Discussion in 'Fibromyalgia Main Forum' started by stumped, Jul 15, 2008.

  1. stumped

    stumped New Member

    I am a father of a beautiful daughter who has always ate right and excersised alot. She has been diagnosed with FM and is now going thru the prescriptions which some are natural and some not. One of her prescribed meds is GHB for sleeping. It is controlled by the FDA and is only prescribed for narcoleptics. She has been priscribed by her doctor to take this in which the insurance company will not cover because she is not narcoleptic. Melatonin has not worked well. Is there any other medications or sleeping meds that anyone knows of that might help my daughter sleep soundly. I am new at this. My daughter too. We are both concerned of taking heavy narcotics or any highly addictive medications. I would greatly appreciate any input from those who have been thru this. Thank you. STUMPED
  2. stumped

    stumped New Member

    Thank you, thank you very much for your input and advice. I will continue to look at all alternative's and read your forum. It appears to me that a very good thing is happening here. The support and fellowship which you all have is a true blessing. I have forwarded this address to my daughter and niece who both are going thru the guinne pig stages of medications for FM. I will keep you all in my prayers and will share any new info with all. Thank you, from: Rick (one stumped Pop)
  3. marti_zavala

    marti_zavala Member

    Expect more responses. This is a great group.

    Here is what I use:

    300 micrograms of melatonin (sometimes less is more).
    50 mg 5HTP
    100 mg Valerian root

    Also helpful, rhodiola, holy basil, GABA, and l-theanine.

    Here is what I use for my Fibro:
    400mg Magnesium
    1200mg Malic Acid
    800mg Calcium
    Tramadol (prescription for pain)
    Robaxin (prescription muscle relaxer)
    Epsom salt baths/lotion

  4. cookie1960

    cookie1960 New Member

    Hi stumped dad,

    Part of FM is getting to that deep sleep cycle (REM). I'm probably more your age then your daughters and I agree with you - I don't like narcotics - especially for young people.

    I have been prescribed an anti-anxiety medication which helps me to fall asleep and stay asleep. It's a very low dose, and my dr. assures me it is safe to take and safe to take for an extended period of time. Natural remedies and supplements never work for me.

    I take Klonopin, but there are others such as Xanax. Maybe ask her dr. about this route and these medications are generic and very inexpensive.

    Also...establishing a routine of a regular bed time and waking time seems to help with the sleep cycle.

    good luck,
  5. jbc66

    jbc66 New Member

    I have taken a low dose of Doxepin for the past nine years and it has helped. It is one of the old tricyclic antidepressants that is no longer used for depression, but instead used for nerve pain and to promote deep sleep.
  6. Debra49659

    Debra49659 New Member

    Tylenol PM is fine to take...and it works like charm. My doctor suggested it because I simply couldn't sfford another prescription co-pay.

  7. stumped

    stumped New Member "all" are so wonderful. I cannot thank you all enough for all the time, advice and suggestions.
    I am curious....I work in the substance abuse field and have worked in detox's and recovery programs for years. It is amazes me to how simular FM is to a heroin addict kicking or detoxing from heroin. I say this with no pun or insults intended. The aches in the bones, muscle pains and sleeplessness. Again....I am just finding out what FM is,its symptoms and the seriousness of this illness. Of course, in no way do the two compair. One thing I do know is this..because I worked at a social model detox and not a medical detox. No medications are allowed hence... Your gonna kick hard and its no fun. I found out that "honey" Yup...good ol clover honey made by natures busy bee's have reduced the time span of muscle and joint pain by half. Epson salt baths like Marti has suggested and the sleeplessness was also reduced. I had all kinds of the little honey bear squirt bottle's in stock. I would hand one to each client and encourage them to drink one in a two day span. Also nausea was reduced. I'm making a suggestion in which honey can be a supplement in your diet on toast and in tea etc. I would be curious to see if this would put a little dent in muscle and joint relief for those suffering from FM. I'm just a Pop digging for some solution. Love too all, Rick
    <br>[<i>This Message was Edited on 07/15/2008</i>]
  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Recent research has shown that GHB helps with stage 3 and stage 4 sleep. FM is commonly considered and classified as a neurological dysfunction (which may explain the similar symptoms to heroine withdrawal).

