What’s currently happening:
My main issue: I recently got a recording oximeter and some of my numbers are seemingly extreme! On good nights I mostly stay at 95% or above, great, only a few of those though. Many nights fluctuate between 95% and 99% to 90% and 94% much of the time with several dips under 88% and a few that are under 70%. On the more extreme bad nights that go below 70%. The readings are like 35% and 45 % but I say below 70% because the device may not be accurate below 70%. These extremes are without my auto bipap* that I comply with most of the time but cannot all the time due to allergies.
The severe and longer events average five minutes with dips and spikes in my heart rate. The readings on more severe nights show a heartbeat of 1bpm and 5bpm. I knew my heart raced during an apnea* and/or hypopnea event but was surprised to see that it apparently almost stops too. Can these readings be accurate? Does my heart really almost stop?
Also while awake, I do have events under 88% usually less than five minutes and overall less often and none below 70% while I’m awake (so far).
In addition, I have not had an extremely bad night since I got the oximeter (meaning the readings will probably be much much worse, cuz some nights are really really bad!). I don’t have a lot of the extremely bad nights, luckily, because they affect me much worse than an averagely bad night.
So far these readings do seem to accurately reflect how I feel and I’m not surprised at the readings with the exception of the extremely low heart rate that I was not previously aware.
I’m a 45 year old female, 5’5” and my weight fluctuates around 200
pounds give or take 10, lately fluctuating up. Currently I don’t exercise on a regular basis (other than short to medium bursts of dancing periodically throughout my better days), I don’t smoke, don’t do drugs, seldom drink alcohol, and don’t take any prescriptions.
I am going to buy another brand of a recording oximeter to verify these numbers and then take them to a pulmonologist, but I want opinions/thoughts in the meantime please and thank you for your time! :-)
My other current relevant issues: *I have sleep apnea and started on a cpap years ago, progressed to an auto pap, and now progressed to an auto bipap (no added oxygen). I use it as much as possible but have allergies that prevent me from using it every night all night, but generally have a high compliance rate (I use it most nights).
I do know from previous medical grade oximeter experience my oxygen level can easily go below 88% “before” I even “feel” completely asleep, it starts during twilight sleep. So just dozing off in front of the TV for a few minutes causes me brain and organ damage! It’s really catching up to me too!
My cpap pressures have always been on the high side. I started at 14 and have fluctuated between 12 and 16 for years, until recently. I am now averaging 20.5 to 21.5 most nights breathing down on an average 16. I believe usually those pressures are for extremely large people 400 and 500 pounds.
Generally I can’t stay asleep for more than 4 or 5 hours; I may or may not fall asleep again, but stay in bed for the whole night. Ironically the longer and the deeper I sleep the worse I feel even when I comply/use with my sleep machine.
My blood pressure has been going up and down for much more than a year from normal to a little above normal (i.e. 90 over 130). I can feel the difference (even though it’s minimal). Even during the worst first 5 years it was usually normal. The new bipap pressures have helped my blood pressure but it still gets elevated, just less.
My brain fog (brain damage) that started when my sleep apnea started (19 years ago) is getting much much worse for more than a year now. I don’t even have to be tired to forget simple words anymore. It’s SOOO hard to keep my pronouns straight “him I mean her” “she I mean he” (English is my only spoken language).
A brief medical history (because I could go on&on&on&on):
At age 26 and a high side of a normal weight sustained a back and neck injury; no help from multiple doctors/prescriptions; became lethargic/morbidly obese; developed multiple health problems; debilitating pain/fatigue.
5 years before any significant difference; after physical therapy and alternative therapies for my pain and more than 3 years to diagnose “myself” with sleep apnea, getting a sleep study/CPAP with not much help for my fatigue until my airway operations (mouth, nose, and throat) after 5 years. Then literally an overnight difference on my cpap that I had already used for a year and a half (seriously ONE NIGHT!). I lost a 100
pounds in a year; exercised (previously was impossible, it would make me much worse!) an average of 3 ½ hours a day, 5 days a week. But understand with all this I still had daily fatigue and continued health problems (just less) even though I became a normal weight again (less than at age 26, my pre-pregnancy weight) and exercised and technically didn’t have sleep apnea anymore (but the study showed that I still did better with a CPAP and kept it using it because I definitely felt the difference without it). Unfortunately after that year my nose tissue started growing back and I started gaining weight (overtime even more) and problems again.
So basically it’s been a fight like that for the past 19 years with ups and downs but never getting rid of my fatigue; only getting better or worse. I had a few more nose operations; gained and lost more weight; developed even more health problems; had multiple sleep studies (light, moderate, & severe – usually in correlation with my weight); tried many prescriptions that didn’t help; tried many alternative therapies of which several helped; and been desperately searching for a good quality of life but haven’t found it yet. (Can you help me PLEASE?)
Currently I am obese (medium plus sized, thanks to lap-band, I have never went back to my top weight), have moderate sleep apnea (use auto bi-pap), fibromyalgia (but much of the time I am able to keep the pain under control with alternative therapies), GERD (the only thing that I take medication on a regular basis for; currently otc Omeprazole (like Prilosec) for months, previously Tums for a few years) and osteoarthritis are my main diagnoses.
About my arthritis: I think it started earlier than it would have if all this hadn’t have happened. It started in my late 30’s. It started becoming debilitating and my pinkies started becoming deformed in my early 40’s. Doing an alternative thing, I stopped eating all nightshades (tomatoes, potatoes, hot & sweet peppers) and the pain and much of the deformity (the extreme swelling part) went away. Even though I still don’t eat nightshades the deformity started up again. This time I’m using
Arthritis splints to straighten my pinkies. They seems to be working. Though I haven’t figured out how to reduce the bone spurs yet. If some knows that, please tell me!
Side note: my mother and I had almost identical health problems; the severity of mine started first; she stayed with the doctors and their prescriptions even though they didn’t help her much more then they helped me and even after her kidneys started failing, then her liver, then her heart, then her lungs; she died at 60. :-(