I cannot do sleep apnea machines!

I absolutely cannot do sleep apnea machines.

I have been diagnosed with mild sleep apnea. It took the help of a social worker at the VA to calm my nerves and fears about the sleep study. I slept maybe 2 hours tops because of my PTSD-related fears. I told them that I did NOT want any uniformed personnel around me at night, and absolutely no men around me. I was taken care of by a lady.

It took a while for the goup in my hair to wash out.

I received their CPAP machine and went through the fitting, but even then, I panicked. I felt like someone's hands were covering my mouth, and that's all I could see in my mind. I couldn't sleep that way; my sleep issues don't only involve sleep apnea or "sleep hygiene" issues. They involve PTSD-related insomnia! I cannot feel weighted down with weighted blankets, because then the intrusive thoughts come. The same occurs when I try the sleep apnea machine; the intrusive thoughts about a hand smothering me, shutting me up, holding me down, and forcing silence upon me overwhelm me to the point where I cannot relax let alone sleep.

Don't they get it?

There's gotta be a better machine for PTSD!

I wound up losing my CPAP machine during my move across states. It's not like I want another one issued to me anyway.

What other alternatives are there besides CPAP and CBT-i (for insomnia; sleep hygiene)? Is there a trauma-related sleep therapy (not just relaxation) that could help, for instance? Will I really die prematurely without the CPAP machine? --This last question infuriates me because it's not my fault that I have sleep apnea, and that my PTSD keeps me awake at night.

Try positional therapy. There are a few devices that are like a little pillow that forces you to sleep on your side.

I was also diagnosed with mild sleep apnea (although I firmly believe it's a false positive because it doesn't align with my symptoms). Anyways, I also cannot sleep with a machine, so I bought this little pillow that you wear like a belt and it sits behind you and keeps you on your side.

There is also a dental/jaw device you can be fitted for that you can wear at night that keeps your jaw positioned so you can breathe.

I've also read on some oral exercises you can do to help with sleep apnea. The machine is absolutely not necessary for everyone, and there are other treatment options, although doctors don't seem to want to talk about them. I think they get paid to push the machine.

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Originally Posted by seesaw Try positional therapy. There are a few devices that are like a little pillow that forces you to sleep on your side. I was also diagnosed with mild sleep apnea (although I firmly believe it's a false positive because it doesn't align with my symptoms). Anyways, I also cannot sleep with a machine, so I bought this little pillow that you wear like a belt and it sits behind you and keeps you on your side. There is also a dental/jaw device you can be fitted for that you can wear at night that keeps your jaw positioned so you can breathe. I've also read on some oral exercises you can do to help with sleep apnea. The machine is absolutely not necessary for everyone, and there are other treatment options, although doctors don't seem to want to talk about them. I think they get paid to push the machine.

Thank you Seesaw!

I might get the pillow, though I naturally sleep on my side. It was hard to do that with all the brain wires on my head during the sleep study, LOL. I had a wedge pillow at some point, but that felt uncomfortable. I like side sleeping the best. I used to love sleeping on my tummy, but my back started hurting lately from doing that, plus I gained some weight, so it just doesn't work anymore. But side sleeping is my thang!

I'll look into the mouth guards.

I also need a different kind of mouth guard to prevent me from clenching and grinding (I do more clenching than grinding though).

I wonder if there's a mouth guard that can help with breathing and preventing teeth clenching. Hmm...

I also naturally sleep on my side, and the at-home test, in which I was on my side, was negative, but the in center test, for which I was in an extremely uncomfortable hospital gurney, not even a bed, with a flat pillow, was forced to sleep almost with an arched back. I had a PTSD nightmare, and they claim the test was positive. After that I read into the details of how the tests are scored and read that about 50% are miscalculated... Yeah... I don't snore, and I don't have the symptoms of sleep apnea. But he's trying to attribute my symptoms to sleep apnea. Anyways, I'm waiting to change my healthcare in open enrollment now and start this process all over again.

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Originally Posted by seesaw I also naturally sleep on my side, and the at-home test, in which I was on my side, was negative, but the in center test, for which I was in an extremely uncomfortable hospital gurney, not even a bed, with a flat pillow, was forced to sleep almost with an arched back. I had a PTSD nightmare, and they claim the test was positive. After that I read into the details of how the tests are scored and read that about 50% are miscalculated... Yeah... I don't snore, and I don't have the symptoms of sleep apnea. But he's trying to attribute my symptoms to sleep apnea. Anyways, I'm waiting to change my healthcare in open enrollment now and start this process all over again.

Thank you, Seesaw!

