Maybe apnea, CPAP intolerant

I have had problems getting enough sleep for year, but I recently found I could get to sleep by using a cool pillow. Yes, that's very strange, but it seems to work for me. I now get 7 or even 8 hours of sleep per night, but I still wake up tired, and I lose energy in the afternoon. I snore like a MAC truck coming down grade with a jake brake. I have had sleep studies years ago. One said I had mild central apnea and another said I had mild obstructive apnea. I think it is obstructive apnea since my airways close off when I lie on my back even when I'm awake. I sleep face down.
1. The trazadone for central apnea made me hungover so I could not work. There was no other treatment for central apnea
2. I cannot tolerate the CPAP. I know some people benefit from it, but I am not one of them. I could post a very long acerbic and vitriolic rant about this contraption, but I do not want to dissuade others from at least trying it. I have observed it helping others -albeit a minority of patients.
3. I tried the mouth piece that pulls the jaw forward. I still snore just as bad, and I still cannot lie on my back and breath. It also made my jaw hurt. It is a common side effect called TMJ.
4. I was referred to a surgeon to see about some throat surgery. The doctor told me it was 3 very painful surgeries separated by 6 months, and it seldom helped anyone.

I can no longer complete a sleep study. I do not fall asleep with all the wires on my head and the camera watching me. It just creeps me out. As I roll over to sleep, the wires come off as well. I have lost weight (and gained it back and lost weight and gained it back...) but the problem does not seem to be effected by my weight.

The doctors have given up. Does anyone know of another approach to obstructive apnea treatment? I am breathless waiting for a suggestion.

GaryM

Hi, Gary! Sorry this forum is slow, try posting in more subforums/forums. Living with mental illness seems to be the busiest.
How about looking for a famous expert in this field and trying to get them to see you?

Jasmine,
Thanks for the reply. I come to the forum after the doctors have failed. Simply posting on a busier forum when my problem does not really fit the topic of the forum is probably annoying to others since it would likely be considered posted in error or I would get advice regarding some psychosis which is not my problem.

As for seeing a famous specialist, I would not know where to start. I certainly would not get a reference from doctors with whom I have an existing relationship. That's how I wound up with no help. To best of my analysis, it appears that a referral from a medical professional means the guy has a good golf game. It clearly has no bearing on the referred doctor's technical acumen.

To be more concise, I have not met a medical specialist in the last 20 years who could diagnose a shadow on a sunny day. They get paid for doing tests, but not interpreting the tests. The last tests I had were performed 5 months ago, and repeated calls to the doctor's office has not produced the test results. Two years ago, at another practice, the only way I could get test results was to show up at the doctor's office with a well known malpractice attorney at my elbow. I paid the attorney $800 for 30 minutes of his time. (The result of the test from the Cardiologist was, "I don't know what is causing the chronic chest pain and shortness of breath, but it doesn't sound serious.")

I am trying to get feedback from the forum since personal experience and anecdotes is far superior to getting nothing from the medical system. Getting nothing from the forum makes it on par with the medical system. I can no longer be disappointed.

but I'm not bitter
GaryM

Gary, it really sounds like you've been mistreated by the medical system and doctors. You could look it up on google and see what doctor has been doing research on this, who has a famous clinic etc.

Jasmine,
On your suggestion, I went back to the internet to see if I could find a reputable sleep specialist. I found names of lots of doctors. I could get their credit score, house payment, and boat payment if I really cared, but there is nothing to tell me if any of them are are decent doctors. I have tried the HealthGrades site and others in the past, but they are worthless.

No luck finding a doctor, but I did come across many hilarious links. Did you know that apnea could be caused by a tumor and that Jasmine tea cures cancer? Apnea can be exacerbated by being over weight. How would you like to lose 39 pounds in 8 days? (I'm pretty sure it involves amputation.) There were a lot of things like that. I call them larceny links.

I did come across a lot of sites selling dental appliances which do not work for me. Finally, I found door number 3 which suggests sleeping on my side or on my stomach which is what I already do. So, the problem was already solved, and I didn't know it.

However, if you know of a way to find a reputable doctor of any kind, I would love to hear about it. In fact, I am among 8 coworkers looking for a new General Practitioner. All we have is a list of 8 practices to avoid.

Thanks
GaryM

Uhhhhhhhhhhhhhhhhhhhhhhhhh! It is hard to find a decent doctor, isn't it.. I've had some "fun" experiences too.
How about looking for one who maybe teaches at a well known college or something like that? Maybe that's respectable.

I didn't know there are so many crazy links out there LOL Do you know that I've never had jasmine tea?

Yeah, finding a doctor is tough. I live about 1 1/2 to 2 hours from Johns Hopkins in Baltimore which is a highly reputable Hospital and University. I went to one of their cardiologists with the heart issue, and the doctor is too busy to return calls. (Heavy sigh) At least I got some nitroglycerin pills for when the pain gets really bad.

If you ever get in the mood to find bizarre links, just google "cancer cure" or "back pain cure." I find it important to laugh at them and not with them. It makes a nice change from laughing at cat videos.

I've had Jasmine tea, but not for medicinal purposes. There is an health food store not far from me that sells it. Jasmine is a strong tea, but I like it. I enjoy about half of the wide variety of teas I have tried. Of course, it is a matter of personal taste. The jasmine tea smells different than it tastes, and it has a lovely aroma. More than once I have warmed a cup and let it sit next to me just for the fragrance. Based on your pseudonym, you should try it.

Thanks for the conversation and suggestions
GaryM

They don't have a sleep specialist at that hospital?

Yah, I will find jasmine tea and some jasmine to plant

I think those links would freak me out lol

Apparently, I did not make my point regarding Johns Hopkins. I went to a cardiologist at Hopkins who does not return calls or provide results from tests performed last May. Should I be looking for a sleep specialist at Hopkins who does not return calls or report test results? It is an irritation I prefer not to repeat.

I have made attempts to find a sleep specialist. Last March, I suffered yet another sleep specialist that tried to offer me another CPAP. It didn't work just as it has never worked, and that was the only treatment she had. She told me not to come back until I could tolerate a CPAP. It is the third sleep specialist to tell me that. I'm a bad patient because I don't respond to the only thing they know how to do. That's not entirely fair. The other two tried to fit me with a dental appliance which I demonstrated did not work at all. Upon realization of the severity of the obstruction (while I was awake) they told me I had to use a CPAP or I would die. As they say in Monty Python, "I'm not dead yet." It has been about 10 years since the first CPAP failed. It keeps me awake, it is hard to breathe, it puts red welts on my face, it gives me a headache, and it falls open just to mention a few of the problems.

They don't seem to have a technology that will work for me. That must be my fault. At least, that is how the doctors see it. I sleep on my side, and I'm still alive, so I must have the best system that is available.

love that dead parrot sketch
GaryM

Sorry, I misunderstood. I don't know why they're being such idiots...

I wonder if there is any chance that you might have some kind of affliction that is causing this but they haven't found, that can't be treated like they usually treat most patients.. *paging doctor House*

Yah, that sketch is awesome