Here Goes... My Story With Sleep Apnea - Needing Advice

by James
(High country)

18 years old.- I was diagnosed in college, freshman year, pre-physical therapy- with severe OSA.

Anyway, I turned 38 in January, I have been homeless for 2 years now, maybe more, can't remember.

Last year, in what I call "a moment of clarity" I started again wondering about this SOSA thing they had told me about in college, I started the rounds of research at that point, and the more I learned, the scarier it all got.

It is far more than just simply not sleeping, I was able to tie a whole bunch of stuff together.

My grandfather's diabetes, and severe alzheimer's, and ultimate stroke, My father's quadruple bypass surgery at 55, and all of his severe sinus problems, his allergies, etc, are all being passed down to me, via DNA.

I have found research stating 8 genes that involve the mechanisms that underlie this disease.

Regardless, jogging my memory produced all kinds of tie ins for myself- I had chronic severe strep throat, constantly as a kid, chronic ear infections, and I always seemed to be on some kind of anti-biotic.

I went every week for years and then every other week for allergy shots with pops.

Bonus- I wet the bed until I think 15 years old, real fun stress trying to go to boy scout camp overnighters, and at the rank of "patrol leader", you know the big kid.

I do remember my kiddy doc mentioning that if I got strep ONE MORE TIME, she would have my tonsils out, which were always super inflamed and hanging down onto my tongue.

Well, I must have been getting older at that point and more rebellious, I don't remember ever seeing her again, so hence the tonsils remain intact.

The weird thing is that it did eventually go away and at this point, I'm rarely sick anymore, chalk it up to eating organic all these years and fresh air and clean water,-And avoiding all the shit Monsanto has been doing to our food chain - evil bastards. How in the F citizens and politicians allow this stuff is beyond comprehension!

But before I get side tracked- Now I learn that taking our tonsils and adenoids in kids with OSA CURES THEM!!! WTF AND they dont recommend these for adults- complications of all the full grown nerve connections I think. Yet all the surgeries they do have these days- DON"T WORK!! and show over the long haul, REALLY don't work and with lots of complications. (excluding the more invasive ones- trach, etc..)

Example- why the hell is the pillar procedure so popular, when most research I see says that the genio-glossus muscle is the main culprit or a deviated septum , another one that seems to be prevalent? Not to mention the muscle atrophy aspect I mentioned earlier.

So get this, I have had 2 sleep studies one 20 years ago, and one 1 year ago duplicating the first's results. The last one the Hospital waived the costs due to my amazing downward spiral, i.e- being homeless, and for the record, camping in the wilderness is a choice with numerous rewards.

But if you are reading this from a city, grasping mother nature may not be one of your specialties, and I'm not going to spend one second convincing you are on the wrong side of the fence. Actually, the fact that most people need the city to survive lends to nature being wide open for the rest of us and we like it that way!

Getting back, where was I anyway!? ok SO can someone please tell me of more conclusive evidence that Upper Airway exercises work! And that I can avoid this F'n machine that I can't "TOLERATE"- love that word!

It's set so damn high to keep my airway open that I CAN"T fall asleep with it!

Has anyone had any luck with non compliance and the resmed s9 w/ humidifier that specifically states it's for people who are non compliant!?

OK what else- I bite the hell out of my nails, always have, it's gotten really rediculous these past few years.

I have also been forced to deal with anxiety and ocassional high blood pressure in my 30's oh yeh and I have always had a low pulse rate and have always heard that that was due to me being an athelete and "in shape".

This last sleep study revealed that I in fact get NO REM SLEEP WHATSOEVER! and that the low heart rate is due to an arrythmia, supposedly slight and all my teeth seem to be leaving me as well, eyesight is steadily getting worse too and like one of your other blogs mentions, I too have seemed to have aged alot these past 2 years. My memory is shot, I call it partteimerz' or some of the timeimerz.

And I barely have a will to live, with extreme manic depression, and no detectable energy.

I wake up between 11 am and 3pm everyday, since as long as I can remember, ( I had a great tolerant wife and I had become self employed shortly after giving up on college as a interior exterior painter, which morphed into decorative finishes, (*fauX) mural, venetian plaster etc.) I pulled it off with flying colors, when we had a functioning economy, and it allowed me to keep the highs and lows pretty even keel.

Not to mention She helped with that balance, now it's just me- no friends, well a couple are left, no family contact to speak of, and no chance a landing a job let alone keeping it.

My track record is such that any time I have tried to get a job, I tend to get fired shortly after for oversleeping, i.e- being late all the time.

I feel like I'm forgetting something pertinent,.... nails, bedwetting, arrythmia, oh yeh, I had found an abstract stating of a case of an individual with non-entrained circadian rhythm with OSA or SOSA can't remember, but essentially, he would keep going to sleep later and later and waking up later and later, I believe was the gist of it. That's me too. My sleep scheduling is so random oh yeh, and the shitty thing is that I seem to have developed a case of insomnia to boot, co-morbid fun!

