Does Anyone Hate their CPAP?

Pod153 wrote: ↑

Fri Dec 02, 2022 11:35 pm

I am on my second night with CPAP. I have worn it for 6 hours each night. I have slept for only one hour each night. I have taken Benadryl. I cannot sleep, at all. I just lie there feeling like I’m suffocating. I have never had insomnia before.

I think it’s a sensory issue with both the mask and the airflow. My AHI was only 5.4.

Short of a miracle I don’t see how I can continue on CPAP. Only getting a hour of sleep a night will kill me long before an AHI of 5.4 will.

Adjusting can be difficult, but it's worth the effort.
I was fortunate to be able to adjust quickly. My first night was weird, but the second night I was able to sleep. I have not missed a night since then.
There may be some tweaks to your therapy to make it more tolerable. Perhaps getting OSCAR, and posting to this board may help. I was doing OK, but improved my therapy after posting my graphs here.
Hang in there!

jsmit86 wrote: ↑

Sun Dec 04, 2022 12:33 pm

Adjusting can be difficult, but it's worth the effort.
I was fortunate to be able to adjust quickly. My first night was weird, but the second night I was able to sleep. I have not missed a night since then.
There may be some tweaks to your therapy to make it more tolerable. Perhaps getting OSCAR, and posting to this board may help. I was doing OK, but improved my therapy after posting my graphs here.
Hang in there!

With one exception when I used a decongestant, I’ve had one hour of sleep per night since I started using the machine six days ago. I don’t think I’ve got enough data for OSCAR. I’ve changed to a full face mask without improvement. My nose seems to block up completely after an hour on the machine and then I can’t sleep any more. Im so sleep deprived in starting to have minor hallucinations which is scary.

The problem is life doesn’t stop. I’ve declined so rapidly I’ve had to pull out of a work contract and I don’t know when I’ll be able to work again. I can’t sleep _at all_. I’ve never felt so ill in my life.

I’m getting fitted for a MAD today. I don’t think I can do this any more.

I think it probably is worth the effort if your apnea is more severe. I’m lucky mine isn’t, but at the same time the reason it isn’t more severe seems to be that I wake up easily when my airway starts to block, and this has made my awakenings so, so much worse. Arousals are the problem and it seems insane to keep pursuing something that has worsened my arousals this much this quickly.

Pod153 wrote: ↑

Fri Dec 02, 2022 11:35 pm

I am on my second night with CPAP. I have worn it for 6 hours each night. I have slept for only one hour each night. I have taken Benadryl. I cannot sleep, at all. I just lie there feeling like I’m suffocating. I have never had insomnia before.

I think it’s a sensory issue with both the mask and the airflow. My AHI was only 5.4.

Short of a miracle I don’t see how I can continue on CPAP. Only getting a hour of sleep a night will kill me long before an AHI of 5.4 will.

I hear you. Have you tried an oral device yet? I can't believe they made you PAP with 5.4, as 5 is normal.

As someone who's had an oral device for several months, I can tell those of you getting them that they're super uncomfortable at first. You may only be able to wear it for short intervals to start. The plastic knobs feel like it's going to tear the inside of your mouth up.

However, just like braces (I had mine in 2015) once the skin in your mouth toughens up and your jaw gets accustomed, you'll barely notice it. This morning landscapers arrived while I was still in bed and I rushed outside not even realizing I was wearing it until I tried to talk!

Yes, it was super embarrassing but you get my point.

PS you might want to try the dental wax for braces to make it more comfortable - you can get it in any drugstore by the toothbrushes and floss.

KittyMom22 wrote: ↑

Thu Dec 08, 2022 12:59 pm

As someone who's had an oral device for several months, I can tell those of you getting them that they're super uncomfortable at first. You may only be able to wear it for short intervals to start. The plastic knobs feel like it's going to tear the inside of your mouth up.

However, just like braces (I had mine in 2015) once the skin in your mouth toughens up and your jaw gets accustomed, you'll barely notice it. This morning landscapers arrived while I was still in bed and I rushed outside not even realizing I was wearing it until I tried to talk!

Yes, it was super embarrassing but you get my point.

PS you might want to try the dental wax for braces to make it more comfortable - you can get it in any drugstore by the toothbrushes and floss.

Is the oral device helping?

KittyMom22 wrote: ↑

Thu Dec 08, 2022 12:54 pm

Pod153 wrote: ↑

Fri Dec 02, 2022 11:35 pm

I am on my second night with CPAP. I have worn it for 6 hours each night. I have slept for only one hour each night. I have taken Benadryl. I cannot sleep, at all. I just lie there feeling like I’m suffocating. I have never had insomnia before.

I think it’s a sensory issue with both the mask and the airflow. My AHI was only 5.4.

Short of a miracle I don’t see how I can continue on CPAP. Only getting a hour of sleep a night will kill me long before an AHI of 5.4 will.

