CPAP Endurance
I've been reading a few other forums recently and they were rich in suffering and complaints and good old fashioned misery and emotional drama so it occured to me that this forum is lacking in those most necessary human traits and someone should do something about it. Set an example so to speak. Tell a good old fashioned sob story complete with the requisite misery and suffering and a generous dose of high drama thrown in for good measure.
But first a caution about this kind of writing:
DON'T TRY THIS AT HOME! It's bad for your morale and disposition unless you have had years of practice and even then it is not advisable and I know that Sierra will most certainly frown on the deliberate use of negativity. (low rumbling percussion music)
So here goes folks, grab a drink and some tissues because this is my very own pity party! (bright bouncy music)
Once upon a time in a far off corner of a far off kingdom there was a fidgety little boy who just couldn't sit still. He lived in a rough little cabin on a remote mountainside and rarely saw other people. (pan flute)
He dreamed often of falling and woke up in terror to discover he had injured himself and was being restrained
Even so life was fun and the world was a wonderful place and he loved the solitude of the forests and meadows. He would tickle trout from the local creeks and catch rabbits for supper and life was an endless delight. (souring sax solo)
One day his family moved to the big bad city and the idealic world of his childhood was lost and he hated the city but he found that he could anticipate the nightmares and block them so they never troubled him again and he gradually adapted as he discovered the parks and rivers and those secret wild places on the edges of the city (curious hesitant music)
He even found other sources of food like wild blackberries and trees loaded with unwanted fruit and gardens ready for planting and harvesting.
As he studied this new world he learned to survive but the restless legs never left him.
For a boy who didn't want to be seen those jumpy legs were a perpetual liability on the schoolbus and at school which had become the new nightmare.
Time moved on and he finally escaped from the tortures of school and began his real education.
Learning about life and friendship and love and family and the widening world around him. (uplifting music)
He was always watching and still a loner and reluctant to engage.
He lived in stealth mode, self employed and adept in many tasks doing any number of different jobs.
Then he finally met the love of his life and his lonely days came to an end. (lots of soppy embarrassing stuff and violins)
Having a partner made him aware that somewhere in the past he had acquired Periodic Limb Movement Disorder but once again life goes on and the children arrive and business prospers
Until a 30tonne load of hardwood fails to stop and his tradies van is waiting at the lights ahead. (tragic music)
So the mountain boy with a wife and mortgage and three toddlers has major problems now and that big bright world of hopes and dreams is lying broken and smouldering so he spends years searching for answers in the futile hope that they might lead him to solutions that simply don't exist.
He gathers new labels in his quest for recovery. Asplenia Encephalytis PTSD CFS but finds no way back, no resolution. (taunting music)
Skip forward 20 years and the kids are all grown up and the world has moved on but he's still stalled and gaining weight and snoring and getting more violent in his sleep and his ever watchful wife says he often stops breathing but does he listen? Of course not! (marching tunes)
He has other troubles to worry about. His business has been failing for decades, his properties that he bought to develop are now abandoned, his house is falling down around his ears, his memory and congnitive function is failing, his sex life is a distant memory, he spends his days like a zombie. No longer dwelling amongst the living.
Years pass by and things get worse REM Sleep Behavior Disorder joins the party and life gets that much more perilous.
He wakes up living his nighmares, literally. Shouting, punching, kicking, launching himself out of bed in attack pose.
Things are getting damaged, lamps, tables, devices, wives, walls, toes .... (sharp clashing cymbals)
The frequency and severity increases (fast tempo)
He trains himself to sleep only on his side and on the edge of the bed and starts moving things away from beside the bed and refusing to sleep with infant grandchildren. Eventually he moves to a separate bed but now the fatigue and apnea become intolerable so he finally seeks help. (theme from Star Trek)
The apnea is so bad that he is issued with a hospital machine within days of first mentioning it to his doctor.
This is where the real story begins. (spooky music)
He revels in a couple of nights of sheer relief, just being able to breathe again. But the mask leaks so then he has the fun of trying different masks and getting the settings right and for a brief moment in time it all seems worth while. He figures he has a handle on this. It's not that hard and he can get used to wearing a mask for the rest of his life. (uplifting music with a hint of hope)
And here begins The Longest Sentence (You might want to skip this part.)
