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I'm New, My Story So Far


margiebee
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I'm not sure if people do this often on this forum but I wanted to make a post introducing myself and seeing if anyone has similar experiences which I'm sure someone does! I am a college student from Ohio, and I have been dealing with POTS/dysautonomia symptoms since I hit puberty. Unfortunately in my case, as I'm sure many others, I did not recieve a diagnosis until this year, after about 7 years of symptoms. I had been told that I just had anxiety "or something" by many doctors, until finally I found a primary care doc at the Cleveland Clinic who realized something wasn't right and referred me to a specialist at the Clinic, specifically after I fainted in his office. They were measuring my blood pressure and heart rate around when I fainted and realized it was way off. Anyway, this year just a couple months ago I had the tilt table test and it did indeed show and increase in heart rate from around 70 supine to upwards of 140-150, it kept increasing for the entire 45 minutes I was standing and never stabilized. My blood pressure also dropped. My doctor said this is more or less diagnostic of orthostatic tachycardia or POTS, also mentioned dysautonomia given my other symptoms, but I am still new to all of this so its all a bit unclear to me. I am awaiting more testing which I will hopefully be having this summer to figure out what the factor is that is causing all of this, both of my doctors seem to think my venous pooling is pretty bad.

Symptoms I have experienced through the years have been dizziness which is the most common/constant one, occasionally blacking out and fainting (I get tunnel vision frequently), exercise intolerance, gastrointestinal problems (got a diagnosis of IBS when I was younger), heat intolerance, palpitations. My younger brother has similar symptoms but less severe than mine. The only med I am currently using is Clorazepate, a benzo, which I am taking a low dose and tapering off of with little problem so far. I hope to try other meds but I am very sensitive to most medications. I am also currently using compression socks which do make a slight dent in some of my symptoms. I am glad to have found this forum and would welcome any insight!

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Welcome to the forum. I have a son that was diagnosied with POTS when he was 11. He is getting ready to turn 13.. I'm glad you were able to get to the Cleveland Clinic. They should be able to help you and get you started on some medicines that may help your condition. Feel free to ask questions and look at articles that have been posted.

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Hey margiebee!

I am also from Ohio and I'm being treated at the Cleveland Clinic. My dysautonomia symptoms started when I was 16 but got much worse when I started college, and I wasn't diagnosed until I was 20. So I'm pretty new to all this stuff too. I just saw Dr. Jaeger last Friday and he gave my a lot of info and ordered a tilt table test that I'll get when I come home from school in a few weeks. I have most of the same symptoms as you. I take propranolol, a beta blocker, which helps a lot with the high heart rate and palpitations. As much as I hate them, I wear the compression hose too. This forum is great and I've read a lot of good advice on here over the past few months. It's also nice to see that other people are going through the same thing and know what it's like. I hope you get more answers and are able to try some new medications soon!

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Hope, I noticed your signature says that you have Oral Allergy Syndrome? My mother has something like that where she reacts to apples, pears, peaches, many fruits that grow on trees basically. So strange! Wonder if there is any correlation to POTS or if its just random

And Krissy, I go to Dr. Jaeger too! He is very good, one of few doctors that have taken me seriously. Propranolol was actually one that was listed as something for me to try, but my primary care doctor is worried it may lower my BP too much so he is leaning more towards Florinef. Good luck on your tilt test, it is quite an experience haha

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Welcome Margiebee! So sorry you are having to deal with this. It can be really frustrating, but I am encouraged for you in that you have found a dr. that seems to be on the right track in being able to help you. That in and of itself is so much more than many of us have. Chin up!! Hope you find some answers soon and a medicinal/or other protocol that can help you with your symptoms. You are certainly not alone and you've come to the right place. This forum has been so helpful to me in gaining information, education, commiseration, encouragement and so much more. Best wishes to you!!

Be well :)

Bebe

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Haha yeah I've heard that the tilt table is not much fun at all. I agree, Dr. Jaeger is definitely the best doctor I've been to so far. I have a low bp too but I do okay on a low dose of propranolol. I just have to stand up slowly so I don't blackout. He mentioned florinef when I saw him too but he wants to wait until after the tilt table test to try out any new meds.

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I just get so scared of the trial and error with new drugs because when I react poorly, which i usually do, its really bad. of course. When I was tried on tricyclic antidepressants (horrible idea with POTS I know), I literally slept for 2 days. I could not even summon the energy to be awake. And that was after 2 doses haha. I am also considering trying licorice root, I'm all about the natural stuff.

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Your story seems similar to my own, I've had POTS now for 8 years and pretty much my remaining symptom is lightheadedness and dizziness. I would suggest getting referred to somewhere like Mayo or Vanderbilt - places that are doing research on POTS. I'm not sure about Cleveland clinic, but they're probably good too. Just don't expect your typical run of the mill doctor to know anything about POTS and/or be capable of treating it.

There are a host of treatments out there, that you may want to try. Please take a look 'round these forums, you'll see a lot of good advice.

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Thank you all for your responses, so helpful! I have looked at some of the stuff going on at Mayo but I'm pretty confident in my doctor at the Clinic so far, he is a specialist for POTS and dysautonomia. My primary care doctor also treats several patients with POTS so he is at least familiar with the do's and donts. I'm hoping to at least figure out what's causing my POTS before I go for anything more than that

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Hi Margiebee! What area of Ohio are you located? I'm in Northeast Indiana, not too far from Ohio line. My pots symptoms started similiar to yours. The first time I fainted was in the doctor office when I was 13! I didn't get a diagnosis until I completely crashed last year. You are in the right place! I don't know what I'd do without this forum.

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