Six months in: Still feel awful

[drfaust]

So, I've been using CPAP for 6 months now and my sleep is just as bad as ever.

I was diagnosed in January with an RDI of 11.7, and my titration study indicated I needed a pressure of 8. Since then I've been 100% compliant and average 7 hours/night with my mask, and I think I have missed exactly one night. My average AHI reported by my machine is around .9, and my doctor couldn't be more pleased. He consistently tells me I'm "cured", even though I consistently tell him I feel horrible. He's tried raising my pressure, lowering my pressure, switching to APAP, and enabling the EPR. But now we're back to BiPAP at 8 with an EPR of 3. My ESS is still around 16, I have constant arousals throughout the night, I wake up most mornings with a pounding headache, and usually have to take the mask off and sleep another 2-4 hours (in addition to the 7-8 I sleep with the mask) in order to be functional enough to leave the house and go to work.

A curious thing is that in my original study, my actual AHI was only around 1.5. The rest of the events were RERAs, meaning that my breathing didn't actually stop -- it was just sufficiently difficult to breathe that I briefly aroused from sleep. This leads to sleep fragmentation, and subsequent fatigue.

I realize that the Airsense can try to categorize some sorts of events as RERAs, but without recording the actual EEG, it can't know, and based on sleepyhead data, it (almost) never records RERAs for me.

But in addition to *respiratory* related arousals, I also get CPAP-related arousals. I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals. I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved). Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

I purchased an extra nasal mask (Resmed N20) to try to avoid the nasal irritation from the pillows out of pocket (insurance had already covered the pillows), but I can't tolerate using it. I've worked with the DME to try adjusting it multiple different ways, but the nose always pulls the mask so that there is a leak in the top and it blows into my eyes (even though the leak is small enough that Resmed doesn't even register it -- I feel it, and it wakes me up just enough to fragment my sleep). Also, the airflow tickles my nose just enough that I have to wake up every little bit to scratch my nose -- but it's blocked by the mask, so I have to lift it up and away from my face and reach under.

All of this adds up to feeling absolutely horrible. All of the time pretty much.

My sleep doctor only cares about the AHI number reported by Resmed, and like I said above, says "you're cured! This is working perfectly for you!" But he doesn't take into account the arousals, be they respiratory or caused by the treatment itself. He expresses sympathy that I don't feel good, but says there's nothing else he can do except for adjusting the CPAP settings, which he's done with no success.

I also suffer from nightmares most nights and wake up shouting and screaming (though I do not have REM behavior disorder -- I just shout with nightmares). The sleep doctor says they're not apnea-related, but other than that has no advice (I tried taking prazosin which helps some people with nightmares, but it didn't help, and only made me more fatigued) except to work with a sleep psychologist, which I did.

With the sleep psychologist I worked on sleep hygiene, meditation, relaxation, eliminating screens within 3 hours of bedtime, etc. I follow all of the rules, but I still have these micro-arousals every few minutes. I sleep with a Garmin running watch, which uses the accelerometer to track "deep" versus "light" sleep based on movements, and I spend most of every night in "light" sleep, meaning i'm moving around a lot. It also usually records a few periods of being "awake" per night because of moving around a lot to re-position things.

I know this is a long post, but I'm at my wit's end, and miserable after years of sleep deprivation. I've tried to be thorough about everything we've tried, but there are probably some more things I have forgotten to list here.

If anyone has advice, please let me know. I see my doc again in 2 weeks and would love to try some new strategies before I see him. I desperately want this to work, and have been doing everything I can to make CPAP work for me, but I just don't know what else to do anymore.

Thanks.

[NadiaK]

I am sorry to read that you are having such a difficult time of it. I am no expert in this area unfortunately. I too tried the P10 mask and could not use it. It caused sores inside my nose and gave me sinus headaches. I am a mouth breather and therefore had to use a chin strap with it. I hated the chin strap. Even with it on as tight as I could tolerate, I was still able to open my mouth which made it useless. Have you tried using a full face mask? I have come to the conclusion that it is the only type of mask I can tolerate. For me it is however a constant battle with pressure marks left from the mask that do not go away. Good luck.

[drfaust]

I am sorry to read that you are having such a difficult time of it. I am no expert in this area unfortunately. I too tried the P10 mask and could not use it. It caused sores inside my nose and gave me sinus headaches. I am a mouth breather and therefore had to use a chin strap with it. I hated the chin strap. Even with it on as tight as I could tolerate, I was still able to open my mouth which made it useless. Have you tried using a full face mask? I have come to the conclusion that it is the only type of mask I can tolerate. For me it is however a constant battle with pressure marks left from the mask that do not go away. Good luck.

