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  • Severe Insomnia, nightmares and meds

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    Old 06-02-2010, 11:40 PM   #46
    Janaly
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    Re: Severe Insomnia, nightmares and meds

    Hello Bilbo,

    I've been off the forum for a while. Just now though took
    a quick glance at your post and have not had time to catch
    up and read the prior posts.

    I know of two people who have used Xyrem. One for Benzo
    withdrawal treatment. The other for chronic severe insomnia.
    With both people, they stopped after one dose due to side
    effects that for them were quite severe. Of course each of
    them had a unique combo/coctail of meds that they were
    perscribed and had been on a while before taking the Xyrem.
    They took their first dose of Xyrem at night bedtime pm in
    both cases.

    Neither was able to continue safely on it for their individual
    reaction to the med.

    I will be back to catch up on your thread sometime soon.

    Janaly
    __________________
    Intercystial Cystitis
    Cervical Neuralgia
    Insomnia challenges
    Allergic to Shellfish
    *all are being treated*
    but not with perfect success.

     
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    Old 06-03-2010, 11:11 AM   #47
    Bilbo
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    Re: Severe Insomnia, nightmares and meds

    Janaly,

    Thanks for the rather quick reply! Ya know its just good to know that there is someone out there listening to you so thanks.

    My GP had mentioned going on to "taking much stronger meds".....he didn't mention this one by name but I think its one of a few he had in mind and his worry was the side effects could be really bad and irreversible. We decided to pass. I can't work because of the problems with my spine so I guess I just have to live with sleeping when my body will sleep. I tried his new Doctoral effort, Lorazepam (Ativan) with no success in sleeping. It did make me feel one with the couch then bed. But I laid there for an hour and decided to get up and do something else (as good sleep hygiene suggests). At 3am I ended up taking an Ambien CR that my Dr's PA had given me and it worked...in combo with the Ativan which I had taken 3 hours prior. So I am going to call my Dr. and ask him is its ok to take Ativan at like 7pm and then Ambien at 10pm. I would go with Ambien CR but I don't think its in generic so its super pricey and I am already paying close to $350/month on medication.

    rant-
    On a side note, the recent "fix" in the Medicare "donut hole" is a joke. We figured out my donut hole cost would be a couple thousand dollars and a reimbursement check for $250 is insane. When I had insurance I was much better off. I was taking the meds I needed. Cymbalta instead of Celexa. Oxycontin rather than methadone, Androgel rather than a compounded paste (testosterone), and on and on. Medicare part D is still a racket and little gem for the pharma's. Grrr. -end rant
    __________________
    2 Lumbar Lamies 93 (age 22); Cervical Fusion C4-C6 2004. Lumbar Fusion w/ hardware S1-L4 2007, DDD & stenosis entire spine. super low T. 30mg Methadone BID 10-20mg Norco 4 BT. 2mg Xanax PRN.

     
    Old 06-03-2010, 03:35 PM   #48
    Janaly
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    Re: Severe Insomnia, nightmares and meds

    Hello Bilbo,

    I was just now replying to your post again in length a bit and it disappeared into thin air.
    Continuing on then:

    I am definitely listening. Being a chronic insomnia bout individual myself for many years.
    Sometimes my treatments are successful for a period of time and other times not. I too
    know the arena of efforts and frustrations. I also know the thankful feeling of making
    some headway now and then also.

    Back to you though right now:

    The Xyrem is a medication to use with extreme caution and if possible (were you to
    ever consider it) I would suggest being in a setting of course where someone reliable
    were there to call 911 were you to need any intervention or assistance. You may or
    maynot be someone who would do well with the treatment. I cannot say of course.
    I am just familiar a bit with the two people I mentioned and their reactions to using
    it once.

    Medication costs I know! My insurance is limited at present and I can't consider just
    a couple of the meds I am interested in, being I don't want to pick up 50 % of the cost.
    But the good news is I am only on two meds overall, so I am counting my blessings.
    Still though the sleep study is not approved for me.

    The medicare donut hole. Ya isn't that something! I have compassion for your rant.

