Have I missed anything for testing or treatment options?
Hello all,
I hope all are well. Please excuse my extended post. I know I’m 100% not asking for diagnosis, but I’m stumped and I’ve seen a couple sleep medicine providers who also seem to be a bit stumped as well. My objective is to help figure out what else to talk with my provider about, or to find a new one if needed.
I want to try to figure out if there’s actually an apnea issue here, the provider honestly isn’t sure, and thus I figured I’d ask this community to see if anyone has had similar experiences that might have found something useful. At the moment we are treating it as mild OSA with CPAP and I’m only a few days in – tolerating it fine but not sure if it’s the right thing or doing anything useful for me (I know it’s early).
It’s somewhat obvious to me at this point that if I want to explore something else, I’m going to have to find out what myself and bring it up with my provider. There really isn’t a plan other than “try it and see if it works” which makes me a bit uncomfortable but is all I have at the moment.
Issue:
- First and foremost, for many years, I’ve been very tired / sleepy. It doesn’t really matter if I get a lot of sleep or very little sleep, it’s not predictably different. In fact, when I try to sleep longer than 6-7 hours, the nighttime wakeups (next item) get a lot more frequent. My most recent Epworth was 13/24. It’s been worse recently (past 9 months or so) but been going on since at least 2017, possibly longer.
- I don’t randomly fall asleep when doing something active, but if I’m somewhere sleep inducing (like when my kids want me to sit with them for a while after reading to them at bedtime or lie down for a few minutes to “rest my eyes”) I will often accidentally fall asleep.
- I also wake up many, many times per night but typically only for a few seconds. I typically remember waking up at least 10-20 times per night, opening my eyes for a few seconds, and then falling back asleep. Since I remember that many, it’s probably more often and I’m not remembering many of them. When I wake up I typically don’t feel out of breath, but I frequently feel the need to reposition myself (change from side to back or side to other side, etc.).
- When I remember dreaming, it’s almost always disruptive and causes me to wake up (endlessly being chased, getting some sort of terrible news, struggling to do something simple like use a phone, that sort of thing). I’d call some of them nightmares, others as just stressful. This is not every time I wake up and not every night, but often enough to note.
Process:
- I first went to a sleep medicine provider in 2018, who did home and then lab PSG which found nothing helpful at the time. The only thing possibly out of range is RDI of 6 on the home study, but only just barely out of range.
2018 home study (sorry for poor image quality, it’s all I have) is the top half of the image. The lab study (immediately below) also showed basically nothing, aide from slightly low REM and N3, and some light snoring.
Interestingly the lab study did not see the mildly elevated RDI that the home study saw.
In other words, “nothing to see here” and I was told to focus on sleep hygiene, fitness, etc. which I did and lost some weight, but it didn’t make much difference.
I eventually went to an ENT and found out that my nasal passages were in terrible shape (lifetime of allergies, enlarged turbinates, deviated septum, nasal valve prolapse). We figured this could be the cause or at least contribute. I got surgery and started allergy shots, which I’ve been on since. I had some improvement (I feel I can breathe through my nose much better, and my allergies rarely bother me anymore) and assumed this was right. Help for me overall, but I never felt “good” with my sleep.
Fast forward to 2023. Slowly over time, sleep got worse than it was in 2018. Since it had been quite a while, I had to start over (I provided the old results, but the doctor – now a new person as the old one has moved and theoretically I could still see but it would be a trek – but said they wouldn’t help that much).
I’ve now gone through three sleep studies – the home study (12/23) and two lab studies (02/24 and 03/24). I had to repeat the lab study because I only slept 3.5 hours and they also wanted an MSLT which couldn’t be done because I didn’t sleep well.
12/23 home study (I’m including data instead of summary as the summary just says “along the lines of primary soring, consider lab study”.)
Note the “REM pRDI” and “REM pAHI 3%” which are slightly above range (pRDI more so), even though the overall numbers are considerably lower. This is what ultimately the doctor used to justify ordering CPAP, he actually wasn’t sure it would work but the insurance company approved it.
