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No Mor Pots?


jkapache
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Hello!

I was diagnosed with POTS OCT 05 (tilt table, and several other autonomic tests) I then began treatment- gabapentin, was on flornif, midodrine and mestotin, all of witch I am now off of. The ONLY thing i take is basic vitamins, calcium, and melatonin to help me sleep at night. In april 08 I went to a new dr (I moved) and he sent me for another tilt table- that revealed I dont have POTS anymore.... or the bp stuff like i used too. I do still have alot of the symptoms I have always had (extreme fatigue, muscle aches and weakness, occasional headaches, and lightheadedness ect..... typical POTS stuff!

I am doing SOO much better than I was 3 years ago, I ride 2 horses everyday, I go walk 20 mins a day, go to the gym 40 mins daily, and live a prety 'normal' life, I do still take naps alot, and have to be really careful not to overdo it- I certainly am not living the life I used too... but am doing so much better than I was, and great for a POTS patient!!

Am just wondering, I know most of you have NOT improved over time, but for those that you have, if this is sorta 'normal' to slowly lose some of the symptoms and start to feel a bit better.....my old dr told me that MAYBE I would get better over the years if i changed my life - in 5-7 years.... well we are only at 3- but there is some improvement...... any thoughts?!!??

Take care!

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Hi Jesse,

I was wondering how old you were when you developed POTS, because my understanding is that the younger you are, the better your prognosis for recovery. I guess that assumes that your POTS isn't caused by some other chronic disorder. My 16 year old son developed POTS 10 months ago. The first 6 months were horrible, but for the past 4 months he has been slowly getting better. He is about 50% of the way back to normal; it's not great, but it's a lot better than it was last winter!!! I'm happy to hear that you think you're improving, and you have my best wishes for even more progress.

-Lenna

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Oops! Totally forgot ( brain fog... a symptom still ...) to mention it was exactly 2 weeks after my 18th bday that I got sick, I am now 21. We do not know the cause of the POTS, tho, I do think I have had it longer than i thought.... but all of a suddent my body was like, 'ok, im done, figure something out, cause i cant work like this!' It took 4 months to dx, but as soon as I got the autonomic tests done, we started treatment Oct '05. Thanks for the reply! And that is great to hear that your son is doing so much better! for me, as soon as we started treating the POTS, things got a BIT better- but it takes time! Best of Luck!

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  • 4 months later...

When I first got ill after a viral illness my cardiologist said it may get better in 1-2 years, then it was 2-3 years, now he still says I have a chance of it getting better. I think that there is so little known about all the different varieties of POTS that it is impossible to predict exactly who or when we will get better. However if your symptoms are improving and your tilt test results are more normal than before I would take that as positive encouragement that whatever you are doing to help yourself get better is working. Keep it up and hopefully things will get even better for you. Don't be dismayed if you do have flares of symptoms, lots of us have episodes where things get messed up but that doesn't mean that anything is permanent.

Flop

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