Symptoms of hypersomnia + low AHI

[mhoffmann]

Hi there!

I try to keep it brief: I got diagnosed with OSA five months ago although my measured AHI was pretty low (4.2 - 6.1, not including any central apnea).
The reason for that was my report of sleep inertia, concentration problems and prolonged sleep times up to 40h which more or less would also fit the diagnosis of hypersomnia. 

So I've been using my APAP device for a few months now in order to treat this but so far hasn't been successful. My doctor (actually a somnologist) wants to continue CPAP therapy, I personally don't mind because the mask doesn't bother me too much. However as I stated that the device doesn't make anything better other than my daily morning headache, he just wrote a letter of referral to a sleep clinic where I have an appointment in February next year, but this is only the preliminary talk so god knows when the treatment / diagnosis starts here.

Since I didn't want to sit idly by, I started to keep a look at my CPAP data with OSCAR and found several things which trouble me and these findings are the actual reason why I registered here.

First of all, let's start with the report:

   

I know that the compliance is actually pretty low which is mostly due to me trying to getting up, removing the mask, falling asleep again due to severe sleep inertia. 
The overall AHI is in an area which is afaik considered good, the leak rate is pretty bad but due to the lack of obstructive apneas I wonder if it matters much anyway. 

As you can see, I marked the clear airway index row since I think that this one is actually suspicious in my case. "Thankfully", tonight was one of these hypersomnia-plaqued nights and I got two records on my device starting at 12:00:00 yesterday and ending on 11:59 today. So I almost spent 24 hours in bed. Unfortunately, I got up at ~ 18 o'clock yesterday and removed the mask, but did put it on again on midnight today - that's why we got the fragmented data here:

   

For the second fragment:

   

So this is where I am at currently, my doctor didn't seem to care about these phases since the overall AHI is still below threshold, however, for me this does seem like a misinterpretation. I don't think that the phase from 01:31 - 01:48 with 11 apneas lasting 10 - 19 Sekunden (Ø 15,27 sec, Σ 168 sec) can be considered normal under any circumstance nor do I think that my problems are OSA related. My somnologist however insists that my circadian dysrhythmia and insomnia is the main cause of my problems...

Has anyone here made similar experiences? If so, how did you treat it? 

My next plans are:

• Acquiring the oximeter for my CPAP device in order to determine whether there is a lack of oxygen present or not
  
• Undergo whatever they'll do in the clinic
  
• Disabling EPR on my CPAP device (I've read that this should help)
  
• Getting another somnologist
  
• Hopefully not losing all hope
  

Thanks to everyone who spent the time reading this!

[mhoffmann]

After involuntarily skipping the 4th of January completely, I feel completely like sh*t. I can hardly focus on anything nor can I walk properly or think clearly.
Unfortunately, it was as usual: I slept, wanted to get up, removed the mask, fell asleep again. Therefore I only have fragments:





Doesn't look like anything obvious to me, next appointment with my somnologist is in the middle of March which feels ages away in relation to my psychological stress.
Any guesses/ideas from you folks? :/

[Ratchick]

You really need to get those leaks under control, as most of them are above the line where they could start to interfere with therapy. Were there any central events on your sleep study or was it all obstructive? After five months, if your centrals only started after you started CPAP, they're less likely to fade at this stage. You have some significant flow limits, and usually EPR would be the first suggestion for that... unfortunately that can ALSO worsen central events. The only way to find out would be to try it and see. If you turn it on and your centrals shoot up over the next few days, then it's probably doing more harm than good.

But if those centrals are consistent, then CPAP may not be the best thing for you. You might need to push for ASV. Do you have a copy of your sleep study from diagnosis? If so, can you post (redacted) data so we can see what was recorded there?

It may be that you have treatment-emergent central apneas, it may be the flow limits are causing you problems, but the things that help obstructive events and flow limits in CPAP tend to worsen Centrals and vice versa. That said, I would suggest maybe keeping the CPAP on when you wake up until you're sure you're fully awake. I feel for you - I could easily sleep for a whole day without waking before I started therapy, and while I don't sleep quite as much now, the real change for me has also been the headaches and migraines.

[mhoffmann]

You really need to get those leaks under control, as most of them are above the line where they could start to interfere with therapy.  Were there any central events on your sleep study or was it all obstructive? After five months, if your centrals only started after you started CPAP, they're less likely to fade at this stage. You have some significant flow limits, and usually EPR would be the first suggestion for that... unfortunately that can ALSO worsen central events. The only way to find out would be to try it and see. If you turn it on and your centrals shoot up over the next few days, then it's probably doing more harm than good.

