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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, there was no way of knowing if the slow heart recordings related to any non-visible sleep arousals. Since reading your response, I looked at the details of my sleep study and see that particular night my lowest heart rate was 43 and maximum was 58. In the NREM Respiratory Analysis column it states Central Apneas 20 and an index of 18.6. And also says Obstructive Apneas is 1 in the NREM column and a 9 index. I've no idea if that's concerning or not but Central Apnea was not even mentioned at the follow-up., only the mild apnea. There is so much more info given, but not sure what's relavent or not. Too bad the doctor who reviewed everything with me was so dismissive and difficult to discuss anything with.... Do you know much about sleep study analysis? I would love to know why I can't lie down to sleep without needing to catch some air but maybe its nothing to do with apnea . ...although in some ways it does sound like central sleep apnea episodes. Or it can be due to intracranial hypertention giving headaches that only find relief if I sit up (unless it's too late to make the difference...then its time for migraine medication) Do you wear a CPAP for your central apnea? I've wanted to experiment with a CPAP to see if it would allow me to lay down to sleep but regardless of which model CPAP or mask I use, I always swallow air into my belly before even nodding off. I think its likely due to my esophagus remaining open due to loose lower esophageal sphincter.
  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 numbers aren't that bad so I don't understand why I can't lay flat to sleep. I feel like I'm hypoxic but the sleep study shows I'm not. I now wear a custom made OSA dental appliance which may have helped my OSA somewhat but has made no difference to the lying supine issue ( I've tried MANY masks and Cpap machines thinking maybe I've got worse apnea than the study showed but all of them cause air to go into my stomach (likely due to weak lower esophageal sphincter (GERD) ) so am now thinking maybe I should try O2 machine but again, do my numbers warrant it? I now have an adjustable bed which is a God send but unfortunately, my husband and I must now sleep separately b/c he's not interested in the bed going up and down like a yo-yo throughout the night.(if its up too long, my low back hurts). My night symptoms are similar to Congestive Heart Failure but when I'm not in a flare up (POTS/ PEM), I'm quite active so I don't have CHF. Does anyone else have trouble lying flat and if so, what do you about it? And how is it related to the dysautonomia?
  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 osteopath but her gentle manipulation caused my shoulder to dislocate which then pulls on my neck and here we go again...more pain in head/neck pain by evening. Now waiting to get in with a therapist who specializing in cranial sacral massage and I'll insist she work only on my cranium! I haven't order Diamox yet b/c I don't feel comfortable leaving a credit card # with these on-line foreign pharmacies. One in India wants $76.00 to send to Canada (I might only use a few to trial) yet the money isn't the issue, it's the lack of trust of these pharmacies with my card! Not sure what to do about that... I don't think I can find a dr to order an MRI but regardless, I remember Diana Driscoll saying that if you suspect EDS, as is my situation, never to allow one to be done. Yet your daughter gets them done and she's been dx'd with EDS! I'll have to research more how to proceed with these sub--occipital headaches because I'd love to be free of them (or at least be able to rely on quick treatment) by next summer for my daughters wedding. All the best to you and your girls.
  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 people don't . In my case, I'm not sure what the trigger was but possibly golfing because of feeling so well, caused my weak upper limb to be in wonky positions when I"m not even aware of it. My elbows and shoulders are my most hypermobile joints and it affects head pain for sure, but we're just now seeing it may be associated to blocking spinal/lymph fluid in upper spine and brain causing the skull bones to shift (can visibly observe a lumpy head) and then the cascade of symptoms starts. Hard to tell if that's the actual cause because of course, daily mental stress on top of the physical stressors just mentioned, cannot be downplayed. Thanks again.
  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 some Diamox and also asked about getting my CO2 levels checked beforehand....haven't heard the answer on that yet.If he won't prescribe it, I will look for an on-line pharmacy that doesn't require a prescription..do you mind telling me who you went through for the Diamox? Knowing it made your daughter relapse does make me nervous though.... After watching a 80 minute interview showcasing the Perrin technique, I contacted a local osteopath today who said that the cranial lymph drainage techniques that have been popularized are all quite similar and although she is aware of the Perrin method, she said his method is basically what they're already taught in school. It's just that Perrin, (like John Upledger with cranial-sacral therapy), 'call it their own' by making slight changes. Since there is nobody doing 'Perrin' specifically, I'm booked to start my 1st session in a few weeks and the 2nd is a week later. Time will tell...
  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, as my ME/CFS continued to improve, strangely, I started to catch the seasonal colds/flus that were going around. I thought that a fair trade in illnesses but the intracranial pressure never went away when the other symptoms diminished (through decreasing carbs and having regular cranial sacrum therapy- maybe its similar to the Perrin ?). Did/does your daughter have trouble lying flat? Ever since ME/CFS began over 7 yrs ago, I've never been able to lay flat very long without it leading to occipital pain and/or a 'fullness'/pressure in the entire skull. But If I am able to stand up in time, the headache will often go away before the brain fog/cognitive issues & dizziness sets in...I now sleep reclined in a hospital bed which can help avoid morning symptoms. I've read the Driscoll Theory years ago and have always thought IIH is likely the trigger of my issues and would love to try Diamox but don't have a dr. that will prescribe for me. Even if I did find Diamox on line, how will I get my CO2blood levels checked without a dr script? How is your daughter doing now? @DizzyGirls I am very hypermobile with many symptoms of EDS such as those of people with ME/CFS so your daughters' health journey interests me. Do they have a diagnosis of EDS? If so, Diana Driscoll strongly suggests that lumbar punctures are dangerous for those with EDS (although I've no idea if that's true). How do you go about having one ordered for your girls?
  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 for me.
  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 fall dangerously low) I've looked into licorice before but was confused with the glychyrrizin vs. de-glychyrrizin (DGL) product choice re: increasing blood pressure. After reading messages that have been posted since I've last been on this thread, I am still confused! It seems that depending on which problem you want addressed, digestion problems or an increase in blood pressure, one product works better than the other. I googled licorice root - "Licorice comes from the root of a plant called Glycyrrhiza glabra. It is frequently used to flavour commercial food products such as tea, candy, and cough drops. The Glycrrhiza plant is also used to treat ailments of the upper respiratory tract as well as stomach inflammations." So It looks like Licorice root is the same as Glycyrrhiza but it seems to be used as a digestive aid and is not mentioned to help boost blood pressure! Yet Alex had said that Kim should be looking for licorice, not glyczrrhiza. Can somebody tell me please if the product I just purchased should help with my hypotension....I'm not interested in the digestive aid properties but if that's also part of it, no problem...Bonus! The people working at my health store don't know of a product to boost blood pressure. The product I bought is called ' LICORICE', (organic licorice root and stolon) made by Orange Naturals and its dispensed thru a dropper (tincture). Directions say for adults to take 3ml/3 x day on an empty stomach but these directions are for stomach inflammation! If this should help increase blood pressure, would the same amount be taken as was advised for stomach inflammation? Thanks for your help
  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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