Care to brainstorm anyone?

last night i used the aura/headrest with the rubberband fix. it's not exactly comfortable, but it's the most comfortable mask of all that i have.

stomach sleeping is really tough for me - neck and back pain. i'm a side sleeper.

7 sounds low but it doesn't feel that way. i'm fortunate that i don't need a higher pressure at lest.

i can't remember if i've tried 7.5. maybe i'll start varying the pressure systematically and keeping notes. thanks, j

Jenny,

I have thoughts but I want to ask some questions first:

You said you take Benadryl for sleep/sometimes Lunesta. Do you take Benadryl every night and sometimes add Lunesta? I'm trying to get to whether you take Benadryl every night or not.

What FF masks have you tried?

Can you post your sleep study results - initial and titration?

jrgood27 wrote:It feels almost like I'm having a startle response when I inhale and feel the pressure increase

I got the impression earlier in your post that you turned EPR off, so what pressure increase are you feeling?

jrgood27 wrote:last night i used the aura/headrest with the rubberband fix. it's not exactly comfortable, but it's the most comfortable mask of all that i have.

stomach sleeping is really tough for me - neck and back pain. i'm a side sleeper.

7 sounds low but it doesn't feel that way. i'm fortunate that i don't need a higher pressure at lest.

i can't remember if i've tried 7.5. maybe i'll start varying the pressure systematically and keeping notes. thanks, j

I wouldn't be able to make it if they told me I had to sleep on my stomach either. I'm a side-sleeper, too.

Do you have any hunches as to what seems to be disturbing your sleep?
Have you always been a light sleeper?
Are you dreaming alot?.....or not?
You mentioned "pain"....is that a problem when you sleep on your side, too?

Den

Eighteen months or so before I got "hosed," I was visiting my Chiropractor on a weekly basis to correct a strained muscle in my lower back. Each time, I would lie on my stomach on an adjusting table (similar to a massage table) for a ten-minute or so session with electrostimulation equipment. Each time, I fell asleep, face down on that table. Got a massage table, thinking I'd sleep on it instead of trying to sleep face-down on my conventional bedding.

Yes, it helped me sleep. I still had apnea, and would still have arousals. A towel dealt with the drool issues. When I went to turn, I would awaken enough that I usually would go back to my regular bed. As another poster mentioned, long periods on the table gave me a little bit of back pain in the Lumbar area, but a carefully-placed pillow usually corrected for that.

Fast forward to today: I use a ResMed UMFF mask, and it doesn't quite fit the hole in the face support. I can still nap on the massage table, and do so. It is also a good place for me to do my daily back exercises. My cats chase each other under/over/around it some times.

I suppose that if I wore a nasal mask smaller than the hybrids, it could be rigged to fit the headrest.

Hope some of this helps!

Thanks for trying to help me figure this out! Okay some more info -

Been taking Benadryl every night for about 1.5 years. Cleared it with my primary and sleep doc. Took a break from it to try Lunesta when I got the APAP and discovered quickly that the Benadryl was (miraculously) preventing a lot of my migraines and fibromyalgia pain. I have mild to moderate fibro. and hypothyroidism. also low morning cortisol. yeah I pretty much feel like crap, lol.

My docs said I could try adding Lunesta to the Benadryl - So I try that occasionally to see if I can make it through the night with CPAP. But I don't like the way it makes me feel in the A.M.

Yes, the EPR is off now. But the exhaust noise seems to be louder on inhale.

I've tried UMFF and F&P432 full face masks.

Sleep study results:
Respiratory Arousal Index: 47.1. - All hypopneas.
3 spontaneous arousals.
No desats. No PLM. No snoring.
Architecture: S1:7.6% S2:58.6% S3:3.5% S4:24.9% REM:5.4% - It was a very unusual night though in that I could not fall asleep.

I didn't have a titration study. Since I only slept for 3 hours the night of my initial study, my doc felt it would be better to use the APAP to titrate. That's why I had a wide range at first.

I haven't always been a light sleeper. Looking back I can see that it my problems started with early morning awakening and one very clear apnea symptom - if I fell asleep on my back, my throat sealed shut and I woke up.

I didn't know any better and didn't question the several docs I saw in the past 10 years who told me young thin women cannot have apnea. So I just slept on my side and figured I was alright. Gradually it became more difficult to stay asleep. I don't have problems falling asleep (without CPAP that is) but I can't stay asleep. I dream a lot.

