hippychic258

Just wondering if anyone just spontaneously got better?

No not since January went from standing 10 hour days at a job that I loved so much to now I can't stand 30 seconds, so driving is out for me

I am so sorry that is horrible and very unfair in fact this whole illness is unfair for everyone it take so much of your life away!!! I also love the beach and I went there once at the end of my worst flare and I felt so good then the next time I went I was so sick and spent the whole time in the room. I know how you feel and I am so sorry!!!

I hope you feel better and can enjoy even an hour.

Hugs to you

Pam

Its $4000 for 2 weeks and another $1000 for an extra week if you need it insurance may cover it but they only except insurance for locale patients. They still charged me $1000 even though I couldn't do the treatments.

I see people talking about pulse pressure can you fill me in on what it is and what it means.

Thanks

I Went there last month and couldn't do the treatment I was to sick from the car ride and ended up sicker when I got home than when I left. Its not set up for people sick as I am, I can't sit . You have to look at a computer screen the whole time and my eyes are very sensitive to that so it made me sick and I couldn't do it. But Dr K is very nice and I think she is more of a biofeedback expert not so much a pots expert. I think if your man symptom is tachycardia and you dont have much neuro symptoms it can sure help. It is a lot of relaxation techniques and breathing. DOn't let the name confuse you its not a big treatment center its a regular Doctors office on the 10th floor of a building. I know it has helped some but def not a cure by any means. Even if i started feeling better enough to go and do it I wouldn't unless my insurance covered it.

This is just my opinion and I didn't get to do any of it except 2 treatments.

I am sorry everyone is having such a hard time!!!!!!What symptoms is your daughter having that is keeping her bedridden and does she get up at all?

Thanks

Can you read old posts on someones profile I am only seeing a few of the posts is there anyway to go back to older on someones profile?

I was just thinking today of posting this same question.

Thanks everyone for you great advice and comments. I have been tested and looked at for Chiari I have been to Cleveland clinic twice for a couple days for testing they just told me water salt and exercise, that was 3 months ago. I did a phone consult with another Dr in New York who suggested florinef and a beta but not sure how comfortable I am with that seeing how she has never seen me or tested me for anything plus not to keen on meds. I am not sure what all Cleve clinic tested for but have been researching the Adrenal gland idea. I have been sitting up for short periods i take a step or two a few times a day I just have to take it slow i guess and hope I get to feeling better. I just keep reading healthy people who are bedridden suffer some form of orthostatic intolerance so I can imagine the symptoms I am going to have if I try to get up and walk to much. Right now I an having bad nausea and terrible light and noise sensitivity, hoping that goes away sometime.

After being bedridden does sitting help build orthostatic tolerance? And just taking a few steps help build so you will be able to more as time goes on or do you think you have ruined your ability to walk again after staying down so long? I know a lot of people spend a lot of time in bed due to Pots but am I the only one who never walked at all while bedridden? My symptoms were so bad I seriously thought I was going to die if I walked, so I didn't.....Huge mistake I am sure.

mornings bad

night bad but better

When I went to Texas for the biofeedback treatments (that I couldn't do) something very interesting Dr. K said to me.... She said that if you fix the autonomic nervous system by leveling out the sympathetic and parasympathetic nervous system ( which is what biofeedback is supose to do) then it doesn't matter if you are decondtioned or not. I think every doctor has there own opinion. My last flare I had I was deconditioned but got better anyways now this flare is a totally different story. Deconditioned people are able to get up and get along just fine of course they don't have pots I know.

What is everyones experience with anti depressants which ones work and any side effects?

Thanks

I keep having thee episodes where I get really nauseated and then my bp goes up 20 and so does HR Is this adenaline? Usually happens when I look at my computer screen or phone or use my eyes to much.

Is it hard?

I always wondered when I was able to exercise why i got sick hours after doing so, it doesn't make sense so if anyone knows that would be great! Like I have a delayed reaction.

Where can you find his exercise program?

Does pots only go away in younger people?

What happens when people with MCAS take beta blockers?

Well then I have a long way to go you can imagine how my legs look after being in bed for almost 6 months

I have heard over and over how important it is not to loose muscle tone, so my question is has anyone gotten better even though they lost muscle tone? Do you have to get your muscle tone back first in order to get better?

I have always thought it was hormones also.

I have always thought it was hormones also.

Oh yes I had extreme tingling all over my body for about 4 months it was so bad I didn't get out of bed I had no idea what it was it scared me. It started on my face and progressed from there. I don't know why or what caused it or wy it went away. Every once in awhile I will get it for a bit not not to bad.