But the fatigue and the fog are still there, and the mask is still leaking intermittently and sometimes it takes a bit too long to get settled then the hose springs a leak and the mask gets dislodged during the night again and again and again and the hose starts dripping then he wakes to find the machine has shut down and the mask is still leaking then the hose starts zapping him and the mask still gets dislodged and he gets the flu and nothing is working properly then the humidifier stops working then the mask starts leaking again and again and again because the straps are getting slack and the hose starts zapping him again and the shuts down again and the mask keeps getting dislodged and the machine finally gets too dangerous to use then the new machine needs setting up and the mask takes too long to get settled and the hose starts dripping and he buys a new mask and it takes a while to get settled and it gets dislodged at night and the humidifier is playing up again and the mask is still leaking and the humidifier needs adjusting and it goes on and on and on and the fatigue is debilitating and the fog is endless and the mask is still leaking intermittently and sometimes it takes a bit too long to get settled then the hose springs a leak and the mask gets dislodged during the night again and again and again and the hose starts dripping then he wakes to find the machine has shut down and the mask is still leaking then the hose starts zapping him and the mask still gets dislodged and he gets the flu and nothing is working properly then the humidifier stops working then the mask starts leaking again and again and again because the straps are getting slack and the hose starts zapping him again and the shuts down again and the mask keeps getting dislodged and the machine finally gets too dangerous to use then the new machine needs setting up and the mask takes too long to get settled and the hose starts dripping and he buys a new mask and it takes a while to get settled and it gets dislodged at night and the humidifier is playing up again and the mask is still leaking and the humidifier needs adjusting and it goes on and on and on and the fatigue is debilitating and the fog is endless and the mask is still leaking intermittently and sometimes it takes a bit too long to get settled then the hose springs a leak and the mask gets dislodged during the night again and again and again and the hose starts dripping then he wakes to find the machine has shut down and the mask is still leaking then the hose starts zapping him and the mask still gets dislodged and he gets the flu and nothing is working properly then the humidifier stops working then the mask starts leaking again and again and again because the straps are getting slack and the hose starts zapping him again and the shuts down again and the mask keeps getting dislodged and the machine finally gets too dangerous to use then the new machine needs setting up and the mask takes too long to get settled and the hose starts dripping and he buys a new mask and it takes a while to get settled and it gets dislodged at night and the humidifier is playing up again and the mask is still leaking and the humidifier needs adjusting and it goes on and on and on and the fatigue is debilitating and the fog is endlessand the mask is still leaking intermittently and sometimes it takes a bit too long to get settled then the hose springs a leak and the mask gets dislodged during the night again and again and again and the hose starts dripping then he wakes to find the machine has shut down and the mask is still leaking then the hose starts zapping him and the mask still gets dislodged and he gets the flu and nothing is working properly then the humidifier stops working then the mask starts leaking again and again and again because the straps are getting slack and the hose starts zapping him again and the shuts down again and the mask keeps getting dislodged and the machine finally gets too dangerous to use then the new machine needs setting up and the mask takes too long to get settled and the hose starts dripping and he buys a new mask and it takes a while to get settled and it gets dislodged at night and the humidifier is playing up again and the mask is still leaking and the humidifier needs adjusting and it goes on and on and on and the fatigue is debilitating and the fog is endlessand the mask is still leaking intermittently and sometimes it takes a bit too long to get settled then the hose springs a leak and the mask gets dislodged during the night again and again and again and the hose starts dripping then he wakes to find the machine has shut down and the mask is still leaking then the hose starts zapping him and the mask still gets dislodged and he gets the flu and nothing is working properly then the humidifier stops working then the mask starts leaking again and again and again because the straps are getting slack and the hose starts zapping him again and the shuts down again and the mask keeps getting dislodged and the machine finally gets too dangerous to use then the new machine needs setting up and the mask takes too long to get settled and the hose starts dripping and he buys a new mask and it takes a while to get settled and it gets dislodged at night and the humidifier is playing up again and the mask is still leaking and the humidifier needs adjusting and it goes on and on and on and the fatigue is debilitating and the fog is endless.
Well you get the general idea right?
