1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Sleep meds: how often do you have to change them?

Discussion in 'General Treatment' started by Sasha, Nov 5, 2010.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    I've been taking Lyrica for about 8 months and at first it worked well for me. I've just had a bad acute virus and have had to sleep longer hours; as usual, now I'm getting over it, I can't get to sleep at night and am waking late because my sleep pattern has shifted forwards. Maybe once I've gradually moved back to my normal pattern I'll find the Lyrica is effective again.

    Or not! People say that you have to change your sleep meds periodically because your body adapts to them. I've already had to quit Amitryptyline for this reason.

    How long does each sleep med usually work before you can expect to have to move on to another?

    Can you ever return to one that used to work?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,320
    Likes:
    4,677
    australia (brisbane)
    some are sleep initiators and some are sleep prolongers. Genrally the inducers are benzos and tricyclics and antihistamines prolong sleep, so i rotate beweent my sleep inducers and prolongers. I have 3 benzos i use and a fist full of prolongers and they seem to be working well of late. I fing lyrica a prolonger, but sounds like u need to take a break from it and then use it every so often, cheers!!!
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Hi heapsreal - I asked to be put on one that helped with Stage 3/4 sleep because Nancy Klimas's studies show that we're deficient in it. Do you know how that fits in with being an initiator or prolonger? I don't know if my GP will know this stuff (it was a neuropsychiatrist who prescribed the Lyrica when I was being investigated for sleep problems and since I was "fixed" I'm no longer under his care).
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Oh! Meant to ask you as well, how often do you rotate your drugs? Do you find that when you go back onto one that you discontinued, it is as effective as before and that you can use it for the same number of months before it stops working, or do you end up with shorter and shorter cycles?
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,320
    Likes:
    4,677
    australia (brisbane)
    i sasha, i rotate them almost every night, alot of the drugs that sustain sleep i believe help with deep stage sleep. I dont think its correct when read that only one drug is suppose to help with deep sleep and thats xyrem, i wonder if its a sales tactic. of late i have been waking up feeling quite well. I tend to use zopiclone as my sleep iniator alot but also use valium and hynodorm/flunitrazepam and in the past used mogadon. My sustainers are avanza, doxepin, phenergan, baclofen and use lyrica everynight for leg pain but if it stops working which seems about every 4 months i then will use neurontin. Once a week i use seroquel on its own, its like an initiator and sustainer in one, the 'bomb' which is good if im going through a tough period of insomnia and seems to reset my brain and then i sleep better again on the other drugs. i think that because i use this system i have been able to avoid alot of tolerence issues and stay at the same dosages for quite along time, occassionally something just stops working so i stop using it for a week or 2 and with a few options its not a problem for me doing this as there are alot of other different combos i can use.

    I what i have found with just using sleep initiators alone is that i only get 3-4 hours sleep, the sustainers keep me asleep for 6-8 hours sleep, sometimes longer. A sustainer alone just doesnt seem to have the kick by its self to get me to sleep , occassionally they work on their own, but they definately increase the quality and quantity on my sleep when used in a combo. I wouldnt be to concerned about the different stages of sleep as u will know when u have had a good nights sleep. Someone wrote on here that their neurologist or read somewhere that people who use benzo's chronically for sleep do end up getting stage 4 sleep, its just those first few weeks on them that they get stage 2 only sleep and i think this is probably the case with all the meds used for sleep. i hope this helps.

    cheers!!!
     
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Hi heapsreal - wow, I'm surprised that you're rotating drugs every night - I thought you'd say that you used one for say four months or something, then another, then another...

    When I first went to see the neuropsych, I had to try out a series of sleep meds before I hit on one that would work and each time I had to give each drug a couple of weeks' trial because the doc said that they take a while to build up in your system. I would have thought that if you were rotating different types so quickly you wouldn't be maintaining them in your system and that they would work less well; but that doesn't seem to be your experience.

    Interesting!
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,320
    Likes:
    4,677
    australia (brisbane)
    hi sasha. sleeping tablets shouldnt have to build up in your system, i think doc is getting mixed up with antidepressants, sedating antidepressants used for sleep should work straight away for sleep and dosages needed for sleep are alot lower then for depression. i rotate frequently as i have found in the past that if i use something more then 2 nights in a row it stops working, im probably the exeption then the rule. u could try a combo and just rotate it when it stops working, if its 2 weeks or 2 months, use whatever method gets u good regular sleep. Also on the subject of building up, traditional sleep meds have a short half live eg zopiclone has a half lfe of 6 hours, so if i took it every night it wont build up in my system anyway. I hope u find something that works. one of my favourite combos is zopiclone with 15mg of mirtazapine/avanza.

    cheers!!!!
     
