What to do when all methods of sleep apnea treatment are exhausted?

[reader2580]

It appears I am doomed to having untreated sleep apnea with the always tired feeling and constant headaches. I have tried CPAP and mandibular advancement to no avail. I had a drug induced sleep endoscopy this morning and don't qualify for the Inspire sleep device due the sides of my throat collapsing. My BMI is currently 31, but back when it was under 25 four years ago my sleep apnea wasn't any better. I have had five sleep studies to date.

I simply can't find a CPAP mask I can tolerate for more than a few hours. I need to use a full face mask due to my mouth opening. The once a month or so I can sleep through the night with the CPAP I don't feel any better. A few months ago I threw out two or three grocery sacks full of CPAP masks that didn't work out for me. Yes, I have used Sleepyhead to look at my data. My sleep doctor had me turn up the minimum pressure so that the jumps between minimum and full pressure would not possibly wake me up.

What do I do when I can't find a treatment that works for sleep apnea? I even called the Mayo Clinic sleep medicine center today to see if they could help with hard to treat cases of sleep apnea.

[babydinosnoreless]

Have you tried different ways of keeping your mouth closed so
You can wear a nasal mask ? Foam cervical collar, mouth taping, jaw strap or scrunchies ?

Have you tried wearing the mask in the daytime while
you are watching TV or reading or some other relaxing activity to get used to it ?

[ChicagoGranny]

My sleep doctor had me turn up the minimum pressure so that the jumps between minimum and full pressure would not possibly wake me up.

That might be the problem. You took the doctor's advice.

I see you have 41 posts here so far. Have you posted SH charts for review by members?

[babydinosnoreless]

Look at the 4th picture down to see the lengths some people will go to, so they can sleep.

viewtopic/t175368/How-tohome-made-ideas ... t=Pictures

A few months of sleeping with my machine and I can sleep through the night without getting up to pee, I have lost almost 30 pounds and feel better than i have in 20 years. It is totally worth it, in my opinion.

[palerider]

What do I do when I can't find a treatment that works for sleep apnea? I even called the Mayo Clinic sleep medicine center today to see if they could help with hard to treat cases of sleep apnea.

Tracheotomy

[reader2580]

Have you tried different ways of keeping your mouth closed so
You can wear a nasal mask ? Foam cervical collar, mouth taping, jaw strap or scrunchies ?

I started with a nasal mask and had no issues sleeping all night with the mask on. It didn't help me sleep any better so I had a second sleep study where the doctor said I was opening my mouth so I needed a full face mask. I have tried probably at least a dozen full face masks to try to find one I can tolerate. I bought a Dreamwear mask last fall that I am currently using.

I have tried chin straps and just about everything else.

[babydinosnoreless]

Have you tried different ways of keeping your mouth closed so
You can wear a nasal mask ? Foam cervical collar, mouth taping, jaw strap or scrunchies ?

I started with a nasal mask and had no issues sleeping all night with the mask on. It didn't help me sleep any better so I had a second sleep study where the doctor said I was opening my mouth so I needed a full face mask. I have tried probably at least a dozen full face masks to try to find one I can tolerate. I bought a Dreamwear mask last fall that I am currently using.

I have tried chin straps and just about everything else.

So you have taped your mouth shut and worn the nasal mask and looked at the data to see if your still leaking air ? One or two nights don't make you feel any different. For most of us it takes months to feel less sleep deprived.

[D.H.]

What do I do when I can't find a treatment that works for sleep apnea? I even called the Mayo Clinic sleep medicine center today to see if they could help with hard to treat cases of sleep apnea.

Tracheotomy

That was the only treatment for Sleep Apnea prior to CPAP. Awful as it is, it does work! Of course, it's so radical that they would only give it to patients who were deftly ill.

Initially, CPAP was tried as an alternative for those same very ill patients. Gradually, CPAP began to be prescribed for patients who were not ill enough for tracheotomy.

[katestyles]

You certainly seem to have tried everything, but there is always something lurking at the bottom of the barrel.
I am also a mouth breather, but it does not mean full face mask only.
What kind of pressure do you need?

[Pugsy]

Drastic yes...but still offered as an option.
We have a forum member who had it done after years of trying cpap without success. She came by the forum a couple of years ago to just let us know how she was doing and what she had done.
She said she didn't regret her decision at all. So it is an option that is still available and the OP did ask about any other options.

What do I do when I can't find a treatment that works for sleep apnea? I even called the Mayo Clinic sleep medicine center today to see if they could help with hard to treat cases of sleep apnea.

Tracheotomy

That was the only treatment for Sleep Apnea prior to CPAP. Awful as it is, it does work! Of course, it's so radical that they would only give it to patients who were deftly ill.

Initially, CPAP was tried as an alternative for those same very ill patients. Gradually, CPAP began to be prescribed for patients who were not ill enough for tracheotomy.

[reader2580]

So you have taped your mouth shut and worn the nasal mask and looked at the data to see if your still leaking air ? One or two nights don't make you feel any different. For most of us it takes months to feel less sleep deprived.

I no longer have a nasal mask as it has been over five years since I switched to full face. I used the nasal mask for at least a year without any relief.

[reader2580]

That might be the problem. You took the doctor's advice.

I see you have 41 posts here so far. Have you posted SH charts for review by members?

I have no reason not to believe the doctor. I recall the machine was set to a minimum of four and the data was showing it maxing at about 13. It made perfect sense to increase the minimum to 8.

I have had three sleep doctors and he is very good. I like his work so much I drive four hours round trip to see him because he moved to a new practice out in a rural area. He seems to be very patient focused. He has very mild sleep apnea with an AHI of 8 to 10 yet he uses CPAP mostly to experience what his patients do. He knows all the major CPAP machines inside and out it seems.

[kteague]

Since the sides of your throat collapse, have your sleep studies confirmed if your events are as bad with side sleeping as supine? Have you tried belly sleeping to see if it helps? While I would hope you could find benefit from training your tongue to stay suctioned to the roof of your mouth, if not, have you tried an oral only mask? How certain are you that the masks are the reason for your wakeups? Sorry to ask so many questions. Just hoping that there might be some grain of hope that there are efforts yet to be exhausted.

[katestyles]

That might be the problem. You took the doctor's advice.

I see you have 41 posts here so far. Have you posted SH charts for review by members?

I have no reason not to believe the doctor. I recall the machine was set to a minimum of four and the data was showing it maxing at about 13. It made perfect sense to increase the minimum to 8.

I have had three sleep doctors and he is very good. I like his work so much I drive four hours round trip to see him because he moved to a new practice out in a rural area. He seems to be very patient focused. He has very mild sleep apnea with an AHI of 8 to 10 yet he uses CPAP mostly to experience what his patients do. He knows all the major CPAP machines inside and out it seems.

Good to have a doctor that knows what he is inflict on you!

If you are running between 8 and 13, you could certainly look at using mouth taping - you might find it works.

[Becca59]

Have you tried the Resmed F30 or Phillips Respronics Amaraview? I found that the F30 worked great for me. I have not tried the Amaraview since the F30 worked. Both are full face masks, but smaller profile, covers your mouth & cushion rests under your nose. I would not give up on CPAP therapy until you've tried one of those masks. I am on APAP not CPAP. I don't know if that makes a difference. My pressure starts at 5 adjusts from 5 to 14 as needed. If you are on CPAP, ask your doctor if you can be good with APAP. I am on a year now with APAP. I don't know how the doctor determines what is needed, CPAP, APAP, or Bi-level.