• Anonymous
      August 17, 2010 at 5:34 pm

      I have trouble falling a sleep most nights and end up sleeping past noon time when I do. There are nights I don’t sleep at all. I get up to read after trying to sleep and watch the sun rise. Sometimes I go from my bed to sofa to guest room beds to recliner with no luck.I may wake up every 20 minutes through the night. Varies as you can read. I have tried so many ways to fall sleep-counting backwards, relaxing beforehand, no caffeine after 6 PM and others.

      I make all my necessary appointments even when in the mornings. When I have IVIG the next day is usually a goner as so tired from it.Days I can’t function due to CIDP are “goner days” too.

      Had the 24 hour sleep test 3 1/2 years ago and it showed I only hit REM during the day. I have an appointment this week with a sleep specialist my neurologist arranged. Neuro thinks I may have sleep apnea but my problem is “falling asleep”.The old sleep test didn’t show any signs of sleep apnea and my sleep problem is not new.I know the sleep doc will had me a prescription for something and I have had frightening reactions to these kinds of meds. Ambien CR by the third day caused to start laughing uncontrollably and falling over in the restaurant booth.

      I know many of us have sleep problems as I went back to read some of the older posts. My IVIG nurses say the patients tell them that too. I haven’t tried Melatonin yet as the side of the bottom warned that people with auto-immune disease shouldn’t use it.I know some of you have tried it but with what success?

      This sleepy head thing does cause me to feel crummy but when I do get up I accomplish all that needs to be done with my household. I fight extreme fatigue from CIDP and get so tired that too interferes with decent sleep. I am trying my best and rearranged my life to go with the situation. Even garden in the dim evening light or 5 AM.

      Some of us need 12 hours+ of sleep and no matter what the fatigue is always there. Just posting what’s been going on with my sleep. Maybe we could start a 4:00 AM chat line.

    • Anonymous
      August 17, 2010 at 8:11 pm

      I find that my sleep apnea does me the same way. I have very irregular sleeping habits. Wish I could give you something more helpful.

    • Anonymous
      August 18, 2010 at 1:36 pm

      Hi there!
      Oh yes I also went through the sleep thing, I kept waking up throughout
      the night mainly because of severe pain. Doc put me on 100mg of Trazodone
      and 200mg of Neurontin in evening, now I sleep like a baby with no side
      effects thank the Lord!! I certainly hope you get some help soon.
      Miss Judy

    • Anonymous
      August 18, 2010 at 4:31 pm

      I tried melatonin only once, and I felt like it kept me up all night, was a stimulant, so I haven’t used it again. It might have just been coincidence because I too have sleep problems now too. I feel your pain. I used to sleep like a rock before the GBS, now it is very restless, waking up from pain, weird sensations, insomnia, waking up early, etc. It is very difficult to get a good night’s sleep now. Let me know if you try the melatonin, if it works for you, and maybe I will try it again.

    • Anonymous
      August 18, 2010 at 8:40 pm


      I have had sleep problems for as long as I can remember. CIDP hasn’t helped things much. I also have sleep apnea and use a CPAP. I’m on 30 mg ms contin, 900 mg neurontin 50 mg Tristan. That help me get to sleep, but I have a hard time getting together in the morning.

      I hope I can find the right “mix” for a good night sleep and “alert” day. It could be the CIDP not the meds is the problem with the wipe out during the awake hours. :rolleyes: Hopefully this may be of some use to you.

    • August 18, 2010 at 9:15 pm

      I tried the melatonin only a few times and was wide awake 2 hours after taking it for the ENTIRE night—seemed to have a stimulating effect. I’ve also read that melatonin only works for people who arent’t producing it properly at night–possibly if were not falling asleep with it –our bodies arent lacking it??? Lori

    • Anonymous
      August 21, 2010 at 10:41 am

      OMG i wish I had sleep issues. I am on so many drugs that make me drowsey and the chronic fatigue. I sleep all day and all night without issue

      I went out yesterday and fell asleep in my wheelchair waiting for my appointment

    • Anonymous
      August 28, 2010 at 10:30 pm

      [QUOTE=jasonscamera]OMG i wish I had sleep issues. I am on so many drugs that make me drowsey and the chronic fatigue. I sleep all day and all night without issue

      I went out yesterday and fell asleep in my wheelchair waiting for my appointment[/QUOTE]

      This is also my issue. I sleep all the time. St least 16 hours a day usually. We think it is a combo of pain meds and the Cidp itself. Doc gave me adderall to counter the effects but my body gets used to it and I still sleep do I have to take breaks on a regular basis and then go back to it.

    • August 29, 2010 at 1:12 am

      Funny how everyone is so different. I am in for 5 days of IVIg every 5-6 weeks (2+ years).
      I was taking Trazodone for about 4 months, it really knocked me out and I slept great. I had to take a Claretin with it because it stopped up my nose big time.
      The problem I was having with Trazodone was how foggy my brain was in the mornings. I just couldnt wake up and perform at work (desk job). I had some days where I was a zombie for many hours in the morning.
      Just 4 weeks ago my Dr’s switched me to Melatonin and I really like it. I take just 5 or 10 mg. and 30-60 mins later I am really tired. It is over the counter so I doubt it is very powerful, certainly not like Trazodone.
      So for now I’m sticking with the Melatonin as I don’t have any issues getting going in the morning and I sleep pretty well with it.

    • Anonymous
      August 31, 2010 at 10:43 pm

      my sleep issues come from the other side, I have sleep apnea so I “fell asleep” at the drop of a hat, but my slep was not of a restful quality. I had a sleep study, was diagnosed, wear a CPAP. That was, gosh 15 or 16 years ago and things have been fine since then.

      No REM sleep, does that mean your body gets rested during “deep sleep” but your brain doesn’t get the recovery time it needs and you wake up feeling mentally tired but body fine?

      Either way it is no good. I sympathize with the …can’t sleep, can’t sleep, and then sleep until afternoon, and then can’t sleep again. Whenever my sleep cycles get messed up it sometimes takes a week or more to get it all straightened out.

      I hope the sleep study finds something that will help. I know that when you don’t sleep well, nothing else does good either. Good Luck

      Dick S

    • Anonymous
      September 1, 2010 at 1:19 am

      Dick—REM is when we’re in deep restful dreaming stage. I REM during the day according to the 3 naps I had to take at for my 24 hour Sleep Center study. My sleep cycle is turned around and repeated attempts at changing it haven’t worked at all.

      I canceled my initial Sleep interview appointment as I couldn’t do another doctor visit right now. I’ll re-schedule after I see neuro again this fall. He was just trying to think of something that might be causing my insomnia at my last visit because I hadn’t slept the night before. I start sleeping hard by 6-7 AM and can snooze with the best of them till 1:00 PM or later. Sounds decadent but it isn’t.

      So much of this is inter-related with profound fatigue and other CIDP fun stuff.

    • Anonymous
      September 2, 2010 at 12:10 pm

      Amitriptyline…an old-school “tricyclic” antidepressant…works very well for sleep, and also helps nerve pain. It’s used quite commonly; I’d ask about it. I was given a scrip, was very hesitant to take “another drug”, but it really works well for sleep, and, at least for me, has very little “hangover” effect. Make sure you start on a very, very low dose, though…like 10mg. From there you can always go up…and that dose is only about 10% or less of the dosage used for depression. I can’t imagine how sedating it would be at the full dosage! But, in these micro-doses, it really helps with sleep.

      Hope it helps.