Need help......frustrated and disillusioned

[Gibbo]

I was diagnosed with sleep apnea about a year and a half ago and have been struggling with daytime fatigue for years. Since I was diagnosed I have undergone two separate several week cpap trials with no avail. I can honestly say that my cpap experience is up there with one of the worst that I have ever had. As much as I acknowledge the potential health risks of not treating sleep apnea, and also have a desperate desire to alleviate my daytime fatigue, I simply have not been able to tolerate the insufferable discomfort associated with cpap machines. My plight is further exacerbated by the fact that I am an extremely light sleeper who struggles with managing unwanted irritations on the best of nights. I have tried numerous machines, settings, and masks, each with their own set of problematic features: too noisy, too uncomfortable, too hot, sore nostrils, sore throat, feels claustrophobic, resembles an archaic torture device, and so on. Due to a great deal of perseverance and some creative troubleshooting I did manage to overcome the vast majority of problems; however, the one thing that I simply cannot seem to solve is the problem caused by my mouth muscles relaxing after I fall asleep. When using the nasal pillows air comes out of my mouth and causes me to wake up. If I attempt to seal my mouth my cheeks simply balloon out and it feels pressured and uncomfortable. Alternatively, I have tried a mask that covers my nose and mouth, resulting in my mouth being blown wide open like in a wind tunnel. I have tried using chin straps and turning the air pressure down but have not had any luck. Currently I feel disillusioned and despair. I have researched surgical solutions but it appears as though they are fraught with both risks and unwanted side effects. Furthermore, they are often unsuccessful or symptoms return over time. If anybody has any words of wisdom or helpful advice I would be eternally grateful.

[mgaggie]

What about a full face mask?

[49er]

Hi Gibbo,

As one who is also in a similar situation, I feel your pain big time. Have you considered a dental device?

If this option appeals to you, you might want to visit, http://www.apneasupport.org/sleep-apnea ... n-f20.html and particularly look for posts by sleepdent who previously posted under the name a.b. luisi. They have been really helpful in my opinion.

Hang in there.

49er

I was diagnosed with sleep apnea about a year and a half ago and have been struggling with daytime fatigue for years. Since I was diagnosed I have undergone two separate several week cpap trials with no avail. I can honestly say that my cpap experience is up there with one of the worst that I have ever had. As much as I acknowledge the potential health risks of not treating sleep apnea, and also have a desperate desire to alleviate my daytime fatigue, I simply have not been able to tolerate the insufferable discomfort associated with cpap machines. My plight is further exacerbated by the fact that I am an extremely light sleeper who struggles with managing unwanted irritations on the best of nights. I have tried numerous machines, settings, and masks, each with their own set of problematic features: too noisy, too uncomfortable, too hot, sore nostrils, sore throat, feels claustrophobic, resembles an archaic torture device, and so on. Due to a great deal of perseverance and some creative troubleshooting I did manage to overcome the vast majority of problems; however, the one thing that I simply cannot seem to solve is the problem caused by my mouth muscles relaxing after I fall asleep. When using the nasal pillows air comes out of my mouth and causes me to wake up. If I attempt to seal my mouth my cheeks simply balloon out and it feels pressured and uncomfortable. Alternatively, I have tried a mask that covers my nose and mouth, resulting in my mouth being blown wide open like in a wind tunnel. I have tried using chin straps and turning the air pressure down but have not had any luck. Currently I feel disillusioned and despair. I have researched surgical solutions but it appears as though they are fraught with both risks and unwanted side effects. Furthermore, they are often unsuccessful or symptoms return over time. If anybody has any words of wisdom or helpful advice I would be eternally grateful.

[zoocrewphoto]

