Second, I should have been clearer regarding the pressures. They're too high. I feel like I have a pillow over my face when I try to exhale. It's terrifying for me.
In 2011 they were at 15. Monday night during the study, they topped out at 12. Improved it seems, but exhaling against the machine was awful nonetheless.
I kind of thought that might be the case.
For what it's worth, I know the feeling you're talking about way too well. And I started out with straight CPAP set at 9cm, which is hardly a high pressure around here. There are some things to keep in mind to help minimize this problem once you get your equipment. They include:
- Exhalation pressure relief systems. EPR on Resmed and Flex on the PR machines reduce the pressure at the beginning of each inhalation. EPR is more predictable and provides up to 3cm of pressure relief on each and every exhalation. It (or Flex) can be a godsend. And for some people, that's all that's needed.
- Use of the ramp. Yes, a lot of people around here frown on using the ramp. But if used correctly, the ramp can provide a lot of help for someone who has real trouble getting to sleep because they find it difficult to exhale against their prescribed pressure. Both the Smart Ramp on the PR Dreamstation and the AutoRamp on the Resmed AirCurve wait for a period of time before they start increasing the pressure from the beginning ramp pressure to the prescribed pressure. The two ramp algorithms differ a bit in how and when they decide to start increasing the pressure, but those differences can be talked about later. And either one of them should be useful to you. Using the ramp will allow you to lower the pressure when you are awake and trying to get (or get back) to sleep. You can start the ramp much lower than your prescribed pressure. (But beware, if you set the ramp really low, a lot of people around here will immediately tell you that the ramp pressure is set sooo low that it's causing your feeling of 'suffocation'.)
- Use of APAP vs. CPAP. Try to make sure your durable medical equipment provider (DME) sets you up with an APAP rather than a CPAP. This allows you to set a minimum pressure level that is above the ramp pressure, but below the prescribed pressure. The machine will only use the higher pressures when your apnea warrants the additional pressure---as long as few or no events occur and as long as there's no snoring, the pressure stays at or near the minimum pressure range after the ramp period ends.
- Change of mask style. With the claustrophobia, it makes sense to start out with a nasal pillows mask. But some people find the intensity of having air blown directly into their nostrils more than a bit bothersome. But if they switch to a nasal mask (or even a full face mask), the air bothers them a whole lot less. My hubby was that way. There's absolutely no evidence that he's a mouth breather, and yet he has a strong preference for a full face mask. Of course, the bigger the mask, the bigger the footprint on your face, and the more likely it may be to cause the claustrophobia to kick in. Nonetheless, there are now some pretty minimal nasal masks out there that don't have forehead supports, and trying one of them may make it a bit easier to exhale for you.
- Temporary use of a (max) pressure that is lower than the prescribed pressure. If it turns out that you can breathe reasonably comfortably at, say 9cm, but can't at 12cm, then it's worth starting out at 9cm and monitoring the data. If the AHI at 9cm turns out to be effective, then there's no need to increase the pressure further. If the AHI is still too high at 9cm, then after a week or two of using 9cm, you can start gradually increasing the pressure up to the prescribed 12 cm. Yes, you'll have less than effective therapy while you do this, but some therapy is often better than no therapy.
- Trial a bilevel machine if nothing else helps enough. It's true that not all sleep docs are willing to switch an OSA patient to bilevel because of prolonged problems with adjusting to CPAP. But if you're feeling worse after a couple of months of PAPing and the insomnia is getting worse, then it's worth asking about. In my case, I was switched to bilevel at the suggestion of a PA in my first sleep doc's office after 2.5 months of trying very hard to adjust to CPAP and then to APAP without much success. Aerophagia was a huge issue, but so was the growing insomnia and the fact that even at very low pressures I was having real problems exhaling against the pressure. The switch was a major step forward for me becoming a compliant PAPer.
First off, thanks for your kind words. They mean a lot. This has been a nightmare this time. I knew it would be rough with my claustrophobia & insomnia like my past experience in 2011 but I didn't expect to have panic flare like this. I know it's connected to my past abusive relationship where these triggers were exploited to no end. I really thought I had done the work to beat back the fall out from the abuse, but it's shown me that there's more work to be done in that area. I guess that's maybe a silver lining - I've identified an area that is still not healed & could cause problems in the future so I can now try to kill it at the source. My counselor is reaching out to a colleague that specializes in trauma recovery / PTSD & is certified in EMDR therapy so we can tackle the remaining issues there using that model for a bit.
