Anyone on Valcyte having trouble sleeping?

Discussion in 'Fibromyalgia Main Forum' started by frankie78, Apr 11, 2007.

  1. frankie78

    frankie78 New Member

    I've been on Valcyte for 5 weeks now. I know it makes a lot of people feel worse at first; I;m not really sure if this happened to me as I was only at about 5% energy level before I started - bedbound, etc. I'm a bit better now, maybe 15%, so that's encouraging, but my sleep has gone all to hell.

    I used to take 1 mg of klonipin at night and that worked fine, but now i'm taking 1.5mg, plus valerian root, and I still don't fall alseep until 3 or 4 am. Sometimes later. Also, now I wake up with every little noise - many times a night. So while my energy level is a bit better as far as walking around a little, I'm absolutely exhausted all day.

    Has anyone else on valcyte had this problem? And does anyone have any suggestions?

    Thanks for your help!
  2. Slayadragon

    Slayadragon New Member

    Hi Frankie,

    The sleep problems you describe are absolutely typical, based on every story I've heard as well as my own experience. (I am using Famvir and then moving to Valcyte later, but the Famvir--which my doctor thinks for me is acting pretty much just like Valcyte does for most people due to my severe viral problem--has done a real number on my sleep too.)

    The thing that has helped the most for me is human growth hormone. You can read about that on my last couple of Famvir Status Report threads. (If you want to find them, just do a title search for the word "Famvir" and they'll pop right up.) Obviously this is expensive and requires a prescription, though.

    Melatonin has been very helpful too. And I have continued to take Klonopin, at times in slightly increased doses. (I've typically taken 1-1.5 mg; now I have taken 2 or even 3 mg on occasion.)

    Another thing that I do sometimes is to take Xanax, which works more like 3 hours for sleep. I use it mostly if I wake up early or want a nap. Using multiple benzodiazpines is slightly unorthodox, but since I never use this for anxiety and have been on them for eight years without showing any signs of addition, both of my doctors related to the topic (my CFS one and my psychopharmacologist--psychiatrist who specializes just in prescribing drugs) have said it's okay.

    I asked my CFS doctor if he had any other suggestions, but he said the Klonopin/Xanax and melatonin were good and that I'd be better off increasing the Klonopin rather than adding something else. After a little more reflection, he recommended adding the HGH (which has been terrific at allowing me to tolerate the drug as well as sleep).

    The one thing I would warn you about is that valerian and benzodiazapines (like Klonopin) are a dangerous mix, with the potential of causing coma or death. Like kava kava and the amino acid GABA, valerian works on GABA transmitters in the brain. The klonopin is doing the same thing, and though probably you wouldn't have a problem, the risk of death (especially when you're on the verge of getting better!) seems like it might not be worth it.

    Alcohol (even a little alcohol) and benzodiazapines are a very bad mix too, of course.

    On the other hand, it is pretty much impossible to give yourself anything more than a very bad hangover with increased Klonopin by itself. Obviously you don't want to take so much that you throw up and pass out like you're drunk, but otherwise (if you're tolerating it well in terms of side-effects) I've never heard or read it's not safe. Obviously you don't want to take a large amount for a long time, but the Valcyte is a really unusual situation and (at least in my doctor's opinion) it's very important to get decent sleep when you're on it. Hopefully once you get rid of a bunch of the viruses, you won't need anything for sleep at all.

    I obviously am not a medical professional though, and so please do not take this as advice. Your doctor as well as pretty much all pharmacists can give you good info about the klonopin; my own comments are just things to consider.

    Who's your doctor? And also, what dose(s) are you using?

    Please keep me/us informed with regard to how you're doing. The number of people who have pursued the AV path with Valcyte is limited so far, and so sharing as much information as we can is a good thing, I think.

    Best regards,


    [This Message was Edited on 04/11/2007]
  3. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    I never tried using the undenatured whey protein before bed. I respond well to that (many people obviously don't), and so I'm going to give it a try tonight and see what happens. Thanks for the suggestion.

    My husband uses those hypnotherapy CD's a lot. When I go to bed at the same time that he does, they often put me out like a light. (Then again, I have the bad habit of procrastinating going to bed until I'm sure I'm going to sleep, so I can't give them all the credit.)

    My Chinese doctor has not been focusing enough on sleep.....probably because I have not happened to be at the peak of my sleep problems on the occasions that I've visited him. I need to make sure I stress to him that it's an issue before I switch to the Valcyte.

    It's my impression that those delta wave CD's (Teitelbaum's have just unrecognizable sounds) are kind of weird. The hypnosis ones just make me more go to sleep on their own, whereas the delta wave ones seem to be actively _pushing_ me into sleep regardless of my natural body rhythm. I guess that makes sense too, since you're not supposed to spend the whole night in deep sleep. And using them just at the beginning of the evening (rather than all night) doesn't seem right either, since people are supposed to experience several cycles (between stage 1 and stage 4 and back again) throughout the night. My husband thought they were strange too.

    Oh, I sleep better after a warm bath (especially if I add several cups of epsom salts) or a stay in our steam shower, but only if I follow it with a cool rinse. Without the rinse I feel kind of mucky.

    Best, Lisa
  4. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    That's a big trip. Good luck and take care of yourself!