My sleep doc finally sent me to a dentist to get fitted for an oral appliance. I figured he must be someone top notch, b/c I have a good doc. Well it turns out they went to school together and my doc sends him all his apnea patients. So I'm reluctant to try it.

eesh, that's enough for now. I feel a little less hopeless now. Thanks. Jenny

Jenny,

I am a light sleeper and have had a great deal of trouble in my 7 months of cpap. I have tried a lot of things, including over the counter and prescription meds -- unfortunately most did not work well for me. If you want to, PM me and I will discuss a few things with you that have a least helped me a little.

I am fairly complaint with my cpap therapy, and am determined to keep using it. Thus, I give myself no choice but to keep looking for solutions.

Best of luck to you.

Janna

Goofproof wrote:You could try and get a bunk on the international spacestation, zero G's should help with you tongue falling back. Jim

Oddly enough we debated this at work a few days ago, only problem was we couldn't figure out how to eliminate gravity.

Seems Goofproof has found a solution.

On a more serious note, I have debtaed UPP and have decided that based upon the tonue failing backwards thorey that it would probably be a mistake.

Hi Jenny

I'm sure this is really frustrating. I'm hoping there's a solution out there for you that can help you stay asleep while you're using your CPAP.

jrgood28 wrote:CPAP isn't seeming too logical for me anymore sadly. It's not a great solution for light sleepers.

Or for that matter, my CPAP may be causing arousals even though it's preventing hypopneas. I often wake up on inhalation - when the exhaust noise increases.

I don't have problems falling asleep (without CPAP that is) but I can't stay asleep. I dream a lot.

You often wake up on inhalation (and I know what you mean about the change in the noise - I notice it as well - it's annoying, but I'm lucky because it doesn't wake me up). How many times do you wake up during the night?

Do you think the mask is waking you up - not comfortable? I do realize you've tried a lot of masks. That seems to indicate you've had trouble with mask comfort. I understand that as well. I started CPAP in January and I have 6 masks upstairs. What did you find difficult about the various masks you've tried?

Could it be a matter of needing to really give yourself a long stretch of time to get used to the CPAP and the changes it causes to your sleep environment? What's the longest stretch of time (days; weeks; months) you've been on CPAP every night?


Regarding the Benadryl - I'm just going to pass this information along. I'm seeing a doctor who is a psychiatrist and a psychopharmacologist. I had been taking Sonata to help me fall asleep. Last week I told him that I had started taking Benadryl instead because my sinuses had started acting up and it also helps me fall asleep. He wasn't wild about me doing this. His reasoning was Benadryl can cause sleep fragmentation. I haven't been able to find any documentation on this yet, but I trust this guy completely based on how he's handling my meds and my fatigue.

Another concern he had with Benadryl was the residual fatigue it tends to cause the following day. I realize you have other reasons to take it and your doc and sleep doc are okay with it. I just wanted to pass along the information for your consideration.

Jenny,

Sounds like you've done due diligence. I was just thinking, if earplugs make you hear the sound more, would listening to something on a headset mask the nosepiece noise - white noise, elevator music, etc? Or maybe it would just be one more noise to keep you awake.

Sure hope you can work through all this. I understand the frustration of not being able to stay asleep. With all my issues, I'm so glad being a light sleeper isn't one of them. Best wishes.

Kathy

I know with myself, I actually notice the machine more than the mask. Espically as the presure increases.

I've actually thought about drilling a hole in the wall and puttting the machince in the next room.

wabmorgan wrote:I've actually thought about drilling a hole in the wall and puttting the machince in the next room.

One poster here drilled a hole in the side of their closet and put their machine in there while running an 8' hose out the hole.

Of course then it'll be an air rushing sound that'll bug you, so get a Soyala, and then you'll be all set.

Hi Jenny,
I am currently using the same S8 machine you have, and previously used a Fisher and Paykel HC234 and have tried a Remstar? that my uncle lent me. I have never had trouble sleeping and my treatment is working fine. I don't know if I have an "acoustic head" or what, but I get I get a lot of noise from the machine through the hose and mask and into my head. Initially, after trying all sorts of things, I solved this by getting a water chamber for the HC150 Fisher & Paykel stand alone humidifier and hooking it up inline to act as a muffler. I have since purchased the complete HC150 unit and run my S8 without it's built in humidifier. This is working wonderfully with a much better humidification system and sound baffle that has reduced the hose/mask noise by about 80% I reckon. The water chambers can be purchased cheaply as a spare part on line to see if it may help.

