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9 Years later-Accurate Diagnosis


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I started having high natural heart rate and palpitations in February of 1997 at the age of 16, and after nearly 9 years of random diagnoses, such as Atrial Fibrillation, SVT, Panic Attacks etc. I finally have a doctor who was able to give me a straight answer. I have IST/POTS (Inappropriate Sinus Tachycardia/Postural Tachycardia Syndrome). :blink:

So I've been told a few things, increase my sodium intake, water intake, continue exercising, stay on my heart meds to regulate my heart rate and blood pressure, and basically "hang in there". Anyone else have any suggestions for the new person?? :D

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Welcome to the site! Nina, one of the moderators seems to be the keeper of the sites with ideas, but at least wanted to welcome you. Most of the things you do, I can't, because I have persistent hypertension, but a lot of people do all sorts of different things. You should start getting responses before long. Again welcome! morgan

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hello & welcome!

unfortunately it's more the norm than not to go through years of misdiagnosis, no diagnosis, etc in the land of dysautonomia. and of course all of the accompanying frustrations. our age profile sounds similar as i'm 25 & have had "obvious" symptoms since i was around 16 or so...some hints earlier but only in retrospect. i have OI/POTS & NCS plus some added bonuses added in the past few months that don't fit too well in a category.

there are a lot of good resources on the site, & lots of great people. check out all of the links in at the top of the forum postings as well as from the main page...they can keep you busy for ages, nevermind reading posts - present & past. there's a search feature too that can be helpful if you're wondering about something in particular. the things you mentioned that you've been directed to do are some of the most "popular" and do a lot of good for a lot of us, in part or in whole, alone or with other stuff too. and patience & perserverance are musts:-)

good luck & hang in there. getting a diagnosis isn't a magic fix but it's definitely a step in the right direction!

:-)melissa

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Hello!

Welcome to the forum! Wow, it sounds like it's been a long road for you! I hope you find lots of help and encouragement from this site.

Lisa

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Welcome to the site!

Glad you got a diagnosis and I certainly hope you will feel better soon with these new things to try.

You can do some searches on topis on this site as well and find lots of good info.

My best advice for you at this point would be to try the new things the Dr suggested and keep a log of your symptoms and see if you can find correlations between things or things that exaccerbate your condition. (for example many people feel worse in heat, with hormone changes, certain foods etc).

Again, Welcome!

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Your story sounds like Bronwyn Evans' story: http://www.masmith.inspired.net.au/docs/stories/bronwyn.htm

You may wish to have your thiamine levels checked. Thiamine levels are rarely tested unless you are an alcoholic or have a serious intestinal problem and thus would have problems with thiamine absorption.

If your thiamine levels are normal, you may wish to be tested for a mitochondrial disorder, especially if there are other people in your family with a similar problem (www.umdf.org). Mitochondrial diseases are treated with huge doses of vitamins and cofactors.

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  • 3 weeks later...

Thanks for all the responses. Sorry I am just responding now, I was on vacation shortly after this post and my EP study. Went out to CA to meet the bf's family. Interesting trip to say the least. Looking forward to being an active member of these boards. It's been a rough road and I've had a rough few weeks again, seems to happen in spurts for me.

;)

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Hey there Krazy.... ;)

Sorry, I was away on vacation when you posted your original post...and somehow missed it when I returned.

My best suggestion to start with is 1) read through the entire DINET primary site, but pay particular attention to the sections labled "What helps" and "What to avoid". http://www.dinet.org

and 2) take a peek at the pinned topic at the top of this forum that's labled "help yourself to..."

BTW, anyone who has a really great publicly available link that I do NOT have listed in the help yourself thread, please foward to me via email or private message so that I may review the resource and decided whether it should be added. In general, I try to post links that are from highly reliable sources, such as from an established medical journal (JAMA, Lancet, etc.), university, research facility (NIH, NINDS, etc.). I tend to avoid posting personal webpages unless they are well researched and contain listed references to solid resources.

Nina

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Nina,

Thanks for the feedback, I am just starting to do a lot of research and I am now on a mission to find different things that will work for me to make me feel better. I can't explain how comforting it is to read other people's posts and know there are so many other people in the same boat, no matter how crappy the boat is. I feel like I can finally get answers, valid answers, to questions and concerns. I don't feel like a Hypochrondriac or Crazy either which is new.

I'm contemplating a specific diet and lifestyle, I just need to start figuring out what will work for me. Thanks for the welcome!

~Karen

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welcome. Many of us took years to be diagnosed properly. Although dysautonomia is no fun it's a relief to finally understand what is going on. (my diagnosis took 11 years of misdiagnosis)

This site has been SO helpful, not only in terms of support, but in hearing what works for different people. The general rule is that the are no absolute rules. What works for one may not work for someone else. For example, my body doesn't tolerate carbphydrates well, it sends my blood pressure crashing down. Others may not have that experience.So, welcome, please lurk on the site, I'm sure it will be helpful!

Ariella

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