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Lackadaisy_baby

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Everything posted by Lackadaisy_baby

  1. I signed a release for the EP study and ablation, but I suppose I just didn't think that "ablation" would refer to anything other than a possible atrial tach. in this case. I called my EP Sunday night after I had a couple episodes of presyncope (felt lightheaded and my vision whited out a bit). I explained that either the pauses I'm having are either getting too frequent or lasting longer. I said my heart is either going too slow or trying to go too fast now - there doesn't ever feel like a normal middle ground. He had me come in yesterday to get an event monitor with telemetry capabilities put on, and lo and behold, the company responsible for watching the ekg called me twice to tell me I'd had a 3 second pause. This morning, my HR wouldn't get out of the 40's/50's until I ate breakfast, and I had several miniature head rushes both yesterday and today. The waiting is the hardest part of all this. He can't just slap in a pacemaker on account of only a day or two of arrhythmia for obvious reasons - he needs at least a few days' worth of data before even considering it, especially if I haven't actually fainted or had otherwise serious symptoms. Plus, he has to just give my heart a while to try and recover on its own. The only upside to this is that I know for sure now that I don't have underlying hypotension issues - BP's been normal every time my machine's managed to get a reading, even at low HR's.
  2. I use an Omron wrist monitor as well. I took it to my last office visit and compared it with their results (hospital-grade automated cuff) and both Sys. and Dia. were within 10 points, which I assume is pretty good considering that BP can fluctuate by the minute. I don't trust home-use arm cuffs because they're always huge on me. Using the upper arm is always best if you can, but wrist monitors are accurate so long as you stay totally still and have your wrist at heart level. The only thing I don't like about wrist monitors is you can't use them lying down.
  3. I didn't call him initially, because I know that palpitations and slight changes are usually normal immediately following an ablation. But then I had it again for almost 8 straight hours last night, so I finally called him this morning. He told me that when they do anything to the sinus node, the inflammation can block some of the electrical signals. He told me that as long as it's not giving me any physiological symptoms like lightheaded-ness, etc., it's most likely fine and should clear up soon. I really hope so. =\ As far as the IST is concerned, I don't know what's going to happen if the ablation doesn't work. If what I've got is indeed IST, it's so mild that just 25mg of metoprolol was giving me sitting bradycardia at night. My rhythm is normal so often (~80% of the time) that I'm pretty sure most anti-arrhythmics will do more harm than good. The thing that bugs me the most about all this is that for an IST Dx, you have to rule out all other causes of sinus tach, which we hadn't quite done. I had been planning on seeing an endocrinologist and a gastrointernologist to rule out celiac, etc. And if even if they hadn't been able to turn up anything, I'd have liked to maybe try an SSRI or maybe even a different anti-arrhythmic first. Ablation is supposed to be a last resort, and I'd have been fine with it under those circumstances. I can obviously still go to other specialists to have testing done. But if they find an underlying cause for all this and treat it, what'll happen to my HR? UGH. What's your sister's IST like, Rissy? Is it episodic at all? And thanks for the support.