Thanks -- I haven't tried a full face mask, but given my inability to tolerate the nasal mask due to not being able to reach my nose to scratch it, I'm guessing the FFM might run into similar problems. But I suppose I could give it a try -- CPAP.com has return insurance on both the Airfit and Airtouch F20 models (not sure what the difference is, though), so I could always send it back.

I was counting on a few months to get used to this... I was frustrated after 3 months (and posted here), but now we're at six, and I'm kind of giving up hope now. Bleh!

[ChicagoGranny]

I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals. I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved). Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

This might be the first set of problems you need to solve. The discomfort you are experiencing could wreck anyone's sleep. I have never been comfortable with a chinstrap, so I use FFMs. Would you consider one? I use the Innomed Hybrid. The nose can be easily scratched while wearing this mask. It also doesn't block eyesight.

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the nose pulls the mask

Assuming you meant the hose pulls the mask, it is important to use good hose management. Some tips:

- Make sure to use good hose management - the hose should not pull on the mask. Notice how your hose is positioned between machine and mask. It should be positioned to minimize any pull on the mask. Hose management is an individual practice. How it is done depends on the mask, the position of the machine, your sleeping position and other factors specific to the individual.

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I also suffer from nightmares most nights and wake up shouting and screaming (though I do not have REM behavior disorder -- I just shout with nightmares).

I suspect you are experiencing REM Rebound due to prolonged sleep deprivation - https://en.wikipedia.org/wiki/REM_rebound

Your dreams can be bad and vivid when experiencing REM Rebound. The discomfort of your CPAP system could be causing you to awaken during these dreams. If you start sleeping well, over time the bad dreams will greatly lessen or cease nearly altogether.

[drfaust]

Thanks for your response. I'll reply in-line below

I have to wear a chin strap to keep my mouth closed, otherwise air leaks out of my mouth and arouses me -- but the chinstrap gets tangled in my hair, catches on the pillow, slides around (despite being as tight as is comfortable), and causes frequent arousals. I get a lot of air swallowing and belching during the night which arouses me (again, we've tried different pressures, APAP, etc, and this never resolved). Also, the pillows are uncomfortable and irritate my nose, which wakes me up at night. I use lanolin, and have experimented with everything from the lightest coat to slathering up, and my nose skin still rubs raw (it's constantly red and inflamed).

This might be the first set of problems you need to solve. The discomfort you are experiencing could wreck anyone's sleep. I have never been comfortable with a chinstrap, so I use FFMs. Would you consider one? I use the Innomed Hybrid. The nose can be easily scratched while wearing this mask. It also doesn't block eyesight.

I'll certainly consider one, but based on my inability to tolerate the nasal mask due to having to constantly lift it off my face (probably > 15x/night) to scratch my nose, I'm not sure a FFM would fare much better. The hybrid masks still have the problem of having nasal pillows. I apparently have extremely sensitive skin (goes with being a redhead) and my nostrils are constantly inflamed, scabby, and sore. By about 5am most days I'm so uncomfortable that I wake up and have to take the mask off.

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the nose pulls the mask

Assuming you meant the hose pulls the mask, it is important to use good hose management. Some tips:

Make sure to use good hose management - the hose should not pull on the mask. Notice how your hose is positioned between machine and mask. It should be positioned to minimize any pull on the mask. Hose management is an individual practice. How it is done depends on the mask, the position of the machine, your sleeping position and other factors specific to the individual.

Right. The hose pulls the mask.

I'm not sure how else to manage my hose. I toss and turn a lot, so I basically have to keep my nose "hugged" on my body, so that it goes with me when I roll over. Other specific suggestions would be helpful.

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I also suffer from nightmares most nights and wake up shouting and screaming (though I do not have REM behavior disorder -- I just shout with nightmares).

I suspect you are experiencing REM Rebound due to prolonged sleep deprivation - https://en.wikipedia.org/wiki/REM_rebound

Your dreams can be bad and vivid when experiencing REM Rebound. The discomfort of your CPAP system could be causing you to awaken during these dreams. If you start sleeping well, over time the bad dreams will greatly lessen or cease nearly altogether.

