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!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Pregabalin/Lyrica for insomnia, anyone?

Discussion in 'General Treatment' started by Sasha, Feb 9, 2010.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,990
    UK
    I'm going to be starting on Pregabalin next week, having failed to do well on a trial course of Trazadone for my insomnia/unrefreshing sleep/multiple awakenings/big sleep latency/early wakening yadda yadda yadda. I've done a quick net search on it and have found that it has been trialled for fibromyalgia (which is not my diagnosis - I have ME).

    I see on Cort's excellent and information pages on sleep pharmaceuticals in CFS that Lyrica is used by Dr Bateman - but only Dr Bateman! - as a sleep prolonger.

    Does anybody have any info on its use for insomnia in CFS? Or any experience in using it for that? It's always nice to know what to expect! :Retro smile:
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    hi, the first couple of times i used it yes it put me to sleep, then after that by itself no, but used with other meds it worked great even with antihistamines that had stopped working for me now started helping me sleep when i added lyrica to it. The main reason i used lyrica was for leg pain that i got when i was asleep that would wake me up, lyrica helped with this, it worked for this for a number of years before just recently stop working for me. I now use topamax which helps with this leg pain and also helps alot for sleep like lyrica did. I would say give lyrica a try especially with some other type of traditional sleeping med, it definately helped improve the quality of my sleep.

    cheers!!
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,990
    UK
    Thanks, heapsreal - I don't have any pain that keeps me awake but it sounds as though it helped you with both pain and sleep. That's interesting what you say about needing to take something else to help get to sleep and it working well with that. Thanks for telling me about your good experience with it, I'm looking forward to trying it now!
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    hi sasha, how did the lyrica go, hope u slept well.
    cheers!!
     
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,990
    UK
    Not getting the prescription until next week, heapsreal - will let you know how it goes!
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,110
    Likes:
    951
    Concord, NH
    I never noticed any benefits from using Lyrica for sleep or pain. Pain is the reason I was taking Lyrica, did not know about sleep, which is a major issue for me also. I recently found out by doing 2 sleep studies that I have Obstructive Sleep Apnea and am now, (Since Nov. 2009) using a CPAP machine, actually more like a variable PAP machine according to my sleep Dr. I also stopped using trazadone, had increased to 100mg and then 150mg but that still only kept me down for 3 to 4 hour blocks during the work week and maybe 7 to 8 hours on weekends, but usually 5 to 6 hours.

    I told my sleep Dr that I used to sleep 7 to 8 hours before falling ill and felt well. I am now taking Mirtazapine, started at 15mg and Dr told me to increase by 7.5mg until I got 8 hours of sleep. So I am on 22.5mgs now and that keeps me down for at least 7 to 8 hours and even longer on the weekends, seems like I am sleeping at least 8 to 10 hours and am feeling better! Less pain, fewer headaches and less brain fog, although that seems worse with the headaches and has been better for about 1 year now since starting to see a new Dr.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    hi sasha, how did the lyrica go with sleep???
     
  8. Galena1

    Galena1

    Messages:
    59
    Likes:
    0
    South West UK
    Hi All - Here in the UK I'm prescribed Zopiclone/Zimovane for sleep and they are very effective. The pills are described as being taken to 'reset sleep patterns' and, for me at least, are only prescribed and issued 21 pills at a time. I guess that 21 x 1 tablet (a three week course) would be viewed medically as sufficient time for most people (non ME) to get their sleep back on track.
    I've been taking them for many months - no pill = no sleep. I've raised concerns with my GP re the lengthy period I have been popping these pills and he has assured me that this is not an issue.
    I have managed to cut my usage back to only half of the 7.5mg dose prescribed and find this suits me better (less hangover in the morning:Retro smile:) and reasonable sleep most of the time.
    Downsides -
    1. Wrap these pills (or half) in something before you put them in your mouth (I use a small bread 'pellet'). If you don't and the pill doesn't go straight down be prepared for the most awful taste that you have ever experienced:eek:
    2. Personally, I discovered that the 7.5mg sometimes made me sleep too well and pain that would normally wake me would manifest itself in some pretty terrible nightmares. Reducing the intake to half a pill seems to have resolved this but, occasionally, the pain does still wake me.
    3. I normally take this medication about an hour before bedtime but sometimes (less frequently now) they do not work at all for some reason.
     
  9. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    Lyrica made me very ill with a weird vetigo type stuff - & you must wean off of it (don't let them tell you you can stop cold, i ended up in the ER with withdrawals)
     
  10. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    We all really respond differently to meds, eh?

    Lyrica seems to have some nasty side effects for some. I've done a great deal of reseaech on sleep meds. My approach is to try to address deep sleep (slow wave sleep, stage 3, stage 4 - which is now combined into stage 3 if you've had a recent study) and sleep duration. Problems with deep sleep are well documented in fibro but as far as I'm concerned they are valid in CFS too. If you have significant sleep issues, as most if us do, then try to get a sleep study to fix things like apnea if they are present. Now for the dirty little secret. 99% of "sleep" docs are pulminoligists (sp?) who are great at dealing apnea and other 'primary sleep disorders' but not much else. I met one (I've seen over 10) over the last decade whi kbew her sleep medicine and how to tackle deep sleep. She got me on to trazodone and gabapentin 6 years ago.

