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My bizarre and ancient apnea story
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Author:  Daniel Gagner [ Thu Aug 17, 2017 5:54 pm ]
Post subject:  My bizarre and ancient apnea story

Hi, I'm Dan from Maine...New to this forum and fairly new to cpap but not new to apnea.

I've recently purchased an apap machine on my own. I had a sleep study in 1991. I was 36 years old. I brought home a camcorder from my school (I was a teacher) and taped myself sleeping. I brought the tape to an ear, nose, and throat specialist. He knew about sleep apnea but at that time not many doctors dealt with it and he was interested that I had actually taped myself and brought it to him. At that time he recommended an operation. I had had severe tonsil infections as a teen and the back of my throat was a mess. I could cough up my uvula and place it between my teeth. (The thing that hangs down in the back of your throat). I had to travel in Maine to one of the few places that did a sleep study. It was new stuff around here. I wasn't breathing 20 seconds out of every 60. After that I had the operation that removed all the loose scar tissue in the back of my throat, my uvula, and also straightened out a deviated septum while at it. The operation was successful and my throat is smooth and cleaned out when you look in my mouth.

How did I know I was better? Well, I originally had severe symptoms of apnea. I'd fall asleep in the shower in the morning. I could not drive longer than 20 minutes period. I'd wake up in the middle of the night with burning acid dripping out of my mouth onto the floor reminding me of the movie Aliens. As a teacher my fatigue was becoming debilitating. After the operation; the next day, all symptoms stopped.

To this day I attribute a curious thing to my early apnea. As a teacher, I used to learn up to 150 student names in about two weeks. With the apnea, after time, I could not learn them all by Christmas. I was hot on computers before they were hot. I made a database for a grade book and took all my students pictures from the office collection and made a visual grade book for myself. I knew the student. I just couldn't always put the face to the name. Strange I know. Apnea did something to my head over time.

Jump ahead about 20+ years. My apnea symptoms didn't return. I could drive with my camper all over the country for 5-6 hours a day with no fatigue. Yes I'm getting older and fall asleep on dull TV programs but I'm not fatigued at all and have no daytime or nighttime sleep issues. But.... My wife has long told me that I stop breathing a long time before sucking in and breaking through to a long breath with a heavy snore. I do this almost all night. Again, a video, this time with a small camera, shows that she's right. Apnea like before 20 seconds of no breathing out of each 60. But no other outward symptoms during the daytime or night.

I've been the sleep study route. I didn't want to do it again. I've studied this stuff for years researching online. YouTube is amazing for this stuff. After awhile I finally decided on a Respironics Dreamstation 500 and the Dreamwear nasal mask. It's an apap machine. I have learned to change the settings on my own and play with them. My initial educated guess at settings gave me an AHI of around 10. A lot better than I expected. I understand from my research that this is in the 'mild' range for apnea. I'm sure it was much higher before the machine. Adjusting the low and high pressure settings has brought my apnea down to and AHI of around 4.5. I"m still working on tweaking things. I Understand that the AHI is a generalized conglomeration of readings and there is more to it, and I see all of those readings in the Sleepyhead software and I'm learning what that conglomeration of setting means. Even though I have no 'issues' related to my apnea I've decided to go this route as I do understand that it can affect things internally over time.

A few interesting observations.

I ordered my machine on Amazon.... Two days later it's no longer available. Were they selling it to the public without a prescription illegally? I don't know if that's the case or not.

When I opened the box the first paper on top said "these are physician settings directions. Remove this document before giving the machine to the patient".

When I used the Dreamstation and Dreamwear headgear the first night I fell asleep in my usual time, about 10 minutes and slept normally. I guessed right that I am a closed mouth sleeper and the machine indicates I have no leaks. The equipment works great and gives me no discomfort of irritation issues. The deep breathing that I do for a few minutes before the machine adjusts is a bit unnerving though.

I like it when the little screen says "congratulations, you had a good night". I wake up and put the SD card in my Mac and study my results.

I'm 62 years old now and hope I'm going the correct route doing it this way. I'm fairly capable and love 'science' stuff so I think I'm able to get a handle on this by myself. Heck, I've got daughters with advanced degrees from MIT, RPI, and Harvard Medical. I'm hoping maybe the fruit doesn't fall far from the tree and I'm able to decide that I'm doing the right thing and how to do it. Another slight tweaking of the settings tonight... with the results be better. We'll see.

Author:  NapByNap [ Sun Aug 20, 2017 9:29 am ]
Post subject:  Re: My bizarre and ancient apnea story

Dan (hi!), so many doctors don't treat sleep apnea, it seems all you can do is treat yourself like you are. I can relate to the fatigue, though not the memory part (not yet anyway). I have a theory Amazon has only some DME vendors selling extra machines, so they go on and off Amazon from time to time.

William Dement has a good book 'the promise of sleep' about Sleep Apnea, very good if you like to know more about apnea.

A few things I am trying, which are circumstantial (i.e. maybe not enough science to tell):
-Vitamin D3
-CoQ10 + PQQ
-Magnesium + Calcium in the night
-NAC (N-acetyl-l-cysteine)

I have also thought to try Yohimbine, since one study seemed to think it could help the brain better train itself to stop apneas, but the purity of this substance from supplement companies is suspect -- I am also not ready to start another drug just yet.

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