I've seen REM rebound talked about a lot on here before, so I've actually done a search of the medical literature on this (I'm a scientist by training, though not a medical doctor, but I can read scientific literature and statistical models). I can't find any reports of REM rebound lasting more than a night or two. And that Wikipedia article does not have any citations for months-long REM rebound, despite claiming that it exists. Most studies of REM rebound focus either on laboratory-induced REM sleep disruption and study 1-3 (with 1 being the most common) subsequent nights, and most of the rebound is done the first night. Studies of apnea patients starting CPAP mostly focus only on the first night of CPAP and show an increase in REM density compared to the baseline night before CPAP was started, but the long term trajectory of this rebound isn't tracked. I found one study that did a 3-month follow-up and a 2-year follow-up and REM density had fully returned to baseline by the 3 month follow-up (the first night of CPAP showed a slight increase in REM density compared to the pre-CPAP baseline). But note that this is always in relation to pre-CPAP levels, so you get a transient increase in REM, but then you just go back to your normal level very quickly.

Also, that study showed that violent/anxious dreams disappeared once starting CPAP.

I think it's also important to mention that the nightmares aren't new since starting CPAP, and are of a totally different beast than apnea-related nightmares. I've had nearly nightly nightmares for my entire adult life (my partner will verify -- I've had screaming/shouting/kicking nightmares for the 11 years we've been together). There's no clear cause for the nightmares and the content varies nightly (one counselor suggested PTSD from childhood bullying I experienced, but no clear diagnosis). I've tried treating with prazosin, as I mentioned above, but that just fatigued me and didn't help. I take a small dose of clonazepam before bed and that lessens the severity of the nightmares dramatically. But I seriously doubt the nightmares are related to REM rebound, both because they existed prior to (and have not changed since) starting CPAP, and the fact that REM rebound is not a protracted phenomenon.

[Julie]

Get a 5" long skinny (like a ramen noodle) crochet hook from a craft store or Walmart and it can slip under the mask to scratch.

Look up 'Hose Buddy' and consider ordering one to tame the hose.

[drfaust]

Get a 5" long skinny (like a ramen noodle) crochet hook from a craft store or Walmart and it can slip under the mask to scratch.

Hmm. But this requires waking up to retrieve the crochet hook and scratch. Doing this dozens of times per night doesn't seem like a good way to get good, continuous, consolidated sleep. Thanks for making the suggestion, though.

Look up 'Hose Buddy' and consider ordering one to tame the hose.

This looks like it would be really useful! I had never heard of these. Thanks! Definitely looks like it will help with hose management issues to stop leaks with the nose mask, but still not sure how I would deal with the irritation from the air and not being able to reach underneath.

[Julie]

If the itch doesn't wake you on its own, you won't feel the need of the scratcher... if you do wake up, well... you're awake anyhow, so grabbing the hook shouldn't be a big deal.

[kteague]

Yes, getting you as comfortable as possible will substantially reduce your wakings. Maybe someone else knows the name of the mask, but I've seen one that is a cushion below the nose rather than pillows in the nose. For inside the nose irritation, sometimes going to a smaller size pillows helps if the anatomy of the nose is such that the tips of the pillow opening are pressed against sensitive tissue. I'm guessing someone will come along and discuss the possibility UARS - did your report make any mention of it? Also, did your sleep study make any mention of limb movements? Your mention of so much moveing around makes me ask that. Any chance RLS is a part of your picture? It certainly sounds like you have been beyond diligent in your troubleshooting. Are you on any meds that could be contributing to your symptoms? Hopefully you'll be able to get some pointers that will help in your pursuit of at least decent sleep.

[drfaust]

If the itch doesn't wake you on its own, you won't feel the need of the scratcher... if you do wake up, well... you're awake anyhow, so grabbing the hook shouldn't be a big deal.

The itch is caused by the mask/airflow/moisture, which also precludes me scratching it. I'm looking for ways to stop waking up so that I can get decent sleep. Remember, it's the number of micro-arousals (not apnea events, even) that got me the CPAP in the first place.

[ChicagoGranny]

The itch is caused by the mask/airflow/moisture

Where exactly is the itching?

As far as the moisture, do you need it? I don't use the humidifier. If you want to try it, turn it down a bit every night. If this causes a bigger problem, turn it back up. If you get to zero humidity and things are working better ...

I basically have to keep my nose "hugged" on my body, so that it goes with me when I roll over.

That's pretty much what I do; works well for me, but I am not as active a sleeper as you.

[drfaust]

The itch is caused by the mask/airflow/moisture

Where exactly is the itching?

As far as the moisture, do you need it? I don't use the humidifier. If you want to try it, turn it down a bit every night. If this causes a bigger problem, turn it back up. If you get to zero humidity and things are working better ...

On my nose, when I use my nasal mask. The airflow irritates the skin. And I've tried leaving the tank dry a few times, but it always leaves me with a bloody nose without the humidity. I'm pretty delicate.

I basically have to keep my nose "hugged" on my body, so that it goes with me when I roll over.

That's pretty much what I do; works well for me, but I am not as active a sleeper as you.

