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Potential New Treatment On Horizon


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Rissy,

Please let us know what you find out. I can't lie down flat - at all - it makes me have horrible symptoms. I have to sleep on three pillows to keep my head up. It's not real comfortable that way - but, the pressure in my head with lying flat is awful.

Issie

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Same here!! I sleep on 3 pillows :P. I started just because they said elevating the head of the bed could be helpful in POTS, but then continued due to reflux. Now whenever I try to lay flat I am very uncomfortable with the head pressure that you just mentioned!

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3 pillows for me too!! I can't stand the pressure of lying flat, but I also have an exaggerated forward neck curve, so laying flat is very uncomfortable in my neck/shoulder area. Wow, the more we talk about all this, the more odd stuff comes up and definitely gives alot more food for thought.

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  • 4 weeks later...

http://prettyill.com..._02_02_2012.pdf

Currently being tested for POTS and OI.

Rama, What happened to the post you wanted, and was it on Diamox also?

I found Diamox via Driscoll theory, via Claire's Virginia site via google, and am wondering what else there is on it. Wondering about Naomi's question too before trying to get doc to try it. Sounds interesting. Need to see if they rule out Pheo too.

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I do have valve issues because the nurses have a heck of a time trying to get me a line in certain places on my arm.

The other point about cranial pressure I brought up as my 1st theory back when I 1st joined the forum. I still think some baroreflexes/chemo receptors are acting abnormal, but it's not like they coing up with treatments for that anytime soon so I dropped it.

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