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About Grillcheezy

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  • Birthday 12/20/1986

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    Boise, ID
  1. Thanks guys. Thanks for all the replies. If nothing else it helps to know I'm not alone. My doc wanted to try Xyrem with me, but I was just borderline on the requirements of the powers that be and didn't meet the requirements for the medication. Don't know how I would with metal electrodes gouging into the side of my head. He said he has no doubt that I am narcoleptic and the only thing that we can do is try another MSLT somewhere down the line. Provigil doesn't do jack for me as far as relieving symptoms, but I have another appointment coming up next week so I suppose I will keep my fingers crossed until then. It's sort of like living pay check to pay check, only living appointment to appointment hoping that the next one will bring some relief. For now I will trudge on. So long, nap time :\
  2. Hey all, I have been struggling with the symptoms of narcolepsy for approximately eight years now. When I first explained my symptoms to my parents the first response was to go to the family doctor. She tried a few medications including lunesta and ambien with no results. Her ability to treat my condition was very limited and she suggest that I see a psychiatrist. The psychiatrist took my symptoms to be a display of psychosis, which began a very long period of trying different medications and switching doctors. My parents even flew me to the amen clinic where they did brain scans. About a year ago, I went to see a new doctor and she suggested that I do a sleep study. To make a long story short I did the origional polysomnography where they determined that I had sleep apnea, did a second sleep test with the CPAP machine, fought with the CPAP therapy for a few months, had a dental device made, and had a third polysomnography with the dental device in which my sleep apnea was relieved. At my next follow up appointment I informed my doctor that I was still tired all the time. We did an MSLT, which determined that I had narcolepsy as well. I am currently taking ropinerole at night to relieve fragmented sleep and mondafil during the day to promote wakefulness. Everyday I feel like I am more tired than I have ever been in my life and to my shock and surprise the next day I will feel even more tired. When I was told that I have this condition that there is so little known about and that in the doctor's words there is "no magic bullet" was a real downer. I feel like giving up. I am tired all the time, depressed, I isolate from my friends, and am generally just miserable. I remember as a child being so happy all the time and just wonder if I will ever be able to get any relief. If anyone actually reads this whole thing I would be pretty amazed as I know that I wouldn't, but any feedback would be appreciated. I have no support groups in my area and this is really the only place I feel like people will understand me. Thank you. Joe