Iancdub88 wrote: ↑Mon Sep 09, 2024 7:33 am
Had another rough night.
I am so sorry to hear that.
The sleeping pills have seemingly stopped working at this point.
Fixing insomnia is a
process. Sleeping pills may work wonderfully for a night or two. And then you have another really bad night in spite of taking the sleeping pills. That doesn't necessarily mean the sleeping pills have quit working. It just means that you had a really bad night.
In fighting insomnia there's a lot of one or two steps forward followed by a step backwards. In other words, there will be bad nights. The goal is that over time the number of bad nights goes down.
I am nearing my wit's end.
I think you need to set some
reasonable short-term goals for yourself. Unfortunately, "Sleep all night without waking up" is not a
reasonable goal at this point. Your body is just plain not capable of doing that yet.
I hope the bipap will help but I'm skeptical that it will just fix everything.
Don't set yourself up for failure by expecting too much from the switch to bipap. Yes, switching to bipap can make a big difference for certain problems, including aerophagia. But if the real problem is that your body is simply being overwhelmed by the sensory stuff coming from the CPAP, the switch to bipap may not do much to help you rein in the insomnia monster.
Have you told the sleep doctor that you are unable to stay asleep during the night? You may have to keep hammering that point home until the sleep doc or whoever in his/her office is responsible for dealing with you finally sits up and takes notice.
In my case, what helped me get the help I needed with the CBT-I was the results of my first bipap titration study. It was an in-lab study, and what it showed was that my insomnia was
objectively even worse than I subjectively felt it was. The study had a TIB window of something like 6 or 6 1/2 hours. In the morning when I filled out the survey about how I thought the night went, I subjectively said I thought I got about 3 1/2 hours of sleep. The study showed that I got 111 minutes (less than 2 hours) of actual sleep during the study. That convinced the PA who was responsible for me that my pleas for help with the insomnia were genuine. And at the meeting to discuss the titration study results we spent more time talking about the insomnia than the switch to bilevel.
As painful as it might be, you might want to ask whether your insurance would pay for an in-lab titration study with a bilevel machine more to try to establish just how little sleep you are getting each night.
I took the mask off at 6:30 and tried to sleep without but I couldn't so I'm at a point where I can't sleep with it and I can't sleep without it.
Been there, done that, and unfortunately I have the scars to prove it.
Yes, it's awful when you feel like you can't sleep with or without the machine. Try to not beat yourself up about this. Think of it this way: The fact that you are having trouble sleeping
without the machine means that there is some part of your body that is now craving the idea of being able to sleep without all the mini-suffocations caused by the apneas. And that means that when you do get some sleep (even if it's not very much and is highly fragmented), there's a part of your body that understands the highly fragmented sleep with the CPAP is somehow physically better than your old apnea filled sleep was.
In other words, try to focus on this idea: Part of your body
wants to sleep with the CPAP. But the problem is that an insomnia monster has moved into your bedroom and it's the
insomnia, not the CPAP that is causing your sleep to be so bad right now. If you can find a way to fix the insomnia, then your sleep will improve.
I feel like my quality of life has really plummeted. I really don't know what to do.
Again, my heart goes out to you since I've been there, done that, and have the scars to prove it.
My first four months on CPAP were hell. And the quality of my life plummeted. In the first 3 weeks fo PAPing I went from being fully functional to being terrified that I would fall asleep while driving---so my husband was driving me everywhere. I also was finding it difficult to concentrate while teaching and there were times when my students would ask me in class if I was ok. People at work were asking me what was wrong since I looked physically ill---as in my eyes looked sunken and my face was pale and grey looking. I had a whole series of emergency appointments with the PA in my sleep doc's office as she made one adjustment after another and nothing seemed to help, not with the aerophagia and not with the increasingly severe insomnia. About two months into therapy I was shocked when she suggested the bilevel titration with the idea of switching me to bilevel. It was another month before that titration study could be done.
The switch to bilevel helped with the aerophagia. But it was really the PA's willingness to do several months worth of CBT-I with me that finally got me to where I could sleep with the dang hose on my nose and actually sleep
well with it on my nose.
Now I want to be honest with you: My sleep remains somewhat fragile even today, even after 15 years of xPAPing. The only thing is, I now know enough about my own sleep patterns and my own body to know when things are starting to deteriorate long before they start spiraling out of control. And I was fortunate enough to find a really good sleep doctor who trusted me enough to work with me rather than just "ordering" tests and "prescribing" pressures and sleep medication, and as a result, I'm now confident enough to know that
if my sleep starts to deteriorate, I have a variety of different tools that I can use to fix the problems. And so, most nights I get a reasonable amount of reasonably good quality sleep and I am functioning better than I was in the last couple of years
before my OSA diagnosis was made and
before my CPAP adventure began.
But looking back on those first 6-9 months of xPAP therapy? Those were some of the darkest days (and nights) of my life. I would never have gotten through them without the support of my husband as well as the support from the folks here at cpaptalk.com.
So for what it's worth, my advice for what to do now is quite simple: Keep posting here. Find support among friends and family as you can. Tell the sleep doc you need more help than just a prescription for sleeping pills for dealing with the insomnia. Ask for a referral to a person who can direct you through CBT-I if the sleep doc's office isn't willing to do it. (Such a person might be a sleep doctor, or a PA or nurse practitioner, but it might also be a psychologist who specializes in CBT.)
I sincerely wish you the best of luck: You're having a tough transition to therapy, one that is quite honestly far tougher than most people. But if you are stubborn enough to keep plugging away at it, things will eventually turn around and you will eventually start feeling better.
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.
Correct number of posts is 7250 as robysue + what I have as robysue1
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