    One of the parts of this illness is wake waves (alpha) interfere or intervene with the deep sleep waves (delta) in FM and CFS. So, the stage 3 and 4 are fragmented, interrupted. This reduces the time we have in these stages of sleep. And, stage 3 and 4 is when many parts of body heal: immune system, adrenal glands, muscles, etc.

    Since GHB is shown to not only solve insomnia but put a person in stage 3 and 4,it is recommended for FM and CFS.

    I have had two doctors recommend it to me. But I started on sleep supplements, melatonin and Ambien CR. I seem to be doing well on that now, which allowed me to avoid the hassle you described. But, if the Ambien stops working, I am going to GHB.

    I go to bed about midnight, and sleep to 9:30 or 10. My symptoms mostly fall under CFS, but I also had FM symptoms.

    Also, the addictiveness of Ambien, I now find out is overblown. I have been on it two years and all doctors I ask about it say it is no problem.

    One thing I will say, sleep, effective sleep, is step one to getting better. If she can't sleep, that does more harm than chances of addiction. Sleep is that important.

  9. poets

    poets Member

    If you're still reading this, what I use to sleep is something that I get at the drug store called "Sleep MD." It's an all natural formula and doesn't interfere with my other medications. I have to take it on an empty stomach in order for it to work. You should check with the doctor first to make sure it won't react with any medications that she may be on.

    Sleep MD is about the only thing that works for me that's natural.

    Hope you find some answers soon. Going without sleep is miserable!


  10. tamsyn

    tamsyn Member

    I take 300 mg Gabapentin and it helps calm me and lets me sleep. It's a drug that completely mimics a natural substance the body makes; it is not addictive, and I have had no SE's whatsoever. I wake up bright and clear in the morning. You can resrach this on the web. My doc feels it's a very 'safe' drug. Good luck!
  11. Juloo

    Juloo Member

    Actually, I thought GHB *was* natural. Can someone address this?

    In any case, one of its effects is to stimulate the release of growth hormone. Because (as was written above) a lot of us with these dds don'e have stage 3/4 deep sleep, our bodies do not have the ability to repair themselves the way healthy bodies do.

    I have tried all sorts of sleep medications (both supplements, OTC and prescription). I still use low-dose melatonin and Ambien (2.5 mg/night), but I also have a prescription for Xyrem (GHB). Because I have to pay out of pocket, I can't afford to take it all the time, but IT WORKS.

    It is very important to take the time to find the right dose, so a few false starts may be expected. But it is the only med I've found in a decade of looking that gets me all the way through the next day without me even THINKING of being fatigued.
  12. stumped

    stumped New Member

    Hello you fine folk. 7/16. Off work and rushed to this site. Great news! My daughter is going to register and join in. She is a jewel and has info to share as well. I will continue to look as she will have her funky days and I wouldnt want her to miss a thing. I really appreciate all the response and selfless giving of advice and suggestion's. I cant express my gratitude enough. Hope all are having a good day. Thanks again to Jam,Rocky76,Marti,Cookie,Deb,Feelgood4life,Tina,A big hug for you too Meg,Tamsyn and Juloo. Sincerely Stumped Pop Rick
    <br>[<i>This Message was Edited on 07/16/2008</i>]
  13. SweetHart

    SweetHart Member

    Bearing in mind that these incidious diseases (ME/CFS & FM) react differently to supplements and meds from person to person, I'll throw in what works for me in hopes that it may help someone else.