    I will be following your thread. I've had a death in my friendship family. Also things
    are rather busy is my life again. Meaning more hectic than usual.

    The best to you,

    Hugs from a fellow insomnia friend.

    Janaly
    __________________
    Intercystial Cystitis
    Cervical Neuralgia
    Insomnia challenges
    Allergic to Shellfish
    *all are being treated*
    but not with perfect success.

    Last edited by Janaly; 06-03-2010 at 03:38 PM. Reason: typos

     
    Old 06-04-2010, 12:59 AM   #49
    Bilbo
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    Re: Severe Insomnia, nightmares and meds

    Thanks Janaly,

    Sorry about your loss. Loosing a friend really stinks.

    I talked to my Dr's assistant about taking Ativan and then Zolpidiem (gen Ambien) a few hours later. He had no problem with it. He cautioned me about stacking and taking too much (methadone+ativan+ambien) all at once but seemed fine with me stacking them farther apart. We'll give it a shot. You know how we refer to insomnia as "the wheels spinning in my head". My Wife and I call it the "hamsters on the wheels", lol). Well I am picturing (in my minds eye) these hamsters drinking a few beers while hanging out at the "wheels". That would be the Ativan. A few hours later, after pounding down a few beers they decide to get crazy and do shots. Line up the Kamikazes!! That would be the Ambien. Should knock those little guys right out and they don't get a hangover, lol.

    Thats my analogy that the hamster wheels spun up last night when I couldn't sleep and it was 4am. Where the mind will go when you are at that state.

    I have decided to not go down the "hardcore" drug road. My insomnia is bad and certainly inconvenient but its not worth all the side effect and having someone able to 911 me. Like I mentioned in a previous post I am not working and other that taking care of the house and cooking I have no reason that calls for severely forcing sleep. So, I talked with my Wife about it today and we came to the conclusion that I sleep when I can for right now. Need to let the pressure of getting to sleep at a certain hour go and just let it happen. If I sleep from 5am to 1pm, so be it. I really want to be awake when my Wife is home from work but it may not work out all the time. Maybe this more relaxed approach will help. We'll see.

    Thanks again for the kind words my Insomniac friend. What is turning your wheels at night? lol
    __________________
    2 Lumbar Lamies 93 (age 22); Cervical Fusion C4-C6 2004. Lumbar Fusion w/ hardware S1-L4 2007, DDD & stenosis entire spine. super low T. 30mg Methadone BID 10-20mg Norco 4 BT. 2mg Xanax PRN.

     
    Old 06-04-2010, 05:16 PM   #50
    Janaly
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    Re: Severe Insomnia, nightmares and meds

    Hello again,

    Wanted to reply to your post a bit as I will be off the net for awhile (I think?)

    As for me I have had sleep onset issues since my younger years, than of course
    becoming more chronic in my early 40's up until now which is 56 years old. Onset
    sleep over the years has been my biggy.~~ Since my early 40's insomnia coupled
    with my Intercystial Cystitis has been a challenge! I continually work at and with
    both disorders along with my doctors & being proactive with my own participation
    in a large variety of areas. I take my vitamins and supplements, not always faith
    fully but usually.~ Exercise not always faithfully. Healthy eating not always faith
    fully BUT all in all even with those things in place, I have immense challenges.
    So what keeps me up and my wheels turning are bunches of stuff....along with
    stress and sometimes I can't even say for sure ya know. Also having went on
    through Menopause and all it's issues.

    I so enjoyed your post and analogies...hamsters etc. That was so right on and
    how chronic insomnia feels even with treatment and attempts to find the best
    combo of medications for assistance.

    Being up till 4am is absolutely awful isn't it. That desire and need to sleep but
    things don't turn off at times even with sleep hygiene and meds.

    It is nice to hear that your wife is supportive and will work with you through
    all of these sleep issues. She sounds wonderful.

    I am heading back out to a work shift..sort of running I might add.

    Take good care and I understand.

    Janaly
    __________________
    Intercystial Cystitis
    Cervical Neuralgia
    Insomnia challenges
    Allergic to Shellfish
    *all are being treated*
    but not with perfect success.

