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  2. Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too. I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.
  3. @AllRelative -sorry for the delay. Life! I went to Hopkins because I had some great connections there, and my doctors in Colorado weren’t as helpful as I would have hoped. They don’t have a Dysautonomia group, but they have an informal group of smart people that often work together on odd patients like me. I’m waiting to get an appointment at Vanderbilt.
  4. Today
  5. Melatonin is a God send in helping me sleep. I'm only taking 5 mg per night (and have been on and off for a few years), but trying not to take it every night because I'm not sure of the science behind long term use. I'm not sure if it would help with any of this. Besides, ideally there would be a non-drowsy solution. I already have enough trouble getting up and around.
  6. Yes. I started taking melatonin and it helped at night. Oddly, it doesn't make me tired. Thinking of trying it during the day too.
  7. @Friedbrain I can empathize as my HR used to be concerningly low with resting HR of about 47 and a sleeping rate of about 43. I also occasionally dipped into the 30s. If you feel that your cardiologist doesn’t give the help you need, seeking an electrophysiologist (they specialize in heart rhythms) might also be something to consider. I also stayed up for a whole night when my HR was in the 30s. I would move around every few minutes to raise my HR. My electrophysiologist did give me a pacemaker and I love the thing as it has eliminated some troublesome symptoms for me and setting the base rate at 70 has made my OI better. Best wishes and let us know what the monitor shows.
  8. Do people end up extra fidgety with this as well. As this particular set of symptoms have been really difficult this weekend, I'm realizing that I'm constantly doing something with my arms or hands with all this subtle rocking/bobbing back and forth. Wonder if this is more an adrenaline issue than what some people are talking about here.
  9. Thanks so much. Interesting. So glad you are doing better with this. Can I ask why you are taking the prednisone?
  10. It could be that the levels of clonidine in your blood are too variable with this dosing. They will be at a peak after taking and then get lower later. Perhaps you feel worse as you are going into a mini withdrawal? Whatever the reason, the clonidine pill for me would work great a few hours and then I would feel worse I solved this by moving to the patch which has worked great as it provides a much more stable dose. I don't take it for sleep so I can't speak for that. I would also note that I actually had worse orthostatic intolerance for a few weeks when starting clonidine until my body adjusted to it, so keep that in mind.
  11. I have POTS, not sure yet what subtype. A new neurologist just diagnosed me with EDS also and gave me a prescription for Clonodine, half a .1 tablet at night to calm things down. It definitely helped me sleep more deeply although it did not eliminate the usual sleep interruptions of flushing, sweating and elevated heart rate. In fact, it seemed to increase those symptoms. The Clonidine changed the times at which I wake up, and once I was awake I would stay awake for up to two hours rather than going back to sleep as before. After a few nights of taking it, I was also looking for cookies in the middle of the night. During the days I felt depressed, so I cut down to 1/4 of the pill. I'm back to my "normal" sleeping patterns now, but my peripheral neuropathy seems quite a bit worse. Does anyone know much about Clonidine and why I had this reaction? Does anyone else find it ( possibly) exacerbated nerve pain? I did call the doctor's office and they advised me to cut down then stop taking it and said we can try something else at my next appointment. Does anyone else use another safe medication that works for them on severe sleep interruptions? Florinef increased my neuropathy and I was scared to try Midrodine because of the creepy-crawly side effect, which I always experience anyway. Thank you. The Clonidine only cost me $1.78 for a two month supply so I liked that side effect. G
  12. @Friedbrain have you ever checked your BP during these episodes? I know my HR drops into the 40s and occasionally 30s when my BP is near crisis territory (180/100). They sound scary and I agree with Pistol that the testing should hopefully get some answers.
  13. @Friedbrain - yes, unfortunately this is a POTS reality for most of us. I love to play Monopoly or Skippo with my family but after no more than 10 minutes I am wiped out and have to lie down. Even reading or watching TV, prolonged computer time or ( sadly ) even listening to the radio or music turns into an stressful experience comparable to being exposed to nails on a chalkboard. I could sit quietly on my porch listening to the twitter of the birds in the trees and suddenly it feels like I am sitting in the middle of a construction site!!!
  14. The original one is on sale at a few places on Black Friday. Still expensive but makes me feel better about splurging. 😁
  15. Yesterday
  16. Dear @Friedbrain - the only way to determine what is going on is by following your physicians advice. A monitor is a reasonable diagnostic tool for what you describe. If you or your doctor think that your low HR could be linked to dysautonomia you might want to consider an autonomic specialist. At this point you should follow your doctors advice and see what the 48 hour monitor shows I had MANY of those when I first became ill with POTS and I WISHED it would have been a slow HR - that could have meant a pacemaker. So - please do not get too worried - your docs seem to be on top of it!!! Hang in there.
  17. 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.....?
  18. 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.
  19. 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!
  20. 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.
  21. Hi A new fainting/syncope clinic has opened at the Sydney Adventist Hospital. Might be helpful for suffers of Dysautonomia who live in NSW: https://www.sah.org.au/blackouts-and-faints
  22. 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!
  23. I take naratriptan for acute migraine, not for daily headache. Imitrex did not work for me, but naratriptan does. You may need to try several of the triptans till you find the right one for you. They are not all the same. I have completely disabling migraines that last several days, so the side effects of the drugs are far better than the migraine itself. I was told, you need to take it very early in the prodrome phase of the migraine for it to help, if you wait till the pain starts, it is less effective. https://www.drugs.com/imitrex.html
  24. Brilliantly put, thank you for expressing it so well! I really struggled after diagnosis, I thought I would feel better once I knew what was wrong with me, but instead the 'weight' of having a chronic illness was quite overwhelming. I am coming to terms with it and CBT is helping. I found that friends and family were super supportive at the beginning but now that I am coping pretty well, managing at work etc, they seldom check with me how I'm doing. It's like they've forgotten how unwell I can be at times and how much of a struggle simple things can be because I appear to be well .
  25. The strange thing, which adds to this and that I mentioned in another thread, is that I recently had an echo that the doctor couldn't even read. And it's not even the first time something like that has happened to me. So there must be something going on with blood flow. I just don't know how to tell if these particular issues are connected and I'm not optimisticl the doctors would be able to put it together either.
  26. My doctor had never seen anything like it. I had a doppler study to check blood flow, but it was fine. Of course, it was done laying down.
  27. Thanks Kim. This is what I meant. Perhaps with our circulation issues, lack of blood flow doesn't allow for proper healing in a timely manner and if this might be the case, I might want to avoid either of the options the doctor, who seems outmatched, has given to me as neither seems to be without harm.
  28. I am also a slow healer. I had surgery on my ankle and the incision pulled open, maybe because of swelling from blood pooling. The incision bruised. It has been 4 years and still looks bruised. I think it has something to do with POTS, but I don't know what it is. I was supposed to do the other ankle, but that surgeon, a podiatrist, declined to do it.
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