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Hello And Thank You


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I'm a new member here and first, I just wanted to thank you all for choosing to build such a good community and share your knowledge and resources! This website helped me to understand what had been going on in my life starting around age 16. Now in my early 20s, my symptoms have increased. Falling over from near-syncope and fatigue became common occurrences. Other symptoms that had been there before increased, as well: frequent urination, constant thirst, palpitations, tremulousness, gastro problems (pain, constipation, diarrhea, bloating), among others - exacerbated by heat, exhaustion, and stress.

After a disappointing appointment with my PCP, who did not take me seriously at all, I decided to seek out a cardiologist. I was told that my symptoms during the TTT did not fit a postural problem and that I had Inappropriate Sinus Tachycardia and given a prescription for Magnesium Oxide. When I looked at the test results, and read more about IST, I was convinced that this was wrong and that I have POTS. My resting HR is not high - it's frequently in the 50s. While my cardio had excluded postural because I passed the TTT with no drop in BP, I demonstrated a 50+ jump in HR within the first ten minutes and throughout the test that righted itself when the table was lowered. My ECG showed both bradycardia and tachycardia, with highs in the 160s, but night time was not high. I raised these points with my doctor at a follow-up appointment and he agreed with me that I "probably" have POTS and started me on Midodrine.

Now, I'm trying to decide whether "probably" does it for me and whether my cardio should have seen the points I raised before I did. My next follow-up with my cardio is in Sept. I'm considering making an appointment with Dr. Abdallah in northern VA, because my cardio is not a specialist and I want both the validation and best treatment that comes with a diagnosis.

Right now I'm trying to find a balance between understanding all of this, my grad studies, volunteering, and what I can manage of a social life. I'm lucky to have understanding friends and family who take me seriously when I'm fatigued or with other symptoms. This community has been invaluable in helping me learn more about what I believe is going on with me. There's a quote I like by Lin Yutang: "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Thanks for sharing your experiences to bring into view the road for people like me - and I hope I can do the same for people.

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Hello and welcome. Sorry you've had a need to find us.

While I haven't seen Dr. Abdallah personally, I know others on here have and really liked him. If you search this site, I'm sure you'll find some threads regarding visits others have made to him.

It's interesting how many cardios think you have to have a BP drop for POTS when by definition POTS is the HR increase WITHOUT the BP drop you would expect given the rising HR.

My local cardio misdiagnosed me as well. It was endlessly frustrating to have to deal with him always asking me questions that pertained to HIS diagnosis but had nothing to do with my symptoms. I finally sought autonomic experts and got the correct diagnoses. While it maybe hasn't improved my situation a lot health-wise it's certainly saved me a ton of frustration and stress- which I think has it's own benefit to my health.

I like your quote. It's a great analogy because all the people on the road of POTS with us have certainly been helpful making it visible to me also.

Glad you found us to walk along with us. :)

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Thank you both! I just scheduled an appointment with Dr. Abdallah for the end of June. Like you, Chaos, I find myself needing the health benefit of knowing that I have a diagnosis, at the very least. I'm lucky in that my symptoms are not at all debilitating, but are enough of a nuisance to make me constantly fatigued, and having a more definite answer would certainly give me some peace of mind!

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