  4. Background: During my TTT in January, there were spikes of what my EP thought was an atrial tachycardia. Fast forward to now, and given what happened on the TTT, combined with a short PR interval on my EKG's, and my sinus tach, he asked if I'd like an EP study. I agreed, thinking that if any ablation were necessary, it would be for AT. Otherwise a short, easy peek at my heart. Nope! The AT turned out to actually be what they considered to be IST (I guess the short PR was meaningless/normal after all), so they went ahead and did a partial ablation of my sinus node. I am NOT a happy camper about this. To their credit, my electrophysiologist and his colleagues are some of the best in the business, and they explained that they were very careful to do as minimal an ablation as possible that they felt would get results. I believe them, and believe they would never do something like that unless they really felt confident in the diagnosis. But still... I'm not sure I agree with IST. At the very start of my symptoms, I considered IST. The first week after my first episode, my HR wouldn't go below 90. It got to 150 one morning just going to the bathroom. But within the next few weeks, things seemed to simmer down. In the evening, even when I was up and moving, my HR would generally stay between 80-100. My first holter showed an average HR of 93. High, but still too low to be IST, especially since my sleeping HR reached the 50's, which (as far as I know) does not happen with IST. I wore a 5-day monitor a few weeks ago, which I don't know the official results of, but I imagine they were normal outside of some tachycardia. As far as I know, people with IST get ridiculous tachycardia with very little movement. Their nocturnal HR doesn't go below 80-90, and their sitting HR is usually tachy all the time. They don't have periods of normality, or at least not frequently. I've had episodes of sitting tachycardia. I've had evenings where my HR in bed before going to sleep will be borderline/low tachy. I've had days where I've felt more prone to tachycardia. I've had nights where I'll wake up tachycardic BUT!!! My HR in the morning will be in the 70's-80's I've had several occasions of normal standing HR IST does not occur in short "spikes" like it supposedly did during my TTT So... I'm not entirely sure where my EP got IST from. Maybe I'm mistaken, and it can be episodic instead of constant. But if I really do have it, then it's the world's mildest case. =\ Either way, I'm not happy at all. I have no idea what this will mean if I get one of my episodes of lightheaded-ness, especially if I have one within the next couple days while my heart's still irritated. I'm terrified my heart will try to speed up, and wind up going nuts because of the lesions. I already had a period of about 20 minutes earlier where my HR was only 58-63, and beating very oddly. Lots of pauses and hard/irregular beats. And of course, I've still got my regular visual and musculoskeletal symptoms. I want to pull my hair and cry.
  5. The past couple weeks, I've been getting this odd feeling in my chest, as if there's something in there (maybe against my esophagus?). It's not painful, and there's no squeezing or anything like that. It's just a mild disomfort. It'll seem to spread upwards sometimes, too. I'll get a very slight sensation of pressure in my throat around my collarbone area. I'm wondering if it's just a weird way to be aware of my heart, but it certainly doesn't feel like any palpitation I've ever had. Anyone else have something similar?
  6. It's funny how your body can get so used to tachycardia that it becomes your "normal"... To the point that an actually normal HR of 63 can freak you out like that. Never thought I'd actually be happy to see 100+, that's for sure! lol
  7. I'm having so much trouble with this as well. I've had days where my sitting HR won't go below the 90's, with standing pushing it to almost 130. I've had mornings where it'll be 110-120 sitting, with only a minimal rise upon standing. I've had other days recently where in the mornings, my standing HR only makes it to the upper 80's/low 90's, with only mild tachy in the evening. Heck - just late last night I was borderline bradycardic, which triggered a lovely mini panic attack that boosted my HR to 100. Right now? 110. It's especially irritating since my EP (who's treated hundreds of OI patients) is starting to doubt if I have full-blown POTS. I seem to have more days that suggest I don't... But then what about the days that do?
  8. Shortness of breath (esp. at rest), easily. It's more anxiety-inducing than even my palps and chest pain. The pain I can sort of tolerate because I know it's essentially "harmless", but any shortness of breath will send me diving for my pulse ox.
  9. Does anyone ever experience an increase in PAC's or PVC's along with their other symptoms? I used to have a PVC or two every couple months, if that. The past month I've had at least one every few days or so. I'm not worried, as I know my heart's physically healthy, but I was curious if there's a connection to PoTS.
  10. I see what look like little camera flashes sometimes, along with a tiny black spot in the middle of my vision. I tend to get more floaters in general during and right after I shower, although that may be because I'm looking for them more.