I hear you. Have you tried an oral device yet? I can't believe they made you PAP with 5.4, as 5 is normal.

I'm unfortunately very symptomatic despite the low AHI - I have flow limitations leading to arousals around 60 times an hour, and they think that's why. I seem to be very efficient at waking myself up before my airway properly collapses but it also means I never ever rest. I meet the criteria for OSA, just, which makes getting prescriptions for this stuff easier, but as I understand it I have more in common with someone with a UARS diagnosis than I do with most people with OSA.

Unfortunately where the flow limitations were waking me up before, the CPAP is waking me up now, and it takes me much longer to get back to sleep which is why I'm doing worse than I was without the CPAP. I also realised after I wrote this that it's partly because the airflow is blocking my nose so much that I end up in a vicious cycle where my nose gets more and more blocked and the pressure gets higher and higher to compensate. This seems to happen even with a full face mask, although I get a couple of hours before my nose blocks up rather than ~10 minutes with my original pillows mask.

I was offered an oral device but I also have extremely crooked teeth, so the only options seem to be high-end custom ones which are triple the cost of a CPAP. I've used a semi-custom one before (when I thought I was just a regular snorer) but I ended up having to cut away at the plastic to be able to wear it at all, and in the end it completely screwed up my bite. I am sufficiently desperate that I am now considering dropping an eyewatering amount of money on a custom one now though.

Insurance may cover part of the MAD. Mine paid for half of it. I can pay for the other half with Pretax money in Flexible Savings Account, so that helps as well. Hopefully I will be able to use it.

joepublic23 wrote: ↑

Tue Dec 13, 2022 1:25 pm

Insurance may cover part of the MAD. Mine paid for half of it. I can pay for the other half with Pretax money in Flexible Savings Account, so that helps as well. Hopefully I will be able to use it.

I’m in the UK where the healthcare model doesn’t revolve around insurance. We have fully socialised healthcare but it doesn’t cover dentistry, and an MAD is considered dentistry (which I think is ridiculous, but I don’t make the rules).

If I’d taken out private insurance before I got the OSA diagnosed it might have covered it, but it would have been very very expensive and would probably have ended up not costing me any less. So it’s out of pocket or nothing really.

Interestingly in the USA when dentists do MADs, they bill health insurance policies, NOT dental insurance. The guy who fitted me for a MAD is both a Dentist AND a medical doctor! When I had my consultation he was able to see if taking my tonsils out would be a viable solution, but unfortunately they are too small to make a difference.

There are cheap over the counter MADs available, at least in the USA, but I don’t know how effective or comfortable they are.

Tonsils are important producers of killer cells, which play a role in ridding the body of cancer.

Glad to have mine.

I would gladly get rid of mine if it would let me sleep without snoring.

joepublic23 wrote: ↑

Wed Dec 14, 2022 7:02 pm

There are cheap over the counter MADs available, at least in the USA, but I don’t know how effective or comfortable they are.

There are some here too, and lots that are semi-custom boil-and-bite type deals, but I unfortunately have super crooked teeth which makes all but the fully custom ones impossible to fit, sadly!

I have used a semi-custom one for a bit before when I thought I was ‘just snoring’, but had to cut away part of the mouthpiece with a craft knife to fit in one particularly out-of-alignment premolar which didn’t work well at all. I think I probably am going to shell out for a custom one, simply because I feel like I need to try whatever I can to feel better at this point, but they’re truly eyewateringly expensive.

I really feel they should be covered by medical rather than dental care — they’re prescribed for something that affects the whole body! To add insult to injury, at many clinics, people with mild OSA who are less symptomatic than I am have to fail a self-funded dental device before they’re eligible to try NHS-funded CPAP. It’s been interesting and sad to see how many holes in our supposedly comprehensive healthcare system are exposed by this stuff, and I’m lucky to have some savings that I can afford to put towards trying to get my life back.

I’ve always found it weird that dentists are considered to be a totally different profession than medical doctors, as opposed to considering them as medical doctors who specialize in the mouth.

In the USA insurance always seems to require CPAP first. I don’t know if I could have gotten it to (partially) cover the MAD first. The pulmonologist who initially prescribed me the CPAP knew that I wanted Inspire, but Inspire requires you to fail at CPAP first. He wasn’t a very good doctor, he didn’t tell me that my AHI was too low for Inspire, I had to find that out here. He also didn’t seem to believe me when I told him upfront that I was very concerned that CPAP would trigger total insomnia (it did).

I had my tonsils out when I was six--multiple infections, and I was tiny to boot.
Not my decision at all--and they LIED about the ice cream!.

chunkyfrog wrote: ↑

Thu Dec 15, 2022 3:16 pm

I had my tonsils out when I was six--multiple infections, and I was tiny to boot.
Not my decision at all--and they LIED about the ice cream!.

My mother had hers out as an adult.

When she came out from under the anesthesia, my father leaned over and whispered, "They're gonna take the other one out tomorrow."

Theirs was a special relationship.