Any ideas about getting a better sleep? Update ...

[CoastalSun]

I have been on CPAP for just over a year now and I am STILL not getting a good sleep. But at least I don't wake up every morning with a headache, sore throat, feeling like I was 'hit by a truck' and daylong extreme fatigue. Even my heart palpitations have decreased. I haven't woken up during the night since starting CPAP with choking/gasping for air. However, I am still waking up 5 to 7 times during the night because I need to go to the washroom with VERY full bladder, my mouth is extremely dry, or I just wake up. Most of the time, I am able to fall back to sleep quite quickly but I don't sleep more than 6 hours and that is not a solid sleep. So actual sleeping time is between 5 and 6 hours. I still feel fatigued and this morning, I have a nasty headache.
I am waking up way too many times, tired during the daytime, difficulty staying awake in the evening until bedtime - the past few evenings, I have almost fallen asleep sitting up and it was barely going on 9 pm
In January, I increased the pressure (as prescribed) by 1.0 to see if that would help with the flow limitations during REM. It backfired with severe aerophagia. I dropped the pressure back to 7.6 and it seems to be OK.
I have done all the lifestyle things as far as preparing for a good sleep: no eating after 6pm, no alcohol, don't smoke, am normal weight, don't have GERD (gastroscopy done), don't nap during the daytime, dark/cool room, drink one coffee in the morning and not every morning, and have black tea but not after 3pm. Don't even eat chocolate LOL! Don't eat spicy foods anymore. Exercise every day, either at the gym or go for a long walk. So why am I STILL waking up 5 to 6 times a night?
I did have mild PLM on my initial sleep study and I have been taking iron supplements to try and get my ferritin levels up to a decent level. Will get it checked tomorrow.
Although my AHI looks good, I am definitely not feeling like I am getting optimum sleep.
Thoughts? Ideas? Maybe it's time for another sleep study.
I know I can't go without the CPAP and I haven't missed a single night since starting. I need that air

[Julie]

Hi, have you never tried a full face mask? It would solve the fact most of your therapy is going out of your mouth instead of down your airway and you no longer would have a dry mouth in the a.m.

[kteague]

I did have mild PLM on my initial sleep study and I have been taking iron supplements to try and get my ferritin levels up to a decent level.

Just want to throw out some thoughts for consideration before you get another sleep study. It is not uncommon for a person with PLMD to find their movements worsen after CPAP treatment allows them to sleep event free, thus giving more sleep in which the sleep disorder of PLMD can manifest. Having another diagnostic study without CPAP will not determine if you have this problem. Neither will another titration. A study with you using your CPAP at a known therapeutic level, or at least as you now use it, will best show if you have increased limb movements on CPAP. For some people getting the ferritin level up proves helpful, but that doesn't always fully resolve PLMD. Wouldn't hurt to have your magnesium level checked too, and while you're at it Vitamin D. Do all the things you can to give your body what it needs to function at its best. If you want to do something preliminary to a sleep study, recording yourself sleeping at night could give you some guidance to if you're barking up the wrong tree.

[CoastalSun]

Thanks for your responses. I haven't had a titration with CPAP; after the initial sleep study when I was diagnosed with sleep apnea and PLMD, I was prescribed a range of pressures and a sleep tech set it up at 7. I have been 'advised' not to use a full face mask.
My most recent ferritin level was still low after 3 months of supplement so I will continue with the iron; magnesium level is normal; and I have been on Vit D for several years so wouldn't expect it to be low. It's not easy to convince a doctor here to order a Vit D level and at that, I'd have to pay for the test.
Other than the low ferritin and a high hematocrit, blood work is normal.

[Julie]

Why were you advised not to wear a FFM?

[sleeplessinaz]

If you were prescribed a range of pressure why did a sleep tech set you at a "7"?

[SleepDisturbed]

Have you tried a chin strap?

[CoastalSun]

I looked back at the original prescription and it states "APAP Pressure range 6 - 16 cmH2O then switch to 90% in 2 weeks"
That was for a 4 week trial and then I purchased my own - ResMed Elite S9. My pressure was set at a straight '7.'

If I am waking up several times during the night now and those times are only the ones that I am aware of, then I think it's pretty safe to say there are a lot more arousals that are disturbing my sleep which could be contributing to my overall daytime fatigue, right?

I have been diagnosed with an 'irritable larynx' and my vocal chords very sensitive to triggers such as strong odours, wind, fatigue, etc etc. Result is total voice loss and sore throat. Hence: the recommendation that I not use a FFM.

I have tried taping my mouth and I have used a chin strap. No significant difference in the quality of my sleep. So ... I have read about others here who use a cervical collar and that's my next step.

[Julie]

Well, I can't see how anything you listed would be remotely applicable to wearing a FFM - if anything, with only a nasal mask you're 'open' to more of them, but it's your choice. Hope the collar works for you.

[robysue]

If I am waking up several times during the night now and those times are only the ones that I am aware of, then I think it's pretty safe to say there are a lot more arousals that are disturbing my sleep which could be contributing to my overall daytime fatigue, right?

