I just got back from a long week at Mayo in MN.
Dr. Low and his group were not there this week. I worked with Dr. Frye, the nicest Cardiologist and the POTS nurse. I must have had 25 test or appointments.
So I do have some a little abnormal sweating on my feet, hands and arms and legs, probably due to the virus. My Qsart was normal and my 10 min. tilt went from 50-70 in the first minute and got to 83 at minute 10, but I had fluids. They were pretty impressed with what I am doing despite feeling crudy while doing it. I need to have more sodium, keep up the excercise and high fluids

They keep saying I will get better. I have given up on getting better. I think my heart is going to jump 30 beats and slow down like that for the rest of my life because I want it to go away so badly. They kept telling me there are people who do come out of this....I kind of dought it. Mayo is a great place, but I am still sad becuz I can't keep the heart rate from jumping around in the position change. I'm very angry at my body. Can these nerves regrow?

hi...

So are mayo as good as they say...?
How long have u had this..? because many gett better.. At least thats what I have heard.. i dont seem to be whit the lukcy ones.. my doc have told me that i most likly whil strugle whit this the rest of my life.. Maby improve a bitt during menopause (but on this forum it seems like people gett worse during that period..)

but never give up hope.. And somethimes its nice to belive docs..=)

best of luck

The human body knows a lot more about healing than all the medical knowledge in the world.

The Mayo people told me that my body needed to relearn how to be upright. I had been avoiding things that made my heart race, like walking very far, taking the stairs etc. They said to push it as far as I could without over doing it and my body would figure out what to do.

They have found that after a stroke, nerves find different paths to carry signals and heal. They have found hope for people they used to give up hope on and some are recovering use of limbs.

My heart rate still jumps more than most normal people but it doesn't effect me like it did. I may be out of breath sometimes, but so are lots of people. I no longer avoid things that make me dizzy. I just muddle through them and it has been years since I have had to sit on the floor of a store because I was so dizzy.

Love your body. Talk to it. Encourage it. It has had a hard time and it wants to heal. It wants you to feel better. You are a team.

I read a book about healing that said to stand in front of the mirror naked for 15 minutes every AM and admire your body and learn to love it. Sit if you can't stand. OK, I have never really been able to do that one, but their point was to work with your body and not against it and I do think that makes sense.

Recovery is often so gradual you may not notice it. We are used to taking an antibiotic and getting better in 3 days. This will take years.

If you want, keep a journal, just write what you were able to do and how you felt, and then in a year, go back and read it and you may notice improvements.

Don't give up hope. I know people who are back to normal.

Spinning,
I think you need to have faith. You really haven't been sick all that long. Give yourself a break and try to be patient. I KNOW it's hard. This weekend I was scared I was going to have a relapse because I am sick and viruses affect the nervous system so has made my symptoms worse than they've been in a long long time...but I am starting to feel better and know it will get better again.

Some proof that things can regrow: my QSART had NO response whatsoever - they repeated it twice to make sure they were right. I had ZERO sweating anywhere on my body for about 18 months, maybe longer. I am just now startign to sweat on my chest and back - none of my legs or arms yet but I have to believe that since the nerves are regrowing elsewhere it is just going to take a long long time....

This whole thing sucks but I truly believe that the only thing that really helps us is time. Yes, some medications, etc may help alleviate symptoms to a certain degree, but I think it's just time that truly improves us. And unfortunately we can't speed it along.

Thanks for the words of encouragement! I have had Pots since mid Jan of 08. Mayo is all that they say it is. I really recommend it.
Maybe because I just have small abnormalities on the sweat test i will recover? But it still does not help with the constant transitional tachy I get from the change of position. They kept focusing on time and Excercise at Mayo. I must have cried everyday I was there. Everything was so easy before POTS. I get so frustrated it is not getting better. My doc told me to grit my teeth and bare and try to move forward. It is easier said then done.
Sleepy- Really, they are really back to all normal? I just can't believe it.
I actually can do most of my previous life except for now my heart jumps too much in the postion change, I have more fatigue, headaches, Ibs, tingly, pain, and sleep issues and I get frustrated and down.

This message has been edited. Last edited by: spinning,

Hi Spinning, I am so glad to hear you had a good experience at Mayo. Yes, it is frustrating that you don't necessarily get to to see a POTS neurologist while you are there. But I am glad that those you saw were able to say YOU WILL GET WELL with time and exercise, and plenty of fluids and salt. Hope keeps me going. Like my doctor said, keep looking back and focus on the (slow) progress you have made. This weekend, I went to an evening potluck, my son's soccer game and a pizza party - which would have been impossible six months ago. Best wishes, MEB

spinning,

I know how you feel. I have had this since March 2005 due to virus. I was also told it would go away. But it hasn't and it is very depressing! You have to try to take one day at a time. I can't change what my body does. I take what they tell me nothing makes the heart racing go away when I stand. I am tired of the headaches or head pressure and the dizziness!! I have to try to stay strong for my kids but some days I just want to crawl in a hole and never come out

Laura,
Have you noticed any difference from when you first became ill? Or has it been the exact same since day 1?

I've had this for over a decade and I'm much better than I was the first few years. No question I still have pots and have to balance rest, exercise and activities. I am still limited in what I can do but I have a job that I love. I have overdone it at times and really paid a price for that but I try not to live in fear because sometimes you try things and they work out better than you expect. I still haven't reached that acceptance stage and I still get frustrated. But I'm so much than I was initially. I do believe that nerves regrow and there was a study from Mayo a few years ago which said that most people with pots improve significantly over time. Have hope.

I hardly know what to say. I must have (and do have)much more going on than just POTS. I have been sick for 4 yrs. and gotten gradually worse--to the point of being in hospice. Then I have gotten gradually better once diagnosed (with about 8 types of dysautonomias)and treated. I still have to use an electric w/c or walker and my body is so sensitive to physical changes.

I wish I could get better but it seems like 2 steps forward and then 2 steps backward. It's always something popping up to make my body flare up.

Sleepy, I did enjoy what you had to say.

Smiles

Mayo also told me that studies have shown that POTS patients who are able to fcus on exercise are those that recover more quickly.

Now, I TOTALLY KNOW that real exercise is next to impossible.

But I go to physical therapy twice a week and I really do feel that I am gradually stronger and my body does not relapse as much. (Maybe its my energy management also - lol).

Even if you start with 1 minute a day of exercise, then try. Then build up to 2 minutes a day....and so on.

Just my humble opinion