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Everything posted by Charlotte1

  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!
  16. I just started Zolft 5 days ago with hopes of it regulating my autonomic nervous system. I do not have anxiety or depression so I was prescribed a small amount specifiaclly for dysautonomia relief. Starting lowww and going slowww! I'm splitting the 25mg dosage in 1/2 and so far, no negative (or positive) consequences. My reason for trying an SSRI is because although I have POTS (Mestinon has helped that a lot), many of my symptoms have to due with chronic low blood pressure and bradycardia as well as dramatic plummets of vitals at times. The increased occurances of Post prandial hypotension and occasional Orthostatic hypotension are becoming unmanageable. Today when I stood up, my pressure dropped to 72/44 and I immediatley felt faint with huge brain fog. Midodrine is a poor drug choice for me as it lowers my pulse much too low...last week it dropped to 44bpm within 1 hour of taking 5 mg and remained low for 8 hours. There wasn't much O2 reaching my brain, or so it seemed. The headaches with Florinef isn't worth the small increase in blood pressure I get when taking it. @ Gemma, here's hoping that Zoloft works for both of us.
  17. Hi Lheartfrogs, I can't really offer you any advice as I am still searching for answers myself. I can though tell you this - I have always had a low pulse yet doctors always told me that meant I was healthy, eventhough I was often symptomatic. My bradycardia became more of an issue when last year, after onset of POTS, it was discovered during hospitalization for catapleyx-type episodes that my pulse was as low as 33 at night and low 40's during the day. A pacemaker was never really discussed seriously b/c the POTS/dysautonomia situation might have still caused me the horrible symptoms. I do believe that this illness, whatever it's called, is the reason for my vitals being all over the map ie. this morning my blood pressure was 104/59 with pulse of 51. After eating, my blood pressure fell to 85/53 with pulse 74. That post prandial hypotension never occured before becoming ill. Another thing that is worrisome is my sometimes very narrow pulse pressure (7) ie. 88/80 and other times very wide pp (65). ie 103/38. Regardless, often my vitals don't correspond with my horrible symptoms so for me, more than wacky vital stats is going on. I have huge issues with PEm involving neurological deficits. Sometimes it leads to cataplexy, other times cataplexy happens from just doing nothing. Sorry I can't be more helpful to you.
  18. Hi Galatea, I am very much like you. I've never been dx with CFS or ME but do fit the Canadian Consensus Criteria on CFS/ME to a large degree. Like you, I wonder if the symptoms of CFS/ ME is actually just a piece to a larger puzzle. Thankfully, last year an endocrinologist saw that my strange neurological symptoms, in part, resembled POTS/dysautonomia and I was diagnosed 4 months later with POTS, but not without first being put in a neurological ward (OMG-horrible experience) and then was put on a seizure ward for 1 wk. where I was hooked up to monitors 24/7 to rule out seizures. I was put on Mestinon which helped the tachycardia issues and the weakness. I was so relieved! But the muscle weakness returned 2 months later. I still have not found a drug to work for my chronically low blood pressure and bradycardia (when I'm not tachy). Like you, the PEM is my most distressful symptom as it has the tendency to cause severe weakness that resembles cataplexy at times. I also get frequent severe headaches/migraines. I looked at Dianne's website - I definitely have many aspects of the Periodic Paralysis although I've only experienced the night paralysis a few times. I do understand your confusion and concern Galatea. I have never had disabling fatigue as a symptom but finding it disturbing to become so weak, so suddenly. Have you ever had slurring of speech and do your eyes glaze over during the periods of extreme weakness? It's sad when all of us with mysterious illnesses must play doctor. We are often to ill to seek help let alone become our own advocate
  19. A FANTASTIC 2012 scholarly article. Thanks for posting it!
  20. @ kimbellgirl or anyone else that knows what distinguishes a 'good, full sleep study'.- My local sleep clinics' website states: During a full sleep study, the staff will monitor your brain wave activity, leg muscle activity, chin muscle tone, eye muscle movement, heart function, breathing patterns, and blood oxygen saturation. Some optional test may be done such as carbon dioxide levels. All monitoring is done by attaching small metal discs called electrodes onto the surface of the skin. Would this be considered a decent study for someone like me who has dysautonomia (POTS is controlled now but still have many neurological and sleepy issues)? Thanks.
  21. Thanks for clearing that up Alex! @ Imapumpkin - can you tell me the brand name of the licorice root capsules your doctor prescribed for you?
  22. Late to the discussion but wondering, do I need to find a product that has deglycyrrhizinated licorice or non-deglycyrrhizinated licorice? It seems to me Dr. Pocinki made a distinction in one of his videos of which type to get versus the other but I can't remember! My health store has a product - Natural Factors DGL chewable deglycyrrhizinated licorice tablets which is usually sold as a digestive aid. I want something to raise my blood pressure but I have finicky taste buds and prefer capsules if possible. They can order me capsules of the same but want to know what strength I'm looking for. If indeed the DGL is what I should be purchasing, can someone suggest an effective capsulestrength ? btw, really...such a ridiculous word exists???
  23. Ugh.. sorry, ZEO not Zoe. The company says it may start up again in the future.
  24. AshleyPooh - I have the exact opposite comments. People think I'm dead when I sleep! I have had recordings of a pulse in the low 30's when sleeping so its no wonder...I agree that oxygen deprivation is likely related. For me, falling asleep and staying asleep can only be accomplished with drugs. Then like you, I feel like I need another nights sleep upon waking. Yep, lose/lose. I'm not going to for a sleep study until I learn exactly what it is that doctors such as Pocinki list what exactly they want recorded. Then I'll see if my general practitioner will refer me... not likely.
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