Unusual sleep disorder and need help

  1. A few years ago I was at what I thought was my end. I suffered from what my physician labeled as chronic fatigue polymayalgia syndrome. I was only able to be up/awake approximately 4 or 5 hours a day but not out of bed for too long. The rest of the time I slept. No matter how long I slept, when I awoke I would feel as though I HAD to go to sleep because I was exhausted.

    My Rheumatologist sent me to a sleep MD. Thank GOD. After the first consultation he seemed to know just exactly what was happening to me and recommended I spend an overnight to have a diagnostic polysomnogram. Just as MD thought, I have abnormal sleep physiology. One of the abnormalities being "markedly diminished stage III/IV (deep sleep, restorative sleep) which MD feels correlates nicely with the c/o persistent fatigue and severe body pains. Just the sleep physiology category was abnormal, but there are several abnormalities.

    He Prescribed an increase to my Zoloft, start provigil and Xyrem. I did just that and shortly thereafter I was ME again. It was miraculous.

    Is there anyone out there that has my condition or symptoms? Is there anyone out there with similar treatment, or a different course of care that is found to be effective? Many people I share with tell me to have my thyroid checked. I did, it was normal.

    My current insurance coverage is refusing to pay for the Xyrem as they consider it off label. I have non-formulary prescription coverage so I have already filed with the state 'AHCA' (Florida) to assist me further. A panel will be convening and I will be there to speak on my own behalf, so if any one out there has any information to arm me with I would certainly be grateful.

    Xyrem costs 500$/month. I am paying out of pocket and have been for some time. This med is approved by the FDA for cataplexy secondary to narcolepsy. Other than Xyrem, there is no other medication available that I have tried, and I tried many from sleeping pills to antipsychotics, that works for me. Without it I face disability and what is even more devistating is that I am the primary bread winner for my family. We are struggling to pay the 500$ a month, but we also know that we have no other choice. So we do what we have to. This drives me in in the battle to have the state direct my insurer to cover the medication according to the terms of my policy.

    Thank you in advance and sorry for the length.
    Karen
    Florida RN
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  2. 14 Comments

  3. by   pooh54
    Wow! Sounds like it could be a nasty drug but if it helps you have to take it. I've been using Trazadone( a unicycle antidepressant) and it works well for me, it doesn't put you to sleep but it helps you obtain lengthier level III sleep. I've found that I'm less fatigued since taking the med. Best of luck, you may want to talk to your sleep disorder physician about your problems with insurance, my MD's have always been able to work within my plans formularies but they need to know that I'm having an issue with the plan first. Best of luck! :icon_hug:
  4. by   mdrkan
    Thanks Pooh54 for your response. Actually the Xyrem is extremely effective, has a short 1/2 life, little to no (no for me) untoward effects, when taken on an EMPTY stomach, and I can d/c it at any time without MD supervision/titration. You probably know that Xyrem is also known as the "date rape drug". The difference of course being my course of treatment and titration up is supervised by MD and is done very very very slowly to achieve our goal.

    The thing is, there are not many people that have my extreme atypical sleep physiology. MD's can not determine definitive origin, but it all started during/after my 2nd and final pregnancy. My only option is to treat the symptoms that manifest. There's no cure, and likely no one is researching for one.

    Xyrem is the only treatment that totally works for me. It put's my brain in to deep sleep. I wake up refreshed and no longer suffer chronic fatigue and generalized body pain. But, it is not FDA approved for my condition therefore the insurance company is doing everything in their power to not provide any coverage what so ever. They will not even provide me with a Physician who is qualified to provide treatment. I pay out of pocket for Sleep MD too. MY PCP has tried to help, but he hit a dead end too. Seems you are not permitted to speak to the grievance department??

    If there was another course of TX I would be open to investigating it because the cost of the medication is a burden for our family and perhaps the insurance company would consider a different medication. After all, the insurance co. paid for every single off label medication prescribed for me, with no ?'s asked since the inception of my coverage. It's all about the $.

    I wish I could find some one else who has this rare type of sleep disorder. I really feel like I am all alone and on my own. My last hope is the State(AHCA) is convening at some point soon here I hope, for a formal investigation. Don't hold a lot of hope though as the insurance company has this built in vague language of a disclosure providing them an out for just about any reason what so ever they want to say. It's insane.

    Any way thanks again. I really am glad you responded.
    Karen
  5. by   NurseFirst
    Quote from mdrkan
    Thanks Pooh54 for your response. Actually the Xyrem is extremely effective, has a short 1/2 life, little to no (no for me) untoward effects, when taken on an EMPTY stomach, and I can d/c it at any time without MD supervision/titration. You probably know that Xyrem is also known as the "date rape drug". The difference of course being my course of treatment and titration up is supervised by MD and is done very very very slowly to achieve our goal.

    The thing is, there are not many people that have my extreme atypical sleep physiology. MD's can not determine definitive origin, but it all started during/after my 2nd and final pregnancy. My only option is to treat the symptoms that manifest. There's no cure, and likely no one is researching for one.

