Forum · Looking for some support and guidance on next steps

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[-] PracticalAzureFalcon0046 +0 points · 3 months ago

So I was diagnosed with sleep apnea about 5-6 years ago. My story has been nothing but frustration. I was initially referred to a sleep doctor when my endocrinologist (I have diabetes too) asked me how I was doing and I told him I was having trouble sleeping at night and was waking up unable to breathe (literally felt like I was choking). That's the good part of the story, I guess. It goes mostly downhill from here.

He recommend a sleep clinic, so I went there. My first sleep doctor took one look at my throat and said you have sleep apnea because your mouth/throat is so narrow. Anyway, I had an in-home sleep study which confirmed the initial diagnosis. I had moderate to severe sleep apnea and I was prescribed a CPAP machine. I was so excited to get the damn thing because I had a diagnosis and a treatment and would finally not be so tired all the time. I was really, really elated. I literally couldn't wait to strap the thing on and go to bed.

Well, we tried the CPAP for several weeks without any success. I occasionally got up to about 2 hours of use once in while 4 hours, but never felt any better and wasn't making any headway. I would fall asleep and after 1-2 hours I would wake up in start. This had been my sleep pattern for several years at least. I was prescribed sleeping pills to help with the transition to the CPAP. I was hesitant, but I gave them a try. Well, I no longer remembered waking up, but the CPAP mask was lying on the floor in the morning and I was as tired as ever and had no increase in usage.

At my next visit, the doctor announced she was leaving the practice and that the other sleep doctor would take over my case. Well, there were only 2 doctors at that clinic and the one who was still there just had his case load doubled. I had my first visit with him and he asked why I was taking sleeping pills. I shrugged and stopped taking them. He said I just needed to keep using the CPAP machine and my body would get used to it. Well, this went on for about 5 months with various changes to air pressures and different masks with zero success.

I finally just stuck the CPAP in the closet and stopped going to that clinic. That was about 3-4 years ago.

Prior to all this my old primary care doctor had retired and I hadn't gotten new one. I finally got around to selecting a new primary care doctor and she urged my to try getting my sleep apnea addressed.

So about a year ago I chose a new sleep doctor based on some ratings off of various web sites and made an appointment. He told me he had a 95% success rate and that we'd get to the bottom of it. He prescribed a CPAP titration to be done at their sleep lab. It also showed moderate to severe sleep apnea although they never got to pressure where my sleep apneas actually stopped.

He said the problem with the initial CPAP was likely due to level of pressure needed to keep my airways open and what I could tolerate. He prescribed a BiPAP machine instead. So I became the proud owner of a Phillips Respironics Dreamstation Auto BiPAP machine. I think the part number is DSX700T11. I say think because there is nothing labeled as the part number or PN on the back of the device. But that does appear to be a part number when you google "dreamstation DSX700T11".

Well to make a long story, short. It didn't work either. We tried varying the pressure, slowly increasing it, adding a ramp, etc. All the stuff I have read about on various sites. Nothing worked and to be quite honest** I felt considerably worse when I used the thing**. After several months of this, I called time out. Up to this point I had done EVERYTHING that each of 3 doctors had asked me to do and gotten absolutely no where. The dreamstation has indicated that I had some central apneas as well as obstructive apneas. I asked what those were and was told that central apneas are times when I stopped breathing but there wasn't an actual physical blockage. I mentioned to my doctor that when I was going to sleep with the BiPAP on that I found myself not breathing and had to kind of "kick start" my breathing. I was still awake when this was happening. I counted one night and found I had experienced more of these episodes in the time I was awake than the machine even registered. He said not to worry about the central apneas and that they typically go away after while. That was not comforting. He ignored the fact that maybe the data was bad and even though he thought we were close I was feeling much worse than before.

I had had enough. I asked what my options were. He said we can try an oral appliance, we could try surgery or we could continue down the BiPAP route. I have to go to work each day and I was truly at the end of my rope, the BiPAP machine was so much worse than nothing I simply couldn't continue down that path. I did some research on my own and it didn't seem like an oral appliance would be very successful with moderate to severe sleep apnea. I also looked into surgery. It didn't look too promising either, but it was the route that I chose.

So I chose an ENT and went for my first visit. The ENT sprayed something down my throat that is supposed to help simulate what the airways look like during sleep and then looked at my nasal passages and throat via a small camera she stuck through my nose and into my throat. That was fun. She also noted that my mouth/throat were very narrow. She recommended removing my tonsils, turbinate reduction surgery and a UUUP. One of my turbinates was so large it had not only blocked the one nasal passage, but also pushed quite far into the other side of the nose and was partially blocking the opposite nasal passage. I had my tonsils removed and also had the turbinate reduction surgery. But the insurance company said it wouldn't pay for the UUUP without going the oral appliance route first. My uvula is not anywhere near symmetrical. One side is visibly larger that the other and I suspect this is one of the culprits. Anyway the surgery was quite painful and the recovery was longer than anticipated, but over all I feel better. Not 100%, but better than before. My wife says I no longer snore and that my breathing is no longer as labored at night.

Last night I had the sleep study at the lab to see if there had been any progress as a result of the surgery. I had a real problem sleeping that night, but I did get in 1-2 hours of sleep before finally calling it quits at 3:40am. The results of the study were that there was no change in my sleep apnea. It was the worst night of sleep in the 6 weeks since I had surgery and I was only asleep maybe 2 hours max.

So these appear to be my next set of options:

1) I've lost all confidence in my current sleep doctor. He recommends trying to LOWER the pressure on the BiPAP and see how that goes. I seem to be one of his 5% cases. All I get from him is BiPAP, BiPAP, BiPAP. When all you have is a hammer, everything looks like a nail.

