E pots

I was on fludrocortisone and then I went into the last appointment and my blood pressure was really high 150 over 110 I was on a player he wanted me to go off of the fludrocortisone then they put me a few weeks later on propranolol. The drawing was so bad I was just laying in bed for weeks on my chest hurts so bad and my heart was irregular and Rapid laying down I couldn't get any relief sitting or laying down no 8 weeks in I am extremely anxious and jittery I just want to get up and move but it makes me worse I'm drinking like crazy all I do is drink and pee. Before the square I was feeling good no I just wish I could sleep in and not have to drink constantly. Will it go back to normal or am I going to stay like this

Any tips? I have an evaluation tomorrow. I'm feeling awful. In 8 wk flare here. Scared

Did you come out of flare? How bad was it

Having trouble eating but drinking fluid helps with other symptoms. Losing weight. Sick...so tired

Got them on both thumbs in bad long flare ...now deep on lft thumb in bad flare. Also bloodwort showed high hematocrit

Did you find ssris or snris better?

Will look at effector.

I have heard SNRI's can make H pots worse. Any other suggestion? Thank you

Both times I stopped Prozac I had no problems

So I took Prozac for a few months. Hair came out but growing back. Started back on Prozac a yr later just to see if it helped snd shortly after noticed hair coming out again. Stopped Prozac and it stopped. The 2nd time trying it I was not in bad flare. I am in a horrible worst ever 2 month long so far flare. No Prozac thus time. We will see if hair comes out again. I think it helped me (the prozac) not care as much about things that cause stress. I would seriously notice not caring about things. It says that few people get hair loss but I think doctors don't take the time to report it because my doctor didn't seem to care and its extra effort for them and its not life threatening....but I liked having hair

So do you lie down and walk? I'm struggling to know what to do here. I'm soooo uncomfortable sitting. Standing. Lying down. All bad. So I walk alot but that's uncomfortable too but it distracts me but I think make me progressively more agitated nauseaus and tachy but I feel cols uncomfortable squirmy and anxious sitting lying. Standing

Any good other sleeping tablets ..except benadryl. I am afraid because its anticholinergic that it will basically do the opposite of mesinon (a Rx that is an anticholinesterase given for POTS) i took it a couple years ago and it worked but the next night was awful.

Can is resolve with decreased sodium intake?

I drink probably 6 liters but its constant drinking and peeing. I feel horrible but less horrible. I can see the BP go up n HR down w/ each drink but worried about electrolytes too. Been having twitches and spasms a lot

I drink constantly. Its the only thing that helps. I add salt and mo salt(potassium) to h2o. I'm probably drinking 6 L a day and ped and have diarhea too but after 20 min I need to drink to keep my HR in zone where I feel less shaky jittery off balance. This morning my O2 sat was 87 to 94 until I drank 1.5 L in a short bit of time. Then it went to 98 to 99.

Any ssri's out there that won't cause hair loss? Prozac / fluoxetine caused a lot of hair loss but I think it did help

At the beginning two years ago I lost 20 pounds really quickly and then another 15 over a couple months at the point I was diagnosed I had already lost 25 lb. So at that point I've only fluctuated 10 pounds on 10 pounds off in between flares in a flare now just lost another 15. My mom thinks it's great and she tells me how good I look and she tells people and her friends but I've lost weight yay being well and telling her I feel like I'm dying I've overheard her on the phone telling people that I'm faking

Do you have H Pots?

Oh. Sorry. Started 10 mg propranolol am and pm.

Started last night. Not sure i everfell asleep. I had a nightmare but felt like I was awake and was aware I was crying and was wanted to keep sleeping. So tired an drawing but can't sleep. Helping the tingling jitters. Shakes. And BP..not helping fatigue

Exactly. Good description

Yes. Have noticed hemorrhoids hurt in flare. Oww

Yes

I wonder why it causes such a quick drastic improvement then a crash

Before getting diagnosed I had taken a Medrol dose pack on the second day I felt almost normal my pulse was staying steady standing and sitting and moving. Then the next day I was back to the huge increases impulse and feeling horrible it was dramatic Improvement on the second day. Does anybody have any experience