xyrem and alpha intrusion

Discussion in 'Fibromyalgia Main Forum' started by gatorlass, Dec 1, 2006.

  1. gatorlass

    gatorlass New Member

    To Everyone:

    I have read many, many posts on xyrem and its effects on alpha intrusion. I was convinced relatively quickly that xyrem would probably be indicated for my problem. I went to see my Neuro (DR) because I was having all these dreams at night. I felt like I was up half the night dreaming. He told me that everyone remembers their dreams if they wake up during them and it was no big deal. Later that night (I can usually think of a snappy retort, but it takes hours!!:) it occured to me that I must be waking up several times a night to remember so many of them in one night. Anyway, I asked if he felt xyrem would help me and he said "NO" I'm taking the best meds for FM, Elavil, which I've been taking for 20 years. I've never been prescribed any other med. He also told me I needed more exercise. Anyway I also asked for a sleep study (he dx me 20 years ago with Fibromyalgia but has NEVER done a sleep study on me) and he agreed. I went for the study and low and behold, I have alpha wave intrusion during delta sleep. Just what I had been complaining about. So I asked him again, don't you think xyrem would help me. He said "NO", you just need to get more exercise. He prescribes it to his narcolepsy patients so I know he is familier with it. He says it isn't the "GREAT" drug everyone makes it out to be. I was never very optimistic he would prescribe, after 20 years of never trying anything different, but I gave it a try!!:)

    Anyway, the reason for this long email is: HOW DO I GO ABOUT FINDING A DR. WILLING TO AT LEAST LET ME TRY THE XYREM!! I live in Central Florida and am desperate to give this a try. I tolerate medications very well. Can anyone out there give me some advice? Thanks in advance for your help.

    Cathy
    gatorlass
  2. bebophow

    bebophow New Member

    Hi,

    I'm not sure what alpha wave intrusion is, but I'm dealing with chronic sleeping & depression I go down for days the sleep problem has been going on about the last 9 months i have literally slept 9 months of my life away ANYWAY!!! I am seeing a psychiatrist also a pulmonary specialist I was on Zyrem I took it @ bedtime then had to get up 2 hrs later to take another dose I really didn't see the sense in that but they said you needed to double up on the dose to make it last the night but you couldn't take it all at once.It made me tired but that wasn't the problem i didn't have any problem sleeping believe me, BUT they said I wasn't getting the rem or the quality of sleep I needed. I am sorry to say it didn't help me at all it is very closely controlled by the FDA it came directly from the drug co. itself my Dr. had to send in an app.and explain why he wanted to prescribe then the drug co. called me asked ? so on. I'm not saying it wouldn't help you but it didn't do anything for me. I wish I could have been more help. It was the pulmonary specialist that suggested it and it was suppose to be the bomb!!!! Good, Good luck to you
  3. alaska3355

    alaska3355 New Member

    I don't know about a doctor, but you could try typing in on the good doctor list above...see if that helps. Also, do a search above by typing in Xyrem- I remember Julie is Free had a lot of interesting posts about her positive experience with Xyrem. Good luck!
  4. timsangel

    timsangel New Member

    I have been using Xyrem for several months now, I was dx with narcolepsy and after just trying stimulants which were not that effective my neuro started me on the xyrem b/c the sleep I was getting was not restorative and like you I had terrible dreams and several a night, I would wake up thinking there was someone in my room it was so real...with the xyrem I am sleeping and feeling more rested the next day, still not 100% the old me but now they are telling me they think I have fibro too...at least I feel like getting out of bed now thats an improvement..If you have any specific questions regarding xyrem feel free to ask and I'll do my best to answer them...It's a shame the Dr you have been seeing won't at least give it a try to see if it helps you, have you asked him why he doesn't want you to use it?? I would want to know his reasons to see if I could punch holes in them so he may have to reconsider...if you go to xyrem.com it tells you all about the program and the drug.Good luck!!!!
  5. deliarose

    deliarose New Member

    for a dr in your area who prescribes it.. then change docs.