regards
Archie

Hi - see what you think of this (I tend not to move around much at all overnight). What I did is get a 4" deep slab of hi-density foam rubber (make sure it's been aired for a couple of wks to get rid of any chem. fumes) which is on top of my reg. bed. At the top end, I cut out a 4" wide x 3" deep channel going towards the bottom of the bed x 10" long. My head, on it's right side, is mostly on my left hand, but my nasal mask rests in the channel. It works for me because I use an Ultramirage II and a Comfort Select, which vent not right out from the elbow angle like most do (and would be blocked by the mattress), but from a place on the plastic that's not blocked in the same way. It's not a perfect set-up, but it works for me, and without that channel, I can't get comfortable at all in the masks and they don't seal properly.

I think you should go back and get another all-night diagnostic PSG, and if that shows SDB, then have an in-lab titration done.

In review of your study that was originally posted on the other board:

jrgoo27 Study



The PSG was at the least inadequate (there was no supine sleep, and that was your concern going in) and the available data made any diagnosis of SDB questionable (the oxygen desaturation graph is as steady as a rock, the snoring history is questionable and the flattening statistics which might support the diagnosis of UARS are not particularly strong either).

If after CPAP titration you still have all those arousals, then you really have to consider if there is an SDB component at all.

That said, the UARS/Functional Somatic Syndromes are very closely related, so you really have to be clear on the UARS thing, and if it's in there, then it has to be addressed. Were they using pressure transducer to look at the respiratory events? I would think so, there's no way to come up with flattening statistics if they weren't, but you hafta ask.

This might be a case where you have to get out the esophageal balloon (yeah, I know, the light sleep thing. But, hey, it's been over a year, and it's apparent that you're not where you want to be).

UARS And The Kitchen Sink

If not, then devote the attack to the FSS.

I assume you're still on the thyroid medication. What time of day are you taking it?

If after all this time you're still running 50-70% sleep efficiencies, then it's time to see the Behavioral Sleep Specialist for an attack on the insomnia, which would include Cognitive Behavioral Therapy.

Wanna take a test?



SAG

hi sleepysandy - i wake up between 5 and 10 a night and wake up around 4 or 5 am with the CPAP.

i do find the masks uncomfortable. some more than others. they hurt after awhile. other issues are noise - the swift for e.g. is very loud and not fitting right/leaking. i'm going to order a soyala.

i'll be honest i've only ever gone 2 weeks straight trying it. lately i can't seem to put together 2 nights in a row. my pain is much worse when i sleep poorly. so last night for eg i just could muster the will to use it. ironically, if i can get this straightened out it will help my pain. maybe i need a leave of absence from work to give it a solid go.

i had never heard that about benadryl and sleep fragmentation. thanks for passing that along. for sure it makes my mornings foggy. but i don't start work until 11:30 so it's a side effect i don't mind. but sleep fragmentation doesn't sound good, that's for sure. thanks so much for your help


[quote="SleepySandy"]Hi Jenny

I'm sure this is really frustrating. I'm hoping there's a solution out there for you that can help you stay asleep while you're using your CPAP.

You often wake up on inhalation (and I know what you mean about the change in the noise - I notice it as well - it's annoying, but I'm lucky because it doesn't wake me up). How many times do you wake up during the night?

Do you think the mask is waking you up - not comfortable? I do realize you've tried a lot of masks. That seems to indicate you've had trouble with mask comfort. I understand that as well. I started CPAP in January and I have 6 masks upstairs. What did you find difficult about the various masks you've tried?

Could it be a matter of needing to really give yourself a long stretch of time to get used to the CPAP and the changes it causes to your sleep environment? What's the longest stretch of time (days; weeks; months) you've been on CPAP every night?


Regarding the Benadryl - I'm just going to pass this information along. I'm seeing a doctor who is a psychiatrist and a psychopharmacologist. I had been taking Sonata to help me fall asleep. Last week I told him that I had started taking Benadryl instead because my sinuses had started acting up and it also helps me fall asleep. He wasn't wild about me doing this. His reasoning was Benadryl can cause sleep fragmentation. I haven't been able to find any documentation on this yet, but I trust this guy completely based on how he's handling my meds and my fatigue.

Another concern he had with Benadryl was the residual fatigue it tends to cause the following day. I realize you have other reasons to take it and your doc and sleep doc are okay with it. I just wanted to pass along the information for your consideration.