I was diagnosed with sleep apnea about a year and a half ago and have been struggling with daytime fatigue for years. Since I was diagnosed I have undergone two separate several week cpap trials with no avail. I can honestly say that my cpap experience is up there with one of the worst that I have ever had. As much as I acknowledge the potential health risks of not treating sleep apnea, and also have a desperate desire to alleviate my daytime fatigue, I simply have not been able to tolerate the insufferable discomfort associated with cpap machines. My plight is further exacerbated by the fact that I am an extremely light sleeper who struggles with managing unwanted irritations on the best of nights. I have tried numerous machines, settings, and masks, each with their own set of problematic features: too noisy, too uncomfortable, too hot, sore nostrils, sore throat, feels claustrophobic, resembles an archaic torture device, and so on. Due to a great deal of perseverance and some creative troubleshooting I did manage to overcome the vast majority of problems; however, the one thing that I simply cannot seem to solve is the problem caused by my mouth muscles relaxing after I fall asleep. When using the nasal pillows air comes out of my mouth and causes me to wake up. If I attempt to seal my mouth my cheeks simply balloon out and it feels pressured and uncomfortable. Alternatively, I have tried a mask that covers my nose and mouth, resulting in my mouth being blown wide open like in a wind tunnel. I have tried using chin straps and turning the air pressure down but have not had any luck. Currently I feel disillusioned and despair. I have researched surgical solutions but it appears as though they are fraught with both risks and unwanted side effects. Furthermore, they are often unsuccessful or symptoms return over time. If anybody has any words of wisdom or helpful advice I would be eternally grateful.

You might want to try the hybrid mask. It has pillows for the nose and a bubble around the mouth. I believe one version has a cupped chin to help you keep the mouth from opening too much.

I use a full face mask as I need to breathe through my mouth, but I can do it with my mouth open only a little bit.

[Denial Dave]

what machine are you using?

What are your pressure settings?

Are you using humidity? if yes, what do you have it set at?

[loopylooloo]

All I can say right now is that I am with you. I've only had my machine about a week though. I'm having a really tough time of it. Today my therapist (who I was seeing before my diagnosis for anxiety and such) said that I need to stop thinking about the negatives of it and think of the positives.

Right now my negatives are that I feel like I can't breathe when I exhale. My chest feels very weird after I take it off (I've had it on 30 minutes at the longest so I know that is not long enough to get used to it, of course). This weekend I caught a cold and it's made it all worse. Today was a fairly good day with the brain fog I have, but made a bit worse with the cold. I tried it last night and couldn't breathe because of the cold (I do have a humidifier)

Anyhow, I just feel as discouraged as you and wanted to share. I'm looking into dental devices if I can. Not sure if I will qualify or not but I'm going to see.

Either way, I will keep trying at this cpap thing because I want my life back. I really, really want it back.

[loopylooloo]

One last thing: when you are really down..sometimes it is best to stay off these forums. I had a bad experience one time on a forum where everyone started yelling at me that I had to use the cpap and then shot out stats about all the health issues I was going to have if I didn't do it and all the ones I probably had and didn't know I had. Needless to say I had a panic attack (I have a lot of issues with panic) so it was a bad experience. I had to take a long break from the forums.

[caffeinatedcfo]

Sorry you are off to a rough start.

Have you tried wearing the mask a bit during your awake time (without the machine on). This may help your brain/subconscious accept this foreign 'alien' when it comes time to relax and fall asleep.

[mgaggie]

Loopy its not unusaul to experience trouble exhaling against the pressure of the machine. Try using the ramp feature on your machine, I found using the ramp helped my body get used to exhaling before being blasted by the max pressure setting.

As with the chest pain, for the first week of using my machine, it hurt to breathe in and out. The therapist told me that was due to my lungs fully inflating when on the machine, as I'd not been breathing properly while asleep for a long time my body just wasn't used to it. Trust me, it does go away.

I sympathise about your cold, I have one too and can only manage about 20mins a night on the machine before I start trying to cough my lungs up and the nose totally blocks (doesn't matter if I've used a decongestant).

Just keep trying, it does get easier, good luck

[joshland]

Hi Gibbo _ i had that same problem for the first month.
It really does suck!... majorly! Mideaval torture for sure! I agree. But you must get over it!

Best Options:
Pharmocologically: Ask for prescription zanex and/or sleeping pills. (or benadryl from your sleep doctor). try to get knocked out. Then it will work better.
Try to wean yourself off of the meds after a few weeks. Whatever you do, do not give up! It will change your life!

Option 2 is pretty lame, but: Call the CPAP person who sold it to you every other day and ask for help!

Remember that the best sleep is last few hours. So go to sleep early, like be in bed by 9 pm! That way by six or seven am, the machine is helping to regulate your breath and your sleep isn't compromised.

Also, do not drink or smoke! it messes up your bio-rhythm like: breathing and natural reflexes.



Also, after you find it works after the first few weeks, your body will want it and psychologically find it very comforting and relaxing, like how a baby loves a furry, stuffed animal. It is so wonderful, like a beautiful spring morning!!