So he's not so bright and he puts up with way too much before he does anything about it but is his story that different from so many others? (challenging trumpet notes)
He's been chained to that CPAP machine for more than four years now and the problems are still there and they are real problems serious enough to nullify the function of the machine and frequent enough to demand constant attention and consistent enough to warrant perpetual vigilance and precautions and to require the endless adjustments that are necessary to prevent them from multiplying and the fatigue intensifies and the fog deepens. (soundtrack from Jaws)
He has endured through 1,500 nights with the machine and reckons that he had to manage 3,000 events that required action like moving his head and resettling the mask or turning the other way to extract himself from the hose. (tedious classical music)
He figures it took a further 10,000 actions like minor adjustments to equipment and controlled positioning to anticipate and avoid more than double that number of events. (theme from chariots of the gods)
He is getting seriously cheesed off because he was too tired to begin with and this process of endless anticipation and awareness of position and equipment is even more tiring and seriously disrupts quality sleep (not that he remembers quality sleep) when he adds the constant vigilance that is required to prevent problems in advance and the constant alertness required to rectify all those that he failed to prevent it becomes an endless endurance. (german marching tune)
This level of sustained effort and awareness in conjunction with the endless disruptions generates increased
fatigue (dragging music)
confusion (enigmatic music)
intolerance (annoying music)
resentment (jarring music)
despair (blues music)
It also generates a festering anger which is amplified by years of broken sleep and perpetual fog. (Ominous music)
He desperately wants to quit. Toss the machine and take his chances but he knows that it's way too late he's too far gone and too dependent. (lingering dirge)
Quitting is not an option so he resigns himself to ignore everything and just survive but is just surviving enough? (solo pan flute with doubtful ending)
Btw my wife says if I try this again (Pathetic Pity Party) I will be able to add pending divorce to further heighten the drama! :O
A couple of sayings come to mind. One is that we cannot change the past, but we can learn from it and change the future. Another is the answer to the question, "how do you eat an elephant?" - One bite at a time.
With those thoughts I would perhaps not divide the issues up into single tiny bites, but bundle them into small boxes. For example:
Box 1 - Sleep related disorders
It strikes me that these issues can be related and that one solution might work for them all. I have been doing a bit of research on the RBD. It seems like the treatment recommendations are pretty consistent. Melatonin is the first choice and if that does not work then clonazepam is next. The issue with clonazepam is that it may aggravate obstructive and/or central apnea, so that is something that needs to be watched closely. I found some evidence that if clonazepam does not work there may be some benefit to trying one of the Z-Drugs like Ambien (zolpidem). I am no medical professional and you would want to go down this road with the help of your neurologist, and if there are impacts on your apnea, the sleep doctor too.
Box 2 - PAP Equipment Mechanical Issues
These would seem to be the easiest to correct with a new machine, new heated hose, and automatic humidifier. The mask part as we all know is a never ending search. My biggest breakthrough was realizing I really did not need a full face mask, and a nasal pillow even with mouth taping and a chin strap is a better solution. But each will likely come to their own individual solution. Small things like a satin pillow case, and a down alternative fill pillow can help too. Forums like this are good to get ideas from but we all need to choose the fixes that work the best for us.
Box 3 - Illness
I'm a believe in the flu vaccine and make sure I get it each year. I got my first one way back in 1975 or so when there was the first big H1N1 scare. It was the vaccine that was supposed to have killed a bunch of people, but I got it and survived quite well. The even bigger issue is making sure to get the best vaccine for pneumonia. Seniors don't really die of the flu, they die of the complications from flu like pneumonia. There are two vaccines needed to get the best protection. Ideally one should get the Prevnar 13 one first, and then the Pneumovax 23 a year later.
Box 4 - Apnea Monitoring
I'm not sure what your specific issues are, and how you are doing with AHI. I find SleepyHead to be the only reasonable way to view the data and make some sense of it. If you were to post some daily reports that concern you, I would be happy to comment. Sometimes some fresh eyes from others can uncover opportunities.
Hope that helps some. Again, my suggestion is to separate the issues into small packages and address each package independently. Small changes over time in the right direction can add up. The Japanese call it Kaisen. The idea is to make small changes but with each one an improvement over the last. Do everything you can to not slip back. They believe this works better than the concept of major breakthroughs, followed by regressions.
Well I doubt that I'd like elephant Sierra unless it was marinated in spiced Amarula and served with a nice Piccalilli relish but as per usual your logic is sound and your method commendable.
I do have one query though.
Do you realise you've ruined a perfectly good story in your valiant attempt to fix things? :P
Your story is amazing. Not that it's much different than many but that you actually wrote it and shared it. And in a way that is uniquely yours. Would you be willing to share it beyond this forum? Is there a way I can "talk" to you besides on these posts?
If you are determined to fix things Sierra then what's wrong with this picture?
The dates at the bottom were reset when I returned the machine because the humidifier was playing up. (I've had the Resmed since 2015)
I haven't been aware of any major leaks in recent months.
Do they really matter?
I know. You're going to go on about 30cm wide permanent tape with kevlar reinforcing but that would be more fun than I can handle at the moment. :(
