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  2. There are many different types of dysautonomia other than POTS, though that experience could have been some sort of orthostatic intolerance. Did it happen more than once? Getting up suddenly after lying down for quite a while (particularly in a stressful situation) can cause light headedness even if you don’t have dysautonomia.
  3. I have found Polar monitors with chest straps to be good...but all HR monitors average a few beats together so you are not going to get a beat by beat display although it is in real time. This doesn’t really matter unless you are trying to monitor an arrhythmia.
  4. Yesterday
  5. I'm laying down and getting a tattoo. I was in normal psychical health and was not diagnosed with anything at all. I'm nervous about all things involving needles so I'm 99% sure I didn't eat enough before hand. I definitely had plenty of fluids and had water and gatorade with me. After at least 2 hours of laying flat, I got up to take a break. After about 10-20 seconds I slowly collapsed. Tunnel vision, light headed, weak, slowly fell down. Can this happen to a person WITHOUT POTS?
  6. Can anyone recommend a monitor that you wear across your chest and can see your bpm in real time. Something more accurate than the fitbit and apple watch.
  7. Long story short my 13 year old and i both have pots. He also has aspergers. Its a nightmare. Day in and day out its constantly something. Hes been taking hydroxyzine hcl for anxiety but it doesnt seem to be helping. Is there any other anxiety meds you could suggest for him? He does take clonidine. Im afraid of news meds for him but we have to do something.
  8. I have the same problem as others have stated -- my normal HR at night is in the 50s with dips into the 40s and rarely into the 30s. I find when my Fitbit derived resting HT average is lower, I generally feel worse. IDK if that's because there's more of a jump up to 120 or so multiple times a day upon standing or whether the low resting HR itself causes me to feel bad. And by bad I mostly mean more dizzy.
  9. Thank you Scout. I've had plenty of MRIs. It's not the procedure that concerns me, it's the potential results or why it was even ordered in the first place. I'm having great difficulty scheduling it anyway. The only place my insurance will cover is quite a ride, wants me there at 9am and doesn't have an opening until March. Needless to say, none of these conditions work.
  10. Last week
  11. @MTRJ75 Hi there. I've had a cardiac CT scan, about 4 or 5 years ago it was now. I was very nervous about the procedure, but it was honestly fine and over with very fast. They give you a dye injection which wasn't too bad at all, and then they do the scan, and you're out of there. The CT itself was very quick, and compared to having an angiogram going up through the groin artery, it was easy. I'm sure the MRI procedure is a little different, but I just wanted to reassure you. It will be OK! As for the issue of cardiomyopathy, I'm really not sure, and that's something to definitely chat to a medical professional about. As far as I'm aware, an enlarged heart can be caused by underlying conditions.
  12. 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.
  13. @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.
  14. 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.
  15. 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.
  16. @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.
  17. 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.
  18. Thanks so much. Interesting. So glad you are doing better with this. Can I ask why you are taking the prednisone?
  19. 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.
  20. 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
  21. @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.
  22. @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!!!
  23. The original one is on sale at a few places on Black Friday. Still expensive but makes me feel better about splurging. 😁
  24. 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.
  25. 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.....?
  26. 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.
  27. 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!
  28. 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.
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