hey everyone! im new here.so here is a brief history- i have been to soooo many doctors mainly in the e.r., but also including a cardioligist and a neuroligist for the past 3 years when my heart rate would suddenly get very high especially when i stood up, and either they would just plainly tell me they didnt know what was wrong with me or they would chalk it up to anxiety. i know that i have a lot of anxiety, but it is caused by the way iam feeling, not vice versa. so i decided to look my symptoms up on the internet and i got P O T S or also IST. So at first i was just relieved to know what it was and not feel like it was all in my head. some places said its not life threatining but then i read somewhere else that some people either get better or they die.i know this sounds very morbid, but it scares me and i cant get it off my mind. anyone else know anything about the risks of having p.o.t.s. or IST? PLEASE HELP! by the way iam 22 years old and i, like everyone else, have a variety of other symptoms along with the rapid heart rate, but right now that is my main prioritie.also it sucks because i used to be a very active person, i loved to run with my dog and now i feel like i have failed him...

I have been diagnosed with POTS and IST and other atrial arrythmias and I can certainly relate to your fears. The symptoms are very scary and can be so debilitating at times that it is hard to believe you are NOT going to die. There are forms of dysautonomia that can progress but they are very rare.
I have gotten better at not letting the panic take over when I have an episode but I still hate it and get concerned. I have always been told by my EP cardiologist that POTS and IST won't kill me (might make me pass out but it won't kill me). In time, I came to realize this. I am learning when to be really concerned and if I need a little extra help (like if my heartrate won't go back down on its own or I have trouble coming out of a faint, I may need IV fluids) and when it is a "typical" episode. The panic that comes with an episode makes the episode much worse so I try to minimize that as much as possible. Like Rosie said, try to find a Dr. who specializes in dys. Having the right "official" diagnosis can really help to alleviate the panic.

Mostly People do live with certain types of Dysuatonomia, some become very disabled, while some are able to work. There are a couple of types of dysautonomia that can be life threatening. Do you live near Alabama, it would be good if you could find a cardiologist to diagnose you and help you.

thanks trebleclef. that is exacly what iam trying to learn to do. the panic, i think, is almost about the worst part of it all. also iam going to start looking for a doc soon.also-excellent quote! to baxter- do u know which ones can be life threatening(sorry i suck at spelling)? also no i do not live in delaware, but pretty close, i live in maryland.

oops sorry, i meant alabama. i dont live anywhere close to alabama. hmmm sounds like its hot there. but anyways thanks to all u guys for your posts!

Hey there I had to write you because I definitely understand how you feel. We're almost the same age (I'm 21) and it sucks to out of no where feel like you're 4 times your age. I have two dogs and I struggle with getting up to take them outside, much less run with them! Sometimes I feel like I'm letting them down too, but honestly if it wasn't for them sometimes I wouldn't get up, but I do because it's not fair to them. Don't feel too bad because our pups still love us unconditionally. I used to be an athlete too and it's the most confusing thing for us to go from picture perfect health to feeble young person. Feeble and young shouldn't even be in the same sentence. Lol. I just want you to know that we all completely understand and you're not crazy, nor alone. Just learn as much as you can and take the time to pay attention to your body and learn your own personal limitations.

thanks jazz. it means a lot to hear someone else knows what its like. i feel like iam stuck in the wrong body. i want to do so many things, and i cant. im just now learning that. i guess i do need to learn my limitations. which sucks because i was always the type to refuse to believe i had any (physically ofcorse) or i would just push past them. every day is a new learning expierence i guess and i need to let go of my pride and just be.

Yes I definitely know about trying to "push past" this. I thought that maybe I'm just being lazy, or possible I was just out of shape even though I was an athlete for years. I thought maybe I'm not eating well enough. And then I thought that if I ignore it I won't have any side effects. You know mind over matter....haha riiiiight. I would work hard at my jobs and slowly my body started to slow down on me. I feel like a person twice my size. It's hard for people to see my small frame and understand that I really am just tired. *sigh*


I think one of the worst things is that symptoms come out of nowhere. We can be fine and then a "wave" of weight, dizziness or pain can just knock us down. I want you to know that you're one of us but you are also your own person so what some "Dys" people go through you won't and symptoms that you have some of us won't. The worst thing is to think well Jazz said she walks two miles a day (riiight) so I'm sure I can too. (That was just an example I certainly do not, lol) Test the waters for yourself and know what you can and probably shouldn't do. Also know that every day can be different and every hour too. So if you're up to doing something at that moment do it.

That's the good thing about this disorder, it teaches you to live for the moment and truly enjoy the small things like a long walk with the dog