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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. Regarding steroids--when I started cortef in 2203, I was taking 10mg am/5mg pm (rarely "updosing" with an extra 5mg when sick), for adrenal insufficiency. Maybe because it was a replacement dose, I never had problems taking the pills (except sometimes at night-nobody had warned me that taking it at bedtime was a no no). When a new doc wanted me off the cortef, thinking I didn't need it, CC doc disagreed. As a compromise, I went down to only morning dose-problems ensued (with secondary adrenal insufficiency, I was usually ok except when stressed; but I experienced other problems that docs thoug
  9. I'm glad that they are ruling out a pheochromocytoma. I thought of that when I saw your NE/Epi values (but no baseline levels?). A long time ago, when I was experiencing mysterious probs, they measured my 24hr urine to rule this out (mine were abnormally low). Ironically my problem was the exact opposite-adrenal insufficiency. You will find that most normal doctors gave very little understanding if adrenal problems. (But at least my family doc had been trying to think outside the box!) I too have had abnormally low blood cell levels for the past three years. Consistently neutropenia, and usual
  10. I'm glad you were able to get diagnosed and, along with that, to receive rehabilitation guidance! Unfortunately for my sister, her hyper mobility (most likely EDS) has never been diagnosed. Now in her 40s, she's having problems with her arms falling out of their sockets, etc. I didn't know there was anything she could do once it got to that point! Huh. I took my son into get diagnosed, in order to be "ahead of it" because he's hyper mobile like she is (and also has some unusual developmental issues that are characteristic) but the doc's only advice had been to be kind to his joints (soft impac
  11. Potluck, I lost my vision in the middle of my wedding, after standing so long. I didn't understand it at the time, but that was obviously an extreme stressor. I'd started sweating and getting weak (my pre-dh had put his arm around me when he'd noticed I'd started swaying). I'd been adamant that I didn't need to sit down (disrupt my wedding?!). But then everything went black! At that point I grabbed out for hands and started to shuffle backwards. My dad caught me from behind (so, see, there is logic for having father of the bride sitting behind the bride!) and my pre-dh had me at the side, to
  12. When I had to stay off solids for 24hrs before my first colonoscopy, I drank clear broths (high in sodium) because, otherwise, I would've gotten too weak and dizzy. However, I discovered that there is definitely a tipping point because , too much, and I became very jittery.
  13. it was hard to gauge the degree of emergency from the Internet-it sounded like it was only an emergency if it ended up in my lungs. I took four baby aspirin (my blood thinners, after the fact) and heated it (not sure the purpose-dilates? Get's blood moving?). Maybe it's better, maybe the aspirin took the hurt away and I can't tell. ( I hate taking pain killers for this reason- I prefer to know! But wanted the blood thinner effect). But since I don't know, tomorrow seems a long time away! Why didn't I automatically go to the ER? Because I was just there in June (doc directed, so not an over-re
  14. This would only be a peripheral problem but ekbering if anyone else here has had it? My blood pressure runs low and when I'm symptomatic w dysautonomia, sometimes my Bp and hr are REALLY low at night. Maybe because of this (combined with a past history-maybe current?-of anti phospholipids (risk of blood clots), I'm having DVT in my lower leg right now. Of ALL the problems I've had and worry about having, thus was not in the list! I awoke in the middle of the night (lowest time for my Bp and hr) with intense aching in my lower right leg. I've had many aches-joint, muscle-nothing like this. Noth
  15. Yes but I don't know why. It's awful. Conditions that bring it on/made it worse: evenings(when combined with the other triggers), sometimes after eating sugar, around ovulation (almost every month when i was in my 20s). Nursing my first son, evenings from about the 5th month on, getting worse and worse until I couldn't take it anymore so I weaned before going on the steroids the doc had prescribed (around 11mo) and it all cleared up wo medication; and when I had a progesterone-only iud. This was the worst-every month was 10x worse until the month I couldn't sleep because I was in such achy ag
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