Does anyone suffer from sleep apnea? Could this be part of all the symptoms of POTS?
I use a bi-pap machine to sleep , and even with it ,. I have been getting some apneas . I wonder if they are central sleep apneas. I don't get them very often, but it is very scary when it happens.
I am very motivated to reply but have to go out of town in 15 minutes! I too have been through the CPAP process, wondered if a bi-level would be better but found a new specialist who said I did not need a CPAP because I do not have enough OSA events (only 4). It has been suggested to me earlier in this forum that I have very similar to dysauto symptoms. A sleep study psychologist says she thinks I have medical events in past not diagnosed! My slow, shallow breathing is what desaturates me. Also have PLMS - another symptom of CNS. Have only had one episode of arrythmia - after returning to bed after bathroom visit. SCARY. Taken to emergency. I now know how to get my breathing going intentionally in lieu of relying on the ANS when I stand up, get out of the car, etc. and feel dizzy. Other symptoms such as NO THIRST. What other symptoms do you have? People in this forum, although going through very difficult times, will respond to you soon. Will get back to you next week. Quebec has a public holiday Monday - Victoria day for the Brits. vetiver2
I have POTS and now my cardiologist is suggesting sleep apnea as the reason for my severe fatigue. I know I stop breathing several times a night, and have all the symptoms. I haven't had sleep study yet but did pulse ox overnight and my oxygen levels did drop all night. (actually it dropped just laying down). But now I'm trying to figure out if the POTS is causing the sleep apnea or could it be the sleep apnea caused the POTS?? so confused.
I guess you should have a sleep study done , and take care of your apnea. The dr is right ,if its revere enough it could cause a lot of fatigue among other things. Do you know if you have chronic fatigue syndrome? This could also be part of the fatigue. I have CFS, POTS, sleep apnea,and I believe they are all related.
I am also very confused with all these weird symptoms , and trying to analize what came first , the chicken or the egg?
(Diagnosed w/POTS in 2004) I got tested for sleep apnea due to daily morning headaches at the time I pursued seeing if that was a problem, and I did not test positive because there were not enough episodes of apnea to qualify for that diagnosis. However, the analyst of my test informed me of her amazement that with my longest period of not breathing, which sounded like an awfully long time to me (though less than a minute), it was as if a throttle was stuck in the open position as far as my oxygen level, because even after all that time, the oxygen level registered at 96 percent!
I'm surprised they diagnosed you with CFS on top of sleep apnea; sleep apnea is one of the diagnoses of exclusion listed for CFS. Which is to say, sleep apnea is one of the diagnoses that are supposed to be ruled out in cases of chronic fatigue (the symptom) before CFS (the syndrome) is diagnosed. I suppose that doesn't apply in cases where the sleep apnea is being treated and the chronic fatigue still persists?
This is another one of those areas where I think diagnostics are not consistent from physician to physician or hospital to hospital. My sister has sleep apnea and hypothyroid but her daytime fatigue is diagnosed as "ideopathic hypersomnia" rather than CFS. Then again, she "failed" the MSLT portion of the sleep study but not in the manner consistent with narcolepsy. (I can explain that better if anyone is interested, as I am the sibling who showed up with narcolepsy on the MSLT.) Did they have you do the MSLT as well, or just the overnight polysomnograph?
As for POTS and sleep apnea, I don't know that there is a higher incidence of sleep apnea in particular in POTS, but I have seen it stated that there is a high correlation of "sleep disorders" (in general) with POTS. This includes sleep phase disorders, restless leg, insomnia, sleep apnea, etc. (Narcolepsy and narcolepsy w/cataplexy do not have a significant correlation with POTS, according to the dysautonomia specialists with whom I have spoken.) I always take this with a grain of salt, though, because many sleep disorders are likely under-diagnosed in the general populace and POTS patients are much more likely to be tested for ... well, everything ... than otherwise relatively healthy people. So there may be selection bias at play there; POTSies may not have more sleep disorders than other people but may just be more likely to get them diagnosed because we're so well "doctored."
Thank you for answering back. I was diagnosed with chronic fatigue by Dr Klimas ( a very well known CFDS DR) she did have me take a sleep test where they diagnosed me with MILD sleep apnea and have been using the bi- pap machine for several years, but it did not help with the fatigue, there are other tests that she had me do, like the activation of the natural killer cells, among others. that proves that I have CFDS.
I was just trying to figure out what came first, the chicken or the egg?
I know that 80% of people with CFDS develop POTS, or is it all the way around, ?
The more I learn about POTS the more I tend to beleive that I have had it ( in a milder form) since I was little. I remember passing out severral times, and not liking to be out in the sun, or exercise much.
I am trying to make sense of all these conditions.
In his book _The Fainting Phenomenon: Understanding Why People Faint and What to Do About It_, Dr. Blair Grubb (one of the nation's top experts on syncope/POTS/orthostatic intolerance) says "research has shown that some (but not all) people with CFS also meet the criteria for POTS. It has been suggested that POTS may be an underlying cause of the symptoms of CFS in these individuals" (p.58).
It seems that Dr. Grubb is saying that POTS is the chicken which came along first and laid the egg that is your CFS, if I'm reading that correctly.
I also want to apologize, as when I re-read what I said above, I realized it could have been interpreted as a challenge to the veracity of your diagnoses of both CFS and sleep apnea, which isn't what I intended. I was merely "thinking out loud" about the oddity of how these diagnoses get layered on top of each other in different ways, and I don't think I expressed myself very clearly. I should have gone back and edited my comment once I answered my own question, realizing that the diagnoses are not mutually exclusive. It's a bad habit I have: letting myself type as I think. So yes, I'm sorry if that came off wrong. I really didn't mean to be insulting.
I'm guessing the missing piece in your puzzle is what's missing for so many POTS patients: what caused the POTS in the first place? If, as you said, the POTS got off to a sort of start early in your life, that seems consistent with the idea that the POTS comes first, and that causes the CF. (I don't know where the sleep apnea comes in, but maybe it's either secondary to the unknown cause of the POTS or secondary to the POTS somehow.) You're right that it does seem very tangled. POTS is still not well understood. The NE transporter research was a great discovery, but seems to only apply to a small fraction of POTS patients. I wonder when breakthroughs will come about for the rest of POTS patients.
Thank you for your comment. You seem to know a lot about all this POTS business, which I m trying to understand, and thanks to you and others in this forrum , I am learning some every day. Thank you again for taking your time to answer all my questions,(Which are a lot)
No problem. I've got nothing fancy up my sleeves ... just been sick with dysauto myself for several years now and am up to my ears in medical journal articles and medical text books. I try to read everything I can get my hands on in the hopes of using the knowledge that I glean to help myself and other patients understand more about our illnesses and get the most out of our healthcare. I'm fortunate to have a solid background in the hard sciences (thanks Johns Hopkins and Ohio State Universities!!) and I think translating some of the medical literature into layman's terms is how I can best be "productive" now that I'm disabled by this illness; I can't think of a better way to spend what time and energy dysautonomia does leave to me than here helping out to the best of my ability.
I know I've found talking to other patients to be absolutely indispensable myself; I honestly don't know if I'd have the completely right diagnosis or the best possible treatment right now if it weren't for information I learned from other patients online. So by all means, keep those questions coming!!
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