11 Years Of Attempting CPAP With No Success

I was diagnosed with mild sleep apnea around 11 years ago. I had the option of getting a CPAP machine but the apnea was mild so I didn't have to get one. I decided to try it and found it incredibly intolerable. I felt like I was suffocating every night. I would use the CPAP sporadically. Since then my apnea has gotten worse. I snore and badly. I stop breathing during sleep. I've had 2 additional sleep studies and each time they want me to use a CPAP machine. I have never gotten used to the mask, I have tried every kind of mask out there and am not comfortable in any of them. Most nights I can't fall asleep wearing the mask, but as soon as I take it off, I'm out in 2 minutes. The nights I do use it I've taken 400 mg of Trazodone and 2 of my husband's Diazepam pills. This literally knocks me out so that I can at least sleep one night every 2 or 3 weeks.

Are there any alternative therapies out there? I have tried this for so many years and have not been successful. I am frustrated and tired. I want good sleep but I don't see how to get it. I can't use a dental device because my gag reflex is so bad. I've thought about the Inspire technology but am not sure I want something implanted in my body. I just don't know how I will react to it.

I've seen 4 or 5 different sleep doctors now, and all of them offer no real help. Some of them were down right rude to me because I'm not using the CPAP. They say "just use it!". You'll get used to it. Well I've been trying to get used to it for 11 years and just can't do it anymore. One doctor saw that I had not been using the CPAP for about 2 and a half months. I told her what I felt like trying to use it, and all she had to say to me was "Well what do you want me to do for you!?". I then realized that she didn't work in a SLEEP center she worked in a CPAP center. If I didn't use the CPAP she had nothing to offer me.

I feel like I'm destined to die early in my sleep and there's nothing I can do about it. Help?

Hi SoTired,

I really don’t know what to say.

You raise so many issues and questions that have impacted on many of us. Courage

Others will probably ask you which machine you have and what settings you have been using and which masks you hated the most and which one was the least repellant and so on.

I would raise questions in an entirely different direction not just for you but for the forum in general.

Is there some form of counselling or other help that could provide support and answers in dealing with the psychological issues associated with CPAP usage?

I am a side sleeper so I find it hard to get to sleep on my back. I think my machine is an AirCurve or AirSense bi pap. I tried nasal pillow masks for years but I have severe deviated septum and it is hard to get air through my nostrils even without a mask. I tried full face masks but they leak so much that I have to wear them incredibly tight which is very uncomfortable. I weigh about 180 (I am female). I am ready to try the Inspire but I think I might weigh too much.

sounds like you need to get that septum fixed first thing.....

It’s been some time since I looked at anything to do with Inspire and at that time from my vague recollections it was prohibitively expensive and still relatively new and presumably somewhat experimental.

If you have current information it might be useful to this forum.

Others in the forum might be able to offer useful advice and personal experiences when it comes to masks and other CPAP gear.

I felt like I was suffocating every night.

Probably too much start pressure.

Most nights I can't fall asleep wearing the mask, but as soon as I take it off, I'm out in 2 minutes.

Wear it during the day.... while sitting up to get used to it.

I am afraid that I cannot offer much help other than some suggestions on how to minimize the discomfort in using a CPAP machine. I did not take well to using a CPAP and more than once I considered getting up in the middle of the night and throwing the whole darn thing out the window. But, I toughed it out, and now actually look forward to putting it on each night. I have "made friends" with the machine now that I have made many small adjustments. I believe I am now on about mask #6. However, to give you suggestions, I would need to know exactly which machine you have, and basically how it is set up. Ramp method, minimum pressure, maximum pressure, etc. Also would need to know exactly which masks you have tried, or which one was the least irritating. I too gave up on full face masks for exactly the same reason you give -- could not make them stop leaking.

That is about all I can offer.