I don't sleep and now I can't sleep and am sort of afraid too as well, I have heard of a few people dying in there sleep lately, OSA, not diagnosed, or playing roulette with their machine and lost.

Like I said, I'm shooting for the living forever thing, so if any of this jibberish adds up to a revelation revolution, I love to hear it.

I'm have been trying, desparately to leave the paint chemicals behind me as it HAS to be detrimental and create OSA complications. OH yeh, this is the one I forgot.

I also have a broken neck- fused vertebrae at c2-c3 old injury from freshman year of college when a lady rear ended me at a stop light, then 5 years ago, I was hit again by another dumbass not paying attention, this time the pain was nearby the old pain but felt slightly different so I had an MRI done to reveal the 2 fused vert.

The catch is that they are right at the exit points of the phrenic nerve and it controls the Upper Airway muscles! Another revelation that came recently in the form of an advertisement for an herbal remedy for OSA.

It also stated that having big trap muscles exacerbate this impediment on the nerves of the Upper Airway.

I have big traps as well- leftover from high school weight training, and I also learned recently that the same neurons (can't remember the names) that support the airway opening change over (get remodeled) to neurons that actually help keep the airway closed instead! (when you chronically stop breathing) WTF again! really! damn.

Now is that attributed more to Central apneas cause I don't have them- although two appeared on the sleep study results while they were playing with the psi levels I think, or it might have been when they determined and set the psi at 14, and then they appeared in response to my brain trying to keep up with the air pressure. sounds more likely.

OK that's all I've got, sorry again for the ramble, if any light bulbs go off, please give me a shout, I too, want some sort of real life again, and ps why in the hell does everybody have this in the first place, can we start examining how far back this is supposed to have existing and where it came from.

I'd suggest looking at all the war vets first for exposure to something, wouldn't you? It's worldwide thou, I dunno. Peace and thanks in advance for any sound advice. me

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Feb 13, 2012
My my my
by: Anonymous

Sounds to me like you have more to deal with than simple OSA problems...and living in the woods with no electricity would create a problem in using a CPAP BIPAP or any other PAP machine to help you. IF you had access to electric power, a machine can be set to start out at a low rate as low as " 4 " to be comfortable while you are trying to fall asleep and over a programmable time period ramp UP to what is necessary to correct your apneas. So you would be sound asleep, hopefully, by the time the pressure was as high as you describe.

I don't know what kind of advice you are searching for here..and not being qualified to give you any.. I am merely a CPAP user, who would DIE without my machine..who has had a SON die from never being diagnosed in time and treated with one..and would share that lives are saved by using a CPAP or other machine to help you continue to breath at night while you are sleeping. To breath or NOT to breath..THAT is the question...and a LOT of other health problems fade away when that ONE feat is accomplished.

Feb 14, 2012
To breathe or not to breathe...
by: Remy

Well...I must say, this is the longest and complex life story related to sleep apnea that I received until now. Above all, I believe that you will need more than a couple of words of encouragement. I wish I could do more than just words.

You asked if the oropharyngeal or tongue exercises are effective in treating sleep apnea. I can't respond from my personal experience, because I keep my apnea episodes under control with positional therapy. I don't practice those exercises.

However, there are patients who perform the upper airway exercises in combination with weight loss, good sleep hygiene, yoga, playing didgeridoo and CPAP. Then, when they feel better, they start to sleep without CPAP but continuing with the rest of alternative treatments. And then, one by one, they eliminate all the therapies.

Unfortunately, this method doesn't work for everyone. In fact, most of the patients will use their CPAP all their life. But it's a lifesaver.

I'm wondering... If someone is cured of sleep apnea, would he return to forums saying that his treatment method was effective? I would like to see that act of kindness, but I think most of them are busy with their new life. And I'm happy for them. I really do...

I feel from your story that you are very frustrated and depressed. What you need now is a real friend to help you face these difficult times. Is your wife still by your side?

May 01, 2016
I feel you
by: Anonymous

You are not alone with the symptoms you shared, and I thank you for doing so. I never really connected the bed wetting with sleep apnea. I too wetted my bed until about the age of 24 or so.

I am age 53, about 20 years ago I was diagnosed with sleep apnea, since then j have had uvulopalatoplasty, adenoidectomy, and septoplasty. I have used my CPAP religiously for the past 20 years and Although it does not cure sleep apnea or even work to make me feel "normal" if I don't use it I heavily regret it the next day.

The nonsensical thing about this is that Some days I am just out of it mentally, feeling anxious and at times feel that I am losing my marbles and that is some scary place to be.

The nonsensical aspect of this bisbthay I continue to be productive at work, but feel that I am beside myself all the time ( and by beside myself I mean that I do, say and think, but it does not feel like it is me doing this - as if I am watching myself live life but not being part of it - if that makes any sense).

Anyways, you are not alone and I like you and the other person on the post would like to see someone post the process that worked for them in living life to the fullest and feeling human, in addition, or not to CPAP.

Thank you for your post, as it shared stuff that I had never seen anyone else connect to sleep apnea. Be well...

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