So I'm guessing I wont get a lot of support here for what I have to say but oh well...
I have moderate sleep apnea. I also have a ton of trouble getting to sleep. I also never have the opportunity to get much sleep in general. I also have a TON of stress and other issues in my life currently.
it was about two years ago I finally decided to get something figured out for getting better sleep as my life consisted of dragging myself through my life looking forward to times when I could get some sleep. I had no motivation to do anything as I was tired all the time.
I did the sleep study and confirmed I had sleep apnea. At the time however my insurance would not cover a CPAP device. Something about them setting their own guidelines for who qualifies as having severe enough sleep apnea to warrant a device. So the doc instead prescribed me modafinil aka Provigil to at least try and make my life more livable with sleep deprivation (for whatever reason they covered this expansive medication but not cpap).
Provigil/Modafinil completely changed my life. I was able to enjoy my life, I was motivated and focused and able to accomplish so much more things in my life. If I wouldn't have gotten this medication I would have NEVER made it through what my life turned into shortly after and continues as these days as I am extremely busy and have tons of stuff to do all the time. I would never have made it without it. I don't have to feel miserably tired all the time anymore, and I have had ZERO side affects the entire time taking this drug.
So It didn't solve my actual medical issue but I didn't care because it made my life so much better. Its really not worth going through life without it.
So now fast forward to the present. My original sleep doctor recently left the country and I was given a new doctor. All was fine for awhile until my insurance changed their policies this year.
They now approved CPAP for me. So I decided to try it of course. However, the first time I did a 2 week trial I had just had been involved in a really bad car accident that left me with 3 herniated discs in my spine (1 in my neck and two in my low back). So I did the trial but it didn't go so well.
I already was sleeping even less if at all due to my constant back/neck pain and this device was not only difficult to get used to but the neck straps and nature of it made my neck hurt even worse than normal.
I returned it at the 2 week mark and said "No, thanks this isn't for me, I'll just have to stick with the Provigil. Maybe when/if my spinal injuries get better I can try it again."
A month or so goes by and then when I go to fill my Provigil, it gets declined. Apparently, my insurance made a mistake and with the new policies it requires pre-authorization again from my doctor in order for me to continue taking it. Irritating of course, but I figured it wouldn't be a big deal.
I was wrong. My doctor refused to authorize it because I didn't continue with my CPAP. She didn't care about why I didn't want to continue it or start another trial right now because of my spinal injuries. She decided based on the fact that she had to authorize it over CPAP that I had to do it or they wouldn't fill it anymore.
I begged her to reconsider since this medication has made my life so much better with ZERO side effects, and I'm already getting terrible sleep right now and have unbelievable stress and workload right now. She didn't care. She told me I had to do another trial and they'd find some mask that might work better.
I still have about a week or so left of my Provigil and I am on this new two week trial, and it REALLY SUCKS. I tried every mask they had and they ALL made my neck hurt. Even outside of that issue I cannot stand the thing.
It already takes me ages to fall asleep even with 10-20mg of melatonin, and this makes it way worse. Especially, when I don't calculate the ramp up right and it ends up hitting me full blast before I'm quite asleep. If my nose itches I have to turn it off and take the mask off or I wake my wife up with the jet engine air noise (happens a lot). It takes me ages to try and find a position where it the mask is fitting properly so it doesn't leak but doesn't extremely hurt. Sometimes it still becomes lose in the middle of the night and wakes me up. One night it shot air out towards my eye throughout the night and I woke up an hour into that with a very swollen dry and irritated eye. Cant drink water during the night either without going through shutdown procedures. I hate it, I hate it, I hate it, I hate it, and I AM DONE WITH IT!
But apparently I cant get my meds If I don't use this crap. I get almost no sleep with this thing (and my wife gets less too), and it severely impedes my progress with my neck pain.
I don't know what to do. I just want to take my meds and live my life. Its already sh**ty enough right now and I just cant take this added into it. I am at my wits end. I don't care if the meds don't actually solve the issue. They do solve the issue mentally and right now that's what I need.
What can I do? Can I switch doctors to get different results or will that put me on some crazy medical blacklist or worse? I don't know what to do.....
05-14-2015, 04:04 PM
(This post was last modified: 05-14-2015, 04:05 PM by Terry.)
Provigil is addictive which is probably why you're not happy about it running out.
There are a ton of mask styles out and not all have straps that go anywhere near your neck. Try a Nasal Pillow mask like the Respironics Nuance or the ResMed Airfit P10. Neither go anywhere near your neck.
I'd also suggest giving the machine a fair try. There is a world of difference between fixing your apnea and just covering up the effects. Long term apnea can cause permanent medical problems that can't be fixed later. Using provigil to cover up the apnea is like using makeup to cover skin cancer.
Sounds like you could benefit from both the medication and the cpap treatment.