I am a dentist working in dental sleep medicine. I would respectfully disagree that it would be impossible to fabricate an oral sleep apnea appliance for a patient who is even a severe gagger. I have done it many times but it does take some creativity. I will give you one example. An appliance called a DreamTap is designed to fit over all the teeth. Obviously, you could not wear that. However, a variant can be created that fits over just the upper and lower six front teeth and I have yet to see a gagger that can't tolerate THAT. Getting the impressions can still be a problem, but digital impressions and some other special techniques can overcome that too. Arthur B. Luisi, Jr.,D.M.D.. The Naples Center For Dental Sleep Medicine.

I hope you find something that helps soon. I’ve been using mine for 3 months so I’m not sure I have much to offer you from experience that can help. But if you have tried “every mask out there” maybe the problem is a mental hurdle. Have you tried a psychiatrist or maybe even hypnotherapy to try to get over the suffocating feeling? Maybe meditation before you go to bed? What about some medical marijuana to help you relax before going to bed?

One thing I often have to do when I put my mask on first thing at night is I will sit up and breath deeper to start and start counting my breaths. Then my thoughts will eventually wander on to something else, and before I know it I’m breathing 100% normal and I’m ready to go to sleep. I hope you find something that helps!

So Tired, I completely understand your dilemma. I have struggled with CPAP for almost 30 years. I most assuredly feel better when I can get in 4-6 hours with it but sleep so much better without it. I usually start with it on but sometime during the night, I pull it off. It has helped by switching to an automatic setting. I would highly recommend trying that. I do better with the nasal pillow mask. I have tried too many masks to count over the last decades and that is what I keep coming back to. I have also tried dental devices that I find on the floor when I wake. I have had several surgeries in the early days. It has been a lifetime struggle. However, I don't think I would be here today if I had not kept trying to use it at least some each night. I do play a beat my score game with the "MyAir" results from one night to the next. That makes me a little more compliant. All of that being said, there are new therapies coming and one such that has arrived which is known as Positional Therapy. This is not like the old pillows method that you really don't know if it works or not but an FDA Approved Positional Device that is put out by Phillips Respironics. My best advice: Keep on keeping on.

Hi SoTired,

first off, I'm very sorry to hear what you're going through. It sounds like a lot to deal with and you must be quite frustrated by now. I can relate to CPAP intolerance. I tried using it off-and-on for three years, though I couldnt find settings that worked for me, so I abandoned it altogether. For your information, I have UARS, after being misdiagnosed with mild OSA.

I have spent A LOT of time researching alternatives to cpap and familiarizing myself with the patterns of treatment response by sufferers of oxygen-related sleep disorders, and the first thing I would like to tell you is that you're not alone in the situation of being unable to tolerate CPAP. It is not your fault, and CPAP intolerance is a common theme in the sleep-apnea community. Do not beat yourself up for being unable to adapt to its unnatural feeling.

The second thing I'll say is that, from my personal experience, most doctors have very little to no understanding of sleep apnea, and I live in an area of the world where they're lionized and regarded as top quality. It has been an absolute horror show to get to the point of treatment that I'm at because of their ignorance. This sounds like I'm just ripe with vitriol, but it's simply the truth. For example, it took me 5 times of going in to the clinic explaining that I think I have sleep apnea before I finally was prescribed a sleep study. They would just tell me I was too young/too healthy, then send me on my way with sleep-medication prescriptions. Anyways, I dont want to go too far into the weeds here, but my point is that sleep apnea is rapidly evolving science, and, from my experience, doctors have on more than one occasion been misinformed/unhelpful/narrow in their thinking, etc.

The third thing I will say is that it's possible to desensitize your gag reflex. I know a sleep dentist who has helped patients overcome such gag reflexes, from minor to severe cases. Sometimes it took months, but the success rate is very good.

I wish to help you as much as possible, so please tell me a little bit more about your profile. What's your AHI? UARS or OSA? What part of your anatomy do you think is most responsible for your reduced airway? Do you typically breathe through your nose or mouth?

My final comment is that I encourage you to think of your case as an isolated one. There is an immeasurable amount of variance for the reasons people suffer from oxygen-related sleep disorders. The trick here in my opinion is not copying what worked for someone else but in finding what customized treatment fits your specific case. Dont give up on yourself, I'm here for you!