The pulmonary docs are not therapists, even though they may have taken some psych courses back in the day, or even some CE courses today.

They still don't have sleep studies that include psychology-based psychometrics, such as PTSD-related insomnia, the interaction between PTSD and sleep apnea (if both do coexist, or if both are comorbid), a listing of when someone falls asleep in their natural habitat and when they wake up (how many times do they fall asleep and wake up throughout the night), their circadian rhythmic changes within a one-month period (which would be more accurate), better head sensors that don't affect sleep or the PTSD (such as a cap instead of all those wires), house camera for the bedroom, etc.

They should be monitoring/asking within a one-month period of time:

1. What time does the client fall asleep?
2. What thoughts preceeded bedtime?
3. What kind of dreams or nightmares have been experienced (if any) upon wake?
4. Does the client wake to use the restroom?
5. Does the client have stress incontinence or incontinence?
6. Does the client wet the bed?
7. Does the client have gastrointestinal problems (e.g., IBS, GERD, etc.)?
8. Has the client experienced past traumas? If so, what kind(s)?
9. Does the client experience any PTSD symptoms prior to bedtime?
10. Does the client experience any PTSD symptoms during wake?
11. How many times does the client fall asleep and wake up throughout the night/day?
12. Has the client ever had swing shifts, graveyard shifts, changing shifts, over 9 hours of work per day, or multiple jobs throughout his/her lifespan?
13. Does the client sleep alone or with a partner?
14. Does the client have a child or children?
15. Does the client have a pet? If so, what kind(s)?
16. Does the client have to walk the pet or tend to the pet before bedtime?
17. Does the client have to walk the pet or tend to the pet upon waking?
18. Has the client been the primary caregiver for an infant who wakes frequently in the night? (e.g., a parent who wakes every two hours on average to feed the baby, change the baby's diaper, hold the baby for comfort)
19. Does the client live in a noisy neighborhood?
20. Does the client live in a noisy apartment building or house?
21. Does the client live in a dangerous neighborhood?
22. What is the SES of the client?
23. What are the reasons why the client wakes (list each one and frequency during sleep-wake cycles throughout the night, such as three times to use the restroom, once due to a night terror, once due to a nightmare, total of five sleep-wake cycles throughout the night)?
24. Do the circadian rhythms change over a one-month period? (e.g., the client falls asleep at different intervals, ranging from normative bedtime hours to sleeping during the day and being awake all night)
25. Are there any other reasons why the client has sleep-wake problems?
26. What is the client's prescription drug routine?
27. Does the client need to watch television or listen to sounds to fall asleep?
28. Does the television or sounds remain on?
29. Does the client keep a light on during sleep?
30. If the light is kept on during sleep, how bright is it?
31. Is the client afraid of the dark?
32. How long have the symptoms of sleep-wake problems been going on?
33. Were the sleep-wake problems progressive over the lifespan, meaning that they got worse over time and/or worse when responsibilities of adulthood increased?
34. Were there times when sleep was good?
35. Under what conditions were there times when sleep was good?
36. Is the client seeing a therapist?
37. Does the client have problems sleeping after a therapy session?
38. What is the client's current occupation?
39. What was the client's previous occupations?
40. Is the client in school?
41. Is the client attending school full-time, part-time, or quarter-time?
42. Does the client have financial troubles?
43. Does the client have relationship problems?
44. Does the client have any other mental disorders besides, or apart from, PTSD?
45. Does the client have any other medical (e.g., CFS, MS, STIs, etc.) and/or dental problems (e.g., wearing braces, wearing retainers, having toothaches, having painful sores in mouth, having gingivitis, etc.)?
46. Do the symptoms of any other medical and/or dental problems affect the client's ability to fall asleep or stay asleep?
47. What other areas affect the client's ability to fall asleep and/or stay asleep that are not mentioned above? (assuming that the client doesn't sleep walk or have any other sleep-wake disorders besides insomnia)

The above questions would provide a comprehensive team-approach to care for those with insomnia or related sleep-wake disorders.

The issues for insomnia aren't always due to sleep apnea, or the issues could be a combination of factors (including or not including sleep apnea).

Taking an assessment for why CPAP machines don't help those with insomnia would be beneficial.

Having more trauma-friendly sleep aids would be helpful.

Understanding fears related to sleeping in the dark would be helpful (I'm afraid of the dark, so I have to sleep with a light on, and it has to be a minimum of 40 watts, though on some occasions, I need a full 60 to 100 watts).

Understanding all the other conditions as well as symptomatic thoughts, routines, emotions, etc., would help.

