Going on 6 months and still having trouble adjusting

jrgood27 · Post by **jrgood27** » Sat Dec 09, 2006 1:47 pm

Hi, I'm starting to get discouraged and I thought I could get some suggestions on possible next steps so I can try to remain proactive.

After trying 6 masks, I settled on the Activa (shallow). I tried 3 nasal pillow masks and a UMFF and a gel, and the Activa was the quietest and had a very good seal and wasn't as intense as the nasal pillows. I could actually fall asleep with it on (albeit with 2 benadryl).

For 3 months I've been using just the Activa and Benadryl and figuring out how to make things work for me. My jaw drops so I've been mouth taping (which works about 50% of the time and leads to chipmunk cheeks and/or dry mouth the other 50%). Tried a chin strap (Tiara) - just couldn't get it to work with the head gear.

I had an aerophagia problem and started an acid blocker which helped that alot - as long as I don't eat too much for dinner.

I rigged the hose in a way that works best for me I think. Though I may play with that more.

I'm using it anywhere from 1 to 5 hours per night. I guess my biggest problems are the jaw dropping and just waking up randomly feeling enough discomfort from the mask so that I can't fall back asleep. So I ditch it.

I've got the straps very loose like many suggest. But I still feel a great deal of pressure on my front teeth - where the bottom of the mask rests and my teeth ache the next day. Or I just wake up from the pressure of the mask on my face.

I'm not sure what to do next. I could see if my DME will get me another kind of full face mask. Or stick with the Activa and try to find a better solution than mouth taping. A better chin strap?

My hubby is sleeping in the guest room as a last ditch effort to help me adapt to using the machine. I often awake when he his tossing and turning in his sleep (despite the fact that we bought a king sized, minimal motion bed), so we wanted to try minimizing things that might wake me.

So, I'm a light sleeper. I haven't always been. But for the past 12 years or so I wake up at the slightest noise (so I sleep with a fan). Even the light from the LCD of the Vantage can wake me up.

Alright this is getting long. What to try next? Is there something more comfortable than the Activa that is as quiet?

Oh - I have an S8 Vantage on Auto (5.5 - 18) - my 95% pressure usually ranges between 6.5 to 8.5. And AHI is usually under 1. Leaks usually .04 to .12.

Thank you! Jenny

storminnormin · Post by **storminnormin** » Sat Dec 09, 2006 5:17 pm

Jenny,
I'd definitely recommend trying a full face mask if a nasal at 6 months is not working. The advantage of a full face over a nasal is you don't have to worry about mouth breathing. It's a non-issue. However, you have to get used to the mask covering both mouth and nose.
I use the fisher paykel 431 full face and I've managed in about 2 weeks to have adjusted well to it. But, that's just me.

Do you wear ear plugs? I do. You use a fan. So do I. I'm a light sleeper and I used to sleep on the floor (for years) to avoid my wife's snoring and moving. Now, I am taking some sleep meds that really help. However, since I've started cpap (3 weeks ago) I plan to slowly find a way off the sleep meds.
Keep trying and feel free to pm me and I'm willing to try and help.

Stormin

Julie · Post by **Julie** » Sat Dec 09, 2006 5:23 pm

The Ultramirage FF may fit lots of people, but if it doesn't fit you, it's not much good, so why not try another FF mask that a lot of others like? Such as the Fisher Paykel Flexi-fit 432 (not the older 431 model). It works for me where many others haven't (and no, I don't work for the company ! See if you can get a trial for 1-2 wks from your DME as I did, because just getting fitted standing up in a store won't tell you a thing.

Snoredog · Post by **Snoredog** » Sat Dec 09, 2006 5:39 pm

I agree the FF mask is the best long term alternative, but if you have a petite face it may be difficult finding one that actually fits they tend to run larger in size.

I would also dry melatonin and try to get off the Benedryl, that stuff is not meant to be used long term and has many side effects. Melatonin has very little if any side effects, it may help you sleep deeper and not wake up so much during the night.

jrgood27 · Post by **jrgood27** » Sat Dec 09, 2006 6:36 pm

Thanks very much for your replies.

