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Official Pots Diagnosis


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Hi, i had a tilt test and autonomic function tests last week and saw the doctor for the results on tuesday. I do have pots!(i have m.e/cfs too). He said on the tilt, my hr went straight up tp 135 and later on was 170. I forgot to ask what my bp was. after 5 mins of the tilt i started shaking and it just got worse until i was having violent all over tremors. Ive had this quite alot before from different things, talking or too much noise. I asked why it happened and they didnt know. Does anyone know why? The doc said the autonomic function tests pointed towards pots but didnt explain any further. i always forget to ask at the time! During the function tests one doctor said, look she has hives on her neck, does this normally happen? To which the nurse said no. Has anyone else had this?

Any way ive been put on ivabradine. I also have to have a 24 hour hr and bp monitor.

The doc asked my symptoms(i hadnt seen this doc before) and i was explaining the awful feelings i get in my head. Im constantly dizzy, drunk feeling, spaced out, feel like im putting and have an awful pressure feeling in my head. he got me to stand up and close my eyes and he had to keep catching me as i was swaying forwards and backwards loads. I know this happens always when i stand, even with my eyes open. he also got me to walk along a straight line and i couldnt do it, i looked drunk. Does anyone have this and do you know why?

Thanks. :)

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The lack of blood flow to the brain and the dysfunction of our autonomic nervous system in general causes our myriad of symptoms.

I started off two years ago incredibly ill, nausea, horribly dizzy and lightheaded 24 hours a day. I have a good doctor and supplements, no prescriptions. I now feel good unless I am up too long. I cannot do hard work like clean etc. but I can sit and feel great. I can walk now and do more and have a great quality of life. I hope to keep improving. I still get bad days, but not many really bad ones.

I think our nervous system wants to be well and balanced, it takes time and good care. Each person and cause is also very different.

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Just as Sallysblooms wrote, it is our autonomic system.

I shake too! Sometimes so bad I look like I'm having a seizure of some sort...it only happens after exertion/walking too fast or my TTT. And it is way worse when I am off my Beta-Blocker. I also get hives and a weird rash but it has only been present during 1 doctor visit & he couldn't explain to me what it was... I always forget to ask things too. I am so centered on trying to keep my body from catapulting to the floor or off the table... ;o)

But like I said hopefully you can get on some Meds that may be able to help you a wee bit... I am no where near where I was before, I definately have good days and bad days but I am a lot better ;o)

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"i was explaining the awful feelings i get in my head. Im constantly dizzy, drunk feeling, spaced out, feel like im putting and have an awful pressure feeling in my head. he got me to stand up and close my eyes and he had to keep catching me as i was swaying forwards and backwards loads. I know this happens always when i stand, even with my eyes open. he also got me to walk along a straight line and i couldnt do it, i looked drunk. Does anyone have this and do you know why?"

This is exactly how I feel. Is yours all the time, everyday, all day? Mine is, somedays worse than others. It usually feels somewhat better laying down. Markedly worse the minute I get in the car. I could be feeling sorta ok in the house - as soon as I get in the car and start driving, I realize how messed up things are. I don't know what causes it - that's the million dollar question. If laying down helps, I think it may be blood flow related. Although I still think there is some vestibular connection - just not sure if vestibular is triggering the ANS or if the ANS is messing with the vestibular system.

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Sometimes it helps me to eat ice or put an ice pack on the back of my neck when I get really bad. Don't know why it helps, but it does.

After trying Methyl-dopa, Propranolol and Midodrine and not being able to tolerate them, I AM doing some better on a small amount of Clonidine. It just takes time to find the right medicine, but it sure is frustrating in the meantime.

My cardiologist wanted to put me on Ivabradine too, but told me he thought it was unavailable in the US. Do you live in the US? Can you now get it here in the USA? I know Europe has it now.

Hope you feel better soon!

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Thank you all so much for your replies. Naomi, yes i have the weird head feelings all the time. in different variations and severity but it has never gone away in 12 years. It is much worse than it used to be, im guessing from the pots as well as cfs.

kluesyk, i live in england. Ivabradine is licensed as an angina drug here and my doctor can prescribe it for pots too.

:)

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