I’ll spare you the details of the 02/24 lab study where I didn’t sleep well, the equipment I think was put on wrong and dug into my nose (I had significant blisters the next day) and basically they said it’s not helpful. The only thing it had of any note was for the limited time I did sleep, AHI and RDI of 2.0 and 130 spontaneous arousals (37 per hour while sleeping).
Fast forward to the redo on 03/24, which was successfully completed:
Note the lab found AHI and RDI of 1.0 each.
Way, way less than the home study, although I had limited REM sleep. But, like the 02/24 lab study, a lot of awakenings/arousals. I actually thought I slept pretty well this time.
The 83% desaturation appears to be an error for when I got up to go to the bathroom it read funny for a few seconds when they reconnected me, I spent almost all the night in the high 90’s.
The MSLT was run the next day. For reasons I still do not understand (I have asked, my doctor has asked, we have received no reply at all and there is nothing in the medical record), the lab scored the MSLT twice. I fell asleep all five naps, but the times were different – the first score was an average of 7.3 minutes, the second was an average of 8.7 minutes. No REM during naps. This likely excludes narcolepsy but is unclear on the possibility of idiopathic hypersomnia because the first scoring is in that range (>8 minutes) but the second is outside that range. IH also requires ruling out or treating everything else like OSA first.
So, this is where I stand.
I have two home studies (one old, one recent) that show slightly elevated RDI, and three lab tests (one possibly invalid) that show totally normal AHI and RDI. All show lots of arousals and awakenings. MSLT is unclear on IH but likely rules out narcolepsy.
The doctor was genuinely unsure and basically told me that we should treat for apnea even though he’s not totally sure I have it.
Has anyone had anything even remotely similar to this? I’m working through starting up CPAP (you’ll see a post or two from me on some basic questions) I don’t have a lot of data yet, just a couple of nights. I’m concerned about “clear airway” events (I had 55 last night), but I want to give it a couple of weeks to adjust. Although my DME provider provides a “sleep coach” I’ve asked them questions that they’re really not capable of answering – it appears kind of like MyAir that their only objective is to get you to keep using it rather than help figure out if it’s effective or form useful questions. I’m having tons of air go into my stomach and thus struggling, but I can keep with it. I’m hoping that after a couple of weeks to a month that I have better information and side effects wane. But I’m not sure if or how CPAP data can help confirm the original diagnosis in the first place. My follow-up with the doctor is early July, but I can try to request an earlier follow-up if needed.
I would add that my primary care doctor has been fantastic throughout this and sent me to several specialists to screen for and rule out a variety of common and less common conditions that could cause similar symptoms that are not sleep medicine related. My thyroid TSH is a bit low, but every follow-up test is normal (endocrinologist said there’s no way isolated low TSH can cause this). Cardiology (stress test and echo) normal, extensive bloodwork all otherwise normal. I also went back to the ENT who says my nasal passages and throat both look very good now and are in his opinion "low risk" for OSA.
FYI, I did see another sleep medicine provider as a second opinion after the request for CPAP but before the DME provided it. The second provider was equally unsure but said it seemed reasonable to proceed as the first doctor discussed and to come back to him if I feel like I get stuck. So, at the very least I have options. I live somewhere with a reasonably large number of providers in the region so I can go to others if needed.
I know this is super long, my apologies. I’m not going to lie, I’m pretty desperate, and I figure if anyone has any thoughts or suggestions, I’m all in on them. Any additional questions for primary care or sleep medicine, or another specialist to see? Anything out there that providers might not have thought of but would be worth investigating? Again, I’m not going to start or stop anything on an internet forum alone (exception is fine tuning the CPAP once I have some more data to work with), but absolutely would investigate thoroughly and bring any thoughts to a follow-up visit. I’m a scientist by training – I have plenty of ability to find, interpret and communicate information and have no problem bringing research studies or data or whatever to my providers to discuss them and how they might or might not apply to me.
If you've made it through all of this, I feel like I really owe you! Thanks again so much in advance for any suggestions. Happy to try to pull other records or provide other info, etc.