[49er]

Hi Joshland,

Perhaps you missed the part of Gibbo's post in which he/she has been trying to make the therapy work for 18 months. So it isn't an issue of simply "getting over it". I can tell you from personal experience as one who has experienced a similar situation, that failing to succeed with pap therapy in spite of trying everything you can think of to to make it work is heartbreaking.

Anyway, Gibbo, you might want to list what you have tried to make things work. That way, people won't list ideas that you have already attempted.

49er

Hi Gibbo _ i had that same problem for the first month.
It really does suck!... majorly! Mideaval torture for sure! I agree. But you must get over it!

Best Options:
Pharmocologically: Ask for prescription zanex and/or sleeping pills. (or benadryl from your sleep doctor). try to get knocked out. Then it will work better.
Try to wean yourself off of the meds after a few weeks. Whatever you do, do not give up! It will change your life!

Option 2 is pretty lame, but: Call the CPAP person who sold it to you every other day and ask for help!

Remember that the best sleep is last few hours. So go to sleep early, like be in bed by 9 pm! That way by six or seven am, the machine is helping to regulate your breath and your sleep isn't compromised.

Also, do not drink or smoke! it messes up your bio-rhythm like: breathing and natural reflexes.



Also, after you find it works after the first few weeks, your body will want it and psychologically find it very comforting and relaxing, like how a baby loves a furry, stuffed animal. It is so wonderful, like a beautiful spring morning!!

[kteague]

From time to time people post on here who seem to have a heightened sensitivity to physical sensations. Don't know if that's how you're wired or not - just want to say it is hard for those not so sensitive to understand the woes of those who report the least sensation causes agitation. It's also difficult for one without claustrophobia or anxiety to identify with those issues. You will get replies from people who may or may not be able to relate to your dilemma. Sift through the well-intended nuggets for what might work for you.

My own experience with claustrophobia has been transient - just enough for me to recognize it's validity. I am not generally a hyper sensitive or anxious person, but I went through several years when dealing with my RLS/PLMD when the least little thing would cause extreme agitation - a strap touching my ear, the nasal pillows touching my upper lip, the fabric of my PJs twisted on my leg could just ruin a night for me. Been known to throw a mask against the wall in the middle of the night.

I don't know the answers for you. For me it was in addressing other contributors such as my limb movement disorder and medication side effects. Made everything about CPAP much more tolerable. Your desperation comes through in your post - I can't relate to everything specific to your experience, but I can relate to the desperation. Best wishes in figuring out what will give you the sleep you need.

[Gibbo]

Thank you all for your various advise, encouragement, and other words of wisdom. I feel strangely comforted by the fact that there are others out there who have faced similar woes. I truly hope that in time I will be one of the success stories of people who have managed to overcome the difficulties of CPAP. My motivation to continue my CPAP challenge has been renewed and I can now see a glimmer of hope on the horizon. To be continued...

[mgaggie]

Thank you all for your various advise, encouragement, and other words of wisdom. I feel strangely comforted by the fact that there are others out there who have faced similar woes. I truly hope that in time I will be one of the success stories of people who have managed to overcome the difficulties of CPAP. My motivation to continue my CPAP challenge has been renewed and I can now see a glimmer of hope on the horizon. To be continued...

Good luck Gibbo

[Sigrid]

Hi Gibbo,
I am also highly sensitive to textures, pressure, sounds, etc. Long ago I gave up trying to ignore my sensitivities and now accept myself as I am, and modify my sleeping arrangements to be comforting to me. My jaw also would tend to open during sleep (I use a nasal mask) and I solved that by wearing a yoga headband (made by Prana) over the top of my head and pulled down under my chin and adjusted so it keeps my lips together all night. I also apply a rather sticky beeswax lip balm (from Walgreens) right before I go to bed. The headband covers my ears and creates a snuggly feeling around my head (and covers the earplugs I often wear). As some others have posted, I have become so accustomed to my "astronaut" (or "deep-sea-diver") getup that I look forward to it! A few other things that have helped me: using a sound soother at night (mechanical one, not electronic), cover all glowing lights (including the ones on the CPAP machine); sleep on a sheepskin; use an airplane pillow (the U-shaped one that goes around the neck) to keep head firmly in place while sleeping on back; cover tube with a soft cover and use a soft "Pad-a-Cheek" cover; etc. Best wishes-- your determination to make this work will help you find the way that works for you. A sense of humor will help too!