I am sure I have mentioned before that I have sleep apnea and I wear a CPAP to sleep. I have always hated wearing that thing, but I’ve gotten so used to getting a great night of sleep, that I really can’t go without it. However, I’ve also mentioned my trigeminal neuralgia. The straps on the CPAP mask aggravate my already damaged trigeminal nerve. Therefore, I go to sleep in pain, and I wake up with pain. I have spoken to the Sleep Clinic about the issue and have discussed with them a surgery that would implant a device, much like a pacemaker, that would have the same effect as the sleep mask, but not be as intrusive. However, the Sleep Clinic wants me to prove that the CPAP failed before they will let me be considered for the other device. Partly, this is because of insurance. I went to the medical equipment specialist that handle my CPAP supplies for a fitting for a new mask a few months ago. The mask they gave me is just as bad, plus I can’t breathe well enough through it, so I had to go down to the Sleep Clinic yesterday for them to try and fit me with a new mask.
That was an ordeal and a waste of time. First of all, the clinic is at Dartmouth-Hitchcock Hospital in the same building as the Headache Clinic, so it’s about an hour’s drive. Second, I don’t have the same confidence in the Sleep Clinic as I do in the Headache Clinic. When I first got the CPAP, they were supposed to follow up with me every three months, yet they forgot about me. It was only because I was having trouble with the CPAP mask and trigeminal neuralgia that they took notice of me again. That had me annoyed when they told me this three months ago. I got a call a few weeks ago wanting me to do a mask fitting before my appointment with the Sleep Clinic’s nurse practitioner on October 26. So I made the appointment and went down.
After trying on several masks, I told the respiratory therapist (RT) how much they hurt. All of which caused me to be in quite a bit of pain for the rest of the day. The RT I met with sent me home with a new mask to try, but I don’t hold out much hope it will work any better. It hurt to wear it for a few minutes down there, just like the others. I don’t know what she thinks it will do to sleep in it that’s different? What really aggravated me was that I had to pay $55 for basically the “pleasure” of visiting a showroom with a hospital bed in it. What bullshit! The lady was nice, but I really don’t think they should have charged me for this. The supply place didn’t charge me for their mask fitting, but because this was done in a clinic, they charged me, even though they did the exact same thing, I had to pay the higher copay to see a “specialist.” I’m also sure they will charge me for the mask they sent me home with.
I have told the Sleep Clinic people that my neurologist has already said that as long as I am wearing a CPAP at night, it will continue to prevent my trigeminal nerve from healing. It told the RT the same thing yesterday, to which she replied that maybe I should ask my neurologist if she has another solution to my sleep apnea. She said it in a very nice and “concerned” way, but I still felt like she was being somewhat dismissive of the advice I’d received from my neurologist. By the way, if I do qualify for the surgical implant, Dartmouth can’t do it (they have no one trained for it), and I’d have to go to the University of Vermont (UVM) instead. At this point, I wish I’d been referred to the UVM in the first place for my sleep apnea. I wasn’t originally sent to them because my doctor, who works for UVM, knows what a pain in the ass they can be. I see my neurologist Tuesday, so will talk to her, and then on the 26th, I’ll see what the Sleep Clinic has to say.