Sleep! Any tips on how to get it

    • Anonymous
      February 12, 2010 at 8:51 am

      I am 3.5 weeks post hospital and IVIG. On that daily roller coaster of good days and bad days (still learning my limitations). Anyway, I am having problems sleeping. Taking 2 Ambian and still getting only 4 hours sleep. Spend hours during the day trying to sleep but only resting (rest is good). Does anyone have a trick or two.
      Added at 11:30
      Thank you for your concern, your comment, your suggestion, and the sense of a commom community. I am learning that this isn’t easy but improvement comes in baby steps. I will listen to your advice and try some of your techniques. I will keep posting questions as they occur. Three weeks in. A lifetime to go!

    • February 12, 2010 at 9:49 am

      Hi Harry,
      Lots of people have trouble sleeping after gbs/cidp, us includued. Being that you are on ambien and the fact that you may have other medical factors, I would probably check with your doc before you do anything. There are a couple of over the counter things that work, we tried one of them, it did work but because of our age I discovered it was not good. The supplement is melatonin, as well there is something called alteril. I have no idea how they react wioth your other medications or your helath in general, so ask your doc. Besides those two things, there are other obvious things like no visual stimulation (tv, computer etc.) a couple of hours before bed, no caffiene or food a couple of hours before bed. We try to do the same thing every night so that things run smoothly. Just some mom ideas, take them with a grain of salt.

    • Anonymous
      February 12, 2010 at 10:28 am


      I am 3 months out from “mild” GBS, my diagnosis at this point, and I have not had one good night of sleep since this started. I used to sleep like a baby. I wake up every 2 hours. I think it has to do with the fact that the neurotransmitters are all out of whack, a medical reason. For me, anxiety was a big factor in the beginning too. I have been going to bed earlier every night, and try to nap as much as you can during the day. I have not used any sleep aids yet. Good luck!

    • Anonymous
      February 12, 2010 at 11:47 am

      Hi Harry: I too had a lot of trouble sleeping during and after GBS. I am now 5 years out and no longer have any trouble; in fact, due to the fatigue factor, I sleep better than I have since I was a kid. I think in time sleep should become less difficult to come by. If I do have trouble, and earlier when I did have trouble, I found ambien didn’t work for me. One valium, though, and I slept well, at least for 4-6 hours, and felt rested. So my sleep aid is valium which now, fortunately, I need much less. Some general tips-if you are tryig to sleep for more than 20 minutes with no luck, get up and do something like read or watch tv. The worst thing is to lie there for hours not sleeping. If you know how to meditate, that is a good time to do it. When you trying to sleep one trick is to count your breaths and try to breath slowly and regularly. Try to count one hundred breaths in and out and then start over. I think the first year after GBs is a very rough year in so many ways-you need patience, a willingness to go slow and rest often, and you will get through it and the years after. Jeff

    • Anonymous
      February 13, 2010 at 10:05 am

      Hi Harry………how is your day going? In late August when I came home from the rehab facility I decided not to be on any meds……..especially sleep meds….I figured that I would welcome my own bed so well, coupled with being tired, that I would sleep like a baby…..wrong!! I had very poor sleep…..and eventually found an over-the-counter medicine (Advil PM or its generic equivalent), that gave me some relief. I just quit taking it last week, and am doing well. I hope that one of the suggestions you’ve been given helps. Being on a regular schedule is important. I don’t have caffeine after 1 p.m. Continue with a therapy or exercise program, as much as you are able. Reading or being read to can be very relaxing…maybe you enjoy listening to music…..I did crossword puzzles for both physical/mental therapy. It takes time to adjust. Try different things. Don’t be too hard on yourself, when you’re having an “off” day. Find a plus to each day and build on it. Good luck….tom

    • Anonymous
      February 13, 2010 at 10:29 am

      Last night i did not take the ambian but did take a generic valium, still took two hours to fall aspleep but I did sleep all night. The two hours prior to sleep, instead of fighting it, I listened to a book on tape while laying bed. I woke refreshed. Yesterday and Wednesday were relapse days. I upped the repetitions of ALL my PT exercises and paid dearly. Must learn baby steps toward recovery. Must learn lots of things. Again, thanks to all of you for your kownledge and advice. Still waiting to see what today may bring.