    I just had a new study study. I slept for <4 hours with no deep sleep. So I tried hard to see the dept head but was got a less experienced, uninterested doc who told me that no slow wave sleep was typical for my age - IT'S NOT - and THEN told me that insomnia is not a sleep disorder (believe it or not this IS ture, and slow wave disorders are not either) and gave me a psych referral for CBT.

    So while ruling out or treating apnea and things llike restless legs don't expect a miracle from sleep docs, a GP who is willing to try things can be more helpful because it really is a trial and error thing.

    Many people have luck with non-prescription solutions like melatonin, valarian and 5-HTP. Warning******** don't mix 5-HTP with antidepresants without speaking with your Dr. and pharmasist and take the most conservative advice you get because just like mixing 2 antidepressants you can get seratonin syndrome which is VERY serious.

    Meds that have beed studied and shown to varying degrees to help deep sleep are: trazodone, gabapentin (first generation Lyrica - much cheaper), Lyrica and Xyrem. I take both trazodone AND Lyrica. I STILL get ZERO deep sleep but they knock down the pain and help me sleep 4-6 hours. When I was working and in a constant, overlapping push crash cycle I got maybe 4 hours on the same meds. I was experiencing constant PEM as a result which always hurts my sleep.

    Mirtazipine knocks me out at 7.5 mg. Now I took that on top of my other meds. My doc wants me to go to 30 and drop other stuff. He really wants to play with my neurotransmitters, but I'm very sensitive. I had to stop as it left me so hung over that I was dragging all day. I'm going to give this one more try to make my Dr. happy (a very good guy overall) while reducing the trazodone and Lyrica but I don't expect it to solve the hangover problem. I'm very sensitive to every antidepressant out there and always have to stop.

    I never meant to write this REALLY long post, but I hope there's some help to somebody here.

    Sleep well,
    Otis
     
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,990
    UK
    Very well, thanks, heapsreal! Sorry to have been so slow to answer your question - it took a while to work up to the best dose. I started at 25mg for a week (no change) then 50mg (no change) then 75mg - sudden success! I take it an hour before I go to bed and then once I'm in bed I'm normally asleep within 20 mins, and sleep soundly for about 7 to 7.5 hours. I'd like to sleep longer but am usually woken up by the need to pee (a common problem for those of us with orthostatic intolerance - the body fails to retain fluid overnight). I tried going up to 100mg but felt awful.

    I'm having a sleep study next month - I'm hoping they'll let me stay on it in the run-up to it so that I can get checked out for "leftover" symptoms like sleep apnea and restless legs.

    I'm definitely waking up feeling more rested. Not totally refreshed as in pre-illness but it's made a huge difference.

    It's a pity one drug doesn't work the same way for all of us - but I get on very well with it and the only side-effect I've noticed is occasionally a slight bitter taste in my mouth during the day like I've just had a nasty pill in my mouth or something. But that's very rare and hardly noticeable, nothing to bother about.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    glad its working for you, do you take anything else to sleep with it. One of the reasons i was taking lyrica was for leg pain/restless leg syndrome and it stopped working, now on lyrica's older brother neurontin and its working ok. As far as sleep meds go u definately need regular breaks from them to keep them working, i havent used antihistamines/restavit for a few months and the last couple of nights its knocked me out nicely and had good sleep, wake up feeling quite good.

    Good luck with your sleep study
     
  13. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    If Neurontin(gabapentin) stops working you might try Mirapex. It's an RLS drug that also had sleep and pain benfits.

    Otis
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    hi otis, did mirapex help u sleep, i was worried it might be stimulating which is why i have hesitated about using it, Thought increasing dopamine would keep me awake as i have problems with falling asleep and staying asleep as well as sometimes waking up because of my legs.
     
  15. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Sorry, I finally saw this question - a good one. I did take it at bedtime and it helped with sleep - but it wasn't like it put my lights out either. You could try it at night and if it was energizing try iit in the am. You might pop into talkaboutsleep.com and ask the RLS folks about their experiences.
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    8,720
    Likes:
    7,990
    UK
    Hi heapsreal - sorry I am so slow to see your posts! I just take Lyrica on its own.
     
  17. BEG

    BEG Senior Member

    Messages:
    942
    Likes:
    162
    Southeast US
    Sasha, I'm glad lyrica is working for your sleep. I take it for pain, but it makes me sleepy and dizzy, so I've pushed my dosages further back to later in the day. It helps with sleep for me, too.
     
  18. Cattrina

    Cattrina

    Messages:
    5
    Likes:
    0
    I think I gained about a pound a pill with Lyrica. I only used it sparingly because it knocks me on my tea cup. Just as well I guess. It did make me sleep though.
     
  19. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    12
    Hell
    Anyone have vision alterations while using pregabalin. I used like a third of a 50mg capsule and was like things were jumpy in mmy vision field. Every medication it's something.
     

See more popular forum discussions.

Share This Page