UARS & Bad/Wrong Medications

[bookworm]

I had one of the worst nights ever. I literally did not sleep. My neurologist at the VA gave me a prescrip (butalbital) for when I have a severe onset of a migraine. Like when I'm driving and it hits suddenly so awful it actually makes me jump like someone is stabbing me thru the top of my head into my eye. Well it has a barbituate in it and it was the first time I took it. I took it about 1-2 hrs before bedtime.

I have sleep apnea (Upper Airway Resistance Syndrome to be more specific). I did not sleep. The handful of times I dozed, I literally jumped up heart racing unbelievably bad (way worse than anything I've ever had in the past with my sleep issue) because I thought not only was I completely stopping breathing but I literally after the first 2 kicks of it doing that that I would go to sleep and not wake up. Why in holy Hannah's name would a doctor prescribe that to someone with a breathing disorder? (It's only been today that I looked and saw that a sleep disordered person should not take barbituates.)

Well on top of that, I contacted my insurance about the surgery for soft palate etc because my RDI index without a cpap is 40 and with a cpap is 23. The mouth appliance did not work and the cpap only helps slightly. My insurance considers UARS and anything to do with it experimental and doesn't even classify it as having anything to do with sleep apnea. They won't even count RERA's, only Apneas and Hypopneas. Therefore won't treat or approve any coverage at all for anything to do with UARS. This is awful.

How am I supposed to get adequate treatment? I can only assume that like "real" sleep apnea, left untreated, my UARS could damage my heart and everything else. It's already effected my blood pressure (hypotension in lieu of the hypertension often seen with apnea). My PCP won't even accept the sleep study from the sleep clinic and let me bring it to the VA for treatment because she feels it does not meet the criteria because I only had 7 hypopnias. My over 185 RERA's in 6 hours didn't matter. I'm so frustrated and worried and just fed up.

[adrianne]

I don't have my sleep study in front of me, but I got dx'd with severe OSA with mostly RERAs and only 4 obstructive apneas, I think. Of course I have private insurance, not VA, so we may be dealing with different criteria. Are you saying they won't let you use CPAP therapy?

[bookworm]

I was actually able to get a cpap because my sleep clinic doctor (outside the va) had originally suspected I had narcolepsy when he found the UARS on top of my dream/quick sleep issue. So because of my MSLT results and whatever combo, he was able to get it approved. I personally wonder how they "fenagled" it because I remember some chatter between them in the office about what would and wouldn't make it covered. I don't even know. I do know that after I was diagnosed, it took I believe 6 weeks to get the cpap. They kept saying they were going back and forth with Aetna etc and Aetna was saying they weren't. I have no idea. Seems like forever ago now. So I do have a cpap and the cpap helps slightly - slightly in that the only difference I notice is that I don't get up to "pee" 4-6 times per night. I only get up once or twice now. I say "pee" because I didn't always have to go but since I was awake convinced myself I should I guess. So I'm still exhausted, still having memory/attention issues, developed low blood bressure etc.

[sandman19]

Have you ever been evaluated for cluster headaches? Their treatment may be different from other migraines, and may include breathing oxygen for 5-10 minutes. Best wishes.

[fiberfan]

Have you talked to your sleep doc about the continuing sleep problems?

[Mary Z]

Lots of folks just don't know about UARS. It's a tough one.

[avi123]

OP has not asked any question so I deleted my "reply"