Possibly Pots

When I was 17 I started having weird medical problems, I was going to the washroom ALOT and was having weird anxiety, my heart would palpitate really weirdly, blurred vision, weakness, fatigue, feeling faint disoriented. I went to my doctor and i had tons of tests done and they came up with nothing, possibly just overactive bladder and anxiety disorder but i wasnt convinced. Then they found out that I had Reactive Hypoglycemia. I went off sugar and caffiene completely and things did improve but not completely.

Then it got a lot worse in the past year i started having horrible gastro problems. I couldnt eat anything without diarrhea and then boats of constipation. Eventaully it got to the point where i couldnt tolerate any wheat, gluten anything fatty. But test after horrible test they couldnt tell me why. My doctor eventually just said it must be IBS. Still I couldnt understand why a 20 year old girl who doesnt drink, smoke, do drugs, or eat any kind of sugar or junk food could be so sick all the time it was one diagnosis after another that just seemed to be a guess by my doctor nothing definative. It got so bad I couldnt go to university and had to drop out a semester because I was nearly passing out every day on the train. I had to scale back work to maybe 2 shifts a week and even then that was hard. Finally a week ago after 8 days straight of horrible vertigo i went to my doctor and he diagnosed me with benign positional vertigo. I had had enough, i started searching myself, medical journals, websites, text books anything and many things looked had some symptoms but not all. Then i found an article on POTS that would explain all the diagnosis i had had so far plus the rapid heart rate a dropping blood pressure upon standing, the intolerance to heat the pooling of blood in my legs, seeing black dots with weird blurred vision.

I havent been formally diagnosed, but for the first time in 5 years i feel that I have the answer to why my life has been so thrown upside down. I have a tilt test next week and as weird as it sounds i hope im right and i'll put an end to this horrible feeling of not knowing whats wrong. Feeling like im dieing and having the doctors brush it off as stress or anxiety, or as my doctor like to put it "Some people just get things and we never know why".


smm12 smm12
6 Responses Aug 12, 2008

That sounds just like me! I've almost had to drop out of school so many times. One of my biggest issues the excessive sweating. I think I have POTS but it's not so extreme that I have to lay down all the time, and I get hot hands not cold hands. Still trying to figure out what's going on with me. Hope you can find out how to heal!

I have 16 year old daughter I believe has this dianoses. For 2 1/2 years she has fainted, blackout, heart beating fast then slows down and she doesn't usually remember to much after that. She's home schooled since teachers are not sure what to do with her anyore. Drs diagnosed her with neuro cardiogenic syncope and severe gerds which she's had all her life. Finally we have a dr in UCLA that thinks is dysautonomia. They were planning on putting a pacemaker since her tilt table test came out possitive and went into cardic arrest. Yes her heart stopped. Wasnt not good. Freaked me out. Still trying to decide what Drs are going to do to get her back into school. Bad enough she has this problem but I don't want her to feel like she's being punished or separated for her condition either. Anyone with this please let me know what you do to have as normal of life as possible.

ooooh my god!!!! this is me im over whelmed <br />
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Wow what know

I have been having these problems myself for over 10 years, I am now 25. I resenting came across this and almost cried because even though i havent been diagnosed I believe I finally have my answer. I go next month for a tilt test so Im hoping to get some resolve.

Hi smm12--I agree with Maisie87--I'm no Dr. but it does sound like you have POTS/dysautonomia. I have had similar symptoms for years and my son who is 18 has had them for 2 yrs. I remember the first time I read about POTS on the internet I burst into tears--it was the 1st thing that sounded like me. We're on a gluten-free diet--but it doesn't help all that much. I take Nadolol for the tachycardia--(after my tilt table test)--my son isn't on any prescriptions. I read about a new treatment with secretin--a digestive enzyme--but don't know if any Dr.s are prescribing it yet. Good luck with your test and treatment. For me the best type of Dr. I've found for this is a neurologist. Take care--Delina

Hi smm12<br />
<br />
Sorry about your frusterating journey to a diagnosis.<br />
My story is similar, I'm 22 and after two years of nausea/vomiting/passing out/dizziness/ i finally was diagnosed with POTS a month ago. I diagnosed myself before the official diagnosis= just like you. <br />
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Go with your gut- just like you knew IBS didn't explain ALL of your symptoms, or reactive hypoglycemia. You will know when a diagnosis sits well with you. I'm no doctor, but am very experienced with POTS and sounds to me like that's exactly what you have.<br />
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Good for you for never giving up on finding answers.<br />
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hope all is well<br />