Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

[Diagnosis] Have I missed anything for testing or treatment options?
#1
Question 
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.  Huhsign

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.  Huh 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.  Dont-know

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.
Post Reply Post Reply
#2
RE: Have I missed anything for testing or treatment options?
Very similar.

I started with a referral for PSG in 2020 following generic tiredness and fatigue complaints to my regular doctor. Result was a mild apnea diagnosis with overall AHI of 5 or 6 and REM AHI of about 25. Events were clustered in and exclusive to REM sleep. Was told to try CPAP if I wanted, or just deal with it if I didn't. Very helpful. Report states that there were quite a few arousals, but glosses over it.

Like you, I usually awaken briefly several times per night. Not as frequently as you describe, but anywhere from 3-5 wakeups for me is very typical.

In 2022 I tried to take some steps to treat it with a MAD from my dentist because he noticed evidence of bruxism (twice PSG confirmed, for what it's worth). I thought I was going to kill two birds with one stone here, but jaw misalignment issues and weird heart rhythms caused me to stop. I passed my stress test and nobody has found anything on EKG, so the heart palpitations aren't anything I'm worried about, but it's strange that they appeared when I used the MAD and mostly went away after.

Once I ditched the MAD, I found this forum and got myself a CPAP and went to work. Things went... OK, but I didn't feel too much of a difference and struggled with mouth leaks and aerophagia. Evidence of spontaneous arousals shows in my OSCAR charts along with some potential REM abnormalities (persistently shortened onset and high time fraction). Went looking for an ENT who cross-specializes in sleep medicine and got told all my questions should wait till my nose got fixed, with a septum moderately deviated to the left and with a bone spur to the right, turbinate hypertrophy, and adenoid tissue blocking 50-70% of my nasopharynx. Doc says he found the problem and could take care of it.

Good, great, surgery was totally worth it, but I'm still not feeling rested. I think you'll understand when I say it's hard to care about sleep hygiene when I can get 8+ hours and wake up feeling like I shouldn't have bothered, or stay up till 2:30 and not feel meaningfully different the next day.

Follow-up sleep study was at home even though I requested PSG for a more direct comparison to the first one. Was told for insurance purposes we'll do the home one first and follow up again with the proper one. Sounds like a waste of time to me, but I got the PSG last week and the results are in:

- AHI of 3 on the home study. Still some clusters of events in places consistent with REM sleep, but without EEG can't be confirmed. Definitely appears milder than the original PSG, but I suspected there were hypopnea lurking in the shadows (scored via arousal rather than desaturation) that the PSG would pick up on and it would end up comparable.

- PSG came back with zero breathing events. Apnea 0.0, Hypopnea 0.0, RERA 0.0, zip, zilch, nada. Quite a few awakenings and arousals though, along with the exquisitely helpful diagnosis "No evidence of sleep disordered breathing, periodic limb disorder, nocturnal seizure activity, or other apparent triggers for patient's brain arousals. Clinical correlation is advised." This is essentially the sleep doc shrugging his shoulders and moving on.

So yeah, sounds like we're paddling the same canoe right about now. Please let me know if you find something that helps and I promise to do the same for you.
Look, I'm an engineer, not a doctor! Please don't take my opinion as a substitute for medical advice.
Post Reply Post Reply
#3
RE: Have I missed anything for testing or treatment options?
If you are using a CPAP machine please download and install OSCAR, put an SD card in your CPAP machine, and post some charts. The instructions for doing so are in my signature and our wiki. If you need help, let us know.
Post Reply Post Reply
#4
RE: Have I missed anything for testing or treatment options?
ac123;
You asked for ideas, This is outside of the box .. But I think worth considering ..
Could this be stress related ??  Sometimes work and life problems build up and 
We don't realize it is happening .. Everybody deals with it differently and have 
different reactions to stress .. It might be something to look into ??

Some people find meditation or yoga helpful others talk to a counseler, clergy, or
psychologist ..

Best of Luck 
sauerkraut
Post Reply Post Reply
#5
RE: Have I missed anything for testing or treatment options?
(05-16-2024, 04:31 PM)BoxcarPete Wrote: Very similar.

