hippychic258

Wow Thanks for the post about this, I am bedridden and and I can only lay on my back with my head forward, I have tried laying on my side I am fine if my body is turned sideways but as soon as I turn my head I am dizzy and sick, some days I can't turn my head without getting dizzy and I wondered what it was now I know, because my doctor sure didn't have a clue. I also get the head pressure. I hope these symptoms go away so I can get out of bed!!

I have days that I am so sensitive and today is horrible, just a soud or someone talking to loud makes me dizzy, even just looking at this computer screen its horrible, tingling etc..... what causes this on certain days and what can you take to get rid of it? Does anyone else have this at all? Thanks Pam

I notice a lot of people with Pots take Magnesium what does it help you with?

So I have been bedridden since march, I had a phone consult with a new doctor, she said I have to take a Beta Blocker and Florinef and I will feel good enough to get up and get around. So my question is I have low blood pressure 90/60 and heart rate in the 60s not sure what it is when i stand because I am not ever up but sitting it stays a out the same. I know BBs lower heart rate and BP so wouldn't that make me feel worse? The doctor told me the BB would get rid or lessen all my other symptoms such as tremours, shaking , head pressure, dizziness etc. Is this true because reading what everyone else posts about medication i feel like it doesn't work that way. She also suggested Celexa after I see how these other meds work. I feel like I just need something to calm down my nervous system. Thanks Pam

What Beta blocker do you take and does it help your neuro symptoms? Is it something you take forever? Also does Florinef help you if so what did it help with and do you take it forever? Thanks

Hello Is there anything that works to get rid of dizziness? I am so dizzy and have head and ear pressure I can't function when this happens and its not from my blood pressure, just wondering if anyone has tried anything that has worked good for them. Its not veritgo. Thanks Pam

What were your symptoms and how did you get out of bed? Were you completely bedridden?

I tried tilting the head of the bed up and my symptoms got much worse so we took it down, I lay propped up, I can't lay flat it makes my symptoms worse as does layingon either side so strange. For the alst 4 months have only been able to lay on my back......so frustrating, I really hate this.

Yes she is I am so excited for some answers, hopefully she can get me out of this bed! I had no luck with the Doctors at Cleveland Clinic I must of seen the wrong ones.

I was just wondering since my nervous system is so sensitive my sister who is a nurse said it may make it less sensitive.

That is Awesome!!! That is a long time! Were you completely bedridden I have not walked at all for 4 months. What were your symptoms that kept you down? What did it feel like to walk after all that time? Did you get sick?

I have a phone consult with Dr. Blitshteyn out of Buffalo New York. She is suppose to be an expert on Pots. Has anyone seen her or know of her?

Do people recover from being bedridden and go on to there normal life?

Hi I notice a lot of people with Pots take Ativan does it help any of the symptoms? If so which ones or is it just for the anxiety? I think I read that it lowers blood pressure so should you take it if your blood pressure is already low? Thanks Pam

Jen so sorry about your situation. I hope you have better days soon. I am sure your legs are as deconditioned as mine then. I don't know if my body can handle me getting up. My first flare up I thought i was going to die and it was nothing compared to this one at least with the first one I didn't know what was wrong so I just pushed through the symptoms and was up everyday at least a little bit. I have lost 30 lbs and i was only 130 to begin with i can't loose anymore weight. I am not sure how to deal with all this I own a hair salon and was working another job , I lost the job and I have to sell the salon my poor husband has given up his life to take care of me and my kids have to look at the mom in bed all the time. I am only 46 and I could understand all this if I was 96. There are days I feel like I am dying and there are days i wish i was dying, but there are moments when i try to pull it together and get in a positive thought. I hope there is a light at the end of the tunnel.

Thanks everyone. Does anyone else have any of these strange symptoms?

Thanks I do have a bike but my problem is when I do anything my dizziness and vibrating sensations are so bad and it makes me so sick. I really dont have much problem with tachycardia mostly because I am not up very much, I can deal with the fast heart rate it is all the other weird symptoms that are bad. I am not on any meds at all.

Also I waned to ad that I get what feels liket remors but are not visible on the outside and I can't sleep on either side. Thanks

HI I have PotsI had a flare up 2 years ago and now I have been sick since January and became bedridden in the middle of February, and by bedridden I mean I have not walked at all a couple steps here and there to see what would happen but that is all. I have noticed a lot of people who are bedridden still get up to go to the bathroom. This flare up is so much worse than my previous one and has lasted longer with more symptoms. Last week I tried walking I took 4 steps got back on bed and I felt like I flipped upside down had a sharp squeezing feeling in my head and chest then one strong heartbeat and then the tachycardia started for about 3 minutes. I am not sure what that was has anyone else ever experienced that? Now of course I am scared to try to walk again. So my question is how do you start trying to walk again? Has anyone been totally bedridden for a long time and how dd you know when you could try walking again? I feel like I am just waiting to be totally symptom free before I try again. I have never passed out and I have such weird scary symptoms I am wondering if anyone has experienced any of these: Body vibrating. weird dizziness not caused from fast heart rate or low blood pressure, floating sensations that are worse when you close your eyes, very bad eye sensitivity makes me dizzy and sick when I watch tv or get on the computer, head pressure, ear pressure, noise sensitivity, buzzing in your head, hot flashes, bad headaches, body tingling. If you have experienced any of these and know what causes them please let me know, I am not on any meds so the symptoms are not reactions to meds. What is the longest anyone has been bedridden and still able to get up and walk again? Any info is helpful. Thanks Pam