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How do we treat severe insomnia for cfs/me

Discussion in 'General Treatment' started by heapsreal, Feb 8, 2012.

  1. Calathea

    Calathea Darkness therapy

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    That's still a lot more than most of us know! I'd certainly be very appreciative if you could start a post, even if you were just repeating what you've put in this thread.
  2. Sing

    Sing Senior Member

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    runner, sometimes people start a new thread to highlight or focus on material in another thread, and it is okay to re-post exactly the same message or messages to get this started. I'm not saying you should, but you could, if you wanted, do it this way, and not have to expend more brainpower and time re-writing. Maybe this forum could use an ongoing topic heading, like "Side-effects, dependency and withdrawal problems from medications"

    Sing
  3. Sing

    Sing Senior Member

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    runner, or anyone else, is there a reason why the antihistamines Atarax or Vistaril might work better for insomnia than Benadryl (Diphenhydramine HCL)? Are any of these better in terms of the side effect of more brain fog the next day?
  4. Sammy

    Sammy

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    Hi Runner64,

    I do see my side effects on that list - insomnia/anxiety

    The question I now ask is - What do I now do about these long term side effects???


    As you know, being Benzo dependant isn't an option. Have tried many other pills. TCA's, Old School Anti-Histamines etc
  5. runner64

    runner64

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    I'm sure someone else will chime in with more here. I'll tell you what I do know.

    I took Atarax once. It helped for sleep. It was different, stronger then benadryl or gravol as it is prescription but I can't say from personal experience if it would continue helping longterm although people I worked with tapering benzos took it and some swore by it. I really don't know about the less brain fog the next day if that's what you're asking in regards to CFS people. I didn't have this quite yet at the time I tried it.
  6. runner64

    runner64

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    Hi Sammy, yes, it seems you do have the effects from the cipro.

    As far as what to do with the long term effects? Are you still on cipro and have the effects or you're off cipro and have the effects? I met 3 people with fluoro side effects. Two had tendon rupture and one more central nervous system. I am pming you the name of one of the woman you can contact who HAD, (not anymore), the cns problems from it, and ask her a question if you are off of it and concerned about long term side effects from this. From my knowledge if you get the insomnia or panic from it discontinue and do NOT take a fluoroquinolone again as your cns will be more susceptible. It says that on the link I gave you too. But from what I know the sooner you catch it, your system will then calm and they will then leave.

    I know, same benzos are no option for me either. I am questioning like yourself how to more forward with sleep. I may try Atarax again to see if it will help sometimes. But, it sounds like you tried that if you say "old school antihistamines". What are TCA's?
  7. Sing

    Sing Senior Member

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    Googling the side effects of Atarax/Vistaril, those become very serious too after awhile. They include Tardive Dyskinesia! My understanding is that amounts to permanent brain damage beneath an outer manifestation of uncontrollable tics and facial movements, etc. I wouldn't want to touch this possibility with a ten foot pole!

    Lately I've been relying more on deep breathing, letting go of thought involvements, stretching before bed, limiting carbs in the evening--and if I have a long stretch of sleeplessness or interrupted sleep, to make up for it with a nap the next day. I have wished like h **** that a medication could fix this problem, but, no such luck.
  8. Sammy

    Sammy

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    Hi Runner64,

    Sorry I don't get or stay online long. Its Exhausting.

    Have been off cipro for years, symptoms slightly improved after stopping the drug(12weeks) but symptoms started 6weeks in was on 1500mg a day from what I remember. The doctor who I told 6weeks in had no idea what to do as he looked in the extended MIMS and there was no report od CNS disturbance, however I do remember something about Tendon rupture.

    TCA's are another group of antidepressants, like SSRI's etc And thats all he could do was prescribe Endep - Amitriptyline(sp?) which gave me nasty side effects for years.

    Thanks replied to your msg yesterday :)

    Cheers!!
  9. Ivana

    Ivana Senior Member

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    Hi Sammy

    Im sorry to hear your sleep isnt so good. I havent read all the other posts (cognitive issues and all) so maybe someone has answered the same thing as me.. but i have found that taking melatonin a few hours before bedtime is good, and half an hour before sleep i take Rivotril 5mcg, Lamictal 5ml x 3, and prosomnia (a natural sleeping pill).. it can usually put me our for hours. Prior to that, i only used to sleep a few hrs a night.