Once I ditched the MAD, I found this forum and got myself a CPAP and went to work. Things went... OK, but I didn't feel too much of a difference and struggled with mouth leaks and aerophagia. Evidence of spontaneous arousals shows in my OSCAR charts along with some potential REM abnormalities (persistently shortened onset and high time fraction). 

PSG came back with zero breathing events. Apnea 0.0, Hypopnea 0.0, RERA 0.0, zip, zilch, nada. Quite a few awakenings and arousals though, along with the exquisitely helpful diagnosis "No evidence of sleep disordered breathing, periodic limb disorder, nocturnal seizure activity, or other apparent triggers for patient's brain arousals. Clinical correlation is advised." This is essentially the sleep doc shrugging his shoulders and moving on.

So yeah, sounds like we're paddling the same canoe right about now. Please let me know if you find something that helps and I promise to do the same for you.

@BoxcarPete - thanks for the post. Although I don't wish misery on anyone, sometimes it's easier to deal with something when you know you aren't the only one. My lab studies weren't quite "0.0" but they weren't far off. Since they're supposedly more accurate than the home studies I'm struggling with the diagnosis but willing to try the treatment (I'm not ready to commit to a lifetime of it unless/until I'm convinced it's the right thing and actually helps me, but with solid evidence I can get there).  

I added bold in the quote above because I'm curious how you are able to determine correlation with sleep stage or arousals from the OSCAR data? My understanding is the machine has no idea what sleep stage you're in or if you are awake or not. Is there some other way you measure this? Although I have a fitbit I've always assumed the sleep stage data from it is garbage (I actually wore it on the nights of my sleep studies and it is in fact very different - the 02/24 study where I slept about 3.5 hours, fitbit thinks I slept 6) and I assume there's no way to overlay it into OSCAR anyway.  

My other thought is positional apnea. I'll post some charts later here, but my events appear to be highly clustered (again, I'm new, so I'm not sure how reliable my data is yet). But I think clustered could be either positional or sleep stage related (or maybe over-reads when I change positions). Keep in mind I remember waking up and changing positions many, many times at night and absent something that measures when I change positions I cannot imagine I'm going to be able to figure that out myself.
Post Reply Post Reply
#6
RE: Have I missed anything for testing or treatment options?
(05-17-2024, 08:36 AM)sauerkraut Wrote: ac123;
You asked for ideas, This is outside of the box .. But I think worth considering ..
Could this be stress related ??  Sometimes work and life problems build up and 
We don't realize it is happening .. Everybody deals with it differently and have 
different reactions to stress .. It might be something to look into ??

Some people find meditation or yoga helpful others talk to a counseler, clergy, or
psychologist ..

Best of Luck 
sauerkraut

@sauerkraut - I really appreciate the suggestion. Honestly, I don't think that's out of the box at all. In fact, it's one of the first things my PCP thought of (after doing some basic bloodwork).  Do I live a stress free life? No, but I don't think anyone does, but most people aren't half zombies most days from such fragmented sleep and feeling sleepy most of the day.  Regardless, I've tried the whole gambit of things - CBT (therapy), SSRIs and SNRIs (note I was not on these for any of the sleep studies, they can mess up results), increasing exercise, mindfulness, adjusting and confronting things in my life that cause me anxiety, etc.  In aggregate (except the medication which didn't seem to do much at all for me) these things seem to have been helpful and although it's not clear I had a clinical level anxiety problem to begin with (it is incredibly subjective - providers basically said to me they open treatment to anyone who wants it), I'd say worth it overall. Still, during this time my perception of sleep continued to get worse, not better. The only anxiety I typically feel around sleep is the anxiety in my dreams themselves (when I have them, I don't always).
Post Reply Post Reply
#7
RE: Have I missed anything for testing or treatment options?
ac123;
You were willing to look into it .. That is the key to finding help for a problem ..

May I make a suggestion ??  The site has a finite amount of memory and the 
reply with quote is kind of discouraged unless really necessary ..  Thanks ..

Best of Luck 
sauerkraut
Post Reply Post Reply
#8
RE: Have I missed anything for testing or treatment options?
(05-17-2024, 07:47 AM)PeaceLoveAndPizza Wrote: If you are using a CPAP machine please download and install OSCAR, put an SD card in your CPAP machine, and post some charts. The instructions for doing so are in my signature and our wiki. If you need help, let us know.

