Need a mask suggestion

[Minky]

Apologize in advance for the long post.

I started CPAP in 2014 after years of extreme fatigue and exhaustion. Two sleep studies showed an untreated AHI of 0.1, so clearly I do not have apnea.

My sub-par sleep doctor gave me an APAP prescription for suspected UARS, I think just to make me go away. It didn't really help the fatigue and I got desperate and went to an ENT doctor. He was excellent and said that I had no treatable issues with my upper airway, but believed me that there was something really wrong and referred me to his equally excellent colleague in neurology.

I saw the neurologist in May 2015. He immediately suspected MS, which causes extreme, life-altering fatigue. He sent me for thorough spine and brain MRIs. My brain, brainstem and spinal cord are full of MS lesions.

I stopped using CPAP and attributed all of the fatigue to MS. However, about a year ago I developed trigeminal neuralgia, which is extreme pain on one side of the face. Nicknamed 'the suicide disease' due to the intensity of the pain. It can be caused by two things - brain arteries pressing into the nerve or MS brainstem lesions. Or both. I'm one of the lucky few who has both.

I had brain surgery in April to fix the issue of the brain artery (three arteries in my case) pressing into the nerve. While I was in the hospital my oxygen dropped a lot while I was sleeping to the point that the nurses made me have oxygen while in the hospital.

So, clearly I do have some kind of sleep-disordered breathing. I took out my APAP and started using it again. It doesn't help the fatigue despite getting the 0.0 smiley face most days, but I'm still going to keep using it since having 80% oxygen while asleep is not good for anyone.

The problem is the mask. The surgery took care of about 75% of the trigeminal neuralgia pain, but I'm still in pain. It runs along my cheek in the area of my top row of teeth.

Is there a mask that provides minimal or no contact with the side of the face? I looked at the Tap Pap, but the pain is in my teeth and I'm afraid that biting down will make it worse.

Any suggestions would be greatly appreciated. Thanks!

[greatunclebill]

the answer is simple. if you don't have apnea, you do not need cpap. if your o2 is dropping at night and you don't have apnea you simply need an o2 generator to supplement your o2 just like they did in the hospital. you don't need a mask.

[zonker]

i'm so sorry for your condition.

i don't know offhand of a mask that would be to your liking and needs. but have you tried looking around at https://www.cpap.com/ ?

there are plenty of reviews there and, of course, pictures.

it may give you something to do while waiting for recommendations here.

good luck!