    Best wishes,

    Ivana
  10. donnie1234

    donnie1234

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    I try to exercise everyday. Not cardio, just weights. I make sure to use every muscle. I also go for a walk every day. Obviously there are days i cant do this, but thats the best method i know and drug free. Also, i have to be sleeping in a cool, quiet room. Good luck
  11. Sammy

    Sammy

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    Ivana, donnie thanks guys appreciate your help. And yeh donnie I do weights/gym twice a week, Branched chained amino acids help more(in regards to adding muscle mass)then protein powders or foods. I think like a couple of O/S's doctors beleive(names fail me right now)most of us are in a catabolic state and would benefit from this form of supplementation.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sammy, have you looked into testosterone replacement therapy. I think a possible cause of us men being in a catabolic state from cfs/me could be low testosterone and TRT could help. The longer i have had cfs i see a pattern in my hormone tests of my dhea and free testosterone levels dropping, so i have been working on my dhea levels slowly, get test results back soon for all my hormones and if free testosterone is still low im going to look into TRT.

    cheers!!
  13. Sammy

    Sammy

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    Heaps thanks buddy...

    I have looked into HRT/TRT because i was low, in both bound Testo and Free Test. Dispite its use i have found i still need BCAA's over protein powders, foods etc like the O/S's doctors recomend, something about the conversion to aminos. One of the Doctors acterly sells his own amino mix. But same with my tests my DHEA has dropped a lot over the years to! I beleive a LOT has to do with our illness but also testo/hormone levels drop in men with age as well. And yes i totally understand a catabolic response due to low testo levels. Heaps maybe try a 'ZMA' supp?
  14. cph13

    cph13 Senior Member

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    TO ALL OF YOU WHO SUFFER WITH LACK OF RESTORATIVE SLEEP that have posted her (and others who just lurk, like me) THANK YOU ALL!
    WHAT A TIMELY POST! THANK YOU again, one and all, for all your wisdom, experience, trials, recommendations etc. from the bottom of my heart.
    I have been ill in varying degrees since 1992 with CFS/Fibro/IBS/OA/IBS etc, probably ME; positive EBV and mono. I began u in 2000, very regrettably. My brain is mush, my functioning is NIL. My pharma replaced my generic of a benzo TEVA with a no name generic unbeknownst to me, until it was too late. I had gone through weeks of poor sleep so I increased my Klonepin to double of what I had been taking before I realized it was a substitution generic. NOW I WANT OFF because of the long term effects. RUNNER64(I wanted to PM u but I see now, I cant) I hope U C this.
    Your knowledge on this subject is..OVERWHELMING and awe-inspiring. I am indebted 2 U for confirming what I thought. You provided all the backup one can ask for. I will be your U.S. ADVOCATE and pay it forward, I promise. U have no idea how angry I am. I was so protective of my neurotransmitters refusing all these anti-depressants when Whamo w/o a sign the BUMS got me.
    And Runner, YES, I get it!!!!!! I TRULY FEAR FOR MY GABA RECEPTORS, :-{
    I am frightened to death and have begun a redux. Just this week. I have no idea how I will sleep but step one is to slowly come off, clear the webs, and get ME back.
    I look forward 2 all of your updates and I will do the same. DAMN THE TORPEDOES; FULL SPEED AHEAD. As I limp off to get some sun and exercise. Have a great w/e all! Cph
    PS- FYI, another dr. my DO has been touting xyrem for years. Telling me how addictive benzo's R. I won't do xyrem but I NEVER paid him any mind on the benzo. AFTER ALL. I was sleeping HA!
  15. taniaaust1

    taniaaust1 Senior Member

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    Thanks for the ideas. Im leaving it currently in the hands of my doctor but if he runs out of ideas, Im glad to have these others.
  16. Lotus97

    Lotus97 Senior Member

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    I've had a lot of success with prescription drugs for sleep and other health issues, but also many problems. For anyone who is taking a prescription sleep medication or any prescription drug for that matter beware that generic manufacturers are not always as effective as the brand names and sometimes they don't work at all although they might still give you side effects regardless of how effective they are. I know the FDA says that generic drugs are tested to meet certain quality standards...blah blah blah. Don't get me wrong, I've taken generic drugs that have worked fine, after some personal bad experiences and a lot of Googling I'm realizing that this problem is much worse than I would have imagined and I suspect from what I've read online that most doctors are unaware of this.
  17. Sing

    Sing Senior Member

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    I don't believe that generic drugs are tested, or tested as rigorously as the brand names. One doctor told me they are held to a lower standard of 70% efficacy compared to 100% of whatever the standard brands can do. But this may not be the most up to date information. Some of the components of pharmaceuticals as well as supplements are made in countries which sell tainted, inferior or ineffective products--not all, but this business is not carefully monitored. There is also a significant amount of fraud and theft among the middle men in the pharmaceutical business here in the USA. Wholesalers buy huge lots of stuff which sit in warehouses in states such as Florida, where regulations are very lax. Thefts and drug substitutions do occur, products are "watered down". Then pharmacists and the big chain stores buy whatever is offered at the cheapest price. So I agree. Caveat Emptor! The generic or apparent brand name drug you may get sometime may not work.

