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hayley
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hi everyone.i had a nice time in london everyone was lovely its the first nice experience ive had with doctors.but i still dont like hospitals :)

i just wanted to ask does anyone have some weeks where they are sort of functionable then go to completetly bedridden and not being able to do things for weeks and then go back to being a bit better again

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Hi Hayley,

I'm very glad for you you're hospitalstay was not too bad (for being in a hospital :) ) and that tthey treated you nicely.

I can't answer your question because I'm only completely bedridde when I don't take my meds (like when I have to do some tests). In trying to find out what meds work best on me I'm trying new ones about every 4 to 6 weeks (unless there's a med that works good and doesn't have too bad side-effects, but I haven't found that one yet except fo my bb's).

I guess you were'nt able to do some shopping (maybe you had someone to accompany you?) in London, were you? London is just soooo nice this time of year, I would love to go and do my Christmas shopping there. Take care,

Corina

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Welcome back, Hayley! Hope you were able to get some answers, and not too drained after your trip. I'm terribly jealous of your being in England -- I've always wanted to go there (dig down to my roots and so forth)! :)

I can't say that I'm bedridden for weeks (except on Midodrine) -- for fatigue, etc. I've never had to stay completely flat for more than 2-3 days at a time. In my earlier POTS stages, I would have weeks of miserably-acute symptoms, a more functionable stage, and then things would start to crumble again. After tests, medical procedures, draining events (e.g Thanksgiving), etc., I usually end up in bed for a day or two.

I hope your question is more rhetorical than issued out of personal experience. :) Stay well! :)

Angela

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thanks for replying im not on medication .but i find that i have weeks where am sort of functionable then weeks where im bedridden and then functionable again.i wondered wondered if others had the same when they werent on medication.

oh and englands not all that great its always raining.

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hayley,

thanks for checking in with us. gosh, i hope you finally get some answers and some respect from doctors for good! you deserve it! you have been through a lot...

i echo angela's comments. POTS can be very cyclical. i am never very functional but not bedridden either...but it definitely swings a lot! also, like angela...overdoing or big events send me into a need for a lot more rest. like thanksgiving! took me at least 1 1/2 weeks to recover.

one thing to watch is when you are highly functional...are you over doing and not listening to your body and then crashing? i do that b/c i want so much to keep feeling 'good' i sometimes don't listen to the signs and then pay a high price later! just something to pay attention to...

well, i know it rains a lot in england, but i love it there anyway...i studied abroad there and have been there two other times. thank goodness i travelled before i got sick! i actually live in a town where it rains a lot too...and i am getting a bit sick of this dreary weather! here's hoping for some sunshine!

when you are up to it...let us know what the doctors suggested for you?

emily

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