Newly diagnosed.

[bblovesdd]

I just spent 8 days in the hosputal while they tried to figue out what was wrong with me and I have been diagnosed with POTS. I had never heard of this before and I am trying to see if my syptoms are the same as all of yours so I can know if i have been correctly diagnosed.

Here we go. My heart rate will go waaaay up for just a second and then go back down. they got it on the monitor at the hospital going from about 60 to 168 wjen i picked up a fork. Instantly I was sweating. felt terribl for that quick second and then I was ok. Naturally they came flying in because they saw it go up like that and stuck the oxygen in my nose. I think they think that i have shortness f breath with this but I don't. Also in the hospital I was opening a jar and it went from 70 to 134.

I went from doing 2 or 3 hours of excercise a night to not being able to last 2 minutes on the treadmill for a stress test without having my heart do a little dance three times in a row and having to change my gown because it got so sweaty.

Other things that have been happening to me are I will get a palpitation and the my eyes go black. i have never passed out, but i guess when your eyes go black that way that is where you are headed. If i don't go black I get that feeling you get when you stand up too fast. Kind of like seeing stars.

Please someone let me know if i have been properly diagnosed.

I just don't understand. This came out of nowhere. I have had the palpitations for years, but never the symptoms that go with them that i am having now.

Any feed back would be GREATLY appreciated!!!

[Ernie]

Hi

Welcome to the board.

Have you had a TTT?

What test did they do to diagnose you with POTS?

Ernie

[bblovesdd]

Hi

Welcome to the board.

Have you had a TTT?

What test did they do to diagnose you with POTS?

Ernie

<{POST_SNAPBACK}>

thanks, yes they did a TTT to diagnose me.

[bblovesdd]

Thanks, yes they did a TTT to diagnose me.

[Ernie]

Hi,

It sure looks like you have been diagnosed properly.

Your symptoms are like ours.

There is a section on the main page where they list all our symptoms. Maybe you could have a look at it.

Please feel free to ask more questions as your learn about your disorder.

Ernie

[bblovesdd]

How did I get this??? Did I cause it by trying to stay fit??? from what my Dr. said it is found mostly in tall thin women. Is that so???

let me fill you in bit about myself. I am 32 years old. About three years ago i decided that i wanted to take off a few. I had been exercising for years, but stayed about the same weight. Like I said, about 3 yeras ago I really wanted to take off some weight. i was able to do that by exercising more. Much more!!! I succeeded in my goal and now I stay fit by still exercising a lot, eating healthy durning the week, and then treating my self to some junkies on the weekend. I just can't help but wonder if I caused this by trying to be too fit. I am VERY strict on mself during the week as far as eating goes and I rarly miss a day of execising.

I realy appreciate your feed back.

[Ernie]

Hi,

The most usual causes of POTS are: genetic, viral or post pregnancy. I have never heard of someone getting it because they tried to loose weight or exercised. It might have triggered a crash but the problem was latent.

Is there other people in your family who have similar problems?

Did you have a virus of some sort some time before?

Ernie

[bblovesdd]

No one that i know in th family has this. No virus or anything like that either.

I looked at the syptoms and something struck me funny. Since March i have been seeing a chiropractor for neck and shoulder pain. That is one of the symtoms listed.

Will this get better ever??? is there something that i can do to feel myslef again. Dr. has me on Midoine, but I think that is what startd me feeling dzzy. It was helping with the palpitations, but they were back today even on the med.

[bblovesdd]

Sorry, i meant Midodrine.

[Gena]

HI,

Welcome to the board. If you were given a TTT then your were most likely properly dx'd if they've ruled out other possible causes. You may want to check out the pinned topic at the top of the general discussion board that is "Answers to Commonly asked Questions." and read everything you can at potsplace.org.

Many people on the board, like myself, were very fit and athletic and exercised regularly prior to getting POTS. I cannot pinpoint any cause to my POTS. Although I do have an autoimmune disorder called celiac disease (gluten intolerance) and some research speculates that POTs might be a type of autoimmune disorder or triggered by one at least. Some of us are still able to exercise and stay conditioned in spite of this illness. We have learned to adjust and not push ourselves too hard. On the other hand, there are many others who do not fit this profile. Perhaps they got POTS after a pregnancy or virus, or as in Ernie's case and others, it's definitely genetic. There are many unanswered questions.

Were you also dx'd with MVP (mitral valve prolapse)? I have that and my doc at the MVP/dysautonomia center said MVP is common in tall, thin women, usually fair skinned. I'm not very tall (5'5'), but she said I could be a poster child for MVP. Oh boy, just what I always dreamed of...not!