    Here would be my best advice: If you get a drug which you feel is of inferior quality, take it back to the pharmacy and get the lot number it came from--identify it as carefully as possible--and make a complaint to whomever you can. Also insist that your doctor prescribe the brand name only, and see if you can get insurance coverage for it, with his written insistence. if you can't, it may still be worth it to buy the full price drug--for your health. Then too, maybe there is another drug discount service which can help you pay for it.

    One drug I most depend on, whose quality and effects I am very familiar with, I have learned to get only in its brand form and only from an independent pharmacy which I have learned I can trust, rather than a big, chain store which sometimes takes short cuts. I have found that we do need to try to protect ourselves in terms of the quality of medications. Not all products or pharmacies are equal, unfortunately.
    Lotus97 likes this.
  18. AFCFS

    AFCFS Senior Member

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    Verrillo, Erica (2012-09-14). Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Kindle Locations 14888-14889). Erica Verrillo. Kindle Edition.

    I have enjoyed the lassitude (as in: a condition of listlessness) from B12 sub-lingual, but do not seem to get quite the same effect from B12 injection (maybe because it is in the fat and takes longer to get to the blood?). For me, it seems to promote relaxation and ease of sleep, drifting off. I understand it makes some people wired or may lend to insomnia.
  19. GracieJ

    GracieJ Senior Member

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    Sleep deprivation has to be the most serious complicating factor for many illnesses. I'd like to preface what I contribute here by saying I had insomnia for 30 years, sometimes 2-3 hours of sleep a night, sometimes 5-6 chopped up. (High school... with all its activities. o_O I think I was set up for later illness.)

    Fibromyalgia brought the additional diagnosis of no Stage 3 or Stage 4 sleep, something we are all too familiar with. Over a period of about ten years, I tried several prescription medications which worked briefly then would stop working. I "spiked" straight through Klonopin after about four hours in. Anything I used would start to do the opposite.

    2005, things came together for me with natural remedies. (I was 43.) Here is the rough addition and usage:

    Homeopathic tablets formulated for sleep, made up by my ND for me specifically
    Colloidal gold (you dream in color!)
    Standard Process Min-Chex and Cataplex G, plus calcium lactate (used against viruses)
    Calms Forte
    Melatonin
    Tryptophan
    Natural Calm magnesium
    Kava kava -- as needed to relax (short-term use, as it is hard on the liver)
    Vitamin D (5,000 IU at a time when 1,000 IU was still unheard of)

    The knockout punch was reading up on neurotransmitters, and I chose GABA to try first... and for the first time in my adult life, began to sleep 7-8 hours a night, awakening naturally and feeling refreshed in a way I remembered from childhood. My understanding of the neurotransmitters is that some people will need one, some another, to help sleep. What is completely bad for one may completely solve another's issues. Very individual.

    Later (2006), I bought a GoLite, and discovered that using it daily could replace all of the above items except maybe the melatonin. If I used my GoLite, I had to use it at night, as my circadian rhythms are truncated. There are some indicators that blue light is the problem with macular degeneration later in life, and as that runs in my family, I have slowed down on the use of the GoLite.

    I believe these things worked as well as they did because they were added after many months of good nutrition and self-care, including a lot of rest. That foundation really seems to make a difference when a remedy is added as to how well it will work or not.

    Right now, I use melatonin, sometimes tryptophan, and finally broke out the valerian and hops to try... those leave me with a hangover, so I only use them for maybe 3-4 nights in a row, usually during a stormy period with little sunlight.

    I can sometimes go for days or weeks without using anything at all and sleep great! Then I have to go back to a regimen, but nothing like before, and 15 minutes of natural sunlight during the day is now enough to insure good sleep.

    I very strongly believe that like many other things, good sleep is based on adequate nutrients, right types, right doses.
    cph13 and merylg like this.
  20. Lotus97

    Lotus97 Senior Member

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    Before a setback starting in the summer, I had made a partial recovery over the course of about 2 years. I attribute a huge part of my recovery to getting a lot of sleep (10+ hours a night). There are 4 things that helped my recovery:
    • Sleep
    • Limiting activity (Depends on the individual, but I spent most of the day in bed)
    • Eating healthy
    • Supplements/prescription drugs

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