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autumn

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Everything posted by autumn

  1. Cordelia, I have no information or advice, but I feel your frustration. I just had testing in Boston, and my TTT was drastically different from the one I had locally a few weeks beforehand, with the number a lot less dramatic. I was nervous the doctor, whom I haven't yet met, would say I'm fine when there's obviously something wrong (see my Looks Like a Duck thread). Anyway, they told me my follow-up was in May unless something was abnormal. However, they said it was likely I'd get in earlier no matter what the tests said, just more quickly if they weren't right. I guess the doctor doesn't have a consistent schedule, so patients get put on a list. When he's around and can see patients, the office starts calling to see who can come in. The May slot is just to hold our places in the system, they said. I hope you get some answers soon. They told me I wouldn't know anything for about two weeks, which will be this Friday. It's hard to be patient! -Autumn
  2. Sarah, they definitely feel different for me, too. There are things I do that I know are more likely to induce a PVC, such as leaning over, but the only thing I've done that I can consistently associate with longer v-tach/SVT episodes is go off my meds and then take a hot shower. The doctors have never caught the long episodes on a monitor -- there have been four, but I was usually on meds -- so I expect that at some point, I'll be put on a monitor and taken off the verapamil for a little while. The monitors have gotten a few seconds of the v-tach, though. Off meds, the vtach was at a rate of about 265 bpm, I think; on meds, it was 114. All this stuff is a separate matter, at least in feeling, from my inappropriate sinus tach/possible POTS.
  3. Thanks for the warm welcome. I'm a longtime lurker. Firewatcher, my doctor actually has three other patients with POTS. I just moved to a new area and needed a B12 shot, and I happened to walk into the right office. She took one look at my history and asked whether I had POTS; my history basically mirrors those of her other patients. She did say I'm the worst cardiac case, though. I have a friend with POTS -- she told me about this board, actually -- so I was familiar with it when the doctor mentioned it. It's a relief to find someone who's looking further into this. Nowwhat, they leave my v-tach alone for now, other than treatment with verapamil, because it's idiopathic and polymorphic, so it's not as dangerous, they said. They can't induce it, so they can't ablate it. My heart is structurally fine, so they said the risk of it deteriorating into v-fib is slim to none. I've had v-tach for about 10 years now. Verapamil keeps the episodes nonsustained, under 30 seconds -- except for the other day, but I guess I hadn't been on it long enough again. The SVT is annoying only when it's mixed with the v-tach, really. My boyfriend used to be a paramedic, and he couldn't count it the other day. He said it was well over 200, but other than that, he didn't know. It was the fastest he'd ever felt. And then it suddenly stopped, and I was back in the 80s. My heart issues and fatigue, which is usually caused by my heart issues, are the worst parts of whatever this is. I'd guess that if everything else has checked out, it's likely some kind of autonomic response that's triggering these arrhythmia episodes, including the inappropriate sinus tach. I didn't see the doctor when I was tested, and I'm looking forward to picking his brain. If he decides the tests were normal, though, it'll be a lot longer till I get an appointment to see him.
  4. ... then it's probably not a horse. That's what my doctor said when she diagnosed me with POTS based on my symptoms, medical history and a tilt test that was borderline to positive (they hooked me up and tilted me without giving my heart rate a chance to settle to it's baseline, so it was artificially inflated when we started, thus affecting what would've been a straight positive). So she sent me to BIDMC for a confirmation, and I'm still waiting to hear back on the results, and I'm kind of nervous. I had been sick for days, but I had a random good day then, and my tilt numbers weren't nearly what they were before; I hit 122 in the first minute and then bounced around from 87 to 114 with a starting rate of 88. It seemed weird to me that the numbers were all over the place, up and down, changing every minute, but whatever. They ran some other tests, and I don't know what those showed, but I'm terrified the doctor is going to say nothing is wrong. I know they have a copy of the first tilt, though, which had me maintaining in the 120s and shooting higher after nitro. The BIDMC tilt didn't involved drugs. The tech said there's always the option for more testing, but I don't know what that would entail. Of course, that night, I had a 30-second or so episode of ventricular tachycardia, and the next day, after a hot shower, I had a 10-minute episode of v-tach and SVT. I was off my meds for the testing, and when I'm not on them, I get those episodes after showers. I had taken them the night after the test, but I guess it wasn't enough to help in the morning. The combination of standing and heat makes for a bad situation even on normal days, so off meds, it gets a little hairy. Anyway, is there a chance that a good day, and therefore better test results, will mean the specialist is going to say I'm fine? My new doctor told me not to worry, that obviously something is wrong, and we'll keep looking for answers if that happens. I just thought I was finally making progress with regard to answers when I got the diagnosis. I've been sick since I was little and have had more tests than I can possibly count. I've been diagnosed with idiopathic ventricular tachycardia and inappropriate sinus tachycardia, and I have documented episodes of SVT. I've got IBS, GERD and untested but "likely" colonic inertia. I have visual disturbances and vertigo. I've been in physical therapy for myofascial issues, and it turns out I've got hypermobile joints, too. I've been tested for Lyme, rheumatoid arthritis and mono more times than I can count because of my symptoms; I did actually have mono once, though most of those tests came before I actually had it. There are no known causes for any of the above: my heart is structurally fine, my GI system looks fine, eye specialists haven't found an answer for the visual things, and no one knows what the deal is with the vertigo. I'm so freaking tired all the time, and I honestly thought I was losing my mind because of the brain fog. My vision has blacked out at the gym if I'm doing upright cardio, such as using an elliptical, but I can ride the bikes there with fewer problems. If I'm standing and cooking, my heart rate easily gets into the 120s, 130s. It often hangs around 110-130 when I'm standing; my resting heart rate is probably close to 80-85, which the tech at BIDMC said was high, which can complicate a POTS diagnosis, I was told. Stupid things send my heart up, and I used to think it was because I was weak or out of shape, but all my cardiologists -- and there have been many -- said I'm in great shape, not to worry, that this stuff is normal ... until my electrophysiologist put me on another heart monitor earlier this year. I had sinus tach every day, getting into the 150s, 160s, and he asked what I was doing then. When I told him nothing -- looking at the charted times for when this happens, it's usually when I was up and around getting ready for work or when I just got to work and walked up a flight of stairs -- he said that maybe I just need to chill out a bit. Stress is really not the problem here. I'm sorry that was so long, but I'm so confused. Any words of encouragement or advice would be appreciated. My doctor has me set to start on IV fluid therapy, but I have a call in to her to ask whether we should wait for answers from BIDMC, since who knows what they'll say after that testing.
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