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New & need a POTS refresher!


gracebytes
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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 :unsure: 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

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Welcome Grace,

I would suggest starting with an electrocardioligist. Some peolpe see cardios, neuros, general prat., you name it some has probably seen it.

OK, I'm not so with it, what is ARVD?

TTT's are usually the norm for dx, but you might just luck out.

Check out the docs listed on the home page, or check with NDRF, they have some others not here and vise versa. there are also some really good ideas on the other pages on this site, what works, what makes it worse, etc.

And, yes , fire the cardio you have now, I have been thru one other. Where do you live? Someone here may have a good one to try.

As to the holter test, ask to have it done in the hospital, they can see what you are, or aren't, doing. I had the same trouble, except when I went to sleep my heart rate would go to the 25-35 range and spike at 150-180 when I got up. I ended up in the ICU after they saw I was going so low at nite (a small town hosptal in South Dakota, they thought I was going to die or something).

As to treatment, it is basicly trial and error, not to be scary or anything, but most of us listen to each other and try what works. Be carefull, start low and go up on meds, for some a little goes a long way. Or some have nasty side effects.

I can really relate to the going to see someone and it was just "nothing", I wish they could spend one day in our shoes and really see what it is like.

Again, welcome

Good luck in getting the answers and help you need.

Blackwolf

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Hi Grace,

I agree with Blackwolf about seeing a cardiologist, especially one that is familiar with POTS. They may be able to find some new meds that will help you get more of your life back. It may be trial and error for a while to find the right combination of treatments, but I think it's well worth it! :unsure:

Not sure if you are also trying the natural treatments such as increased fluids, salt, compression hose, etc... but those are definitely important too.

Glad you found the forum and I hope you find a good doc!

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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! :P

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?

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Grace, A tilt table test is not always an "extremely uncomfortable test"--it wasn't the most pleasant thing I've ever done, but hey, few things are! It's not a big deal, and in fact, the medical literature all states that it's mandatory to diagnose POTS. A stress test doesn't diagnose pots. How could it? The "postural" piece is missing, and it's a test to see how your heart responds to increased physical activity (treadmill walking) and then recovers at rest... Hmmm... I agree, you need to find a new cardiologist or electrophysiologist who can treat you properly. I recommend the cardiology team at Northwestern Mem. Hospital--I saw several there and they're fantastic and knowledgable.

Best,

Merrill

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Grace,

Welcome to the board. I agree with Merrill that a tilt table test isn't necessarily a bad idea. I had such a bad reaction to the first test that they almost had to keep me in the hospital overnight. But I'm glad I did it, because it's the best documenation I have for my POTS. And my first tilt test was the worst. The others have been relatively painless.

They are always coming up with new meds and treatments, so it's probably not a bad idea to see a doctor after all of these years. As I am learning, you can always ignore the doctor (or switch to a new one) if you don't like what he or she is saying! It is a frustrating process, but you just have to hang in there and be persistent. Good luck with the doctors and keep us posted!

-Rita

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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 :lol:

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Grace,

My first TTT was presribed by my cardiologist, who doesn't know much about POTS. He prescribed a beta blocker and florinef, which helped me somewhat, but I was still feeling symptoms. My cardiologist doesn't how know to help me any further. I subsequently went to two POTS specialists (neuros) whose names I found on the web, and both of them did tilt tests of their own to see how I had progressed since the initial diagnosis. (The first one was clueless about POTS, so I had to go to the second.) I also had another tilt test at the Mayo Clinic, as it is part of their routine autonomic testing. Because I have done better on the more recent tilt tests, the doctors think that my autonomic nervous system has started to heal itself...but I'll believe that when I can manage my symptoms!

Sorry to hear you are having chest pains and hope you're able to get to the dr. soon. And if you're uncomfortable with the TTT, there is some helpful info about other means of detection on the potsplace and NDRF websites.

-Rita

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