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Everything posted by Friedbrain

  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) and my blood pressure beforehand was something like 125/90, which was really high for me, with heartrate up to 100 for nine hours (the following day, peak was 89 max). I took my first 1/2 xanax pill in years because I didn't want to suffer the health fallout from so much stress-the half pill barely took the edge off of my shaking but I'm sure I would've been worse had I not had anything! Note to self for next time-I can handle a full pill (they're tiny!). I don't think I've ever seen my bp over 145, and at that point, I felt awful! Can't imagine it higher than that, yikes. @Sushi I've read about the pacemaker being a solution for low heart rate rather than dying from it, but I'm afraid of that solution because I like to exercise. If you don't mind, I'm curious what it is like having a pacemaker. Can you still exercise and get a higher heartrate? I really don't know much about it. Thank you!
  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 not convinced I need to be on pred for adrenal insufficiency BUT they also agree that it helps me (tapering has caused severe symptoms), and maybe from the anti-inflammatory properties. Anyway, they don't mess with it anymore and I work to stay stable
  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 breathing. It scared the beejebers out of me and I woke my husband, asking him to make sure I kept breathing. That was the last time I took xanax, and was a long time ago. However, after getting an apple watch earlier this year, I have learned that my heart rate is very low and, at times, very low! It's scary. I'm an athletic 50yo (using 2x electrolytes when I work out to avoid post-workout shakes, as mentioned in a previous post) so the doctor said that my baseline heartrate in the 50s is not abnormal. But my watch shows me that it drops into the 40s for over ten minutes at a time (I set it to give me alerts when this happens) during the night after daily stressors, and it even drops into the 30s! This doesn't happen often but it has after traumatic experiences like my car battery dying on my way to work (most people could handle this but I started violently shaking from the stressor), and my heartrate dropped into the 30s that night and I had numerous low values every night for about a week. At work that week, I was feeling breathless and could see from my watch that my heartrate had dropped. I went for a vigorous walk to get my heart pumping, which helped a lot. I'm fortunate that I've learned ways to balance my body but I'm afraid I will die one night from my heart just....petering away. My endo said that was bad and I should see a cardio; the cardio thinks it's an endo problem but will put me on a 48hour heart monitor to rule out any specific cardiac problems just to be sure. For MANY years, I've seen a correlation between stressors and those symptoms followed by the counter-response symptoms. Am I the only one who has problems with counter-low heart rate? I also found that the daytime crashes are associated with extra-low heart rates in the 40s. As you can imagine under these conditions, I am too out of it to seek help even if I did think I needed to go to the ER. So far, I've survived all of the daytime and night time low heart rates but.....?
  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 presence of a doctor but....sure scary! I have those notes on scraps of paper stuffed in my bedside table lol I'm glad you are going to organize them!
  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 feverish. I guess I (we) are very sensitive-needing it when we do, and then it's too much when we don't need it. I also use it during very hot days when I'm working in the garden all day (because-whoo-postural hypotension, hello!). I buy them in bulk from Amazon. Edit to add I am too sensitive to sugar so I need ones without sugar added.
  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 my doctor at the time. Anyway, a doc prescribed xanax for me to take at the onset...not sure if it helped because it still took about 10 min to kick in but I was able to then go to sleep. BUT having said that, I was also taking cortef right before bed, not knowing I wasn't supposed to take it so close to bedtime. Once I stopped doing that-started taking it at dinner and then later switched to prednisone last taken at dinner), those episodes stopped! I don't know how this can help you but it was my experience. Best wishes!