    Last edited by Janaly; 06-04-2010 at 05:17 PM. Reason: typos

     
    Old 06-06-2010, 08:56 PM   #51
    sylviasix
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    Re: Severe Insomnia, nightmares and meds

    Hi there!

    I wanted to reply to the individual who asked me why Xyrem helps for sleep. I am actually not sure how it works for people with Narcolepsy. I can tell you how it works for people with severe insomnia. It puts you to sleep rather quickly and the best part of it is that you get REM sleep. I have severe fibromyalgia and if someone took this a way from me I would have absolutely no life. If your insomnia is ruining your life than I think you should suggest this to your doctor. I do warn you that I do not believe all insurance companies cover this. This drug costs insurance companies approximately $900 a month. If you can get this go for it. Please update me as you go along so I know how you are doing. Just reply to this trend. Good luck!! Sylvia :-)

     
    Old 06-23-2010, 09:01 PM   #52
    Janaly
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    Re: Severe Insomnia, nightmares and meds

    *Hello again Biblo,

    How are things going of late for you? Was just thinking about your journey
    as well as thinking about mine. So just touching base. I am managing right
    now with my sleep and considering an herb to add to the cart. What are
    your thoughts on 5-HTP? I realize that you and I may have different meds
    we are using etc but if you have any opinions as to whether or not this
    worth safely adding or trying I will listen to what you have to share.

    Best regards,

    Janaly



    Sorry about your loss. Loosing a friend really stinks.

    I talked to my Dr's assistant about taking Ativan and then Zolpidiem (gen Ambien) a few hours later. He had no problem with it. He cautioned me about stacking and taking too much (methadone+ativan+ambien) all at once but seemed fine with me stacking them farther apart. We'll give it a shot. You know how we refer to insomnia as "the wheels spinning in my head". My Wife and I call it the "hamsters on the wheels", lol). Well I am picturing (in my minds eye) these hamsters drinking a few beers while hanging out at the "wheels". That would be the Ativan. A few hours later, after pounding down a few beers they decide to get crazy and do shots. Line up the Kamikazes!! That would be the Ambien. Should knock those little guys right out and they don't get a hangover, lol.

    Thats my analogy that the hamster wheels spun up last night when I couldn't sleep and it was 4am. Where the mind will go when you are at that state.

    I have decided to not go down the "hardcore" drug road. My insomnia is bad and certainly inconvenient but its not worth all the side effect and having someone able to 911 me. Like I mentioned in a previous post I am not working and other that taking care of the house and cooking I have no reason that calls for severely forcing sleep. So, I talked with my Wife about it today and we came to the conclusion that I sleep when I can for right now. Need to let the pressure of getting to sleep at a certain hour go and just let it happen. If I sleep from 5am to 1pm, so be it. I really want to be awake when my Wife is home from work but it may not work out all the time. Maybe this more relaxed approach will help. We'll see.

    Thanks again for the kind words my Insomniac friend. What is turning your wheels at night? lol[/QUOTE]
    __________________
    Intercystial Cystitis
    Cervical Neuralgia
    Insomnia challenges
    Allergic to Shellfish
    *all are being treated*
    but not with perfect success.

     
    Old 08-17-2010, 08:53 AM   #53
    lavenderblu
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    Re: Severe Insomnia, nightmares and meds

    Hi Bilbo,

    I SO relate to all you've suffered with the extreme hardcore insomnia. Your story could be mine including all the meds, healthy diet, sleep hygiene - on and on. Like you, it all started in early childhood and currently it is debilitating. I found this forum out of desperation as I am considering, still experimental, brain music therapy. I've researched it extensively on the web and it seems worth a shot, albiet a costly one. It would be extremely cost effective though in the long run if it actually works considering the expense of all the Dr. visits and medication, both those that work and those thrown out after 1 or 2 pills. My doctor recently recommended BMT. She is a phychopharmacologist (sp?) thus very good with meds but sees promise in this non-drug, totally safe approach. Look into it and get back with your thoughts.

    Lavenderblu

     
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