You might be able to tolerate the cpap at a lower pressure than it was originally prescribed. Some pressure, enough to eliminate some obstructions, would be better than no pressure eliminating no obstructions. Especially if it helps you get your medication back too.
Also a nasal pillow shouldn't have to be around your neck at all, so that may be an option to try. The Airfit P10 I was using went behind my head, fairly high up on my head. One single strap.
Last thought - from what I understand - oral melatonin is not absorbed very well. Also 10-20 mg sounds like a lot and might negatively affect your own production. I was using sublingual before cpap. And only 1 mg. It was great for "switching off" my racing mind at bed time.
You have the CPAP. Let's help you do what is necessary to get you through the trial and into semi-effectiveness. Tell us the brand and model you have if possible, and whether it has data. If we can get you to an un-repulsed state, then there will be more time to adjust.
Get your model, email for a copy of the clinicians manual. Note what others have done to adjust to and adapt to CPAP. Try things that clearly helped others.
I am sorry you are getting the run around, but see if your doctor can let you fill the prescription if you show compliance for next 10 days. See if you can converse over the phone or fax your results to evidence your commitment.
Get the software (free) or find a local clinic that can read the SD card.
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
Hi That Guy,
WELCOME! to the forum.!
I'm sorry you are having a rough time of things right now but I encourage you to keep trying with CPAP therapy. There are many masks out there so don't base your trial on the one you are using now, keep trying masks 'till you find what will work for you.
Hang in there for more responses to your post and much success to you.
It sounds like you've been through a lot. I hope you are on the mend with your neck injury.
My feeling is that you should contact your Doctor or find a different one and agree to try CPAP therapy. As other posters have said, there are minimal masks you could try like the P10 nasal pillow mask. The straps shouldn't come anywhere near your neck. If you do your part and show compliance by using it a minimum of 4 hours a night, perhaps your doctor will give you a script for your Meds. It's possible that if you commit to using your machine, that it won't be long before you start to see the benefits.
You will receive help here if you want it. It's up to you.
Welcome to the forum That Guy. It sounds like you are having an absolutely horrible time. Most of us here have had similar experiences, maybe not quite so many balled up into one at the same time.
If you have apnea, you need xPAP. Sorry, but it's that simple. Your body needs the therapy for the oxygen and your brain needs it to keep from rousing, to get restful sleep.
But we will be your online support group to help you adjust to it and make the little adjustments that make the difference between success and failure.
I had some similar problems when I started cpap ten years ago.......I did what Worn-Out-in Lebanon suggested up above.......I reduced my prescribed pressure of 12 cm down to 8 cm where I was much more able to tolerate the pressure with the idea that some positive pressure was better than not using the device at all. As I gradually got used to the pressure I would inch it up a little at a time over the course of a few months and I was finally able to easily tolerate my prescribed pressure.
The other key factor is finding the right mask for you as others have mentioned. It took me maybe ten or twelve different trials of masks before I found what worked for me.
When you said you hate it, hate it, hate it......that was exactly how I felt and I complained to my wife and Doctor how this was crap and I could never do it.........now I won't ever go to sleep without the machine, I won't even nap without it, and I am now I am so mentally accustomed to the mask and machine I'd actually have a hard time falling asleep without it !
I know you have some special issues with your unfortunate injuries and I feel for you, but with enough persevereience and the right mask I think you can overcome your issues.
Hang in there and keep trying.
Well I'm not going to diss on you for deciding not to do CPAP therapy instead of drug therapy or anything else. If you're convinced you "hate hate hate" it, then I'm not going to try to change your mind.
The thing is, you mention you are having a shixxxy life. Are you enjoying that? As long as you are, you will remain solidly resistant to anything that could make a difference in your life. So the first question is: Are you good with continuing to have a shixxxy life? If so, then by all means do whatever is necessary to find another drug source so that you can keep from doing anything positive for your body or your mind.
Then, maybe in a year or so, or maybe in a new lifetime, you will decide that you too, yes even you, deserve a quality life. That you have value. That your body has worth. Then in that lifetime I would encourage you to come here again, see your doc again, find some other group or organization, and begin taking the steps to re-invention.
We would love to be a part of that journey. We can walk with you, but we can't walk for you.
TG, in my opinion here are some steps to take:
1. Ask, beg, invest in a P10 nasal pillows mask from your supplier. Many people (not all) but many of us have had better success with that mask. It is light, less claustrophobic, less cloying.
2. I think your neck is hurting because the straps are pulled too tight to stop leaks on the mask you have. My first mask pulled at my neck and jaw due to the nice adjustments on it. Therefore see pt #1 again.
3. Get used to your mask and breathing through it. Read while masked up. If your reports are like mine they will either bring complete insomnia or complete somnolence. Or you could try a good book. Just learn to relax and breathe and get used to the device.
4. Let's get you settled onto a decent pressure set up.
It will all come together.