  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 thought may have been due to autoimmune). After an ER visit (adrenal crisis), doc said I need more cortef so told me to take an extra five every afternoon. Not quite ready to do that, I took 2.5mg (so less than what I took for 8ys). When I was under stress or hiking (physical stress), I felt GREAT (instead of trembly); if I took it while eating lunch...holy cow, tachycardia! It was awful! Surprised me. Anyway, new Endo then said-hey how about prednisone, longer and slower acting? Since thus is also used for autoimmune probs, I thought killing two birds, one stone. A bit of a bumpy transition, the two meds are a little different, but increasing to 2x/day (I think 2mg am/1mg dinner) is working great. No tachycardia, no sudden onset. Fwiw
  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 usually low RBC and platelets, as well. I did my tesearch and then insisted that they test my reticulocytes (why don't docs do this automatically in these situations?)-if your RBC are being destroyed but your body is making them, retic ct is elevated (trying to replace them); if retic ct AND RBC are both low...well, the factory is broken. Both my RBC and reticulocytes were below range. I ended up having a bone marrow biopsy...which they screwed up-too superficial or something (the whole experience was dysfunctional-even half conscious, I could tell the staff didn't like the doc; but I still had to pay the $$bill for no answers despite trying to protest). So, while I did not get answers (I'll be on my deathbed before I go through that again)-looking at a decade if blood work results, I can see that my count levels took a nosedive after a doctor had me reduce my steroids (was 15mg cortef daily for years). I recently switched to prednisone snd am taking more, twice a day. I hypothesize that my blood counts are better but I haven't had another blood draw yet.
  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 impact exercise etc.). Who did you see to receive the PT ideas?
  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 safely get me into a chair. Er, memorable wedding...sheesh. Now I recognize the signs!!!
  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-reaction then) and I didn't want to seem like I cry wolf. And no, I really didn't know anything about DVT or clot symptoms. I was first diagnosed with anti phospholipid syndrome in my 20s and it seemed like such a miniscule risk...over the years, though, I eh hem became older. A discussion I will revisit tomorrow!
  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. Nothing made it better. I finally fell back to sleep and, in the morning only hurt a little. I figured I wouldn't die from a leg ache so ignored it. It got worse until I couldn't even put weight on my leg. Dh is the one who asked about blood clot-I researched and all the symptoms fit!! . Even the Homan's sign-just flexing my foot brings on intense lower leg ache! I will call doc in the morning and will start faithfully taking baby aspirin daily....thought I'd mention it here in case others are also at risk.
  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 agony I was crying the entire time. I was ready to go to the ER to have them pull the dang plug because the doc's office wS too busy. AWFUL, but cleared up as soon as it was out. (and yes, I called the manufacturer to report the side effect but they never called me back). I sometimes took a little extra cortef in the evening when I felt achy like that, as I'm supposed to "updose when sick" because if adrenal insufficiency, and it always helped. I just wasn't brave enough to do it often. I have autoimmune problems, and I imagined/felt like a giant inflammation.
  16. One thing is to stay horizontal for a short while after exercising. As my heart rate decreases, it takes a bit for my blood pressure to increase enough to get blood to my head (when I'm vertical) and I'll start swooning (and then trembling). So I sit on a mat and stretch slowly (I'm flexible so am horizontal over my legs, but I've seen others on their backs). ALSO....absolutely critical for a reason I don't understand...I add 2x electrolytes packet without sugar to a bottle of water and drink that during my workout. I tested my theory once and worked out with regular water...and almost ended up in the ER because I couldn't stop shaking. The dh had to come rescue me with salty peanuts and water.
  17. http://stoppotsvirginia.blogspot.com/2012/08/hydration-salt-and-peeing-renin.html?m=1 I came across this site. I don't quite understand it but wanted to share it and see what others think. I fluctuate severely at times, from hardly urinating to suddenly flushing constantly (tho usually it's more mild), so I know my kidneys aren't kaput in the traditional sense-the model described in the link makes much more sense. Any others understand it? If my blood pressure is low (particularly at night, it can drop below 90/60), maybe renin kicks in to save me, and I get less urine (this would match with my EGFR that's below 60 in the mornings)... Other times, water goes right through me. Thoughts?
