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recently diagnosed with POTS


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I was just diagnosed with POTS on June 23. It was kind of relieving to finally have a diagnosis. I've been looking for an answer since December 26. The doctor that diagnosed me said that POTS tends to start fading away after 12 months. Do ya'll find this to be true?

Also, why is it that I feel cold all over sometimes?

My doctor says that POTS will not kill me, and I know from what I've read that it's true, but I'm still struggling with believing that. Do ya'll have problems like this too?

Thanks for you help, and I'm sure I will be around now that I've been diagnosed. I'm just looking for some positive thoughts right now.

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Let me please be the first to warmly wel come you to your new group of good friends here at POTSPLACE. As they say, it's a shame we have to meet here this way (i..e, b ecause of POTS) but nevertheless you'll hopefully become completely endeared to us as we are to you.

POTS has many symptoms, can go away, and varies sometimes on a day to day basis. You'll find that you won't be alone in your symptoms. I always am cold when others are hot..pretty good symptom in the hot summer except the heat sometimes makes us feel worse. There is a slew of medications to help relieve some of the symptoms. It is quite an exercise trying to find the right nix of meds at the right dose for you.

We are here with you in the worst of times and the best of times. Feel free to rant about how miserable you are (hopefully you're not miserable) or when you feel that people don't understand you. WE DO!!!! On the other hand, we are also here to share the good times with.

Well I gotta try to go back to sleep.

Also, forgive my typing but I am wearing an elbow splint and can't more my left arm so the typing is not goot!

:D The main thing is, don't give up! Moreover, sounds like you have found a good doctor.

Have a happy and safe 4th!

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Welcome to this great forum, glad you found all of us.

Your lucky to have a diagnosis so quickly. I have read stories of people waiting a decade for their diagnosis and that's after years of being told that it's all in their head.

I don't know what the doctors think brought your POTS on because that can make a difference in your recovery time, but I've been told the usual recovery time is 2 years. That isn't the case for everyone and they are finding now that POTS is also genetic. Some people deal with POTS the rest of their lives. Some people have mild cases and some not so. It also depends on how well you take care of yourself.

I've been cold since I can remember and that is about 2-3 years old. I remember climbing in bed with my aunt and she would always complain about how cold my feet were. I touched someone at work last week and he said owww. The person next to him said owwww? and he said yeah, touch her hands. Think how I feel, I'm the one with cold extremities. :D

steph

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Guest veryblue

My neuro told me that the other two POTS patients he had before me made a complete recovery in 6-12 months. One of the girls was so bad that every time she stood up, she blacked out, now she is a normal person once again. Both had viral onsets. Well thats all I can add for you! CBhowell, where are you from and who is your doctor?

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Recovery is a highly individualized thing... some do recover a great deal, but not all that was lost, some recover everything and are perfectly fine, and some never recover (I'm in this group).

I do have to say, that like you, I felt relieved once I had the diagnosis--it was helpful to have a name for what was happening to my body. Also, as time as pased, I've gotten better at coping emotionally with the way my body operates.

Glad that you have an answer, even if it is that you've joined our ranks. We'll be glad to help with any questions you might have.

Nina

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I know some people say they've had POTS all of their life. Well how do you know if you've had it that long? I'm 23 now and the first sign of having POTS was after I had played golf, I came home and layed down and I could feel my heart racing. My doctor says stress and anxiety could have triggered my POTS onset. Is that possible?

My neurologist is Dr. Bergmann from MUSC in Charleston, South Carolina.

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