  11. I'm getting something sort of similar soon, although it's only for my heart rate. It's an event monitor by Lifewatch that constantly transmits my ekg data to a center where it's watched by trained staff. It's also got a function where if I'm having an abnormal rhythm, it will call my cell phone, and transmit the data to my EP's phone/computer. If I'm having a dangerous rhythm, it will either send a signal to 911 by itself, or the Lifewatch technicians will call on my behalf. I'm wearing it for a month because my TTT showed brief bouts of a potential PSVT in addition to my elevated sinus rhythm.
  12. Forgot to mention that some of these episodes will be preceded by minor head sensations - cold pins and needles, a cold "burning" at the base of my skull. I'll also sometimes be feeling a little "anxious" for a while leading up to it. It's a hard feeling to describe... Like a combination of being a bit out of breath and like my body's at the edge of fight-or-flight.
  13. This is by far my most frustrating and scary symptom. I'll be sitting on the couch or at the computer totally calm, when all of a sudden my head will feel incredibly cold both inside and out (I'm guessing this is lightheadedness), and my HR will creep into the 120's-140's within 30 seconds or so. Sometimes my heart will feel like it's pounding and other times I only know my HR's up from experience and checking my pulse. My oxygen level stays normal. I've had enough of these episodes by now that I can stay mostly calm, and if I do some deep breathing my HR will slowly come back down. I'll feel a little shaky for a few minutes afterwards. The whole experience lasts maybe 5 minutes, but of course it feels much longer. They seem to come in waves, too. I'll go a few days to a week without one, and then I'll have at least one a day for a few days. It's incredibly hard because I've been suffering from health anxiety ever since my symptoms started with an episode just like this. Each episode gives me an initial thought that "This is the one where you'll pass out" or "There's no way this could just be PoTS; this is [insert deadly problem here]". But what's really odd is that even though I'll have those thoughts, I don't actually feel any fear; at least not that I'm aware of. So these aren't panic attacks. I was never like this before. I'm really hoping my neuro. will order tests for my adrenaline levels. So - does this sound like a typical adrenaline rush? Anyone have anything similar happen?
  14. Mine seem to be the worst when I'm in bed, especially if it's a day where my heart desides to be tachy even lying down. I'm told bedtime palps are very common, though. You're lying still and quiet, so there's nothing to distract you from your heartbeat.
  15. I chose "no identifiable trigger" because I haven't had enough testing done yet, although my B12 levels may play a role. I had a similar arrythmia issue with my tilt-table test. HR went up like it should with PoTS, with sporadic bursts of some kind of other tachycardia. I'd had two holters before that though, and it didn't show up there - or if it did my cardio. didn't think it was frequent enough to cause concern. Very frustrating...
  16. Thanks for the replies! I think I may request a sleep study just to be sure, especially since I haven't slept through the night since my symptoms started. For now, I'll just try not to think about it too much, which is probably half my problem, haha.
  17. I get it too! Sometimes when I'm lying down my heart will be beating so hard that not only will I feel it in my back/neck/shoulders, I can actually feel my body rock with my pulse. I can feel my heart thumping away in my chest just sitting down as well. I've only been having symptoms since December, which started suddenly and intensely. So despite normal cardiac tests I'm still suffering from a good dose of health anxiety (reminding myself at least once a week that I'm not about to drop dead of myocarditis or something). The pounding heart is NOT helping to say the least.
  18. I recently bought a pulse oximeter to keep track of my HR throughout the day, and I've noticed something odd. I was sitting on the couch with the oxi. on, and my SpO2 was holding steady at 98/99 for a good while. I was tired, so I started to doze off, only to snap awake a couple minutes later with my SpO2 at 94. It came back up to 99 within another couple minutes. Now I know these things can give erroneous readings sometimes, so I experimented about 5 more times, letting myself start to fall asleep, making sure to not move my hand. Each time, my SpO2 dropped and came back up. I know that anything between 95-100 is perfectly fine, and in reality 93/94 isn't dangerous either. But I also know that oximeters can be off by as much as 2-4%, so while I could have actually been still between 95-100, I could have just as easily been at 89. I'm not anemic, so I don't have issues with low hemoglobin that could cause a drop. Maybe it's my breathing? Anyone else have a similar experience?
