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How Long Have You Had Pots?


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Sometimes I get really worried that I am going to have problems with this POTS thing forever. I know there are some who have recovered, but not many. Just wondering how long everyone has had it? I've officially had it 1 1/2 years, but I think it's actually been longer than that. The doc at the mayo said that if it's caused by having Mono that it usually runs it's course between 2-5 years. That seems like forever to me!!! I really want my life back! (don't we all!!)

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I have had this since childhood, but recently got diagnosed with it this year. I recently lost a lot of weight, and now it has become life changing. I pray I can find a way to get on with my life and that I can live a full life. My biggest worry is that I am just going to get worse and worse, and i worry if all this drain this condition puts on my body will take my life sonner than should happen. Like with every episode I get months or years taken off my life span.

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my whole life but only figured that out 12 years ago..been disabled 18 years (first with Chronic mono etc)

As a kid had exaggerated motion sickness, CRIPPLING shyness (like perpetual stage fright) digestive issues. ALWAYS low energy as a kid, adult and working person.

Gotten worse with non fainting POTS in last 10 years and especailly last 5 years. Official ANS dysfunction dx after 1998 TTT.

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I was diagnosed with NCS when I was 15 and diagnosed with POTS when I was 16, though I had symptoms much earlier than that.

Many people do recover from POTS, but once they're healthy again you don't usually find them on a dysautonomia forum. They're out working, going to school, spending time with family and friends, etc. So don't be discouraged if everyone here says they've been sick for a looooong time. Those who have get better don't have the need to come here for support.

I hope you recover.

Rachel

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