    Having said this, I was one of those people who "flipped out" on Xyrem, and I subsequently spoke to several docs who were very leery of it..

    It's a powerful drug and it's mechanism of action is unknown.

    I had great sleep on it tho ... for a week.. before I lost my mind (and 8lbs)!
    Bizarre.

    Delia
    delia
  6. cph13

    cph13 Member

    Gatorless, my lung specialist has been hounding me ever since he did a sleep study. I woke up 19 times an hour and had no repeat no stage 3 & 4 sleep. That is the restorative sleep. I suggest you have a sleep study done. Around here the Lung guy does it but I am sure the neuro can order it or call a sleep study clinic recommended by your PCP.

    The coward I am, I refused it last year. Last week I went back to him just to check on my lungs. Again he hounds me on the xyrem. I did complain about the CRS and lack of focus. He says well.........take the xyrem. My fibro patients all want to hug and kiss me after taking xyrem.

    I am frightened to death but I whimpped out and am waiting to get it. Still scared though. What are my choices this is more than just silly fibro fog this is bad bad Can't Remember Stuff. Losing money. Leaving the keys in the door. etc.

    How many of us CFS and Fibro patients feel they are losing their minds do to CRS and lack of focus???????????????????????? Is Xyrem the answer?????
  7. Daisys

    Daisys Member

    If you go to the vitality101 site, you can find a list, under practitioners, of doctors who've trained in the Teitelbaum protocol. That's how I found a local doctor who understands the sleep disorder of CFIDS/FM and got me on xyrem.

    Since you've read posts about xyrem at this site, you must be aware of how much it's done for me. :)
  8. gatorlass

    gatorlass New Member

    Thanks for you input/help. I just spent most of my day yesterday (hope my supervisor didn't notice!:)) online and on the phone trying to find someone in Florida who would even consider prescribing xyrem - No Luck. I'm not going to make an appointment and waste everyone's time and money if they don't even prescribe it. I have a feeling I'm going to have to go to Atlanta to FFC. That is the closest one to my house. They are doing the stage III study on xyrem in Fort Lauderdale but since I work it would be very difficult for me to participate. You have to go off all your meds and then you have a one in three chance of not even getting xyrem! I can't afford to miss any work. I've called xyrem and they don't have a dr referrel anymore. I called everyone on the good dr list and none of them prescribe it either. If there is anyone who lives in Florida and knows a dr here please contact me as I'm becoming desperate.

    Best Regards
    Cathy
  9. bunnyrabs

    bunnyrabs New Member

    Cathy,

    There is a doctor in Florida who I have read (somewhere on the net) prescribes Xyrem. His name is Dr. Kenneth Woliner and I believe he is in Boca Raton. He is very open minded and he seems to have a lot of fibro patients. I think he has taken Dr. Teitelbaum's workshops as well.

    Do a search on his name and call his office and see what they say. I think he even does phone consults for those outside his locality (i.e., telemedicine).


    edited: Now I remember where I read about this doctor. Please see the following posts on talkaboutsleep.com's message board:

    http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=18552&view=next





    [This Message was Edited on 12/05/2006]
  10. gatorlass

    gatorlass New Member

    Everyone:

    Thanks so much for your help! I've made an appointment for Jan. 08 to see Dr. Woliner's associate Dr. Annette Chance. It's 3.5 hr drive but if I can get the Xyrem RX It'll be worth it. I feel like Xyrem should help my alpha intrusion sleep problem.

    I've been reading about some of the side effects of the xyrem and wonder it you would be able to recommend what supplements I might need to take once I begin the treatment. I could get them in advance. I'm one of those people who like to plan, plan, plan.

    Thanks Again for all your replies and help.

    Best Regards,
    Cathy
  11. Daisys

    Daisys Member

    That's a good idea, Cathy.

    I know magnesium is a biggie. Also niacinamide, B complex, C complex with bioflavinoids, and amino acids are recommended.

    That information comes from the narcolepsy board at the Talk about Sleep site. There's a lot of info about how much, etc. I recommend reading the threads there that pertain to xyrem.