First Post

[TheLivingDead]

well it has been so nice to find this site. it all started in june of 09. just woke up one day and my world as i knew it was gone and has been ever since. after repeated hospital visits and a ton of bs from doctors i was diagnosed with pots in dec. 09 after a ttt.

and what is with all these docs thinking im just crazy or its in my head? as if im just imagining my world crumbling before me....... i must have watched to many movies huh.

well i found this site shortly after i was diagnosed and it took alot of fear out of my life. i would like to thank all of you who dont think its just all in my head

anyways ive had a few questions i cant find info on.

first the flu with pots....i got the flu just 4 days ago, it was a 24 hr stomach bug. oh gosh it was the worst. my question is, since the flu has been gone i feel real wierd in my head as far as being like i cant think properly and my thought process is just skewed. i have had confusion, foggyness, lack of concentration before this but now it seems i cant handle stress without seeming to go bonkers like im nuts. has anyone had this happen and does it fade as with the other spontanious issues do after awhile?

second is sex. sometimes its not so bad but other times i cant bearly participate(like most things i do) alsoit seems to give me ED(erectile dysfuntion) sometimes. im sure this has to do with the blood flow problems im expirencing throught my body but i havent found anything about it.

third has anyone had a problem with numbness in there legs and arms when sleeping. i dont mean the slight numbness and tingling that i always seem to get. but severe numbness like i cant even feel my arms or legs.

well again thanks to those on this site for putting my mind at ease. im not the only one who is seemingly helpless.

[potsgirl]

Hello~

Welcome to the forum! I'm glad you found us, but certainly wish you were feeling better. Hopefully, they'll come a day when none of us need this site anymore.

I've noticed that when I get sick with the flu or anything else, that it hits me much harder and takes much longer to recover from than it did before I was ill. That's probably why you're still feeling so yucky. As for the 'bonkers' feeling, there are several of us who take SSRI's for anxiety/depression/POTS and they seem to help some of us quite a bit. You can't help but feel a little down and helpless with this disease. I take Paxil, for instance. What meds are you on?

Sorry, I'm the wrong gender to ask about the ED and sexual issues, but there are men in the forum.

Yes, I am currently having problems with numbness/tingling in my arms and legs, but not much while I'm sleeping. I would encourage you to talk to your doctor about this, and your second issue (which of course there is medication for, if necessary). I recently had a brain scan due to my numbness, and found out I have moderate brain volume loss and lesions in my white matter - more than a normal amount. I'm still waiting to find out what's going on....

Anyway, welcome, and we look forward to your postings and getting to know you better.

Cheers,

Jana

[TheLivingDead]

thanks for the response. im not on any meds yet.

i lived in florida(us) when it started and where i was diagnosed. but i had no health insurance at either of those points so i was gettinng the minimum of help. until i was diagnosed at the tampabay heart institute.

i went into the ER there and the doc finally thought i should be admitted after the 9th time of being there in 5 months. thats when i was diagnosed with pots and was to follow up with there docs but i had no insurance.

i had to move to massachusetts(us) to get the state health care which was very easy to get compared to floridas. so now im here and waiting to recieve dr "treatment".

before i left florida they put me on florinef but it masde my throat was closing. so i stopped

[Notgivinup]

TheLivingDead, Love the name! Welcome. Your name kinda sums it up for me on some days.

I'm sorry I don't have any real answers for you, but there are so many very intelligent people on here. You will get to know more about your illness on here than anywhere else. Just read, read, read.

[TheLivingDead]

thanks and yeah the name does sum it up well for most of my days

[HoudiniCat]

I used to get the numb arms and legs while sleeping frequently when I first got sick and still do every so often. Like you say, its more than just the usual tingling sensations I get throughout the day. Feels like my arms/legs are completely numb, dead-weight and almost disconnected from my body. My POTS doc mentioned that many patients have a marked drop in BP while sleeping and that, while uncomfortable, is not gonna kill you.

[Noreen]

Hello-

Welcome. I know just what you mean about feeling unable to think or that your brain is skewered after the flu. I had the flu in Oct and still keep having the bad bad thinking issues. I just upped my water to 90 ounces a day last week and that has a big difference. It might be worth trying a bottle of Gatorade a day for a week and upping your water while making sure you are getting enough salt.

Hope something helps.

Noreen