Yeah -- I think I got the idea from you in a previous message you wrote somewhere on this board. You're pretty active on here and give good advice.

[drfaust]

Yes, getting you as comfortable as possible will substantially reduce your wakings. Maybe someone else knows the name of the mask, but I've seen one that is a cushion below the nose rather than pillows in the nose. For inside the nose irritation, sometimes going to a smaller size pillows helps if the anatomy of the nose is such that the tips of the pillow opening are pressed against sensitive tissue. I'm guessing someone will come along and discuss the possibility UARS - did your report make any mention of it? Also, did your sleep study make any mention of limb movements? Your mention of so much moveing around makes me ask that. Any chance RLS is a part of your picture? It certainly sounds like you have been beyond diligent in your troubleshooting. Are you on any meds that could be contributing to your symptoms? Hopefully you'll be able to get some pointers that will help in your pursuit of at least decent sleep.

Aaa! I wrote a really long reply to you, but it seems to have gotten lost/deleted on here somehow. So sorry if this shows up twice.

As for pillow sizes, I've tried smalls, mediums, and larges (the DME people say that medium should be my preferred size). They all cause irritation -- my nostrils are generally raw and inflamed and scabby. :-/

And yes -- I've talked about UARS with my doc. He said that that is likely what I have, since my events were mostly RERAs and not apneas or hypopneas. I asked him if I could still be having RERA events that the machine misses and which don't go into the AHI he sees. He said he is completely convinced that I am not having those and that my condition is treated from a breathing perspective. But as a test run he increased my pressure, which only caused more bloating and belching and air leaking out of my mouth. So he switched it to APAP, but the pressure changes woke me up, so we're back to my original CPAP pressure with the EPR enabled.

And I was negative for RLS, PLMD, and REM behavior disorder. But I only got about 3.5 hours each in both my diagnosis and titration studies (fell asleep just fine, but then woke up and couldn't get back to sleep). But I just toss and turn a lot.

And yes -- there are meds in the mix. I take venlafaxine (effexor). Over the last several months I have reduced my dosage to the minimum dose, to help rule out the possibility that it was causing sleep problems. Effexor is known to suppress REM sleep, as do most anti-depressants and anti-anxiety drugs (SSRIs, tricyclics, etc). I asked the sleep doctor if this was a problem, and he said no -- that there are millions of people going around out there who get zero REM sleep because of medications, and they do just fine. This seemed weird to me because of the mountains of data showing that REM sleep is important for learning and memory consolidation, but he was adamant that even if it does suppress my REM sleep, that that shouldn't be a problem. But I'm on the lowest adult dosage (75mg, taken in the morning), and discontinuing it is not an option. I'm a life-long anxiety sufferer. I do all of the non-pharmacological things there are to do (meditation, yoga, jogging, counseling, have a great support network, etc), but without some medication I could not be a productive member of society.

I also take 1mg of clonazepam before bed. This stops my nighttime panic attacks and has *greatly* suppressed my nightmares. My sleep was even worse before we tried adding this, so I'm going to stick with it until we get the rest sorted out and get my sleep problems under control.

I've tried some other sleep promoting meds (trazodone, amitriptyline, cyclobenzaprine) and they either didn't work (trazodone) or caused hangover and brain fog (the other two -- though I sleep straight through the night with them).

Sigh. It's a process. I've learned a LOT about sleep since starting this adventure. heh.

[ChicagoGranny]

(meditation, yoga, jogging, counseling, have a great support network, etc).

It sounds like you are probably very conscious of sleep hygiene, but here is a point from my personal experience. I had problems with sleeping with CPAP until I went 100% caffeine free. Not even one early morning cup of coffee. I learned the hard way that some orange sodas have caffeine! I had to watch out for all sources, like chocolate.

After some months, I worked two small squares of chocolate back into my lunch routine. Still, if lunch is later than two p.m., I need to skip the chocolate.

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Do not listen to your breathing or the sound of the machine as you are falling asleep.
- Distract your mind by thinking of a pleasant, relaxing activity that you enjoy. Thinking of sitting under an umbrella on a quiet beach with a warm gentle breeze works for me.
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems

CG

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On my nose, when I use my nasal mask. The airflow irritates the skin.

Which airflow do you mean? When the mask is not leaking, there should be no airflow hitting the skin of the nose.

[Hopeful50]

If you're interested in trying other masks, consider the DreamWear. The hose is at the top of your head, there's nothing to irritate the bridge of the hose or the nostrils, it's easy to reach under to scratch an itch - by far the most non-invasive and comfortable mask I've tried. https://www.cpap.com/productpage/pr-dre ... -pack.html