  19. I might look into SSRI. At this point I'll try almost anything to get a full night's sleep. That makes sense. The only mystery would be what makes my HR instantly jump up in the first place. The electro. thought it looked like it may be a form of PSVT, but if it is, it's only lasting 5-10 beats at most. Definitely gonna ask about the "protection mode" concept, though.
  20. Thanks for the welcome. As far as my blood work, they checked my b12 and folate, did an ANA test for lupus, and checked for the Epstein-barr virus. Nothing else that I know of. My symptoms at night are incredibly frustrating. The sweating ranges from very slight to my whole shirt being damp, and I wake up 3-6 times a night. I haven't slept more than 3 hours in a row in weeks. There are times when I wake up that I'll have this odd sensation... Not actually out of breath, but like my breathing's been switched over to manual. Rarely, I'll wake up with my heart will be pounding/racing and it'll stay that way for a few minutes (not connected to a nightmare or anything). I used to get these odd headaches that seemed to come from the pressure of my head on my pillow, and because sleeping on my stomach just made me aware of my HR, it was a choice between pain and palpitations. Thankfully, those headaches have stopped. For a while, I used to look forward to the evening because it was the only time I felt normal. My resting HR calmed to the 70s, which meant I could walk around the house a bit without worrying too much about tachycardia. Now tachy. at rest is slowly getting more and more common. =\
  21. Hello everyone. New here. This past week, after almost 3 months of various neurological and cardiac symptoms (and several doctors diagnosing "anxiety") I was diagnosed with POTS and b12 deficiency w/out anemia during a hospital stay. I was given a tilt-table test, which my neurologist described as the "pregnancy test of POTS". My HR went up, but something was clearly a bit out of the ordinary. The electrophysiologist observing the test noted that while my HR in general had an upward trend, it would also have moments where it would instantly speed up for a few seconds (I think it hit 148 once) and then instantly drop back down. She actually had to call in another electro. for a second opinion, and after several minutes of debate, they seemed to conclude that everything is okay. I also had an echocardiogram and brain MRI, both of which came back fine. Now as far as I know, these brief changes are new. Before my hospital stay I'd had 2 holters, lots of EKGs, troponin and d-dimer checks, thyroid checks, a stress test, a lung CT, an initial echocardiogram, and CT Angiography, all of which came back normal. I want to believe this is POTS or b12-related, but from what I've read, POTS doesn't involve instant HR changes like mine. Also, there are days where my resting HR will still be pretty high (at least 100). I could see that being normal if I had orthostatic intolerance or hypovolvemia, but I don't. There's also days where my HR will stay pretty normal. My symptoms have included: - lightheaded-ness (feels like my head's been dunked in ice and filled with air) / mild dizziness - cough - all sorts of pain - chest pain: Mild to moderate, usually around my heart/left breast, but has happened on the right too. Usually feels like a blunt stab or cramp, but has felt like a slight burn. Has gotten worse lately. Not related to gastro. issues, as far as I know.- pain in my right rib cage that sometimes radiates to my shoulder- pain in my arms and legs- muscle tingles and spasms - mild gastrointestinal issues - headaches - small floating shadow in vision - night sweats - nausea after eating - HR: Sometimes normal at rest, sometimes mildly tachy. Will raise to at least 120's after standing for anywhere from 5-20 mins. Have woken up with racing heart. For now, I'm on 2000mcg b12 supplements and something called Pyridostigmine. It's too soon to know if the Pyrido. is doing anything. My neuro. has ordered blood work surrounding my b12 issue and I'm scheduled for a follow up with the electro. in February. I'd like to know if anyone's had an experience like mine as far as their HR goes. I know that I technically have POTS, and some of my symptoms fit, but I'm honestly not sure. Thank you!
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