Well, I think you'll find everyone here to be an amazing source of support and information. I don't know what I'd do without this forum. It's a real blessing!

Best wishes,

Gena

P.S. If you research previous posts, you can find suggestions on how to gently get back into exercising and increase your fitness by doing simple floor exercises and gradually building up.

[bblovesdd]

Gena,

thanks soooo much for all of your feed back. yes. I was diagnosed with MVP when i was about 16. it has never been an issu for me though. I get palipitations here and there and that is about it. As a matter of fact when i started to exercise that went almost completly away!!! It was about a month ago when i started to mention o my husband that my heart was acting up. Did not realize it, but he said that i had mentioned that to him everyday that week. I just thought what was doing on was just the MVP. When i started to have the blackouts I realized that it was something else. i though maybe a vitamin thing or something like that. When i forgot how to move my legs at ork one day it scared me enought to go to the hospital. After two trips to the ER I was finally admitted. i then spent 8 days thee until they firgured it out. I had every test that you can imagine. i am sure that you are familiar with all of this.

EKG, EEG, CAT scan, MRI, MRA, stress test, and a bunh more I can't even remember what they were called.

Well, i am glad to have an answer and to realize that I am not crazy here!!! The Dr. had me on Midorine. I really don' think that i was tolerating it though. i was only on it fr a week and maybe I should have given it a bit more time, but I just could no stand being soooo dizzy from it. I felt horrible on it. i am going to try just giving myself much more time for sleeping and drinking a ton of water and hopefully I will be able to work though this. i know that if the symtoms get worse i will have to be on the med, but until them I am thinking that I want to try it this way. Your thughts???

Thanks,

Diane

[Merrill]

I'm thinking you should add a ton of salt to that ton of water ... and wear compression hose!

All the best to you,

m

(PS the only med I'm on is beta blocker and ambien for sleep--but I also do those other things, and if I stay off the elevator, they help. )

[Miriam Poorman-Knox]

Hi,

This has been shown to affect many olympians, and people who exercise alot.

I think that we exercised brcause it made us feel better. But we all crash the same. For 10 years I was the fitness director at a health club in Wisconsin and taught 4 classes a day and did the stair master for 45 plus demonstrating the machines. Was great until the great fall of 97.!!!!!!! Give it time, unfortunately we must. And ask questions. Miriam

[bblovesdd]

I'm thinking you should add a ton of salt to that ton of water ... and wear compression hose!

All the best to you,

m

(PS the only med I'm on is beta blocker and ambien for sleep--but I also do those other things, and if I stay off the elevator, they help.  )

<{POST_SNAPBACK}>

What do you to to add the salt??? Do you take a salt pill??? Add it to your food??? Does this help with all of the symtoms??? i had a rough day today and i am really down about it. I need some tips to get me back enjoying the things that i love.

Thanks!!!

[bblovesdd]

Hi,

  This has been shown to affect many olympians, and people who exercise alot.

I think that we exercised brcause it made us feel better.  But we all crash the same.  For 10 years I was the fitness director at a health club in Wisconsin and taught 4 classes a day and did the stair master for 45 plus demonstrating the machines.  Was great until the great fall of 97.!!!!!!!  Give it time, unfortunately we must.  And ask questions.  Miriam  

<{POST_SNAPBACK}>

Miriam,

i would love some feedback from you!!! Fitness is my life. I jus can't imagine being witout it or even slowing it down. I LOVE what I do. It is not a chore anymore. It is what i love!!!

Have you been able to get back to it??? What tips do you have for me.

Share with me some of your symptoms and what you do to help them.

I was on Midodrine for only a week and just could not stand how dizzy it made me. I took myself off of it and am hoping to get through thi without the med. Is that possible. Should I have given the med longer than a week??? Would the dizzines have gone away???

Please fill me in. i have been really down about this all day.

Thanks,

Diane

[Miriam Poorman-Knox]

Diane,

I will happily reply and answe your questons. Tonight I'm fries, new medication reaction. Will tomorrow morning. The one thing I can say is to keep up with exercises on the floor, bed, etc. Keeping your lower body toned is very important. Cross Training is best Cardio, strength train, cardio etc. Finis stretching on the floor about 10 min. you are more likely to have problems with BP dropping after exercising. I think I would have tried the med longer, but thats me. I took midrodine and salt tablet(you can ask your pharmacy to order some)together and it worked.Also there is info on the site about salt. Sea salt is best. I have some that are little chunks and **** on salt. Sounds wierd, but you know you need it when you eat more. Will write more. You may e-mail me also Just go to my controls at the top. Miriam