Trigeminal Neuralgia APAP issues

Okay, I’ve searched the threads here and can’t find anything specific to my issues, but sorry if I missed it. I’ve been dealing with severe Trigeminal Neuralgia pain for a few years now. It started seriously affecting my sleep several months ago, as anything touching my face triggers extreme pain, and I asked my doctor for help. His immediate response was a sleep study, which found a “possible case of mild sleep apnea”. I know the sleep loss is due to pain, as I can’t even put my head on my pillow without 7-10 out of 10 pain. But I am attempting to play along with the sleep apnea “solution”. Several immediate issues though. Went through several masks as most of them trigger nerve pain from touching my face and couldn’t even attempt to use the machine. Ended up with a nose pillow mask that doesn’t directly touch trigger points, but still isn’t great, but on to the next issue which has yet to be solved whatsoever, and what brought me here. The air coming coming out of the machine/hose is too cold. Breathing in cold air severely triggers pain, so much so I can’t leave the house during winter months. I have a philips dreamstation with humidifier and just got the heated hose today. I let it run for about 15 minutes to attempt to let it heat up the air, with the humidifier and hose heat maxed at five, but was only able to use it for about two minutes, as the noticeably cold air triggered extreme pain. I’m at my wits end, as the doctor won’t consider other treatments for sleep until I give the apap “a serious effort”. Any thoughts or suggestions on what else I can do to be able to tolerate this machine would be helpful.

If your doctor is not a pain soecialist, ask for a referral to one.
It sounds like your doctor is not sympathetic to your degree of pain.

Get a referral to a neurosurgeon who understands e.g. that the nerve(s) causing TN are closer to the back of your head... and he/she might have some fixes. Are you taking Tegretol?

Thanks for the responses!! My doctors are through the VA at the worst rated VA hospital in the country. Very unsympathetic. Very slow to do anything. Which is what brings me to the internet for medical advice. I’ve tried tegretal and all of the other nerve pain meds over the last two years, but my TN is past most of that, and I’ve already had one surgery, and waiting on another. Was just hoping for some trouble shooting tips on the machine and cold air. If I can get through a few full nights of use, they might be willing to explore other options.

So what temperature did you set the machine to deliver the heated air through the heated hose?
Did you know that the default air temp setting is a middle of the road setting? You have to manually set the air temp if you want higher.
Be aware that even at the max available heated air temp it is still going to feel cool because it is still lower than your body temp.
It all starts with the ambient room air temp though and if that is on the cool side....it becomes harder to warm the air in the hose and keep it warm.
Plus if you are using a mask that has a short hose as part of the frame...the ambient room temp will start cooling down that hose air temp.

Now you can maybe add some sort of hose cover to the short hose to help reduce that change....I have used socks slid over the short hose to keep it insulated and keep the air warm.

So you have to set the hose air temp as high as it will go and you might also have to use some sort of short hose cover if your mask has one of those....to keep the air was warm as possible.

Pugsy, thanks for the suggestions. I turned the heat up to the five setting, which is as high as it goes. If there are temp settings elsewhere, I didn’t see those, but it was my first attempt last night, and once it triggered my pain, I had to stop. I will look at more of the settings today. And yes, the mask has a short hose between the heated hose and the mask. I will try to find something to cover that. How long should it take for the air to heat up, rough estimate? I saw a thread that someone said they ran it for an hour or something to let it heat up.

I haven't ever used a DreamStation heated hose so I don't know how long for it to warm up but with my old SystemOne heated hose...about 15 minutes to get it up to temp.
The setting of 5 is as high as it will go but the problem with SystemOne Respironics machines (and I assume the DreamStation) is that is starts with the ambient room air temp and increases increments from the ambient temp and the cooler the ambient room air to start with the cooler the final product will be. Meaning if your ambient room air temp is on the cool side then the final product is going to be on the cool side. I forget the exact increments but it's like if your starting room air temp is 68 degrees the final product might be 78 degrees whereas if the starting room temp was 72 degrees then the final product might be 82 degrees...examples only as I don't remember exact increments and I don't have the document links handy to refer to.

I would assume that the DreamStation still uses the same technology for warming the hose air as with the SystemOne model. I don't think they ever changed that way of doing things.
Unlike the ResMed machine which has an actual temperature selection for the hose air.

So you may need to alter your room air temp as well....or maybe the addition of a hose cover on the short hose will help enough.

Remember anything cooler than your own body temp is going to be perceived as cooler though. It's just how the body perceives things.

Now there is the option of a stand alone heated hose that just keeps cranking out warmer air that doesn't have temperature sensors or rheostats involved that will produce much warmer air but that's a whole different can of worms to open. If you start adding hose covers to those the air can actually feel hot and much more uncomfortable and they even tell people to not use hose covers.

You can try routing your hose under your bed covers in an effort to keep the air warmer.