Having a treatment team to help with insomnia might work better than pulmonary specialists who hypothesize that we have "mild" sleep apnea. To me, it's not a diagnosis; it's a hypothesis, and one that is getting tested with or without our awareness.

I seek care at the VA. My civilian doctors never suggested sleep apnea or sleep studies to me. My VA doctors have. I found that odd, but it also coincides with my Medicare versus my VA Care. My VA Care covers everything, my Medicare does not. So go figure. Healthcare influences diagnoses and treatments, sometimes. Someone should be doing a study on that as well, including economists.

I think of the details and of the bigger picture when it comes to things like this.

Are patients really getting better, or are they now tasked with using additional machines - and costly ones at that (typically costing an average of $1800 per CPAP) - which adds to their bedtime routine? For some, the CPAP machine works great. I have friends who have NO mental illnesses and swear by the CPAP. Nearly ALL of my friends with mental illnesses, however, could not nor will not use the CPAP for one reason or another (including me). That should be saying something. Instead of blaming those with mental illnesses, blame the lack of alternative treatments that should be understanding of mental illnesses.

That's my long-winded reaction to all this.

(((safe hugs)))

Do you really need a sleep apnea machine for mild sleep apnea? You probably should take a look at your actual results. I was diagnosed with the same thing and then I asked for the results... turned out I was just over the line for sleep apnea... I think the bottom number was like 75 and I was 79. (but like mild was 75 to 125) The actual opinion said that several of the apneas they counted were likely me getting up during the night to use the bathroom. So it said right in the materials I likely wasn't mild but they had to score it that way to be conservative. My doctor never read it.

My brother got a c-pap from the VA and now he feels that there was just a big push for this particular diagnosis and he doesn't have it.

I definitely think that if you have a mild diagnosis you would question it.

Wow, thanks for this Emily. I had to have this huge fight with my doctor about it. They expect people to sleep with a machine breathing for them for the rest of their lives. I was just like, no way. I dont snore, and I had a negative at home test followed by a crappy test done in a crappy facility where, to me, it seems like they forced a positive. When I asked my doctor to see the test results he said I'd have to request them. And I was like this is coordinated care and all of my results always show up in my online record but for this one i have to request it? ********.

Then, in this phone conversation that had lasted 5 minutes so far he got angry with me and refused to discuss any other treatment options and kept saying that the conversation had gone on VERY long and he ddint have time. And I had a scheduled call with him, that he had called late to, and 5 minutes isnt a long call. You're giving me test results and talking treatment options, dumbass, I'm likely going to have questions and going to want to make an informed choice. Not just do whatever you say I have to do.

But yes, I believe whatever apnea registered were forced due to the ptsd nightmare I had or when I was laying in bed having to pee and waiting for the guy to come and unhook me. The study center was also nothing like how I sleep at home, so I couldnt sleep comfortably anyhow. They also told me I could bring my service dog, and I dont sleep without him. So it was just entirely messed up from the beginning.

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Originally Posted by seesaw Then, in this phone conversation that had lasted 5 minutes so far he got angry with me and refused to discuss any other treatment options and kept saying that the conversation had gone on VERY long and he ddint have time. And I had a scheduled call with him, that he had called late to, and 5 minutes isnt a long call. You're giving me test results and talking treatment options, dumbass, I'm likely going to have questions and going to want to make an informed choice. Not just do whatever you say I have to do. .

Yes my doctor wasn't happy with me. I never consulted her for the results.. I just asked the file room for them. My doctor, in her stubbornness, still has "mild sleep apnea" listed on my record.

For everyone here -- NEVER EVER EVER just take your doctor's word for it. Get the records. You have the right to. I always do that, with every single test I ever get.

I suspect sleep apnea is an over broad diagnosis and disease. There are some people who have it but most people do not. Even if I did.. I would prefer to die early and have good sleep than have a machine pumping up my nose every night for a life time. That is just stupid doctor bull. They should have known that a "cure" like that is no cure at all.

I believe that the doctors are in bed with the sleep apnea people and they must get a kick back. My doctor refused to consider any other reason for me being sleepy and tired and I have learned not to bring it up with her anymore because she will just insist the sleep apnea is the reason.

Try having sleep apnea on VA medical and now governmental records. ((raises hand - I do!))

I am not sure if I'm required to get a doctor's approval for a driver's license. I wasn't in the last state, but then again, I got my initial license way before the VA dxd me with sleep apnea, so I was good to go for renewals. This time around, however, I may need it since I'm switching states. It's a pain in the buttocks to wait for that, but then again, it gives me an excuse for the delays in me going to the DMV. My appointment isn't until the 19th, so I have time to study and hopefully get a signoff from my new doc.