My Personal CPAP Success Story
Okay, it's been over 6 months with the cpap now, so it's time for my story (practically a novel!).
It starts about 6 years ago when I started to have horrible sleep problems. My sleep was very fragile and I woke up many many (many!) times during the night until I started to be afraid that I wasn't going to be able to function properly enough to keep my job. I was hoping it was sleep apnea as I did a lot of research and this seemed like it was the easiest problem to deal with, with cpaps and all. I was puzzled with the results of various 'sleepiness' quizzes I took online because I wasn't sleepy during the day and I never fell asleep during the day. I was just plain miserable, out of sorts and my brain didn't feel like it was working properly, but I wasn't 'tired' or 'sleepy'.
I decided to have a sleep study so I went to a pulmonologist/sleep doctor and the results of the study were weird. It indicated I had 'mild' OA, but that wasn't my main problem. They diagnosed me with 'atypical sleep architecture' and told me I never got past stage 2 sleep, even with a cpap on and no apnea events. I asked if I had restless legs while I slept, but they said no sign of this. I definitely had restless brain syndrome, but they said there wasn't such a thing. Yeah, sure.
The doctor told me he had no idea what to do for screwed up sleep architecture and prescribed me a cpap and ambian.
Years later I found out that the respiratory company who sold me my cpap totally messed up. First they gave me a machine that they said would change pressures as needed and it would record everything that happened while I slept. I was to sleep with this machine for a week or so and then turn in the chip. I did this, but the respiratory company said their chip reader wasn't working and just to keep using the machine. I noticed that the machine was set at 5 pounds or whatever the measurement is called. I was happy to note that the pressure never went up, because this must mean I had really mild apnea and didn't need more pressure. I used this machine religiously for a year and a half with no improvement whatsoever, but I used it anyway because I hated the thought I might not be breathing at any given time during the night. My doctor told me to just take the ambian, which I hated but it was better than nothing (not much better though with the side effects). I finally quit using the cpap because I decided it wasn't worth the hassle if it didn't improve anything and I figured that a year and a half was a long enough trial.
I'm sure you've already guess it: the machine wasn't a variable pressure one at all. It was a cflex...not an aflex. The pressure never got over 5 because it never got set to the right pressure. I'm a medical professional...I do a lot of reading and research and yet I didn't figure this out at the time!! I just took my doctor and respiratory company's word.
My sleep got a bit better over time without the cpap (I had a 'Pillar' procedure done, this may have helped) but I still slept pretty bad in general. Then finally last February of this year because of increasing issues with short term memory loss and having really weird spiky jaggedy feelings in my brain along with electrical zappity feelings in my face I decided I was either going nuts, having seizures or I was getting some sort of early onset dementia. I have horrible insurance that doesn't encourage you to see that doctor EVER, even if it would save a lot of money in the long run if you did before the symptoms got out of control.
I went to my doctor and told him I thought I had frontotemporal dementia, an uncommon type of dementia, but I had all the symptoms and more! My primary care doctor said, no I don't think you have dementia, I think you have sleep apnea. I said no, I don't, I would have noticed, I have dementia. He said no you don't. I got annoyed at him. But then I generally was feeling annoyed with everything at that point in my life. It's not nice to think you're dying of dementia.
He wrote me a prescription for a sleep study and I told him my insurance wouldn't cover it and I wasn't going to do a sleep study. I asked him to write me a prescription for a cpap so I could buy a cheap one online and he said no, he wasn't a sleep doctor. I said if you don't write me a prescription I'll buy a used cpap on Craigslist and I won't even clean it first. So he wrote me a generic prescription for a 'replacement cpap with all accessories'.
This is when I discovered this board with all the great info on how to adjust your cpap and what machines are best. I read until my eyeballs about fell out and then I started the process of buying a cpap. What a pain! So expensive! So I searched Craigslist after all and bought an older well used apap machine to start for $100. Part of my job at work is decontaminating patient dialysis equipment so I have a very good idea how to decontaminate a cpap machine, which I did.
My first night was a miracle! I love miracles! My dementia went away! My IQ went up 50 points! I discovered that I don't get sleepy or tired when I'm totally sleep deprived. I just feel weird and awful.
The machine I really wanted was a new Resmed S9 autoset, not the old wheezing farting auto-pap I was using, so I kept an eye out for one and was almost ready to shell out the cash to an online store when I found an ad for an S9 Elite on Craigslist. They wanted $400 for a new one with a humidifier. Well, you couldn't beat that. The lady who sold it to me was very nervous meeting a buyer from Craigslist and she made me drive to two different places and finally meet her in a crowded parking lot. Like I was a fat middle aged female cpap using serial killer or something. There was nowhere to plug the thing in to see if it actually worked and I told her I would give her $200 for it as I didn't know if it even worked. After a short but spectacular temper tantrum on her part, she gave in and sold it to me.
My antique auto-pap indicated my average pressure was around 8 so that's where I set the S9 at first and I cranked up the EPR as I figured expiratory pressure relief must be a good thing. I loaded up SleepyHead and the next night I took a look at my breathing. I am fascinating! I had the best time looking over my breathing. It was kind of like I was snooping on someone's most private moments, except they were my own private moments.
Well, my AHI was 2.5 and I discovered that I had a bunch of 'clear airway' events, which I really didn't like the sound of. What was my brain thinking of?? It just stops breathing?? Stupid brain. I had about an equal amount of OA events, but this seemed more reasonable than just plain not breathing for no good reason at all. I eventually raised my pressure to 9.5, but it didn't seem to make a difference but I left it at that.
So, last week it dawned on me that maybe I should do something about the weird hissing noises that my mouth made at night that would wake me up feeling really out of sorts. I read about chin straps until my eyeballs about fell out (again) and ordered one from Amazon. In the mean time I'm wrapping my head in sports wrap and what a difference! My AHI dropped to less than .5 and no more 'clear airway' events, except for one night when the wrap came off and the mask was leaking (and scared me to death because something was flapping all over my face and squealing at me and breathing in my eyes. I recommend not reading the Alien series books when you use a cpap.).
So, my sleep has taken another turn for the better. Not as dramatic as my first night with the cpap, but noticeably better.
My next adventure, when my finances are in better shape is to find a more comfortable mask. I'm using the ComfortGel Blue nose mask (you can read about my bad experience buying this online) and I don't like it a bit, except it mostly works okay. This mask is okay at first, but a few hours into the night it gets really heavy feeling, sweaty and itchy. Also, I'm a side sleeper and it's easy to get the mask dislodged. Nothing like weird farty squealing noises to entertain you at night.
So, overall, I'm happy!
I'll update you all when I get my chin strap.