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About Charlotte1

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  1. @Random-Symptom Man - also wondering, if we got pacemakers for our bradycardia, could that help us feel better since I think you're saying that your breathing cessation episodes relate to the slow heart . (is it only at night?) I'm wondering if its possible that with a healthier heart rate, the central apnea wouldn't kick in?? btw, My overall AHI is 11 and overall RDI is 11.
  2. @Random-Symptom Man , interesting that you get the feeling that your chest is pounding when you experience bradycardia. Maybe that's what's going on with me and not so much a racing heart. All I know is there is a very uncomfortable (not pain) heart sensation when this happens and I must sit up... no laying around if I have any hope of the feeling dissipating! I've been monitored several times in the hospital for my ME/CFS symptoms and I always show bradycardia at night (as low as 32 once...usually in 40s- 50s') . Unfortunately, since I wasn't being monitored for sleep apnea at the time, the
  3. @Pistol, Thanks for responding. I don't know what my bp is at night but when I have flare ups during the day, it will be very low . Also I've never had high blood pressure, but often do have bradycardia. During flare ups I often have POTS (neurologist diagnosed) and my pulse increases more than 30 bpm but even then, its rarely gets into the 90s because it starts so low. I'm especially bradycardic an night so it doesn't seem we have the same thing going on.
  4. Ever since I became ill with dysautonomia (ME/CFS?) in 2012, I cannot sleep lying flat or I'll awaken panicked at sometime during the night feeling a great need to sit up and breath deep for a large intake of air. I feel my heart is racing although I don't know if it really is. A sleep study showed I have only mild OSA (AHI 11) and the percent time below 90% SpO2 is .2% . Minimum SpO2 : 87.3%. I've researched and found that OSA can make a person need to sleep upright but I think that's to avoid the heartburn pain, not so much b/c of lack of Oxygen (but maybe I'm mistaken) Regardless, my numb
  5. Hi @DizzyGirls. Thanks for that info. Sorry to hear things are still challenging at your end. Your daughters are so fortunate to have a persistent and knowledgeable mamma. Kudos to you! Things here haven't changed. I continue to often wake with occipital headaches and lots of pressure in the skull. My Physiotherapist almost always finds my C-spine is out of alignment when I see him on pain days and he blames hypermobility which he says then messes with the cerebral fluid flow causing the ME/CFS symptoms. Can't find someone who specifically does the Perrin technique in my area so went to an ost
  6. Thanks for you reply CarolS. You offer so much valuable information! I"m not doing so well lately- lots of back pain from sleeping upright allows me only a few hours of sleep. Lying flat relieves the pain somewhat but then the head pressure and pain starts there! blah blah blah... I planned to read the pharmacy post (thanks for including that link) but scrolling is rough on me. I've posted for assistance on there. I will get back to you with an update when I have some info you might find useful/interesting that may pertain to your daughter. Please don't worry about her relapsing... many
  7. @CarolS Thanks for you reply. I'm glad your daughter is back to school, having lots of energy to do 'normal' things! It's wonderful when that can be experienced again. I was in 'remission' for a few years, having only a few occasional days in a row where I felt symptoms but they always went away when I rested and then I was able live life normally again without the terrible PEM and cognitive issues always accompanied with headaches/pressure. For whatever reason, I'm back in a flare up and thats why I'm looking into the Diamox. I contacted a doctor I've seen once if he'd let me trial
  8. @CarolS, after being absent from Dinet for a long time, I'm back on searching for Diamox information due to head pressure/pain stemming from what I presume is increased cranial pressure caused by humidity, stress, certain neck movements.... Thanks so much for detailing your daughters history. I will look into the Perrin technique although likely there is nobody in my city doing that. My symptoms are/were very similar to your daughters although my issues might be related to my hypermobility. Like your daughter, after years (3-4?) of never getting any communicable illnesses like colds or flus,
  9. I was told it only lowers blood pressure if taken over 40mg a day. I take 10mg twice a day. So taking 20mg /day (10mg 2x) of propanolol lowers your blood pressure despite it normally needs to be >40mg/day to lower it. I wonder what I should request my doctor to let me trial it at? Does the propanolol help with any other dysautonomia symptoms.ie brain fog, increase energy level ?
  10. Sheri Lynn, I'm fortunate in that my Spanx does not roll down. The one I use is "Assets, Red Hot Label". Maybe you have a different style or perhaps it's just that our body types differ
  11. Lewis, do you take propanolol to increase your low blood pressure? You said that it helps stabilize your bp but I'm confused as that is usually prescribed for hypERtension.
  12. I also have low blood pressure and at times can be in the high 70's/high 30's. Midodrine caused a rare reaction in me...bradycardia. Heart rate was 37 and lasted for 8 hrs. I tried it once more a few months later with similar results so it's not a drug for me. As well as the usual self help measures, things I do that sometimes make a difference is take a Sudafed when my bp is low. Abdominal binders did nothing for me (nor did the florinef with salt pills) but ...the high waisted one piece thigh Spanx made a big difference! Droxidopa cannot be prescribed in Canada so that's not a possibility fo
  13. Healthyme...do you feel better bc it raises your blood pressure? How much do you take daily?
  14. Hi, I'm still trying to find a way to increase my blood pressure without needing to wear compression clothing, which only offers a limited boost anyway. Unfortunately, after having experiencing a few months of NO subluxations, my elbows and shoulders are once again popping out of position which I blame entirely on my weak ligaments becoming an issue again from pulling up the tight Spanx girdle. I've had off and on success with caffeine pills so possibly my good days were just a co-incidence. Florinef seemed to cause me headaches and MIdodrine is dangerous for me to take (it caused my pulse to
  15. Can any of you who've experienced Zoloft to be helpful, please tell me your doseage? My reason for taking is for dysautonomia, exercise intolerance (severe PEM), and blood pressure and pulse swings. Not taking for depression/anxiety. My GP has me at lowest dose ( 25 mg ) but I'm cutting it in half for 3 wks to be sure I don't get negative side effects. So far, so good (6 days). Thanks!
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