    Best, Lisa
  5. frankie78

    frankie78 New Member

    thank you so much for replying!
    i did not know that about valerian root - good to know. i wish i could up my klonipin but unlike you (lucky duck) i am addicted, very much so, and if i up the dose, if even supposedly for a few months, it will be very difficlut for me to cut back. i tried recently to switch to ativan but it was a big failure.

    i take 900 mg of valcyte a day. i've read on here that you are supposed to frontload the dosage, but before i started i felt like i was dying, could hardly make the 5 steps to the bathroom, and i think my doctor might have been worried about overloading my detox abilities.

    my doctor is dr. enlander in NYC. i thought he was very good, and thorough, but i've only been to see him once since i live in boston and the trip is out of the question for now. we have been doing consults on the phone.

    melatonin doesn't realy work for me. makes my sleep very light, and my husband snores. i do have xanax. i might try that. i might try the nightly bath too. although that's a pain for my husband as i can't do that by myself. and he's already doing everything plus more. (i'm a lucky girl.)

    glad at least that this problem seems right on target and i'm not alone.

    [This Message was Edited on 04/12/2007]
  6. frankie78

    frankie78 New Member


    glad to hear you're feeling better! i'm on the same amount as you of valcyte. but i hadn't heard i would have to be on it for so long! :( anything to get better. have you found that it matters to your sleep if you take it in the am or pm?

    the cd is a good idea. i could put it on the ipod i guess. (no portable cd player) have you tried various ones? which one worked the best?

    thanks for your assurances!

  7. frankie78

    frankie78 New Member

  8. foxglove9922

    foxglove9922 New Member

    Hi Frankie,

    Sorry to hear about your sleep problems with Valcyte. I know others here have been on Valcyte and experienced the same problem. Perhaps if I bump this, someone more knowlegdeable will come along.

    Have you talked this over with your doctor? Is it possible to take something like Lunesta or Ambien with the Klonopin until you get over this hurdle? My doctor prescribes both Klonopin and Lunesta. It's rare that I have to take the Lunesta, but ocassionally I do.

    I will be starting Valcyte within the next couple of weeks.

    Please do keep us posted on your progress and my sincere best wishes,

  9. frankie78

    frankie78 New Member

    hi everyone.

    i'm doing a bit better with sleeping. i changed when i was taking the valcyte and it seemed to help - i'm taking it in the morning now. i started out taking it in the morning and it screwed up my sleep schedule so much i figured night was better. but i'm trying it the other way again. so far so good. it's easier to get to sleep anyway. i tried adding a small amount of xanax and that helped.

    i'm still about the same energy wise, maybe 20% now. the dangerous thing for me though is when i start to feel better i tend to overdo it and get cocky (think i can walk into the kitchen and get cereal AND make coffee on the same trip, for example.) i do that 2 or 3 times and i crash again. i get so excited when i have a bet more energy it's hard not to use it.

    thank you all for your help!

  10. Slayadragon

    Slayadragon New Member

    I'm very happy to hear that your sleep has improved a bit. That's a really important thing to get under control during this time period.

    Hang in there!

    Best, Lisa
  11. foxglove9922

    foxglove9922 New Member


    Good to hear that your sleep issue is resolving. How much Valcyte do you take a day? 450 mg twice a day? Are you taking the entire dose in the morning?

    Best wishes for continued recovery,

  12. foxglove9922

    foxglove9922 New Member

  13. frankie78

    frankie78 New Member

    my doctor perscribed 900mg once a day, same as dr. montoya, only he didn't specify what time of day. he also didn't do that loading dose of 1800mg at the beginning, but maybe it'd good - i'don't think i could have handled it.

    i'm trying to think positive and concentrate on getting better, but it's sure taking a long time. lately i've been getting really out of breath for no reason, and really fast heart rates too. have you had these symptoms with the valcyte?

  14. gasolo

    gasolo New Member

    Hi Frankie

    I've been on valcyte for 10 weeks. The shortness of breath symptoms were at their worse between weeks five and eight. I still have them but not as severe or as frequent. This type of symptom wasn't present before valcyte. I suspect this shortness of breath feeling is centrally mediated and not secondary to hypoxemia (low oxygen concentration).

  15. Slayadragon

    Slayadragon New Member

    I've had shortness of breath (fairly transient) on the Famvir too. I don't recall that ever happening to me before in my life (except due to exertion).
  16. jasminetee

    jasminetee Member


    I'm new here and I'm on the Valcyte Montoya protocol with my family doctor. I'm sooo glad I found this board. (Well I joined in 2000 but forgot but I found my way back now.)

    Anyway, I started having shortness of breath more so than usual this week.. i just thought it was me getting worse but I'm glad to hear others experienced it with Valcyte and that it may be a good sign.

    I'm hopeful.

  17. Slayadragon

    Slayadragon New Member

    Welcome to the board. I hope you will continue to share your experiences.

    Best, Lisa
  18. foxglove9922

    foxglove9922 New Member


    Good to see you back. Best wishes on the Valcyte and please do keep us posted on your progress.

  19. jasminetee

    jasminetee Member

    I will keep you all updated on how I do on the Valcyte. I'm learning alot from others who are on it here.
  20. ritatheresa

    ritatheresa New Member

    I'm having alot of difficulties with my sleep, I always have.

    I'm going into my 3rd week on Valcyte, almost immediately my sleep changed, I wouldn't say improved but for some reason I'm getting up early.

    I actually cried on here a few times about how I thought they were going to lock me up for always bringing my daughter late to school. So I would say this is a good thing.

    Overall, I'm feeling really horrible, I'm making it into work and trudging along, feeling pretty unwell.

    Physically I feel like my symptoms are exacerbated but what seems to be the worst for me so far has been depression and anxiety.

    I would describe it as a hopelessness type of feeling.

    Not sure what to make of it, I'm going to see my Dr this week, I need to have my labs checked.

    Thanks everyone, Rita

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