minimay

Hi, Yeahb thats what I was told for years before I got a real diagnosis. Try A neurologist , they know lots about diseases.Good luck I hope she feels better.

that is all I know for now...I won't know anything till he tells me. Also I only know what he told me..he says that some people with POTS have a certain antigen in the body. and it can have some kind of a treatment..i'm hoping it is good....he said it is new. antigens attack the cells i guess. I read about them but they are complicated....something about the immune system does not understand the antigens so it sends atibodies to fight them. there are different antigens...MS has them. please don't think it's a cure..all I know is what he told me. He said it was some updated info.

HEY ALL..I WENT TO SEE MY DOC FRIDAY I ASKED HIM IF THERE WERE ANY NEW TREATMENTS AVAILABLE FOR POTS.. HE SAID THAT THERE WAS A TESTS POTS PATIENTS COULD TAKE THAT CHECKED FOR A CERTAIN ANTIGEN IN SOME PEOPLE WITH POTS. IF THE ANTIGEN SHOWS UP IN THE BLOOD TESTS THERE IS A TREATMENT THAT COULD HELP YOU. MY BLOOD WAS SENT TO THE MAYO CLINIC. AND I WILL KNOW SOON. I HAVE TO TAKE ANOTHER TTT. MY LAST ONE WAS 6 YEARS AGO. ANYWAY I DONT KNOW IF ANY OF YOU HEARD ABOUT THIS . I HAVE BEEN SAYING PRAYERS FOR ALL OF US.

Hey I went to see dr. alshekhlee friday the 22nd . He does know about POTS. He is ok...so rest assure he does know how to treat you.

I always wanted to know what is the longest someone has had POTS?

Hey does anyone know what all of our future is..I mean has anyone asked or been told by a good doc what our future is...Do people with POTS live long lives??

Hi I am to having a flare up after about 4 1/2 years. It started about two and a half weeks ago..It started with the high bp and heart rate....So I went to the emergency room. I was put on lopressure..it helped keep them both under control...But it made me feel depressed... I then got done with prescription... I am going back to my POTS doc. A few days after the flare up began I was ok for a few days..then back to CRAP AGAIN..tODAY i WAS feeling better.Who knows what tomorrow will bring. I get flushed and hot feeling within..and weak like jelly legs.... I hate it..when I do anything I get a high heart rate..but I guess flare ups are normal..... I pray at night it will go away....

I laughed so hard I actually started to cry.... It's funny ...but I'm not laughing when my heart rate is so high I can't function....My husband looked at me like I was nuts.....Only a POTS person can understand. Good day to all! So sorry what happened to Steve Irwin....God Bless His Family!!!

Hey guys...sorry my post didn't turn out right. What I wanted to know is does anyone else have any of these following problems. I'm feeling like crap again....are these symptoms familiar to anyone else?? Numbness in cheek or side of head (mild)? High heart rate only sometimes. Weakness. or feeling bad even if the vitals are showing normal. Sometimes I get scared, Aren't these the symptoms of heart disease?? I have been checked for heart disease and all three times I was normal. But it still scares me to death when the heart rate is so fast at times. THANKS

Hey I'm back to feeling like crap again....does anyone else get the following? Heart rate going nuts for no reason? Flushed face? Numbness on one side of cheek or head? Feeling weak? I guess i'm just scared about the heart thing? Isn't this all sign of heart disease? I have been checked a few times over the years for heart defects, but they all come out ok. Do you guys worry about that to?

I have an appointment with dr. Alshakee in september. My usual POTS doctor is Dr. Grossman. But he is very ill And I won't be able to see him until January!! So he advised I see this doc till I see him. I did have a pretty bad flare up a few weeks ago. After 4 years of feeling better. But I'm now feeling better again. Still a little tired after the flare up...But I'm still gonna see the doc...Them appointments are hard to get ..

Hey, does anyone else out there feel weak and yucky.. but still have a normal heart rate and blood pressure? Any way I am feeling better than I was two weeks ago. I will be seeing a doc seotember 22nd, wonder what he'll give me , I know there are nrew meds out there since I last went to my nuero. I do see someone who specializes in POTS. God Bless

I don't really understand.... I know that there can be many different root causes to POTS. But I always thought that doctors didn't quite yet know what they were. I read that they weren't sure what actually causes POTs..just had a rough guess at some things they think could be the root causes. As for the TTT I wouldn't do another one either.... You already know you have POTS. I just started this group Dizzy...but what exactly is your typical day like.?..can U do anything during the day? I think there are many different causes for POTS and each one of us has different symptoms...and we just have to take each symptom and deal with it according to our illness......

well i was starting at the small panic attacks early in the morning....I knew something was wrong..I only get them once or twice every 6 mos. this went on 4 a week...then the hospital visit for the heart and blood p up. Then weakness.shakiness....then tired but not being able to sleep.Today I did start feeling somewhat better.. I made myself get up and move a little around. I'd start off in my pool just floating around..then in the shower to feel better getting clean... Id take one ativan then just relax....I felt that if I'd do some small thing I'd get a little better feeling. Although it may be a small set back I'm still keeping my appointment with my doc.

Hey about two weeks ago I started to come out of a four year remission.... now I'm tired having the small attacks you know.. panic! My doc is very sick right now himself. He deals in POTS...although he can't see me he sent me, to one of his colleagues who deal in POTS to. I go Sept 22nd . Can anyone please tell me how and what they go through when they have their symptons from a set back. any tips on what to do to feel better/ Thanks

Hey that's real cool. Ya know the best part is you know how it is to be sick..so your gonna be an awesome nurse!! Congrats!!

Hey all! I am not new to reading the site, just new to joining.I definately am not new to POTS! I have had it since 1990. I was finally diagnosed in 2000. For the first 20 years of my life I was very healthy. But in 1990 it was all to sudden. I did have thyroid disease though, But even when my levels would Show up normal for years after being treated ,but I always still felt just plain not right.Mostly symptoms of getting out of breathe when climbing stairs or doing such little things. It would go off and on through the years But finally in 2000 the very minute the new year ball dropped on tv...I felt so weird..Not like anything I felt before.The through the week I started getting numbness on my left side of my head and just couldn't do anything anymore. Then I started to feel somewhat better. But I still knew I had to get to the docs and figure this crap out. I went to a great doc, who tried everything but she just couldn't figure it out. She sent me to an Endo. and I got the tilt table test. I was finally diagnosed!!!! I thought ok i'm gonna get better with some pills , Right?? wrong...we all know there isn't a magic pill. I tried florinef, but no results...I was couch ridden.. but I could still do things just had a major limit. He also said seeing a therapist would be benificial because of the anxiety I had went through all these years. Well I take Paxil 20 mg. And 1 ativan a day as needed. I feel much better now. My life gotton back to being somewhat normal. after years Although I have been on a bad flare up this past week...I am just tired and feel more anxious and that. Sorry I wrote so much.....I guess my question is..Does anyone else have the flare ups now and then? Thanks