questions for NIH

[katsusu]

I am trying to make a list with the top 10 questions people have about POTS? Do you have an input??

Katsusu

[goldicedance]

Kathleen...Thanks for the opportunity to provide input. Here is my question: Why do so many of us put out so much urine when we go to bed at night?

If I can ask suggest another question: Perhaps the experts at NIH might be interested in these questions and could publish an article with their answers. Maybe you could suggest that? If they don't want to formally publish such an article, perhaps one of the research assistants might be willing to provide writtin responses that they could shared with DINET. Just some thoughts...

[Roselover]

Thanks for looking for these top questions... that's a great idea. I think my top question deals with the brain fog - mental losses I have. Some days they are worse, but even on good days, I know I don't function as intelligently and logically as I used to. My question... is this a permanent loss? Or will I regain my old self when I get symptoms under control. And what is really causing this? Is it just reduced blood flow to the brain? Is there anything that would help me not lose more?

Thank you so much. I am so sorry that you are in a place that they need to see you so often, but glad for you that you can have somewhere to go.

~Roselover

[corina]

Kathleen,

would you ask about cognitive skills? Like Roselover, I would like to now more about it. Lately I'm getting worse and worse. While I somehow recognized the surroundings I didn't know where we were when my husband and I wnet shopping; there are times I can't make coffee, because I don't know what to do with the buttons; I forget so many things that I even forgot wht I forgot (this sounds funny, but is a nightmare for me). And lately a friend asked me if I would like to visit her (I have visited her before, she lives nearby) and I asked her: do I know where you live? The way she looked at me, I knew I should have known and after about 4 or 5 minutes I suddenly remembered. Thank you so much for giving us the opportunity to ask questions. I'm really interested (as in: I'm really scared), but my neuro doesn't know if this is POTS related.

Best wishes Kathleen, I hope everything goes well at NIH!!!

Corina

[biatecki]

thanks for the opportunity..you describe my chest pain exactlyand I would love a good explination..here are some of the theories given:-

thoracic hypovolaemia

your heart is overly sensitive

due to the hyperadrenergic drive

your brain is misreading the messages

take your pick!

Best wishesfor your stay at NIH.

Margaret

[pamela]

the urine output at night is a good question, ihave spells where for days I go 4 or more times at night. But the brain fog is pretty important to. Mine is getting worse my typing skills have went to the can, I misspell writing and even have rouble spelling out loud. I was always the spelling bee champ and have been pretty good at it as an adult. I forget my meds, where I put things, where I am going...

Another good question is if we are all so tired why can't we rest and sleep? My theory is staying awake is my body's way of fighting the dangerous BP drops.

I have heard that inadequate rest can lead to loss of motor skills, balance, memory loss etc.. and my experience in the military has made me a believer.

My symptoms are worse now than before I was diagnosed in May, the summer was rough but the last 3 weeks have really been bad.

Good luck in your endeavor and I hope all goes well

pam