    At the bare minimum, I always have to take ProHealth's ULTRA ATP+ and usually at night (although I'll sometimes take some in the morning as well when things are worse). It has magnesium and malic acid which does a lot toward relaxing me and reducing the symptoms. It doesn't get rid of all of the pain, exhaustion, energy depletion, etc, altogether, but if I go off of it, I'm unable to get out of bed and the pain and tightening muscles are unbearable. It makes a big difference in my life.

    When I'm taking it I drop off to sleep as soon as my head hits the pillow and I sleep relatively well most of the night. If I stop taking it, I hardly sleep at all.

    Of course when I have relapses/flares, things feel worse but I can only imagine how much worse they would feel without it. Also, remember it takes time when starting on it to feel it start working, but it's worth it to me.

    I also take a good multivitamin in the morning, a Stress B-Complex and Ester C in the afternoon, and Citracal Calcium at night with the Ultra ATP+.

    I've taken many different prescriptions over the years and haven't been able to tolerate the many side effects.

    I hope this helps.

    Blessings to your daughter and to you for being such a supportive and loving father.

  14. stumped

    stumped New Member

    I am hurdeling over many walls and grasping for solution. Again... you all have been great. It was suggested through a freind whos brother took GHB for his sleep after lifting weights. ghb has been taken off the shelves and he is now taking "somotomax" which he stated "is very simular" to GHB. Has anyone tried this? He sleeps well and has no adverse reactions. They use it to open the veins for more bood flow at night. Might be worth a mention to your doc. It is available at GNC& Supplement. Still investigating...One stumped Pop, Rick
  15. hollie9

    hollie9 New Member

    Interesting you brought up the effects of honey. My family has a genetic disease of porphyria, which has from time to time been linked to CFS. Honey was the one thing my cousin was to take often and always as a way of combatting worked.&lt;BR&gt;
    My story regarding sleep meds is not so delightful as those posted. The CFS oriented docs I had treated for sleep and damn the consequences. And I don't blame them, without good sleep you don't stand a chance with this disease.&lt;BR&gt;
    I am now on 4 mg klonopin, 20 mg ambien, and about 50 mg doxepin, all for good sleep. Although many docs object to so many benzos I am a high functioning CFS person with pacing my activities. I have had this disease since 1992 so of course my drug intake is higher, as tolerance builds. But I am able to exercise to a greater degree than most and do more social activities than most...perhaps this is related to the deep sleep I get?&lt;BR&gt;
    I've tried all over the counter meds and they did no good whatsoever. I do have to say that before catching CFS I already had a sleeping problem, I remember as a child not being able to nap. &lt;BR&gt;
    Anyway, that's my addition to your thread.&lt;BR&gt;
  16. rockgor

    rockgor Well-Known Member

    another old thread that was bumped.&lt;BR&gt;
    Poster &quot;Stumped&quot; hasn't been hear for years.&lt;BR&gt;
  17. Mikie

    Mikie Moderator

    Can help a lot to define just what is happening in the sleep cycle. Many, many of us do not go through the normal sleep cycles nor obtain the correct brain waves to produce quality sleep. I also take Klonopin to settle the slight seizure activity which keeps me from having a calm brain, able to cycle through the various wave lengths needed for sleep. It has worked wonderfully for me; however, I now take a blood pressure med which depleats norepinephrine in the brain and I am no longer getting good sleep. I've had to choose between good sleep and lowering my BP to acceptable levels. I can tolerate almost none of the BP meds out there so I'm kinda stuck with this one. Everyone in my family dies of massive heart attacks, so it is critical to control my BP. I have the genetic earlobe creases indicitive of inherited vulnerability to heart disease.&lt;BR&gt;
    I am back on the Methylation Protocol and it helps with sleep. Whatever Herpes-Family virus I have had reactivated and I thing the MP is helping the Acyclovir to get it back into latency. It's a slow process with a lot of Herx-like reactions. Ugh!&lt;BR&gt;
    Love, Mikie

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