    • Anonymous
      February 13, 2010 at 11:39 am

      I was wondering what the reason for not being able to sleep.. Are you in pain? Having strange sensations? Or just can’t relax? Or none of the above.
      Are you old, young, inbetween?

    • Anonymous
      February 13, 2010 at 12:29 pm

      I am 60, not really in pain but some discomfort. Why I can’t sleep is the big question. I have found that I need to just lay down and do nothing for about two hours before sleep comes and then I only sleep for about four hours. This is still all new to me. It like I have to wait for my brain to slow down.

    • Anonymous
      February 13, 2010 at 8:26 pm

      it depended on what meds I was on…. Cutting out a lot of them helped. Neurontin, for example does interrupt sleep patterns big-time. At least for me. Once off it and onto another med I found I’d started DREAMING again! The pent up backload led to some truly whopper dreams tho, I gotta warn you? Once you can dream, then powernaps and dreaming can and do occur more often. I guess when you don’t dream for a year on one med? and change to another? You’ve got a ‘backlog’?
      It lessens rapidly, but those first few? Just be prepared….
      Go and read all the ‘full prescribing medical information’ of any and all meds your are on! Look at the ‘common’ reactions and the lesser ones too… There isn’t a lot of research about IF you are on ‘other’ meds tho. and that’s where it all gets mushy. Call the Med companies’ 800#’s and ask questions? I bet they will get this into their data bank and also mite be able to give you some guidance.
      Keep hope and faith! Keep that good ATTITUDE! Too!

    • Anonymous
      February 14, 2010 at 8:55 am

      Part of it might be age.. I know I don’t sleep as well as I used too… May wan’t to change up your early evening habits…. Maybe something is keeping you brain “on”…
      I’m not a sleep expert just have read some….

    • Anonymous
      February 23, 2010 at 10:42 pm

      During onset, I was in too much pain to sleep normally, had to go to the bathroom often because of lack of muscle control over bladder and bowels.
      And the pain of GBS exhausted me so much that it was hard to fall asleep, but I’d make a blanket tent over my feet, so they couldn’t touch the fabric, and I switched to a foam mattress, which warmed my body and had less pressure points than my other mattress. I was then able to sleep for a few hours at a time. The brain has changed. It will take time to heal the sleep center of the brain.
      So I learned to do chores and tasks in small amounts, and rest frequently in between. Nothing is the same any more. But life can still be good, as we re-learn how to live it in our condition. I use acetaminophen for pain, and if I’m in pain at bedtime, I usually can’t fall asleep, so have learned to take a couple of pills if I’m in pain, so I can get some sleep instead of fighting pain till 4 AM, and then finally getting up to take some pain meds.

      Sometimes it helps to read a bit at night; be very warm in bed, dark curtains and window blinds. Ear plugs helped me, as my hearing was damaged but also acute, any sound would wake me. I drank a lot of coffee after I got GBS, and it actually helped me to sleep, whereas in my previous life, one cup of coffee after 5 PM would have kept me awake all night. Hot chocolate at bedtime also helps me to sleep. Hot soup. Warm pajamas or nightgown; bedsocks, if your feet can tolerate them…I couldn’t at first, but later I could, and they warmed me up enough to relax me so I could fall asleep.
      Hope things get better for you…it’s hard to be sleep-deprived…try not to worry about it…it’s normal in this condition…you’re getting better…be patient.

    • Anonymous
      February 24, 2010 at 6:54 pm

      Great suggestions. I used foam mattress, too, sheet tents, flannel sheets (had to stay warm, warm, warm), hoods or hats for my head, always socks…..but socks with ribs were just too painful. I was unemployed so I just slept when I could regardless of the time. Finally after two years and two months, I could sleep through the night…most nights! Oh, and don’t even think about turning on that fan on a hot night…woke up tortured with pain! 😮