You have a remarkably positive attitude towards the fact that you and your councilor realize that you have a lot more work to do with the PTSD issues. Your willingness to keep working on them bodes well. As the PTSD is treated, your anxiety about the CPAP should go down. And as you finally start sleeping well
with the CPAP, that should help with the PTSD therapy. In other words, it sounds like you're at the beginning of trying to establish a positive feedback loop between the PTSD therapy and the CPAP therapy. I wish you well on addressing both the PTSD and the OSA and the insomnia.
Third, the insomnia is only making this worse. Fortunately, this was shown to be very severe during my sleep study in Feb. This new doctor could clearly see my issues there. I've had the same primary dr for 17 years & she's amazing. Knows all the backstories & has really become intuitive with me. I was using Trazodone, but it a) made my snoring WAY worse & b) didn't seem to do a thing for the CPAP anxiety. Now we're trying Belsomra (which is STUPID expensive even with insurance, but I'll try it) because it's non addictive & she said people report not having anxiety on it.
It took me a very long time to become comfortable with long term use of sleeping pills after my insomnia became intransigent and morphed from just sleep onset
to a combination of sleep onset
, sleep maintenance
and delayed sleep phase
issues. But in the end, I think my current sleep doc was correct when he suggested long term use of Ambien (before Belsomra came on the market) and then Belsomra.
Yes, Belsomra is ridiculously expensive as a new medication that is patented. But Ambien was causing some side effects for me (mostly daytime sleepiness and lots of constipation issues), and the Belsomra does not do that.
She said to give it a week & see if it helps. It took me a little over an hour to fall asleep last night & I did wake up at 3:00 a.m. but did manage to fall back to sleep.
What time did you get to sleep? If you woke up about 90 minutes or 3 hours after going to sleep, that wake may have been a perfectly normal post-REM wake. The critical idea with normal post-REM wakes is to NOT worry and obsess about them since that turns a 1-5 minute long wake that doesn't really disturb your sleep into a major 10-30 minute wake that does.
Has the new sleep doc suggested keeping a sleep log for the insomnia? That played an exceptionally large role in my conquering the CPAP-induced explosion in my insomnia problems after starting CPAP. When the insomnia gets bad enough to start interfering with my sleep, I often go back to keeping the sleep log for a few weeks. It turns out that a sleep log can provide a lot of insight into both what's bad and what's good
with your sleep. And it helps you focus on the good
and how to increase the good
. If you're interested in learning more about sleep logs, just let me know.
I'm thinking that because this is a hypnotic, it may have been an apnea event that woke me up since I don't have a machine yet (will within a week I would think) & these drugs are known to make untreated apnea worse because they relax the back of the throat allowing the tongue to block the airway. I may use a sleep app tonight that I have on my tablet to see if I can hear an apnea event if I wake up & connect the 2 together.
My advice to just chill out about trying to tie the wakes to the apnea events. You'll be getting your CPAP soon. In the meantime don't get so worked up about worrying about whether each and every wake is somehow caused by an apnea event. Some of them probably are, and some probably aren't. My point is you've been sleeping poorly for many years now, but you weren't lying awake wondering about the anpea and your breathing all that time. Allow yourself the luxury of not worrying about the apnea until you get the CPAP. Focus on the insomnia for now. Focus on the OSA and CPAP adjustment once you have that CPAP.
And do you know what make and MODEL of CPAP your DME is intending on selling you? That's critically important. Make sure it records full efficacy data, not just summary data. Ideally fight for an APAP rather than a CPAP. An APAP can always be set to CPAP mode, but a CPAP can't be used as an APAP.
She said if it doesn't work for me, we'll try something else & keep trying until we find what works. She knows I don't want to take benzos long term. Heck, I don't want to take anything long term - THAT'S where I'm a difficult patient, but in order to figure this out, I'm trying anything that could work. My new sleep dr (not the same one who was very dismissive in 2011) seems to want to do whatever she can to help.
Having a quality sleep doc whom you trust is critical. But do keep in mind that it took years for your sleep to deteriorate to where it currently is now and it may take several months to straighten out your sleep issues. Also if possible have a chat with your sleep doc about setting goals for your sleep: You may never get to the point where you go to bed at 10:30pm, fall asleep by 10:45, and sleep without any wakes until 7:00AM. So with the help of your doc, set some reasonable goals for what a good night's sleep for you
actually looks like.
