gracebytes

Merrill: If you'll also note, I said "and other things that I can't remember". There were other tests done to confirm a POTS diagnosis. Also remember, this was in 1997/1998, when POTS was even newer then it is now. No one really knew much about it. TTT's weren't the regular order. As for the TTT's being an "extremely uncomfortable test" for me personally, passing out is extremely uncomfortable. I was scheduled to have one, by the doctors at Northwestern. Once they explained what could/will happen, passing out and my heart possibly stopping (unless this is all untrue and they were mistaking, in which case I wouldn't feel comfortable with their abilities anyway), I decided it wasn't worth the possible outcome. I have a POTS diagnosis, like I said, I don't need to reaffirm that with an unnecessary test that could stop my heart. rqt9191: I'm sorry for your bad experiences with TTT's. May I ask why you needed to have more then one? I'm not sure I understand why multiple TTT's are needed. But yes, I am definitely going to find a new cardiologist soon! I was having chest pain last night, so I might be finding one sooner then I thought

Blackwolf: ARVD is stands for arrhythmogenic right ventricular dysplasia. Basically it causes arrhythmias and the heart tissue in the right ventricle is replaced with fat and scar tissue. Here is a Q&A about it ARVD Q&A. One doctor said I had it, the other said it was just fat around my heart, not IN it. Considering it is something very serious I should have gotten a third opinion soon after the second. But I plan on doing that soon. Better late then never! I live in Chicago. Unfortunately, with my brother trying to get diagnosed, our family had to go to almost every hospital in the city. We also ended up pissing a lot of people off. So cardiologists/cardio offices we haven't pissed off are in short supply. Luckily my new PCP shares an office with one and I'll probably try him out once I get copies of my records and the last holter monitor strips. A big problem with my episodes are just that, they are episodes. They last relatively short amounts of time (a few minutes to a few days). They aren't constant which I guess doctors expect. If it doesn't happen all the time then "It isn't that bad." Wow thanks! My brother had an event monitor, so when things happened he caught them. I haven't been able to get one though. Nothing shows up on the holter so "everything must be fine." I hate going into a doctors office though and telling them what to do. In the past that usually put them off and totally ignored me afterwards. I'm getting frustrated just thinking about it arrggglkjfdsks! Gena: Thanks. And yes, I've tried natural treatments. They didn't work all that much for me. Then again, maybe I should try some things again. Maybe a second time around they'll work better?

Hi all, I'm new here. I'm Grace. I have POTS (and CFS/Fibro/IBS/PCOS/possible ARVD but I had conflicted opinions.). Hooray! I was diagnosed way back in, 1998 (I think)? when I was 15/16 (I'm almost 22 now). At that time I was big into dysautonomia forums, since that was pretty much the only way I could find out information about my disorder. Since then I've drifted away and right now it feels like I'm back to square one on being educated about this disorder. A lot has changed in the last 6 years! Background: I was diagnosed by a stress test (and other things that I can't remember) at the local childrens hospital. My brother also has POTS and was diagnosed first, so when I started showing the symptoms it was pretty easy to figure out. I started Midodrine and Florinef. Those worked for a few months, but then stopped. I stopped all medication and that's pretty much it up until right now. I've gone to the doctor when I was feeling particularly bad or worried about something. Which as time went on has been passed off more and more and nothing. Right now I'm looking to probably find a new cardiologist and get back on track with treatment. For the last few years, it has pretty much been "I'm not too broke, so why mess with it more." I've learned to deal with my symptoms on my own, which has worked out mostly well. Except that one time I passed out and fell off a bus On the other hand I pretty much do nothing, since everything makes me feel awful. My brother and I do the grocery shopping for the whole family once a week and we're useless for the rest of it. I'm on SSI, and even with treatment I doubt I'd be able to get to school/work. I'm just hoping to gain a little bit back and be able to feel a little better on a general basis. So, what should I do? I'm looking for a new cardiologist (is a cardiologist the right specialty anymore?) because the one I am currently seeing is a jerk. A long while ago I was having really bad palpitations/arrhythmia type feelings. We called (my mom really) and he said to go to his office the next day, or if it bad the ER. We opted for the ER. Everything checked out fine (of course!) but I went home with a 24 holter. When I went to my cardio's office a couple days later with the results he laughed and said, "What were you running in place all day?" when I said No, I had been laying down all day, he didn't "believe me" and laughed some more. I got to see the strips from the holter and it was going all over the place at times when I knew I was laying down. When the lines (I can't remember what the office term is) go off the page (top and bottom) on 85% of the pages that's not great right? Needless to say I have little faith in his abilities. Plus he's just a jerk. What kind of treatments are out there now? I'm going to assume whichever doctor I do end up seeing will know very little to nothing. I'd like to go prepared with ideas and such. Is a tilt-table test really necessary? There is no way I'm having one done. I've already been diagnosed with POTS, I'm not going to go through an unnecessary extremely uncomfortable test to reaffirm that. With that, will it be a huge problem that I haven't had one done? I'm worried about it being brought up, then I'll refuse and be labeled uncooperative. Is there any point in doing all this? I survive well enough. I feel sick a lot, but I've been doing okay. Should I stick to my "If it's not broke, don't fix it." theory? Thanks, Grace