Not necessarily. Sometimes the problem is literally worrying too much about the wakes you do remember and thinking that they are symptoms that something is wrong when in reality they may just be normal post-REM wakes that you are working (hard) on remembering.

Sometimes the best thing is to try not to worry about a few wakes if the rest of the sleep is good.

Out of curiosity, what do you do and what do you think when you realize that you're awake in the middle of the night?

I have been diagnosed with an 'irritable larynx' and my vocal chords very sensitive to triggers such as strong odours, wind, fatigue, etc etc. Result is total voice loss and sore throat. Hence: the recommendation that I not use a FFM.

Do you mouth breath during the daytime? If you do, working on learning how to breath through your nose would probably help the larynx.

And does sleeping under a fan cause problems?

I have tried taping my mouth and I have used a chin strap. No significant difference in the quality of my sleep. So ... I have read about others here who use a cervical collar and that's my next step.

How bad are the leaks???

[CoastalSun]

Robysue:

" Sometimes the problem is literally worrying too much about the wakes you do remember and thinking that they are symptoms that something is wrong when in reality they may just be normal post-REM wakes that you are working (hard) on remembering.
Sometimes the best thing is to try not to worry about a few wakes if the rest of the sleep is good.
Out of curiosity, what do you do and what do you think when you realize that you're awake in the middle of the night?"

A few nights, I have checked the number of awakenings by shutting off the CPAP when I wake up ... that's why I know it's 4/5/6 x .... not because I try to remember them. When I do wake up, I change positions and usually fall back to sleep within ten minutes or so. I wake up because I am in pain (shoulder/back/neck/head) ... I need to go to the washroom ... or my mouth is extremely dry. I don't normally ruminate about things. I tried gabapentin for a few weeks for peripheral neuropathy but it made my mouth dryness worse and my vision blurry. Stopped taking it

"Do you mouth breath during the daytime? If you do, working on learning how to breath through your nose would probably help the larynx."

No, I don't mouth breath during the daytime. When I check, my tongue is behind my top teeth resting on the roof of my mouth. I have tried taping and the leak rate was almost nil but I still woke up with a dry mouth. Dry enough that my tongue was stuck to the side of my mouth.

"And does sleeping under a fan cause problems?"

I don't sleep with any kind of fan. I have the window open slightly.

"How bad are the leaks??? "

Leaks are fine I think. Over the past seven days, average leak was 3.86 and 95% leak rate was 18.

[robysue]

A few nights, I have checked the number of awakenings by shutting off the CPAP when I wake up ... that's why I know it's 4/5/6 x .... not because I try to remember them. When I do wake up, I change positions and usually fall back to sleep within ten minutes or so. I wake up because I am in pain (shoulder/back/neck/head) ... I need to go to the washroom ... or my mouth is extremely dry. I don't normally ruminate about things. I tried gabapentin for a few weeks for peripheral neuropathy but it made my mouth dryness worse and my vision blurry. Stopped taking it Those pain issues are going to need to be addressed if you really want to eliminate the wakes. Have you considered the role your mattress, pillows and sleep position might play in aggravating the shoulder/back/neck/head pain?

Or you can simply not worry too much about them. For what it's worth my own data will show anywhere from 2 to 6 wakes, most of which I don't remember at all. I've learned not to worry about wakes I don't remember, and that helps me sleep better.

"Do you mouth breath during the daytime? If you do, working on learning how to breath through your nose would probably help the larynx."

No, I don't mouth breath during the daytime. When I check, my tongue is behind my top teeth resting on the roof of my mouth. I have tried taping and the leak rate was almost nil but I still woke up with a dry mouth. Dry enough that my tongue was stuck to the side of my mouth.

"How bad are the leaks??? "

Leaks are fine I think. Over the past seven days, average leak was 3.86 and 95% leak rate was 18.

You might not need to tape or use a chinstrap or a FFM. Have you ever just tried sleeping with the nasal mask without taping or a chinstrap???

As for the dry mouth, make sure you are well hydrated throughout the day. Be sure to have some water right before bed and consider cranking the humidifier up to it's max. That won't fix the problem, but it may help minimize it.

[chunkyfrog]

I get better sleep when I go to bed earlier than, say, right now.
Good night, kids.

[CoastalSun]

Thanks Robysue.
I haven't taped for at least two months, nor have I used a chin strap. I forgot to change the mask type in my details ... the Nano was leaking too much so I switched to an F&P Eson nasal mask three months ago. It works much better. I did have a problem with pressure cuts on the bridge of my nose but once it healed, I continued using mole skin on the bridge of my nose every night. Works fine and I haven't had a problem since with the skin breaking.

[kteague]

...A few nights, I have checked the number of awakenings by shutting off the CPAP when I wake up ... that's why I know it's 4/5/6 x...

Just a note on that - are you using the ramp feature? If you are, and you fall back asleep quickly, that would mean several times a night you are not fully protected from apneas during the multiple ramp times. Just as an example, using a 30 minute ramp 5 times a night totals 2.5 hours of ramp. Take away 10 minutes of wake time for each and you'd still have nearly 2 hours of unprotected sleep. If you are not using ramp, disregard everything I just said.