Hi @PeaceLoveAndPizza. I hope I've done this correctly.  

05/13 - The first night I did not have an SD card in the machine because I incorrectly assumed it came with one (oops!). It had an AHI of 1.6, with CA 0.8 and OA and H each at 0.4, but that's really all I know, since there's no detailed data. I fixed that for the second and subsequent nights. 

05/14 you'll see a cluster of CAs that makes up most of the events for the night, they follow two OAs and one H. 

   


05/15 Yikes a lot of CAs between midnight and 1am.  I did have to get out of bed for a few minutes (my younger son fell out of bed). First time I saw RERAs as well. 

   

05/16 Still a lot of CAs, but there are quite a lot more OAs than the previous nights. 

   

I'm not going to stress over every night, but it would be nice to know if I'm way off and thus missing out on either (a) effective therapy more quickly or (b) more quickly getting to the conclusion that this isn't the correct thing for me. Keep in mind my original post where the sleep studies were far from definitive - I'm concerned the machine might be (a) over-reading some events when I change positions and such and/or (b) causing some of the CA events.

I'm still in the insurance compliance period which means both DME and insurance company are watching (which is kinda creepy). I'm honestly not sure what would happen if I change a "clinical" setting (they showed me how to adjust the humidifier and turn on and off ramp and whatnot).  They told me during the fitting appointment that changing pressure requires an updated Rx from the Dr and they adjust the pressure remotely in response to the new Rx. I know how to do it, has anyone else gotten this type of feedback.
Post Reply Post Reply
#9
RE: Have I missed anything for testing or treatment options?
only here to say that my story is almost exactly the same as yours. although i had a viral illness in late 2018 which seems to have kicked it all off. still there's nothing the doctors can do about that. more recently i developed apneas, or at least flow limitations, and using a CPAP has helped a little bit. but i still usually wake up every morning feeling like i didn't sleep, or i have a headache that lasts all day. the doctors (at one of the biggest health organizations in the bay area) don't seem to be able to do much for me except insist that i use the CPAP.

for me it is clear that the CPAP enhances CAs. i sleep with an iphone running SomnoPose and i can see that every time i change positions, i have some CAs as evidenced by the continuous o2 sat monitor i'm wearing. when using the CPAP these CAs really feed back on themselves. lowering the EPR seems to have helped a little bit with this but supposedly higher EPRs are good to treat flow limitations, so i'm kind of stuck. the doctors did say not to worry about any AHI < 5. on a typical night my CA AHI will be something like 3 and the OA AHI will be something like 1. and to be honest, the machine is misinterpreting CAs as OAs as the OAs usually occur during a run of CAs. and that's too bad because it's un-neccesarily increasing the pressure.
Post Reply Post Reply
#10
RE: Have I missed anything for testing or treatment options?
@joeblough - Thanks for sharing (and I am not using the quote system per recommendation). I hope you find some relief. I had not considered an illness being the initial trigger - I can't think of anything specific. I've had plenty of sinus infections but those have mostly stopped since I had the nasal surgery and allergy shots consistently. I've has the flu, COVID, etc. like anyone, but nothing that seems obviously connected to the progression of sleepiness.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
Sad Airsense 10 stops treatment in middle of the night timamin 14 2,862 5 hours ago
Last Post: Jonno12
  ac123 Treatment Thoughts/Help ac123 12 587 8 hours ago
Last Post: ac123
  DavidAM - Treatment DavidAM 45 1,427 Today, 07:27 AM
Last Post: DavidAM
  [Treatment] Gamestar32 ASV Treatment Thread gamestar32 31 788 Yesterday, 06:42 AM
Last Post: SarcasticDave94
  [Treatment] Help with treatment etc csl1 28 1,073 07-10-2024, 07:10 PM
Last Post: Dormeo
  Treatment Emergent CA's poll jojo314519 1 115 07-09-2024, 11:32 PM
Last Post: barney999
  [Treatment] drowsyboy - Treatment advice drowsyboy 18 719 07-09-2024, 08:07 AM
Last Post: insomeapnea


New Posts   Today's Posts


About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.