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Spiders from Mars

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Everything posted by Spiders from Mars

  1. @Eraena Me too. I added the cycle day to my daily logs and a 0-3 scale for energy to track. Might give you a better window for testing. My biggest hr increases are usually between days 7-16 when estrogen is highest.
  2. I haven’t been officially christened as hyperadrenergic yet, but I’m pretty dang sure. Just had a tremor episode with bp spiking to 175/103 (resting bp an hour before was 102/62). Anyway, was on florinef for about 2 months at .1mg twice a day, which I learned later is incredibly high to start at. I ended up with severe edema in my hands and abdomen, the most extreme palpitations I’ve felt yet, and my bp was staying up even after sitting (135/90 at cardio) which it normally didn’t do. Came down to .1mg once a day, and then off. I think most of the worsened cardiac symptoms were due to hypokalemia, which my cardio didn’t warn me was common on florinef, nor did he even bother to check. My Kardia ecg app showed hypokalemic patterns, in my laywoman’s analysis of them. As was already mentioned, aldosterone levels can take a while to come back, even after tapering off fludro and I assume licorice root too. I have no idea where my levels are at because they were never tested. On midodrine now, still have hypertensive spikes. Ironically I felt the best on florinef and wonder if I’d fare better if it had been started lower at .5mg or even .25mg. My new EP gave me a beta-blocker to stop bp/hr spikes, but I’m afraid to take it and have my already low resting bp/hr plummet. I’ve seen POTS people say they take fractions of prescribed amount of beta-blockers and that low-dose is key, so perhaps low dose florinef might be the key too.
  3. @Eraena Also - how do I say this with out sounding creepy - are you female? I’ve noticed I’m way more symptomatic at certain points in my menstrual cycle, to the point where I can predict tremor episodes (more heat sensitive) etc. Might be helpful to chart, or find some other pattern. My EP didn’t bat an eye when I told him I wanted to do the holter and 24hr catecholamine he ordered during the week I ovulate.
  4. @StayAtHomeMom Thank you, that’s a great idea! I’ve already got plenty of data. My neuro also said he loves to give them too, so I can go back to him if the EP won’t budge. It’s ridiculous to me to be so eager to pass out just to prove everything. I’ve done 3 holters, EP wants a fourth and I want to scream. This forum (which I’ve been lurking around for a while) is seriously saving my sanity.
  5. I get the prickly/itchy, hot feeling in my legs when I have vasovagal episodes (also have POTS). My bp will be low, hr will start to elevate a bit while lying and be pounding, and if I stand I’ll faint after about 3 minutes. Caught my bp at 80/48 once before I had to lie down to stop it. Yep, hr through the roof and usually bp too, short of breath if walking and can barely breathe and wheezing if I’ve run. I was diagnosed with exercise induced asthma as a kid and now I wonder if it’s just exercise intolerance related to all of this. Always worse in extreme temperatures. I was just lamenting that I feel the best when my bp is around 135/80, which my cardiologist thinks is too high. But anything lower and I feel like crap! Trying to get out of bed when it’s 90/55 is torture for me. Lost the last quote, but regarding OP, my tachycardia is all over the place. I’ve had a 95bpm increase, but on average about 50/60bpm increase. Sometimes it’s sustained as long as I’m standing, most of the time it cycles +-10bpm, and sometimes it will rise a bit and then spike a few minutes later and settle back to merely elevated. Other times it seems pretty mild from a low resting bp to “only” 100ish. Your TTT might just not have caught a bad day. I haven’t been able to have one yet, but I’ve seen other say they’ve had more than one before they “failed” one properly. It’s a fickle, unpredictable syndrome. Mine has also changed over the years and I wasn’t always this symptomatic every day. I only had vasovagal when I was younger, then just POTS, now both again, so who knows...
  6. I agree with the sitting after being active thought. The other day after going to doc, picking up prescription and trying to do a couple dishes, I sat down but kept my feet on the floor, my back straight and not supported (I always sit on my feet and sink into the couch), which kept my blood pressure up and I didn’t crash like I usually do. It might have just been a good day, but I’ll keep experimenting. Normally, if If I feel well enough to be active, I will crash as soon as I sit/lie down. I’m assuming because my heart rate and blood pressure drop when sitting just as fast as they spike when standing. If I’m active even part of the day my body will be jello the next day and I’ll have bad leg pain like I ran 10 miles. It’s hard not to feel guilty or lazy when you are so drained you only have enough energy to stare at a wall. P.s. Also just did a 24hr urine test for tremors, but the lab messed it up by not putting preservative in the container. Have to do it again now!
  7. Oops, just saw your reply. That’s the exact increase in bp and hr I get upon standing. An increase in blood pressure and heart rate when standing could be hyperPOTS.
  8. I have hyperPOTS, but I tend to get chest tightness/squeezing/pain when I have episodes of high blood pressure. I have low resting bp, but when I stand can have hypertensive spikes. I think the sudden increase is what gives me symptoms (most doctors say hypertension doesn’t cause symptoms, but that’s sustained). Heat is also a trigger for me, like taking a shower, causing more vasodilation and the most extreme blood pooling for me (very purple feet). In response, my bp/hr will spike. Try checking your pulse and bp when you have symptoms and compare to baseline readings.
  9. Still struggling to get a diagnosis of hyperPOTS at this point, but these are my favorites so far: - After 2 months of visits to the cardiologist following a severe syncopal episode landing me in the ER, he looks at me and says, “well, I don’t think you have POTS. I’ve seen people with heart rates from 40 to 150, sustained.” And then, “things like this often go away with age.” My heart rate DOES range from 50s to 150, stays elevated, and he obviously is ignorant of the criteria of 30bpm or >120bpm. Also, I’m 34 and it’s worsened with cardiac symptoms so yeaaa, not gonna go away dude. He never even checked my pulse after standing. Did put me on .2mg of fludro, which I later found out he thought had only been .1mg, and gave me severe edema and worsened cardiac symptoms. - GP, same story after nearly a year of visits and developing tremor episodes says to me, all in the same visit: >> “Maybe this is just how your body is now.” << ”It’s probably low blood sugar, you should eat more protein.” (Told her it didn’t feel like low blood sugar, but like adrenaline and even after I eat, but sure.) ”It could be stress.” (From being house-bound without a diagnoses or a doctor who cares? Well then, yes.) “You should make an appointment with a psychiatrist.” (Ditto.) They’ve both also rolled their eyes and chastised me for taking my pulse rate, so I didn’t dare tell them I also take my blood pressure. Gasp! So here I am, still without a TTT and a new EP who thinks I MAY have POTS.
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