Hi everyone I’m new here and trying to get the hang of this I’ve never had a discussion or conversation with anyone who has narcolepsy well anyway I am having a really hard time right now I have had some very bad accidents due to sleep walk-in falling asleep standing and not sleeping I was diagnosed in 2014 I’ve been in a nursing home since. My insurance keep giving me the run around for exrem I need it bad
HELLO AND WELCOME! I WAS DIAGNOSED IN 2011, AND ITS A NEVER ENDING BATTLE BUT KEEP YOUR HEAD UP AND CONTINUE TO FIGHT THIS DIBILTATING DISEASE I KNOW I WILL NEVER GIVE UP! There’s a place called cephelon cares they will help you with xyrem they helped me and I had to pay nothing my insurance didn’t have to pay anything either. Best wishes to you: )
This is the web site to go to for all the info: (Cephalon Cares Foundation Patient Assistance Program …) just type this in Google search bar.
Exyrem is pretty hard to get, however once you do,the company it comes from makes everything very easy for you. Best advice I can give, would be to look into what your doctor can prescribed. They have to be a Exyrem approved doctor. My fist sleep specialist wasn’t approved, and I didn’t know. He was telling me that we needed to try every other option, and at MAX dosage. I crushed my back molar in half from grinding my teeth so hard. But after he left and my new doctor started,(who was a narcoleptic specialist,not just sleep) she change all my medication and was able to get my exyrem started. It sucks not having what you need, and it takes so much away from our lives. The people here, understand. But your in the right place. Message me, or anyone here, if you need help with anything. Keep that sleepy head up. It’s a fight, but it’s one, that us sleepy people can win.
My experience with Xyrem turned out to be less than desired. It affected my mind in a very negative way. At the same time my wife was experiencing severe depression problems. It was a very trying and desperate time in our lives. I only used Xyrem for 6 months but one of the side effects that I experienced to this day is neuropathy in my feet. The sleep doctor switched me to Ambien or Temazepam at night and Ritalin or Modafinil during the day. Lately I've only been taking the sleep medication. The narcolepsy plus another autoimmune disorder forced me into retirement at age 64. Xyrem puts you into stage 3 and 4 sleep which is missing in my life. I have the sense of never getting a good nights sleep and my memory has suffered. Hope it is not senility. I have had mild narcolepsy most of my life but as I aged it became more apparent. For me the the worst part of the disorder is not being able to go to sleep at night thus the sleep meds. Thats my story, hope it gives some insight.
I too am very new to having anyone to talk to that has narcolepsy. I was diagnosed in 2014. In a way I feel very lucky because I had only been showing symptoms for about two months. I was 53 when it started and I lost my job within two months because I would collapse at work. I take 72 mg Concerta and Prozac to get through the days but nothing at night yet. My dr wants to put me on the Xyrem but it scares me. I already sleep with a c pap because of sleep apnea and fear the side effects. I do not sleep well at night. I usually can get right to sleep but an hour or two later I am done sleeping. My legs are in full gear and moving constantly. My dreams make me violent and I wake up last many times.
I will say it is nice to know maybe someone that reads this will understand like no e without this problem can. I hate also that I can no longer go anywhere alone. My family does not complain but I hate feeling like a child again. I have never been also dependent on anyone.
Ranger2 said:
My experience with Xyrem turned out to be less than desired. It affected my mind in a very negative way. At the same time my wife was experiencing severe depression problems. It was a very trying and desperate time in our lives. I only used Xyrem for 6 months but one of the side effects that I experienced to this day is neuropathy in my feet. The sleep doctor switched me to Ambien or Temazepam at night and Ritalin or Modafinil during the day. Lately I've only been taking the sleep medication. The narcolepsy plus another autoimmune disorder forced me into retirement at age 64. Xyrem puts you into stage 3 and 4 sleep which is missing in my life. I have the sense of never getting a good nights sleep and my memory has suffered. Hope it is not senility. I have had mild narcolepsy most of my life but as I aged it became more apparent. For me the the worst part of the disorder is not being able to go to sleep at night thus the sleep meds. Thats my story, hope it gives some insight.