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How Important Is Finding A Cause For Pots?


katyroq
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I am a newbie to POTS and have a mild case. The doctor who diagnosed me basically said make sure to take a walk every day, eat salt and drink some gatorade, and come back if anything gets worse. At first I was just very relieved to find out there was nothing too bad causing my near fainting episodes. But now it is starting to bother me that I don't know what caused my POTS and if it is even important.

I think I have had symptoms for a few years but they did not start as a result of a virus or illness. Also I am 31, so like the doctor said many people grow out of it but I am a little old for that. Could the fact that I have had a very gradual onset and also very mild symptoms mean that my body is under a small amount of chronic stress that is adding up over time? If so I would think it is important to find the cause...?

Also does anyone else feel like your body has adapted so as to not experience the symptoms strongly? For instance my HR can go from 55 lying down to 170 getting ready for the day and I would hardly notice. I equate being breathless in the morning with being tired, not having tachycardia! I am pretty in tune with my body and already drink 3+ liters of water per day, eat very little gluten or dairy, no caffeine, sleep 9-11 hours per night, etc.

All of this to say...should I just be thankful that I am okay, deal with the occasional near fainting, and accept that this is just how my body is and I am already doing the things that are good for me? Could it even ever be considered "normal" to have huge hr swings?Or does the fact that I don't know the cause mean something? And how would I find that?

Would be interested in hearing others thoughts.

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Hi! Im new as well. I have the same questions. My symptoms are horrible and have gotten worse over the last few months. Prior to onset i went through 3 years of chronic stress and im wondering if that plays a role in this. My anxiety since diagnosis has spun out control. And now i dont know what is causing what. Hopefully someone can answer your questions!

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To Katy...if you have an underlying autoimmune disorder, there are treatments, like IVIG, that can be really helpful. I'm continuing rheumatic testing, even though it's pretty clear my case is idiopathic, just for the possibility of such treatment.

Robin, there is nothing quite like anxiety with a deregulated autonomic system. Makes me long for the days of old-fashioned anxiety attacks! I now have a great talk therapist who did a lot of reading about dysautonomia just for me, and I push myself to see her...it's so helpful. I also suggest getting some tapes, and/or direct instruction if you can, for meditation and/or light yoga (or any physical movement). I also take a low dose of Klonopin at night.

To Katy too: I also had a few very stressful years before I got sick...it might be more likely that latent dysautonomia made things feel more stressful rather than stress "causing" this. In any event, it's water under the bridge for us. It's important to walk away from self blame (I tend to this too). We all have a lot of adjustment to do, so of course there is lots of anxiety. I'm trying to seek as much good help with this as possible. We're lucky to have this forum!

....S

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For me it has become an isue not having an underlying diagnosis. My Neurologist had me try IVIG, with a high suspicion of my dysautonomia being autoimmune, however no diagnosed autoimmune disorder. My insurance allowed it on a trial basis but is now denying it because I have no diagnosis that it is proven to treat. So in a way yes it is very advantageous to have a cause for your POTS.

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Thanks for the suggestions of autoimmune. I'll have to look into that. Actually there is a poll thread that just got bumped up on what caused people's POTS and it looks like ~50% don't know...so maybe I can't necessarily expect to find out.

And Sylvie, I definitely agree that I can't blame POTS on stress. I think it's definitely an underlying issue that can become problematic with other stressors present.

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