  8. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    So I know a bit about meds for deep sleep. I get ZERO slow wave (stages 3/4) sleep.

    Xyrem has been shown to be very good for deep sleep. It didn't get approved by the FDA for fibro due to the concern of giving thousands of people access to a version of the date rape drug GHB. It wasn't because of lack of efficacy or safety concerns. Just had a conversation with my rheumatologist about that.

    In terms of studies I've found trazodone is another good choice for deep sleep. It doesn't give me SWS but it helps keep me in dream-land long enough to get through a day. Often I have to use quantity to make up for quality.

    For me Lyrica is a sleep initiator. It and gabapentin have been shown to help with SWS.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,320
    Likes:
    4,677
    australia (brisbane)
    hi otis,
    I have heard that doxepin, mirtazapine and baclofen(suppose to be the poor mans xyrem) increase deep stage 3/4 sleep as well. Have u heard of any others as well as trazadone? I have used it but didnt seem to help and was awhile ago before i started using combo's, maybe i might try it with zopiclone. oh yes, lyrica i have also read increases stage 4 sleep. I find it good with a combo
     
  10. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Caveat - the deep stage sleep studies are all very short-term so there's no way around subjectivity and trial and error.

    The rotation concept is a very good one. I would love to replace trazodone (GI side-effects) but I haven't found another sustainer despite continued efforts.

    The other comment is that it really is a good idea to get a sleep study if possible. Since most of these meds are CNS depressants, if there is underlying sleep apnea, the apnea can be made worse and actually worsen the quality of your sleep and is possibly dangerous.

    Doxepin is one of the tricyclics (amitriptyline being the most commonly prescribed) which in general are used for sleep but I don't recall significant benefits to deep sleep. I understand Dr. Klimas is fond of doxepin - it has some anti-allergenic effects. I used it years ago but was getting hang-overs from low loses.

    Baclofen helps with deep sleep and I just read an abstract about increased HGH with it, something else it has in common with Xyrem. I think SWS and HGH pretty much go hand in hand. I don't really find it sedating.

    Mirtazapine. Bzzt - I took it for a while and I can't recall why I stopped it (side effect vs. benefit I'm sure), I'll have to look for some notes. It does benefit SWS too.

    So just like everything else else with this DD it's trial and error. No magic bullet for me but I'd like a shot at Xyrem. Some fibro patients have done very well with it. Since I have a CFS/Fibro combo I'm probably harder to treat than most. My rheumatologist (after suggesting Xyrem) told me how amazing it was that many of us could swallow enough sleep meds to put down an elephant and STILL stare at the ceiling. Can that be a biomarker.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,320
    Likes:
    4,677
    australia (brisbane)
    i have used both doxepin and amitriptyline and for me i found them very different, doxepin was very sedating, if using it all the time it increased my appetite, but when i first had cfs it was a great drug for sleep but i eventually built up a tolerence to it. Amitriptyline had no sedating effects at all or increase in appetite but it did help with that overall body pain and i thought was good for mood. I also read a study where mogadon(nitrazapam) increases growth hormone although the study said that participants stayed in stage 2 sleep and didnt reach stage 4 sleep. This seems to go against growth hormone only being secreted during stage 4 sleep. I agree with ya, everyone is different and u just have to keep trying things until u find something that works, also sometimes go back and revisit past treatments as i have found some things that havent worked in the past later on work, maybe our metabolism changes as we go along with this disease.

    cheers!!!
     
  12. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    That's interesting - the drugs did seem to take a while to kick in but I was taking them at v. low doses as you say, for sleep not depression. The doc was a consultant neuropsychiatrist at a sleep unit in a major hospital so I'd have thought he would know! It's clearly a complex area. I'm worried my GP is going to screw things up now I've been discharged from specialist sleep care.

    Xyrem is interesting though not available in the UK, at least on the NHS - v. expensive and concerns about it basically being the date rape drug GHB as Otis says.
     
  13. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Xyrem is not really an option in the UK I guess.

    I had a short trial of Xyrem and the titration schedule is very conservative - I'm very comfortable with that. If I can get a script and insurance coverage I want to try again.
     
  14. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    I have resteril and lunesta. I take one for two nights, then switch for two night. I also take melatonin along with it.
     
  15. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Interesting - I've just been prescribed a 21-day course of melatonin on top of my Pregabalin to see if it helps kick my sleeping pattern back to normal. My GP said it's not unusual for it to go out of whack after an acute viral illness (which is what I've just had).
     
  16. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    FWIW, I'm taking 12mg time release melatonin every might. In the US we can get it over the counter. The sleeping pills don't do enough for me. Nor does the melatonin. I have to use both.
     

See more popular forum discussions.

Share This Page