    Xyrem is the only treatment that totally works for me. It put's my brain in to deep sleep. I wake up refreshed and no longer suffer chronic fatigue and generalized body pain. But, it is not FDA approved for my condition therefore the insurance company is doing everything in their power to not provide any coverage what so ever. They will not even provide me with a Physician who is qualified to provide treatment. I pay out of pocket for Sleep MD too. MY PCP has tried to help, but he hit a dead end too. Seems you are not permitted to speak to the grievance department??

    If there was another course of TX I would be open to investigating it because the cost of the medication is a burden for our family and perhaps the insurance company would consider a different medication. After all, the insurance co. paid for every single off label medication prescribed for me, with no ?'s asked since the inception of my coverage. It's all about the $.

    I wish I could find some one else who has this rare type of sleep disorder. I really feel like I am all alone and on my own. My last hope is the State(AHCA) is convening at some point soon here I hope, for a formal investigation. Don't hold a lot of hope though as the insurance company has this built in vague language of a disclosure providing them an out for just about any reason what so ever they want to say. It's insane.

    Any way thanks again. I really am glad you responded.
    Karen
    A couple of possibilities:

    Check to see whether the pharmaceutical company has a plan to help people who can't afford the medication, for whatever reason--and see if you can qualify.

    Check on the web for organizations that help people who have rare diseases and need special medications--and are willing to help pay for them.

    I know that my HMO will only allow physicians to rx provigil for its on-label use of narcolepsy. It, too, is an expensive drug ($5/pill). My Dad was rx'd provigil for the tiredness that comes with cancer--but my HMO wouldn't have covered it for that purpose. (Provigil is a great drug).

    Best Regards,

    NurseFirst
  6. by   lawrencenightingale
    Have you or your doctor considered the use of a CPAP machine? I know of those with sleep apnea or narcolepsy who have benefited from same. I realize your diagnosis is different,but wonder whether it may be responsive to CPAP. My friends with the sleep disorders mentioned above say they have much more energy when using CPAP. Also, insurance payed or nearly payed for same. Best of luck.
    Quote from mdrkan
    A few years ago I was at what I thought was my end. I suffered from what my physician labeled as chronic fatigue polymayalgia syndrome. I was only able to be up/awake approximately 4 or 5 hours a day but not out of bed for too long. The rest of the time I slept. No matter how long I slept, when I awoke I would feel as though I HAD to go to sleep because I was exhausted.

    My Rheumatologist sent me to a sleep MD. Thank GOD. After the first consultation he seemed to know just exactly what was happening to me and recommended I spend an overnight to have a diagnostic polysomnogram. Just as MD thought, I have abnormal sleep physiology. One of the abnormalities being "markedly diminished stage III/IV (deep sleep, restorative sleep) which MD feels correlates nicely with the c/o persistent fatigue and severe body pains. Just the sleep physiology category was abnormal, but there are several abnormalities.

    He Prescribed an increase to my Zoloft, start provigil and Xyrem. I did just that and shortly thereafter I was ME again. It was miraculous.

    Is there anyone out there that has my condition or symptoms? Is there anyone out there with similar treatment, or a different course of care that is found to be effective? Many people I share with tell me to have my thyroid checked. I did, it was normal.

    My current insurance coverage is refusing to pay for the Xyrem as they consider it off label. I have non-formulary prescription coverage so I have already filed with the state 'AHCA' (Florida) to assist me further. A panel will be convening and I will be there to speak on my own behalf, so if any one out there has any information to arm me with I would certainly be grateful.

    Xyrem costs 500$/month. I am paying out of pocket and have been for some time. This med is approved by the FDA for cataplexy secondary to narcolepsy. Other than Xyrem, there is no other medication available that I have tried, and I tried many from sleeping pills to antipsychotics, that works for me. Without it I face disability and what is even more devistating is that I am the primary bread winner for my family. We are struggling to pay the 500$ a month, but we also know that we have no other choice. So we do what we have to. This drives me in in the battle to have the state direct my insurer to cover the medication according to the terms of my policy.

    Thank you in advance and sorry for the length.
    Karen
    Florida RN
  7. by   pooh54
    Quote from mdrkan
    Thanks Pooh54 for your response. Actually the Xyrem is extremely effective, has a short 1/2 life, little to no (no for me) untoward effects, when taken on an EMPTY stomach, and I can d/c it at any time without MD supervision/titration. You probably know that Xyrem is also known as the "date rape drug". The difference of course being my course of treatment and titration up is supervised by MD and is done very very very slowly to achieve our goal.

    The thing is, there are not many people that have my extreme atypical sleep physiology. MD's can not determine definitive origin, but it all started during/after my 2nd and final pregnancy. My only option is to treat the symptoms that manifest. There's no cure, and likely no one is researching for one.

