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Friedbrain

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  1. Thank you SO much for the feedback! It's good to know I'm not alone. I do need to follow up with the cardiologist to wear the heart monitor and rule out any other things but I don't always (in fact, I actively avoid them lol) have the symptoms so I don't know how useful. It's too cold to go hiking up a forest, which can make me crash afterwards, so... @toomanyproblems I agree, I feel worse when my heart rate drops. I figured this out once I started wearing the smartwatch and could see it RT. I was completely stressed last weekend before a good friend's funeral (I was going to give a eulogy) a
  2. After my grand mal seizures and while on anti-seizure medication, I was still experiencing a lot of symptoms including severe fatigue and postural hypotension. An endo did some testing and I had abnormally low levels of some hormones, which led to testing my cortisol level and HPA responsiveness to challenge. While borderline, this nice endo prescribed cortef to see how I would respond and I *did*! I was on that for many years but, after moving, a new endo switched me to prednisone. This was an improvement because I was still experiencing some symptoms during stressful periods. Newer endos are
  3. I had my most obvious symptoms of dysautonomia years ago when I was under a lot of stress, with spikes in heart rate, postural hypotension, shaking spells, etc., under various conditions and at various times. And I *crash* after strenuous activity (but maybe more related to adrenal insufficiency or a combination?), literally fall asleep and can't move for hours. I used to take xanax during particularly shaky times to help me calm down, until one night after one of my periodic and spontaneous shaking spells. After taking the xanax, I tried falling back to sleep but felt like I was barely breath
  4. My mom used to get mad at me because she's a sports fanatic and wanted me to watch games with her and I said I couldn't because they were bad for my health. She would insist it was all *good* fun so shouldn't be upsetting to me, not understanding that my body overreacted to any kind of physiological arousal. I understand the video games dilemma, too. My sons love video games and want to play with me but the games are designed to be physiologically arousing and I. Just. Can't.
  5. Thank you for asking this question! I rarely read about people tracking pulse pressure. I had to research it when I noticed the odd blood pressure values I would get when feeling really awful and shaky. What does your pulse pressure look like, under what conditions and how do you feel? I haven't tracked it in a while because, on prednisone instead of cortef, I've been much more stable over the past few years but back when I would become very shaky, my pulse pressure would be very low. Doc never had anything to say about it and mostly because it was nothing that ever happened when in the pres
  6. I'm a huge fan of Propel Zero Calories packets! At my worst with daytime symptoms with dysautonomia, I started having intense shaking spells after working out at the gym. I started adding 2 packets (so 2x) to a bottle of water, and I was just fine! I once decided to test the hypothesis that I needed to do that and drank only water during a workout....a few minutes into the drive home, I had to pull over because I was shaking so badly it wasn't safe to have the car in motion and my dh had to come get me. I used to also drink one packet with water during the day-until it started making me feel
  7. I used to get what you're maybe describing, periodically and especially after very stressful days. I used to think they were partial seizures since I was on medicine for nocturnal grand mal seizures (so I thought they were "breakthrough" seizures). I would wake up in the middle of the night, feel a heat flash and then slowly the onset of all-over body shaking. I can't remember all of the symptoms that went into the buildup to the all-body seizures but definitely the tachycardia, until everything including my teeth were rattling. I wish I'd had my husband film it so that I could've shown it to
  8. Susanhs, did you have a swallowing test? I went in for one where they xray the esophagus while I swallowed solutions of varying thickness. They observed that my.....gah, not remembering the name of that flap that covers the esophagus/lung juncture.....doesn't trigger correctly when I'm drinking water/light solutions. Thicker solutions trigger it, and it correctly covers my lungs. What this means is that I have a problem more typical of 70/80yos.....in that I am at risk of aspirating liquids (and yes, I choke on water/burp up air from the choking) into my lungs, increasing my risk of pneumon
  9. Lovebug,

    I am fascinated by that youtube clip you posted of the woman experiencing "POTS" shakes. I would like to make a thread on it instead of hijacking the current one with my own question, but don't know how to paste your youtube clip into a thread. I basically want to ask if anyone knows what those shakes are?

  10. MM, sorry, I read the thread but did miss the reference to APS. I have had assorted positive auto-antibody tests over the past 16 ys, some come and go. For a while I was close to a lupus diagnosis, but ended up with an APS diagnosis. I have had Hashimoto's since a kid, so when I had a miscarriage 17 ys ago, I demanded they test me for anti-phospholipid abs (because I knew the risk was increased in people with anti-thyroid etc antibodies)-which were positive. I've also had positive ANA etc. I have a diagnosed "adrenal insufficiency", and my endo just tested to see if I have adrenal antibod
  11. PS would you mind explaining what problems you've been experiencing with exercising? I, too, have been working out 3+x/week for about 4 years, and am in really good shape, but recently I've been having problems after exercising (new cardio says it's related to dysautonomia and I need more salt). Now I'm scared to exercise; it's like my body is not "winding down" correctly after exercising-my heart starts racing, or isn't slowing down, and I go into a panic attack/seizure/whatever (if I don't salt-load). Your thread is interesting because I hadn't realized others had concerns re left ventri
  12. Have you ever been tested for anti-phospholipid antibodies? If you have one auto-immune disorder, you're at higher risk for others. Anti-phospholipid antibodies can cause clotting. I'm supposed to take a daily aspirin. I don't because I take so many other pills, but I get lectured at every doc appt by ever doc I see, so I know I should....
  13. Oh, wow! I apologize for adding to my own post, but I think I just had a Eureka moment! In all of my blood work over the many years I've been collecting, I've always had abnormal BUN/creatinine ratios. Nobody ever commented on it-in fact, often the ratios aren't even reported. The creatinine levels are normal, but the BUN levels are either on the high side or high. (so even when my BUN levels were "within normal limit", the ratio was elevated because my creatinine levels are always perfectly normal). Since I try to investigate any abnormals (which also consistently include abnormal rbc v
  14. Ancient thread that I found while researching this. Any new answers? I'm still looking into this water/salt/blood pressure balance thing. Had another bad night last night, again after eating peanuts before bedtime. I don't have problems during the daytime after eating peanuts (and don't know if it's directly related to the peanuts, as I've only begun taking notice of a possible correlation). But I definitely had a partial seizure last night as I was falling asleep. I woke up and couldn't move for a few seconds. Had several more minor episodes before finally sleeping almost upright. Anywa
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