But if those centrals are consistent, then CPAP may not be the best thing for you. You might need to push for ASV.  Do you have a copy of your sleep study from diagnosis? If so, can you post (redacted) data so we can see what was recorded there?

It may be that you have treatment-emergent central apneas, it may be the flow limits are causing you problems, but the things that help obstructive events and flow limits in CPAP tend to worsen Centrals and vice versa. That said, I would suggest maybe keeping the CPAP on when you wake up until you're sure you're fully awake. I feel for you - I could easily sleep for a whole day without waking before I started therapy, and while I don't sleep quite as much now, the real change for me has also been the headaches and migraines.

That's what I'm currently working on, although it's giving me a hard time.  It was mostly obstructive. 
Yeah, I've been using EPR on full time with 2 till last week. Oscar doesn't show a significant change in the AHI though. 
If we exclude the last night, the AHI with EPR off (4 records) is 1.32 - the AHI with EPR on was 1.76 (141 records). 

To be honest, I don't even know if my problems are related to the apneas / hypopneas at all.
Yes, I have four sleep studies here. Two at the sleep lab and two PSGs at home. I currently only have the PSG of my ENT (which was done at home) here digitally - the sleep studies from the sleep lab were only sent via fax and therefore are useless, at least regarding the graphs since you cannot read them at all. 

Sleep Study - ENT - 2020-08-21
2 MB / File:
Page 1
Page 2
Page 3

For the sleep studies from the sleep lab, here is some of the data:

Sleep Study - Sleep Lab - 2021-07-12 - without Mask

AHI:
AHI: 10,6/h
AHI REM: no REM sleep reached
AHI NREM: 0.00/h

Sleep phases:
12,46 % Awake
5,85 % S1
87,51 % S2
6,71 % S3
0.00 % REM
WASO: 27 min

Apneas:
Obstructive Apneas: 0.00/h
Obstructive Hypopneas: 10.3/h
Central Apneas: 0.3/h
Central Hypopneas: 0.0/h
Mixed Apneas: 0.0/h

Sleep Study - Sleep Lab - 2021-07-15 - with Mask & CPAP

AHI:
AHI: 3,3/h
AHI REM: 5,4/h
AHI NREM: 8/h

Sleep phases:
15,61 % Awake
5,32 % S1
35,39 % S2
24,03 % S3
35,39 % REM
WASO: 49,50 min

Apneas:
Obstructive Apneas: 0.2/h
Obstructive Hypopneas: 0.5/h
Central Apneas: 2.6/h
Central  Hypopneas: 0.0/h
Mixed Apneas: 0.0/h

I'll try to only removed my mask when I literally stood up, hopefully I can achieve this! The only thing CPAP therapy helped me with so far is my daily headache when I got up - but this usually faded away after a few minutes anyway and therefore this isn't really a success for me. :/

[Ratchick]

Yeah - It's a lot easier to stick to when it makes a big difference. I'm glad that it did because otherwise I probably would have been tempted to stop therapy too.

If stopping the EPR hasn't really helped reduce the few centrals you're having, then it might be worth putting it back on again, try it at three and see if that helps with the flow limits at all without pushing the centrals up. And let's have a look at the daily chart from OSCAR tomorrow and see what it shows.

[mhoffmann]

Yeah - It's a lot easier to stick to when it makes a big difference. I'm glad that it did because otherwise I probably would have been tempted to stop therapy too.

If stopping the EPR hasn't really helped reduce the few centrals you're having, then it might be worth putting it back on again, try it at three and see if that helps with the flow limits at all without pushing the centrals up. And let's have a look at the daily chart from OSCAR tomorrow and see what it shows.

I guess that literally applies to everything - good thing though that the mask doesn't bother me that much.

Maybe it's worth mentioning that I've always been suffering from circadian dysrhythmia and never had a proper sleep cycle anyway - this started in my early childhood and still persists to this day (I'm currently 26). The full story can be read in that reddit post of mine. 

But back to the topic here - so I've changed the EPR to 3 yesterday. That's what I got:




At least I manged to keep the mask on, although the leak still looks bad. But to judge whether the CAs are a problem or not, I guess an oximeter is more than required.

[Dormeo]

I don't really see your CAs as a problem. You have very few, and they may simply reflect brief arousals. CAs are notorious for being inconsistent from one night to another, so I also don't think the fact that your CA index bounces around matters.

But the hypersomnia and insomnia sound awful. I suspect they don't have anything to do with your breathing during sleep. I read your reddit posts, and I warmly support your effort to get help that doesn't default to "Well, you're depressed." I also wonder whether the relief you got from Clomipramine and Venlafaxine might serve as a diagnostic or treatment CLUE for the right physician.

