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super crash - my second worst


ramakentesh
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Having just returned from two months of 100% normal health overseas and finally the feeling that I might have moved the POTS thing behind me (background - symptoms started abruptly in 2003 - progressed until June 2004 and gradually improved until xmas 2004 where I have been fine - finally diagnosed Jan 2005 no treatment required due to improvement - bad reaction to all treatments offered - TTT demonstrated the highest nor adrenaline levels recorded in that testing centre - shucks :angry: )

I have suddenly crashed SUPER bad - my vision is all weird again all the time, Im tired, dreadfully dizzy, foggy headed and trembly -

its just so frustrating that just whenn you start to think this is behind you it whams you in the head again!

My eye lids are starting to dropp like they did when i was really bad again - im starting to worry that this is gonna put me back where i started.

Ive had some bad relapses but most last two to four day and im fine - its now ten days since this started (two days after returning from overseas so you can understand why i think its something environmental that triggers it here! My last crash was the year before a day after returning from a three week holiday in NEw zealand where i felt almost recovered).

My only hope is licorice tea which will result in its usual 5 day period of migraines - but it will get rid of this terrible brain fog - brain constricted feeling.

My doc says that this can be caused by reduced blood flow - but that they recently found that the arteries in the brain are constricting - like the body is trying to reduce blood flow to the brain for some reason.

Im so over POTS...

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My eye lids are starting to dropp like they did when i was really bad again - im starting to worry that this is gonna put me back where i started.

Im so over POTS...

Have you been tested for MG (Myasthenia Gravis)? Drooping eyelids can be a symptom of this condition, and I know some people with POTS also have MG. Just checking...

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So soryy you've had a relapse. That's the trouble with chronic illnesses, just when you think they're gone..... I hope you get over this bad spell quickly. I believe I'd think about moving too. But for most of us, it's not really an option. Take care of yourself, and hang inthere....morgan

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Interesting to read of your drooping eyelids..I thought I was unique in that as I never saw it mentioned except in MG . Mine droop only on bad days... about 2 a week..or later on in the day. I did have a normal EMG which I understand would rule out MG.Are there others out there who experience the same thing and do not have MG?

Margaret.

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thanks for the kind words. I was tested for M Gravis a while back among other things and thankfully I was negative.

I have a job here in Melbourne so ill have to stay for a while unfortunately - gives me time to work out what might be triggering it here though I guess.

Then i might get a transfer somewhere else.

As for now - Im just resting.

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hope you get to feeling better again soon. i never got to a point of feeling as good as you were for awhile but had a period of doing much better before my major crash/downward turn this past year so i know how frustrating it can be. hopefully it will be short-lived for you.

hang in there,

:) melissa

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