[Capt Dave Man]

As the title says, I’ve had severe insomnia for years, but the past year is unbearable and have the following complications:
– severe central + obstructive sleep apnea; I was on a cpap, now an ASV + oxygen pump for the past 2 years. Even when I could sleep- I never felt any benefit from the cpap/asv/O2 combo. My data + pressures are good, but I still feel awful
– low SpO2% + blood pressure elevated + shortness of breath + high heart rate
– I’m being seen by my PCM, cardio, pulmonary, endo, and a new sleep dr next month who offers CBTI
– I’ve been hooked on sleep meds for years- they no longer work + I get a skull crushing hangover
– I am keeping a diary using CBTI Coach.

I’ve been weaning off the meds (per dr) while following all the CBTI protocol, but nothing is working. I know this is a marathon and not a sprint. I don’t get the sleepiness phase and recognize it’s time to go to sleep; I’m either wide awake or nodding off for 3 seconds before the hypnic jerk kicks in and shocks me. My dead zone is at work right after lunch and from 8-830 pm, where I’m trying like hell to keep away the slumber shock.

My routine has been the same for 10+ years: no caffeine after breakfast, work 7-4, dinner at 630ish, bedtime 9pm-5:30am. No tv or electronics at bedtime.

By trying sleep restriction, I read from ~9pm – 1am (or until the words are blurry; but not sleepy), climb in bed and get a ~30 min power nap with ASV, then wake up and move to the couch for another power nap (without ASV) at 2am-3 am, then I’m awake.

There is a longer, sadder history to this, but let’s poll the forum expertise here:
– I want to start CBTI while I’m waiting for the drs to figure which body part is defective and smack it back into submission. This could take months.
So how do I do this while not using the ASV+O2? I’m only getting 1-2 hrs of junk sleep per night, not getting the sleepiness, or ASV benefit.

[Cb5]

I feel your pain. I have sleep apnea and COPD as well. I’ve had severe sleep issues before the sleep apnea and COPD, but obviously way worse with these .

I also, will, what it seems like cat naps throughout the night. Constantly waking up. No air flow. Cpat machine sometimes feel worse.

All I’ve ever been prescribed for sleep is trazadone mirtazapene and gabapentin. They think I’ll sleep. Nothing at all. I’ve had 2 sleep studies and an MRI on my brain last week. My chest is always tight and that is just making me want to get drunk. But , I really don’t want to, as I’m a cold stone alcoholic.

I’m so jealous of ppl that can just lay down and sleep.

[Capt Dave Man]

When you research articles/journals on CBTI, there is no mention that it takes about 2 weeks of hell before you start seeing any difference. I was so apprehensive about starting because:
– I knew it would be hell (anxiety… check!)
– I didn’t think it would work (anxiety… check!)
– My history showed piss poor sleep for years (anxiety… check!)
– I was afraid to move to the couch and not use the ASV+O2 (anxiety… checkmate!)

I found a video where the sleep coach stated it would take 2 weeks before it starts to work. Of course, this is not scientific, peer reviewed, or outlined in any medical journals.

I’m on week 3, not using any sleep meds, and am actually functional during the day. My sleep restriction is 12:30-5:30, sleeping 1-3 hrs (but still catnaps). I still have the other chronic symptoms above; however, I don’t have the med hangover.

Goal: I want my life back! So no pain, no gain…

(I’m not a dr, so don’t take as medical advice) but unless your prescribed meds are keeping you alive, talk to your PCM or specialist to create a get sober and wean off plan. The meds you stated are going to take time to flush out of your system, and it’s going to suck.

Remember- it’s a marathon, and the first 10 miles are going to hurt, but don’t quit. There is an adrenalin rush waiting at the finish line.

[Martin Reed]

Things sure sound challenging for you right now! Unfortunately, sleep apnea isn’t my area of expertise and I am not a doctor so I can’t offer you any treatment advice.

It sounds as though you are currently doing a lot to make sleep happen; I am not sure there’s a whole lot more you can do at the current time. Typically, with chronic insomnia, the more we try to avoid nighttime wakefulness the more we struggle with it. In your situation, things are definitely more complicated with the presence of the sleep apnea.

Outside of your efforts to resolve the situation you find yourself in with your sleep, what other actions are you pursuing that might help you move toward your goal of getting your life back?

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[Capt Dave Man]

Martin- well understood; you have to stay in your sandbox. And thanks for the reply.
To answer your question:
– read reputable medical journals on the affected conditions; disregard the BS ones
– read a LOT of these insomnia and apnea forums (daytime, not before bedtime) and gain insight that I’m not the only one. There are many at home experts who’ve been thru this and found acceptable solutions and courses of action
– eliminate variables (safely). With dr consent, I’ve stopped taking thyroid meds, OTC supplements, and now use topical testosterone (stop liquid injections). I’m down to just a blood pressure and cholesterol med daily. My dr is watching the labs.
– find a reputable dr who listens to you as a whole person, not just someone with a lab result that says this level is good, this is bad, and here is a med to fix it
– have faith in the program. It will suck at first, but eventually get better
– have a support system. My wife and best bud have a lot of patience and I couldn’t do this alone

I think I just gave away all your secrets.

• This reply was modified 2 years, 2 months ago by Capt Dave Man.

[Martin Reed]

If that sounds like a workable approach, great! If it doesn’t seem to be getting you where you want to be in terms of living the kind of life you want to live then I wonder if it might help to shift some of that focus and attention on doing things that are important, rich, and meaningful?

I wonder if that kind of approach might help you reach your goal of getting your life back — or at least a bit closer to how you’d like it to be?

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[Capt Dave Man]

A quick update and poll for help…
Still have severe COSA and hypoxia; my SpO2 is dropping <90% about 40x /nt even while on ASV+O2.

I’ve been trying the sleep restriction for 8 weeks now with no improvement.
My window= 1200 – 0530; only sleeping to 0300 – 0400 then wide awake + out of bed @0530. Work 0700 – 1600. No naps. Same sched on weekends; SSDD…

I’m logging my sleep, blood press, and SpO2 daily and routinely giving them to my providers.

I don’t feel that I have any conscious anxiety as the cause of insomnia, but I’ve “embraced the suck” for so many years that I don’t care anymore.

So when is this supposed to work? I may sound sarcastic, but I’m open to suggestions.

[Martin Reed]

By “work”, what do you mean by that? If your goal is to control things that can’t be controlled (sleep itself, what you think, the feelings your mind generates) then you might be engaged in an ongoing struggle without end. If I tried everything I could to turn the moon into cheese, when could I expect my efforts to work? 🙂

Instead, I might ask myself why I want to turn the moon into cheese. If I successfully turned the moon into cheese, what could I then do that I am unable to do now? Can I start moving towards those things right now, even if only in a small way, before the moon becomes a circle of cheese? Perhaps, with repeated practice I might start to move toward the person I want to be and the life I want to live even if the moon isn’t transformed into cheese?

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

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