2) I could also go the oral appliance route. That doesn't seem to hold much chance of success, but could be the pathway to a UUUP surgery. Does anyone know if an oral appliance will help much with a very narrow throat/mouth.

3) Get yet another sleep doctor and start again. Ugh

4) Call it good enough and quit while I am not completely behind. I don't feel terrible now.

5) Join a forum and hope someone might have some suggestions I might not be aware of. I chose this one because it doesn't call itself Apnea and then juts ram CPAP down your throat.

I've chosen 5 and also considering 2 as an strong second option. I'd welcome any thoughts or comments. I have requested all the medical records from my current sleep doctor. So if anyone wants some actual numbers, I should have those sometime next week.

Thanks in advance

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[-] wiredgeorge +0 points · 3 months ago Sleep Enthusiast

As you have already figured out, a doctor involved in any form of sleep therapy is going to stay in that path. If you stay in the positive air pressure path, you need to get a valid titration where the pressure can be set based on the number that worked. If you can't sleep during a study it seems to me that guessing and experimenting are not real effective ways to find the number. Since you can't find a sleep doc who can treat you effectively in the PAP therapy lane, perhaps another lane would yield more effective treatment. How does the old saying go? "Doing the same thing over and over and expecting a different result..." We have sleep dentists on this site who will likely offer alternatives. I don't understand all the medical but I do understand how a doctor with only means of treatment can keep pushing that treatment. Good luck and keep us informed.

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[-] sleeptech +0 points · 3 months ago Sleep Commentator

I can tell you that there is currently no approved and effective surgery for treating sleep apnoea (at least that is the latest word from all of my professional medical sources). There are a number of surgeries practiced, but they all have very low success rates, are very painful, have a high level of post operative infection and in the rare successful case the problem can return in a few years. This is why reputable doctors all advise against it. Sorry. Just the way it is.

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[-] GoodLilacSparrow8218 +0 points · 2 months ago

I am in the same boat though I have not gone down the same path. I thought my cpap would change my life for the better, but it is just a device from HELL. Is that too strong, there are many other words I can use but would probably be un-postable. I have tried off and on for over 10 years to get use to mine, just tried again last night. I slept for 1 hr then could not fall back to sleep. I f-ing HATE my cpap! I'm 59 not over weight, no alcohol, no smoking, I exercise 5 days/wk with free weights and jump rope. Have I stated I hate my cpap yet.... I am at the point where I think its a big scam since EVERYONE who goes for a sleep study NEEDS a CPAP! Really? How convenient is that.

I sleep like crap with or without it. I wish I never went for that lousy sleep study.

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[-] drgene5105 +0 points · about 2 months ago

Just FYI - my wife did a sleep study and was NOT diagnosed with sleep apnea and no CPAP recommended.

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[-] KindPinkGuanaco9781 +1 point · 2 months ago

I am also one of those people who has had a difficult time adapting to cpap but have persevered to the 12 month mark. I can confirm the following: the surgeries are not generally effective, are painful, and may not do much of anything to help sleep apnea. Also, I believe that if on a sleep study you only have a few hours of sleep, this is not enough data for the sleep lab to assess your true status.

Give what we know about all the medical risks for not treating cpap, i encourage everyone--yes myself included--to keep trying to get more and more time on the machine. My improvement has been slow as an ocean liner turning a sharp left, but I must admit that it is better than what it was before. Even if you have to take it on and off through the night--keep trying, keep trying, keep going for a few more minutes, a few more hours. Good luck to everyone!

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[-] sleeptech +0 points · 2 months ago Sleep Commentator

A few hours can provide enough data to draw some reasonable conclusion about your sleep in some cases. If you are obstructing every 30 seconds for 2 hours then it is safe to say that you have OSA. It may take more sleep to get a good picture of how your OSA varies with sleep stage and position, but sometimes even this can be pretty well represented in only a couple of hours. It is very variable. It is also worth remembering that you usually sleep more than you think you do when having a sleep study. The real question is are the people who are involved with your sleep study genuinely interested in your health (doctor, technicians etc) or are they in it for the money. I work t at a facility which is free to the public and we don't sell anything, so our only interest is in the health of our patients. However, I know of a lot of places that are established purely as cash cows for doctors. This can lead to a lot of people getting poor advice and the wrong equipment, which is why I post on this site. The better educated people are, the less likely they well get ripped off and the more likely they will get the best treatment possible.

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[-] KindPinkGuanaco9781 +0 points · 2 months ago

Sleeptech--We are all so glad you are here and providing responses to people's questions! I felt I had very good care but still had many questions along the way. We are fortunate you are here to post in response to the real need for help.

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[-] wiredgeorge +0 points · 2 months ago Sleep Enthusiast

I totally agree that it is refreshing to have a professional in our midst. While amateurs like myself can comment based on their own singular and subjective experience, professionals have much more to draw on and from a trained perspective. My experience is that sleep medicine is somewhat poorly served by lack of time spent with patients and lack of patient education. I am a professional in a completely different area and spend quite a bit of time giving advice and help even though not paid to do this. The professionals in the sleep medicine field don't seem inclined to do similarly. This forum has a few dentists who participate but no sleep doctors specializing in PAP therapy or ENTs that I know of. Sad. Other forums are as bad or worse as there are self-appointed gurus dispensing medical advice that is often just wrong or even dangerous. Thanks sleeptech... great to have someone who cares....

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[-] UnderstandingTanPeafowl8163 +0 points · 2 months ago

Sleep apnea and the tired feeling really sucks! As an amateur myself after reading your post, I would suggest trying an oral appliance. What have you got to lose. I failed on the CPAP route, and went to a Somnamed oral appliance which is rather easy to tolerate. My snoring stopped and I am sleeping through the night. It takes awhile but you begin to feel more rested slowly but surely. As I said, what have you got to lose?

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