Sleep Apnea

[ken870]

i just had a sleep study done thursday night and have not got back the results so i was wondering if anybody knew if sleep apnea was a symptom of pots and does anyone on this forum have sleep apnea.

[mjan]

What did they tell you to do? And what did they tell you its caused by? Or maybe they dont know.

But I had a sleep study looking for Narcolepsy with cataplexy brought on by autonomic symptoms.

I do have sleep apnea ANd daytime apnea..but not sure why. I do have lesions on the brain on or near

the brainstem.

But they are having another daytime study MSLT..to see if I have narcolepsy with cataplexy

My study is next month.

Keep me posted ok? Good luck

Jan

[mkoven]

I think sleep disturbances are common with us. not sure about apnea. obstructive apnea is common in ehlers-danlos syndrome (and many edsers have pots) because of our floppy throat tissue and the fact that many edsers have high arched palates, causing a narrow airway that is more likely to close. central apnea indicates more of a neurological problem. some people have both. i do think sleep apnea is very underdiagnosed in the general population--it's not just middle aged obese men! what i was told is that sleep apnea will make any other health problem worse, so it should be treated if discovered. i have obstructive apnea ahd have used a cpap for a year. i probably also have "autonomic arousals," where i spontaneously wake up or partially awaken from abrupt changes in hr and bp. less clear what to do about those. but at least i'm no longer suffocating in my sleep. untreated apnea wreaks havoc on otherwise healthy people, sending their ans into a tailspin--as it basically triggers the flight or fight reaction all night long. it's recognized as a cause of HYPERtension among other things.

i'd say, have the sleep study, and go from there, depending on what they find. apnea isn't the only sleep disorder. if you do have apnea, it is definitely worth treating. cpap hasn't cured me of my ills, but it has helped many things--headaches, migraines, general aches, some weird neurological symptoms i was having, nightmares.

[summer]

Interesting explanation about EDS and obstructive sleep apnea. I complained to my doctor about this before and he said I did not look like his typical sleep apnea patient! I have not been diagnosed with EDS, but do have characteristics including a high arched palate. Yes, I do think there is a connection between POTS and sleep apnea.

[mkoven]

the idea that there is a typical apnea patient is very damaging, i think, and prevents many from getting tested. skinny kids can have apnea! there was recently a story on npr about a kid diagnosed with add who was found to have apnea, treated, and the "add" went away. i think this also delayed my getting diagnosed. i had complained MULTIPLE times to multiple doctors about waking up from sleep gasping, and waking up with awful headaches, and waking up 4-5 times a night. these are CLASSIC symptoms. but because i was relatively young and female, no dice.

it was finally my first ans doc who suggested a sleep study. and bingo. i have obstructive sleep apnea. it's considered mild, but my oxygen dropped to 88% and I was stopping breathing between 23-53 seconds at a time.

my other docs are very surprised, but they really just need to change their stereotypes. in my case it's the narrow airway, chronic nasal congestion, end eds. for someone else, it could be a deviated septum, or enlarged tonsils, etc. i think part of the issue is that sleep studies are expensive. but i really believe there should be more routine screening in the population at large. it's really damaging to have untreated apnea. there are some quick and dirty at-home tests that are less good than a night in a sleep lab. one could for example sleep with an oximeter, to see if there are dips in oxygen saturation. or, you could even put a tape recorder next to you, to hear if there are obvious pauses, snoring, gasping, etc. most apnea patients are completely unaware of how bad their apnea is and don't remember all the struggles for air.

[ken870]

Jan you said sleep apnea caused you to have lesions on your brain and brainstem and i was wondering if these lesions caused knots to come up on your head and temples because i have knots on my head and temples that are painful to the touch and i was wondering if anybody else with sleep apnea had painful knots in their head and temples.

[firewatcher]

the idea that there is a typical apnea patient is very damaging, i think, and prevents many from getting tested. skinny kids can have apnea! there was recently a story on npr about a kid diagnosed with add who was found to have apnea, treated, and the "add" went away. i think this also delayed my getting diagnosed. i had complained MULTIPLE times to multiple doctors about waking up from sleep gasping, and waking up with awful headaches, and waking up 4-5 times a night. these are CLASSIC symptoms. but because i was relatively young and female, no dice.

it was finally my first ans doc who suggested a sleep study. and bingo. i have obstructive sleep apnea. it's considered mild, but my oxygen dropped to 88% and I was stopping breathing between 23-53 seconds at a time.

my other docs are very surprised, but they really just need to change their stereotypes. in my case it's the narrow airway, chronic nasal congestion, end eds. for someone else, it could be a deviated septum, or enlarged tonsils, etc. i think part of the issue is that sleep studies are expensive. but i really believe there should be more routine screening in the population at large. it's really damaging to have untreated apnea. there are some quick and dirty at-home tests that are less good than a night in a sleep lab. one could for example sleep with an oximeter, to see if there are dips in oxygen saturation. or, you could even put a tape recorder next to you, to hear if there are obvious pauses, snoring, gasping, etc. most apnea patients are completely unaware of how bad their apnea is and don't remember all the struggles for air.

My seven year old son recently had a tonsillectomy because of apnea. I never knew children were not supposed to snore! He did not have a sleep study, but the ENT did a few things and his prior history was highly suggestive of apnea, so out they came. He is sleeping much better now, it is amazing!

[firewatcher]

Jan you said sleep apnea caused you to have lesions on your brain and brainstem and i was wondering if these lesions caused knots to come up on your head and temples because i have knots on my head and temples that are painful to the touch and i was wondering if anybody else with sleep apnea had painful knots in their head and temples.

Ken, there are two types of apnea: central (brain controlled) and obstructive (palate collapsing, narrow airway, etc.) if you've had a 24 hour holter monitor, it may suggest apnea. If there is a 20+ bpm spike immediately after a period of bradycardia, it is highly suggestive of obstructive apnea. If you have multiple ANS issues though, it could be central and it won't show on the holter. There is a fantastic sleep doc in Atlanta (who is now educated about POTS--thanks to a particularly complicated and annoying patient me,) PM me if you want his name and number.

[morgan617]

My skinny son has it too. central sleep apnea. I'm not sure there's a relationship to pots. I've had two sleep studies that show only very mild apnea but NO stage three or four sleep, which is where the restorative sleep happens, and then they wonder why I complain of daytime fatigue!

I think pots has been shown to be disruptive to sleep but as for specifically in regards to apnea, I just don't know. Hope it turns out ok. morgan