I hope all are well. Please excuse my extended post. I know I’m 100% not asking for diagnosis, but I’m stumped and I’ve seen a couple sleep medicine providers who also seem to be a bit stumped as well. My objective is to help figure out what else to talk with my provider about, or to find a new one if needed.
I want to try to figure out if there’s actually an apnea issue here, the provider honestly isn’t sure, and thus I figured I’d ask this community to see if anyone has had similar experiences that might have found something useful. At the moment we are treating it as mild OSA with CPAP and I’m only a few days in – tolerating it fine but not sure if it’s the right thing or doing anything useful for me (I know it’s early).
It’s somewhat obvious to me at this point that if I want to explore something else, I’m going to have to find out what myself and bring it up with my provider. There really isn’t a plan other than “try it and see if it works” which makes me a bit uncomfortable but is all I have at the moment.
Issue:
- First and foremost, for many years, I’ve been very tired / sleepy. It doesn’t really matter if I get a lot of sleep or very little sleep, it’s not predictably different. In fact, when I try to sleep longer than 6-7 hours, the nighttime wakeups (next item) get a lot more frequent. My most recent Epworth was 13/24. It’s been worse recently (past 9 months or so) but been going on since at least 2017, possibly longer.
- I don’t randomly fall asleep when doing something active, but if I’m somewhere sleep inducing (like when my kids want me to sit with them for a while after reading to them at bedtime or lie down for a few minutes to “rest my eyes”) I will often accidentally fall asleep.
- I also wake up many, many times per night but typically only for a few seconds. I typically remember waking up at least 10-20 times per night, opening my eyes for a few seconds, and then falling back asleep. Since I remember that many, it’s probably more often and I’m not remembering many of them. When I wake up I typically don’t feel out of breath, but I frequently feel the need to reposition myself (change from side to back or side to other side, etc.).
- When I remember dreaming, it’s almost always disruptive and causes me to wake up (endlessly being chased, getting some sort of terrible news, struggling to do something simple like use a phone, that sort of thing). I’d call some of them nightmares, others as just stressful. This is not every time I wake up and not every night, but often enough to note.
Process:
- I first went to a sleep medicine provider in 2018, who did home and then lab PSG which found nothing helpful at the time. The only thing possibly out of range is RDI of 6 on the home study, but only just barely out of range.
2018 home study (sorry for poor image quality, it’s all I have) is the top half of the image. The lab study (immediately below) also showed basically nothing, aide from slightly low REM and N3, and some light snoring.
Interestingly the lab study did not see the mildly elevated RDI that the home study saw.
In other words, “nothing to see here” and I was told to focus on sleep hygiene, fitness, etc. which I did and lost some weight, but it didn’t make much difference.
I eventually went to an ENT and found out that my nasal passages were in terrible shape (lifetime of allergies, enlarged turbinates, deviated septum, nasal valve prolapse). We figured this could be the cause or at least contribute. I got surgery and started allergy shots, which I’ve been on since. I had some improvement (I feel I can breathe through my nose much better, and my allergies rarely bother me anymore) and assumed this was right. Help for me overall, but I never felt “good” with my sleep.
Fast forward to 2023. Slowly over time, sleep got worse than it was in 2018. Since it had been quite a while, I had to start over (I provided the old results, but the doctor – now a new person as the old one has moved and theoretically I could still see but it would be a trek – but said they wouldn’t help that much).
I’ve now gone through three sleep studies – the home study (12/23) and two lab studies (02/24 and 03/24). I had to repeat the lab study because I only slept 3.5 hours and they also wanted an MSLT which couldn’t be done because I didn’t sleep well.
12/23 home study (I’m including data instead of summary as the summary just says “along the lines of primary soring, consider lab study”.)
Note the “REM pRDI” and “REM pAHI 3%” which are slightly above range (pRDI more so), even though the overall numbers are considerably lower. This is what ultimately the doctor used to justify ordering CPAP, he actually wasn’t sure it would work but the insurance company approved it.
