Biguglygremlin

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

Some good questions Ruby.

My wife had been harassing me for ages about apnea but it was only when I was desperately tired and in a perpetual fog and waking up feeling like I had been run over by a bus that I actually looked up the subject on Google and learned about OSA and the consequences.

I went to my local doctor and she asked about symptoms and gave me an Epworth Sleepiness Test to fill out and informed me that I would need a sleep test to access the hospital sleep specialist. She suggested (because of cost) that I hire the equipment from our local pharmacy and gave me a request form.

I got the machine that same day with basic verbal instructions on how to set it up and the next morning I took it back to the pharmacy.

2 days later I received the report which I immediately took to my doctor.

She gave me a referral to the hospital sleep specialist and rang him to request an urgent appointment.

I got an appointment within 3 days and he simply reviewed the sleep report and filled out a bunch of papers then told me to go see the sleep clinic people.

He told me briefly about the purpose of the pressure and the impact on central events of going too high and the problems with the digestive system.

I told him that I was about to leave the state so he noted on the prescription (which simply said start at 12) that they should show me how to access the clinical settings on the machine.

I went straight from the hospital to the sleep clinic and picked up the test machine and mask with a brief demonstration of function and took it home. The next day I flew out of state and began the process of figuring out masks and settings.

That was a week after first raising the subject of apnea with my doctor.

I returned with the machine a month later and was handed a new machine and mask of my choice all still in their boxes. I took them home and set them up to the specs that I had reached by trial and error.

I had no choices when it came to the machine but I did insist on the mask that I wanted.

I don't feel that there has been any real followup or support but that may be largely my fault. I am certain that the normal pathway and support systems are there for most people here although they do take a lot longer to get there.

I have since done the usual research into masks and such and dropped into various sleep clinics to check out their gear.

After 4 years of going it alone I had issues that I couldn't find the answers for and so I came to this forum.

I will probably linger for a while longer because it is fun then try once again to get back out into the real world.

This is interesting particularly because the Nuance is the mask that I've been using and yes the pillows do get a bit out of shape over time and as most moulded things have a memory that can be reset by heat and these are possibly held out of shape by the gel then I can see how heat might free them up to remember their original shape.

I soak mine often in very hot water but not actually boiling.

Will give it a try one day. :)

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

Talking about masks has it arrived yet and does it work?

Yes you still have a ways to go Sierra but I notice you have become a Sleep Innovater so maybe you can find a working mask in as little as 6 years now. :P

I didn't mean to imply that it was wrong to post other subjects here nor that I have any entitlement to have any say as to what is posted here because I am only a newbie and because I started this thread about RBD which is also not related to apnea and I've launched other subjects that are pretty much unrelated to everything! :O

That's because I've been taking your advice Ruby and talking about anything that might cause sleepless nights. There are sooooo many things to lose sleep over.

Like the state of the world and whatever happened to the good old days and how you just can't get good help anymore! :)

Then I could tell stories about my childhood, barefoot in the snow, or was it the cardboard box in the middle of the road? I get so confused! :( https://www.youtube.com/watch?v=_nL6isGPhzk

(please note that they had sleep problems back then too!)

On the subject of ancient history, I have had RLS myself since childhood and until recently just viewed it as one of life's eccentricities but I am fortunate that although it might be distracting and inconvenient and irritating to others (just sit still!) it rarely causes me serious pain as long as I stay away from electric blankets and polyester bedding and clothes dryers and plastic table cloths and nylon carpets and dry windy days and women brushing their long flowing hair on windy days and ............

You're right Ruby. It can be a real pain sometimes! :)

RBD is not that common Ruby and I don't think it's weight related so this forum is probably not the best place for discussions on movement disorders.

Unfortunately REM Sleep Behaviour Disorder rarely goes away. It is a degenerative disease that usually progresses to Parkinson's or dementia with lewy bodies.

As to forum function I haven't had much experience with forums and this is the first one I have involved myself in but it does seem that few forums focus on actually helping and educating in the way myapnea.org does atm.

Other forums seem more focused on airing grievances or sharing feelings, which have their roles, especially if you take the view (which I don't) that managing your own health and treatment is inappropriate.

Hello kmurphy831,

What do you think of the implant process and the Inspire device and function?

Would you recommend it for others and if so up to what level of OSA?

Did you pay for it out of your own pocket or what motivated your insurance to shell out that much money?

I expect we will hear a lot more about these devices over time but you are the first I have had contact with who has personal experience with an apnea implant device.

You've come a long way already Singingkeys

Keep at it and you have to get answers eventually.

In your circumstances I would prepare a document with my medical history laid out as concisely as possible so that everybody I see will be able to embrace the whole picture and better understand where to look for the missing pieces of the puzzle.

It also helps me when at critical appointments because I am often too tired or confused to remember details or even make much sense especially if it goes for too long.

Wow it sounds like you've been through the works!

Whatever happened to boring stuff like EBV, PTSD, CFS or whatever other acronyms are out there for the Vague UnDiagnosed Stealth Disorders. VUDSD (my creation) :)