    Xyrem is the only treatment that totally works for me. It put's my brain in to deep sleep. I wake up refreshed and no longer suffer chronic fatigue and generalized body pain. But, it is not FDA approved for my condition therefore the insurance company is doing everything in their power to not provide any coverage what so ever. They will not even provide me with a Physician who is qualified to provide treatment. I pay out of pocket for Sleep MD too. MY PCP has tried to help, but he hit a dead end too. Seems you are not permitted to speak to the grievance department??

    If there was another course of TX I would be open to investigating it because the cost of the medication is a burden for our family and perhaps the insurance company would consider a different medication. After all, the insurance co. paid for every single off label medication prescribed for me, with no ?'s asked since the inception of my coverage. It's all about the $.

    I wish I could find some one else who has this rare type of sleep disorder. I really feel like I am all alone and on my own. My last hope is the State(AHCA) is convening at some point soon here I hope, for a formal investigation. Don't hold a lot of hope though as the insurance company has this built in vague language of a disclosure providing them an out for just about any reason what so ever they want to say. It's insane.

    Any way thanks again. I really am glad you responded.
    Karen
    Dear Karen, I'm so sorry that I was unable to help, it sounds like you're dealing with a tough issue here. Insurance companies truely are rats :angryfire . Chronic fatigue and chronic pain are difficult enough to face without having the stress of fighting with insurance companies. I wish the best for you, I have CFS also, it's no fun
  8. by   mdrkan
    Hi pooh54-

    Thanks again for your reply. I am sorry to hear that you too have chronic fatigue. Have you identified a cause? Sorry if too personal. It was a miracle for me to finally figure out what was causing my secondary conditions, of course at the beginning I had no idea that they were even secondary because I had no idea that I had a sleep disorder. What I am getting at though is it is worth investigating, if you haven't already done so.

    If there is anything that I can do for you, let me know.

    Sincerely Wishing You A Blessed Day-
    Karen
    Florida RN
  9. by   mdrkan
    lawrencenightingale-

    Thanks for taking the time to offer your idea. I am glad your friends are receiving effective treatment with the CPAP therapy. That is so awesome. Although I can't be certain if I would benefit from it as the Respiratory Data and the Saturation Profile remained well wnl for the duration of the over night sleep study, BUT I intend to speak with my sleep MD soon so I will throw the idea our there and see what he thinks.

    However, even if he did believe it was worth it for me to try the CPAP, I would most likely start a brand new battle with the insurance company. See above if you need clarification of the last statement.

    Again, thank you.

    Have a Blessed Day,
    Karen
    Florida RN
  10. by   mdrkan
    NurseFirst

    Sorry for the delayed response. Thank you for your suggestions.

    The pharmaceutical company does have a financial assistance program, however since my sleepdisorder is not labeled as narcolepsy I can not qualify. For Pete's sake there is not even an official name for my sleep disorder. Sorry, I get so upset when I think about it.

    I do not know how to look on the web for organizations such as the ones you mentioned above. Not the most savvy on the computer, but what should I enter as my search?

    My HMO coverage has non-formulary benefits. I believe that coverage should be provided as my MD claims 'medical necessity' It's all about the money. Xyrem is very expensive. But it is the only FDA approved medication to date that can manage "ME" which allows me to be a Wife, Mom and the Professional Registered Nurse I AM!
  11. by   apaisRN
    I wonder if your doc could diagnose you with "narcolepsy with atypical features" or something? Not getting restorative sleep IS an issue in narcolepsy. It might not be 100% honest, but your insurance company isn't exactly playing straight with you either. I don't know what the downsides might be of carrying a narcolepsy diagnosis.
  12. by   mdrkan
    Quote from apaisRN
    I wonder if your doc could diagnose you with "narcolepsy with atypical features" or something? Not getting restorative sleep IS an issue in narcolepsy. It might not be 100% honest, but your insurance company isn't exactly playing straight with you either. I don't know what the downsides might be of carrying a narcolepsy diagnosis.

    Hi apaisRN,

    Since there really is no known label for my condition, that really is an excellent way to look at it. However, Xyrem is only FDA approved for cataplexy secondary to narcolepsy. So for me, I am still out of luck. It is so messed up; and so very unfair.

    I recently read that application has been made to the FDA to expand the 'indications' for Xyrem. I wonder how one can find out what the indication(s) are on the application? If they expand the indication to include narcolepsy, with your logic I just may have a shot. Thank you so much for writing me.

    God Bless,
    Karen
    FloridaRN
  13. by   mdrkan
    .........
  14. by   mdrkan
    I am finally scheduled to have a telephonic hearing before the AHCA panel on June 8th. I am excited and nervous. I have never done anything like this before. If anyone out there has and wants to give advice, I would truly appreciate it. I get 15 minutes to state my case to the panel. Then Vista Insurance gets 15 minutes for same. Then the panel will ask ?'s. Then Vista and myself have 5 minutes to rebutt (sp). Where should I keep my focus when I give this presentation? Please, please someone help. Please see my above posts for reference. Thanks in advance.
    Karen
    FloridaRN

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