It took me four tries to find a keeper of a sleep doc who I could trust. We worked hard for over a year before he revisited the issue of long term use of sleeping medications. By that time I was willing to trust him enough to consider it. It hasn't totally fixed all of my issues, and indeed my sleep doc and I are currently doing some experiments with both the Belsomra and my pressure settings because my sleep deteriorated over the winter substantially. We've stopped the negative spiral and stabilized my sleep. Now we're working together on getting it back to where it was a year ago when I felt pretty good when I woke up most mornings and had plenty of energy to get through my days.
So far, so good. She also seems to have a very good staff that is very focused on coordinated care & patient support. If I start to feel the way I did in 2011, I will bounce to another sleep specialist though. And if after a couple of months of trying I'm still needing anxiety meds to sleep, I will start pushing for an oral appliance that requires no PAP machine. That one thing would kill all birds with one stone, but since my insurance co sucks so bad, she wants me to try everything non-surgical to give her ammo to force them to pay for the appliance.
I would urge you to have a bit more patience with CPAP. A lot of people take more than 2 months to fully adjust to CPAP and you may be setting yourself up for failure by giving yourself a deadline.
And here's the thing about oral appliances: Not only are they expensive, but they have their own whole set of issues. A lot of oral appliance users complain about serious jaw pain since they work by moving your jaw out of position for substantial periods of time. It also can take some effort to get used to sleeping with a rather large thing in your mouth---a thing that essentially changes how much control you have over your jaw movements. Oral appliances have to be adjusted over a multi-week period where each adjustment moves your jaw further out of where it wants to be. Finally keep in mind that an oral appliance is considered "effective" if it reduces the AHI by 50%. That probably won't reduce your AHI down to below 5.0 on a nightly basis, so it may not led to as much improvement of your daytime symptoms as you might hope. Still, after 6-12 MONTHS of unsuccessful PAPing, looking into an oral appliance may be worth it since some therapy for OSA is better than no therapy for OSA.
As far as the adjustment period, I have a wonderfully supportive boyfriend (prob fiancée soon, tbt) who also has sleep apnea, is on CPAP & had PTSD from 2 combat tours in the Gulf. To say he understands what I'm going through would be an understatement. He's the reason why the mask itself doesn't freak me out because he made me wear it - just the mask - to sleep so I could see that I wasn't going to get tangled up in anything. I tore it off my face in my sleep only because it was annoying. It's been nice to feel supported & loved enough by him that he's pushing me to deal with the apnea without being a jerk about it. He said he'd move me in & work with me every night until I was able to use it without anxiety meds & was compliant. I'm pretty blessed for sure right there.
Yes, it does sound like you have a keeper. My hubby (who was NOT a CPAPer at the time) was wonderfully supportive and I would not be here today as a compliant PAPer if it had not been for his support and patience during my difficult 9-12 month long adjustment period.
Still I want you to keep in mind that with your history of PTSD, insomnia, prior bad experiences with CPAP, and claustrophobia, setting reasonable expectations
about starting CPAP and how long it might take to fully adjust to CPAP is going to be critically important.
It could easily take you anywhere from 2 months to a year before you are genuinely sleeping well
with the machine, where sleeping well
means more than just using the dang CPAP. By sleeping well
with the CPAP I mean all of the following:
- Going to bed at a time that is reasonable for your lifestyle and getting to sleep in a reasonable amount of time in your opinion.
- Putting the mask on each and every night with no dread, no anger, no anxiety, no worrying about how bad things will be tonight.
- Keeping the mask on all night long without fighting to do that.
- Waking up no more than once every 90 minutes or so, keeping the mask on through the wake without thinking about taking the mask off, and getting back to sleep within 5 minutes most of the time.
- Getting somewhere between 6 and 9 hours of sleep each night, where the actual total depends on what makes you feel best. Some of us actually do function better on 6 or 7 hours of sleep than on 8 or 9 hours.
- Having a sleep efficiency of 85% or better almost every night. Ideally you sleep efficiency should be more like 90% on most nights. Note that Sleep efficiency = (Time asleep)/(Time in bed). If you are lying in bed for 9 hours, but only managing to get 6 hours of sleep, your sleep efficiency is a pretty lousy 66.67%
- Waking up feeling rested and even refreshed most mornings.