I’ll spare you the details of the 02/24 lab study where I didn’t sleep well, the equipment I think was put on wrong and dug into my nose (I had significant blisters the next day) and basically they said it’s not helpful. The only thing it had of any note was for the limited time I did sleep, AHI and RDI of 2.0 and 130 spontaneous arousals (37 per hour while sleeping).
Fast forward to the redo on 03/24, which was successfully completed:
Note the lab found AHI and RDI of 1.0 each.
Way, way less than the home study, although I had limited REM sleep. But, like the 02/24 lab study, a lot of awakenings/arousals. I actually thought I slept pretty well this time. The 83% desaturation appears to be an error for when I got up to go to the bathroom it read funny for a few seconds when they reconnected me, I spent almost all the night in the high 90’s.
The MSLT was run the next day. For reasons I still do not understand (I have asked, my doctor has asked, we have received no reply at all and there is nothing in the medical record), the lab scored the MSLT twice. I fell asleep all five naps, but the times were different – the first score was an average of 7.3 minutes, the second was an average of 8.7 minutes. No REM during naps. This likely excludes narcolepsy but is unclear on the possibility of idiopathic hypersomnia because the first scoring is in that range (>8 minutes) but the second is outside that range. IH also requires ruling out or treating everything else like OSA first.
So, this is where I stand.
I have two home studies (one old, one recent) that show slightly elevated RDI, and three lab tests (one possibly invalid) that show totally normal AHI and RDI. All show lots of arousals and awakenings. MSLT is unclear on IH but likely rules out narcolepsy.
The doctor was genuinely unsure and basically told me that we should treat for apnea even though he’s not totally sure I have it.
Has anyone had anything even remotely similar to this? I’m working through starting up CPAP (you’ll see a post or two from me on some basic questions) I don’t have a lot of data yet, just a couple of nights. I’m concerned about “clear airway” events (I had 55 last night), but I want to give it a couple of weeks to adjust. Although my DME provider provides a “sleep coach” I’ve asked them questions that they’re really not capable of answering – it appears kind of like MyAir that their only objective is to get you to keep using it rather than help figure out if it’s effective or form useful questions. I’m having tons of air go into my stomach and thus struggling, but I can keep with it. I’m hoping that after a couple of weeks to a month that I have better information and side effects wane. But I’m not sure if or how CPAP data can help confirm the original diagnosis in the first place. My follow-up with the doctor is early July, but I can try to request an earlier follow-up if needed.
I would add that my primary care doctor has been fantastic throughout this and sent me to several specialists to screen for and rule out a variety of common and less common conditions that could cause similar symptoms that are not sleep medicine related. My thyroid TSH is a bit low, but every follow-up test is normal (endocrinologist said there’s no way isolated low TSH can cause this). Cardiology (stress test and echo) normal, extensive bloodwork all otherwise normal. I also went back to the ENT who says my nasal passages and throat both look very good now and are in his opinion "low risk" for OSA.
FYI, I did see another sleep medicine provider as a second opinion after the request for CPAP but before the DME provided it. The second provider was equally unsure but said it seemed reasonable to proceed as the first doctor discussed and to come back to him if I feel like I get stuck. So, at the very least I have options. I live somewhere with a reasonably large number of providers in the region so I can go to others if needed.
I know this is super long, my apologies. I’m not going to lie, I’m pretty desperate, and I figure if anyone has any thoughts or suggestions, I’m all in on them. Any additional questions for primary care or sleep medicine, or another specialist to see? Anything out there that providers might not have thought of but would be worth investigating? Again, I’m not going to start or stop anything on an internet forum alone (exception is fine tuning the CPAP once I have some more data to work with), but absolutely would investigate thoroughly and bring any thoughts to a follow-up visit. I’m a scientist by training – I have plenty of ability to find, interpret and communicate information and have no problem bringing research studies or data or whatever to my providers to discuss them and how they might or might not apply to me.
If you've made it through all of this, I feel like I really owe you! Thanks again so much in advance for any suggestions. Happy to try to pull other records or provide other info, etc.