I'll try to talk my DME into getting me the F&P 432. My face is on the narrow side, but it's worth a try. My RT is reluctant to order masks she's not familiar with so I may end up paying out of pocket. Hm, maybe Santa will bring me one.

Does the 432 have something to keep your chin in place? The UMFF = major chipmunk cheeks for me.

Unfortunately I habituate to melatonin quickly and it makes me profoundly depressed and since I already grapple with some depression it's not an option for me.

I've tried a long list of sleep aids and so far Benadryl's the best (though not without side effects). And it had an unintended effect: it's preventing my migraines - which I used to get once or twice a week and now get once every 4-6 weeks. Lunesta also knocks me out, but = more migraines.

I've tried to find information on long term use of Benadryl and issues that may arise with that, but haven't been able to find anything. Do you have any info on that Snoredog? I know it's dehydrating and doesn't clear out of your system very quickly (groggy mornings). But I couldn't find anything else.

Jenny

StillAnotherGuest · Post by **StillAnotherGuest** » Mon Jan 08, 2007 6:32 am

Hi jenny:

Say, did you ever get that FFM? Things getting any better?

BTW, perhaps the question re: Benadryl isn't the long-term effects, but rather the long-term need.
SAG

Slinky · Post by **Slinky** » Mon Jan 08, 2007 7:58 am

Have you thought of going back to your sleep doctor w/the data from your Auto in hand? I'm a newbie but from reading here it would seem that perhaps your pressure range w/the Auto is set too high. If your 95th percentile is 8-9 cms of pressure you might not really need that maximum pressure of 18. Or perhaps your lower pressure limit is too low.

Perhaps if you keep a tablet near your bed and write down the time when you are woke up due to whatever you will be able to see a correlation between pressure at the moment and your wakening. Just a thought.

Guest · Post by **Guest** » Mon Jan 08, 2007 9:45 pm

I noticed that as well - if you are using auto and your usually at average on 8 or 9 you might not want you range of auto so high
I know that when I switched to auto to see how it was, I woke up EVERY time there was in increase in pressure - and got no sleep w/ apap - versus going back to straight cpap - on 8 - I don't wake up at all like with auto

Booktty830 · Post by **Booktty830** » Tue Jan 09, 2007 8:14 am

my honey is sleeping in the other room too! I have tried 4 different nasal masks and am now on a Full Face because my chin was always dropping and I can't get the chin strap to stay in place right. The problem I'm having with the FF is that after the machine "ramps up" to full pressure, it starts to leak air into my eye! my last nasal mask fit perfectly but my chin would drop. Chin strap would slip and slide and end up almost choking me. I'm getting frustrated as well. The FF mask is an adult Small and I've asked my RT for a "child large" and she won't do it...says it's too small.

What do I do??

I wonder if there is a better chin strap out there. The one the RT gave me just looks like a plain ace bandage. Don't they make chin straps that attach to the head gear? My honey thinks we should "invent" one that kind of looks like the chin strap on a football helmut and attaches to the head gear. If they don't exist, then I might try to 'fashion" one!

Booktty830 · Post by **Booktty830** » Tue Jan 09, 2007 8:16 am

my honey is sleeping in the other room too! I have tried 4 different nasal masks and am now on a Full Face because my chin was always dropping and I can't get the chin strap to stay in place right. The problem I'm having with the FF is that after the machine "ramps up" to full pressure, it starts to leak air into my eye! my last nasal mask fit perfectly but my chin would drop. Chin strap would slip and slide and end up almost choking me. I'm getting frustrated as well. The FF mask is an adult Small and I've asked my RT for a "child large" and she won't do it...says it's too small.

What do I do??

I wonder if there is a better chin strap out there. The one the RT gave me just looks like a plain ace bandage. Don't they make chin straps that attach to the head gear? My honey thinks we should "invent" one that kind of looks like the chin strap on a football helmut and attaches to the head gear. If they don't exist, then I might try to 'fashion" one!

Going on 6 months and still having trouble adjusting

Going on 6 months and still having trouble adjusting

Full face mask it is

Was Santa Good To You?

I too have been having difficulty finding the right mask

I too have been having difficulty finding the right mask