You're probably already aware, but there is a lot of information (including information about new-ish drug treatments) here:

https://www.hypersomniafoundation.org/

[mhoffmann]

I don't really see your CAs as a problem.  You have very few, and they may simply reflect brief arousals.  CAs are notorious for being inconsistent from one night to another, so I also don't think the fact that your CA index bounces around matters.

But the hypersomnia and insomnia sound awful.  I suspect they don't have anything to do with your breathing during sleep.  I read your reddit posts, and I warmly support your effort to get help that doesn't default to "Well, you're depressed."  I also wonder whether the relief you got from Clomipramine and Venlafaxine might serve as a diagnostic or treatment CLUE for the right physician.  

You're probably already aware, but there is a lot of information (including information about new-ish drug treatments) here:

https://www.hypersomniafoundation.org/

Good to hear another opinion about this! 

It is more than awful. If I didn't have a job in IT, I would have been unemployed long ago. But even with a more than understanding boss, it's not an easy situation. I still have to work 35 -40 / hours a week and in combination with long and non-restful sleep, my usual week only consists of work & sleep since I can hardly maintain a normal life under these circumstances, which is depressing. I guess many here have the same issues caused by their OSA in some way though. 

But regarding depression and sleep problems: I don't know whether that's only a German phenomenon or a global issue but I really have the feeling that if you say that you're depressed, some doctors tend to blame literally everything on your psyche. The worst experience I had here was with an ENT: I sought help since I always had the feeling that I can hardly breathe through the nose knowing that I'm allergic to dust and my sleep quality worsened a lot. Second time I was there I stated that I take Mirtazapine due to MDD - and yeah from there on everything was blamed on my psyche. Went to two other ENTs in 2019 (shared office) and they both independently diagnosed a septum deviation and enlarged turbinated bones - the latter was fixed in 2020, the septum was fixed in November 2021. Since then, I can breath a lot better through the nose which also leaves me with the question whether this really fixed the obstructive part or not. I could add more stories, but I guess this one is at least related to the topic...


What I frankly don't understand: Depression is always seen as a cause for sleeping problems, but the other way around is often ignored - and that's regardless of the issue here (Insomnia, Hypersomnia, OSA, ...)

Thanks a lot for the link!

Sadly, Germany is pretty bad here. Hypersomnia seems to be so rare that literally none of my doctors have experience with the treatment of it, especially not when antidepressants are present too. Hopefully that changes in the hospital in February. But even then, some drugs are simply not available in Germany - the US is lot faster with the FDA than the European counterpart (EMA) is. And even when it's on the market in the EU: That doesn't have to mean that it's available in Germany and that the insurance covers it.

Sorry for digressing a bit here.

[Dormeo]

I think it's an issue here too. Back in the 1990s, my primary care physician couldn't figure out why I was deeply fatigued; she did a lot of tests and finally referred me to a psychotherapist and -- thank goodness -- a rheumatologist. The rheumatologist immediately diagnosed an autoimmune disease in the connective tissue disease family; the therapist was nice but I only saw her once! She said it was natural to be depressed when you are deeply fatigued and don't know why. I'm sure the same is true for hypersomnia/insomnia.

[Ratchick]

Same here in the UK - mention you're depressed (especially if you're female) and EVERYTHING gets blamed on it (or anxiety). I think it's a problem all over, to be honest. I suffer with endometriosis - a really common disorder (i.e. affecting 10% of women and girls) - and I spent FOURTEEN years being told I was too young, I was just attention-seeking, I was depressed, I needed to see a shrink, I was just fat (despite my BMI being around 20 and at my adult height), etc Three gyns told me this bullcrap. Dozens of GPs. You know how I got my diagnosis? By the 4th gyn telling me that I didn't have endo and he would do the laparoscopy (the keyhole abdominal surgery that is the only way to definitively diagnosed the disorder) just to prove me wrong.

Turns out I wasn't imagining it. My insides look like a frag grenade went off inside there. Organ damage, nerve damage, severe scarring and adhesions and bleeding, just... a mess. A dozen surgeries later and its now too risky to do more for only a few months benefit at most. So I have to live in constant pain, unable to have kids, lost my job, ended my marriage... So yeah. Not to hijack your thread but it's... a thing.

Just before I lost my job, I was in much the same position as you - in IT, spending 1/4 time working from home because I couldn't even sit upright because of the pain and lack of sleep. Trying to make sure I squeezed in those 40 hours so I wouldn't get my pay docked even further... It was so hard (at that point, I was sleeping maybe 5 hours total, but waking up every hour or two because of the pain, and this was before the dysautonomia and central apnea kicked my ass).