  18. Er I mean that he'd written that it was round the clock when it isn't. I did end up in the ER over this, soon after I started not being able to sense my bladder because I couldn't go in the morning, drank a bunch if coffee thinking I'd be able to go, and still couldn't....when I realized something was wrong, I pictured that I must be full if urine up to my eyeballs by that point iykwim. Pretty scary. My old uro then had me learn how to self catheterize. But fwiw..., as an aside....I now wonder if I'm even making enough urine at those times, as I started noticing that my urine sinks when I'm producing so little. I bought urine test strips from amazon-my urine is uber concentrated!!! So it may be more complicated, involving my kidneys! I don't understand it because it's not structural, since it can be normal....
  19. Sue, I'm reading from my phone but I think several ys ago, we noted shared oddball symptoms then, too. Fwiw, the uro I most recently saw was a pelvic floor specialist who said that my pelvuc floor muscles were too tight and that I needed PT. Thing was....I was asymptomatic at the time! I did undergo therapy the first time but it did little good and when I saw him again, same thing. (My symptoms are in the middle of my cycle) and he couldn't explain it. I saw his notes-he'd adjusted my symptoms (round the clock retention) to fit his treatment plan, which is when I realized he was too arrogant to document that he didn't know (which he'd admitted to me privately one time but not the time in front of the resident). So be careful!
  20. IMHO...cuz you're asking...you should check w a neuro. Yes it's just one little symptom but it's an unprovoked sensory experience in strange places. I've had general autonomic related heating, but it was followed up w tachycardia; ie sympathetic activation. And if you have MS in the family, I think it'll ease your mind to talk to a Neuro. I say this from experience (and from my own perspective). I've had symptoms that overlapped MS, so had yearly MRIs for a while, and another baseline two ys ago after not having had one for a while. (So far, pretty normal so Neuro says Sjogren's). Another possibility-fwiw-my sister had a slow onset of sensory symptoms in her limbs that worsened over time into severe weakness. She waited. Turns out that her cervical spine was squishing the nerves and by that point, causing damage. She had surgery to get a steel rod (went very smoothly) but had a long recovery to normal because she'd waited. This isn't meant to scare you because it may be nothing but I'm personally an advocate of being on the front end of problems, if possible!
  21. Thank you for the thoughts on mitochondrial disorders. It doesn't seem like the research is very complete at this point, and maybe there's just a lot (too much?) of speculation. Sue-same here. Mostly difficulty voiding, sometimes initiating, often with completion (i have to squat to finish), slow stream.. Usually worst ten days around ovulation, worse in the middle of the night and early morning. After reducing my steroids 3ys ago, I started having trouble not even sensing a full bladder and/or producing urine. At my worst, when I had all sorts of MS like symptoms, the uro consult (in the hospital) said it was neuro related. Over the past 12ys, I have bounced back and forth like a hot potato between uro and Neuro docs, neither knowing anything and telling me to see the other. Ugh.
  22. Seemingly, not semimonthly. I need to proofread, sorry!
  23. Sometimes total flakes make ginormous statements and it's all hokey, so I'm just asking for opinions... Does anyone know anything (solid) about the legitimacy of mitochondrial dysfunction in relation to dysautonomia (and other related problems)? The theory, if I understood correctly, is that mitochondria are critical for energy production so dysfunction can cause semimonthly unrelated problems. Brain, heart, muscle...all high users of energy storage. What I found interesting -and what initially drew me to the idea- was a site that described my bladder problems to a T! Digging came up with a relationship between mitochondria and the brain (I've had probs there, too) and dysautonomia. Almost everything and the kitchen sink with little solid evidence, though, so then I started becoming suspicious. And I don't understand how symptoms (problems with mitochondria) could/would fluctuate. Thanks for thoughts!
  24. I use electrolyte packets and add them to water-no calories in the ones I buy (I'm very sensitive to sugar so I stay clear of the "energy" ones). And I ate a lot of salt (craved it before switching to prednisone) but it didn't cause me to gain weight overall. I wondered about whether, if I was holding water (some mornings) there was bloating but I never saw an obvious relationship. Why do you think salt would cause weight gain other than temporary water weight? Just curious.
  25. Sorry, can't edit from my phone-have a fat typing thumb. *swinging*, not singing
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