fall made me relapse)

Enjoy this time!

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I think Jangle hit the nail on the head.

its important to note that according to work from Blair Grubb, Mayo and Dr Stewart/Medow for some POTS patients is monophasic - that is you have one boute that lasts a while and then you recover to a degree and never relapse.

Others do wax and wane and I look at this as being likely because of an autoimmune etiology in these cases. there is consistent evidence of an autoimmune basis for some POTS and more work is coming I believe in this area shortly.

If we assume there is autoimmune etiology then perhaos its wise to look at what might trigger relapse in other autoimmune conditions with a similar presentation - perhaps like M.gravis. This tends to flare up in summer, under conditions of stress, after strong sunlight exposure, and after poor diet or sleep.

Dr Weill suggests that keeping meat down to 10% of your diet and reducing dairy might assist to keep autoimmune disease in remission.

for me personally I always seem to get to a point where I forget Ive got POTS in a way and start pushing my body way too hard - under too much stress, I take too much on, I start drinking too much with friends, eating crap, push push push and then bham! its back again and I wish to high heaven Id not been to hard.

Every relapse Ive had has been between October and December - Spring to summer. Weird or what?? this also happens in M.gravis out of interest.

Things I have thought about to keep a relapse at bay include reducing fat in my diet, eating healthily, stress reduction and LDN.

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As for anxiety making it happen. There might be something to that to a degree, but POTS is a real, physiological illness with testable abnormalities. its like saying MS is psychological in a way.

Sure stress and worry might trigger it and POTS definately feeds off stress because it engages the similar part of the autonomic system, but it isnt psychogenic in most cases.

Something that you might find interesting: I once spoke to a doctor after a relapse and he gave me great hope about curing POTS with some research findings and I was very confident and I got over the relapse in 5 months. Another time I was pretty depressed about the research and it took 14 months. Interesting??

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