• December 6, 2007 at 11:17 am

      Hi all

      new question…at least new one from me….

      I have had trouble sleeping since I got sick. Not sure if it is because of the fear I had about falling asleep and the GBS progressing during the night or what. This is what I often experience….

      I am exhausted but can not fall alseep

      I finally have to take something and then I sleep restlessly

      Some times as I try to drift off, I have a rushing feeling in my head. Not sure how to explain it really, but it feels as if things are rushing towards me? It zaps me wide awake because it feels so bizarre.

      I sleep hot, end up kicking the covers off and then at some point I get cold and feel as if I am freezing. Sometimes even if I stay covered I am cold even chilly to the touch. I have started wearing an extra layer just in case I decide to ditch the blankets so I wont get too cold.

      snoring!! Holy cow this is embarrassing for me. I still have slight problems with my throat anyhow and at night when I am asleep I start shaking the walls. Hubby shakes me and of course I have to try and get back to sleep. He also has told me (he stays up really late) that I am very restless at night even though I dont remember any of it.

      All of this makes for a tired me the next day…every day.

      Am I headed towards menopause? Am I nuts? Could it be GBS related?

      Oh and the other night my son and I went to a town holiday celebration and I was cold…everyone was cold…and I was shivering. The next day my arms felt as if they were going to fall off! I assume the shivering fatigued my muscles or something. Is this normal?? My hubby says I need to learn to function within my limitations. Fine, I can try that. BUT if something as simple and natural as shivering is going to make me feel like **** the next day, what exactly are my limitations?!

      Thanks for listening.

    • December 6, 2007 at 12:02 pm

      Kevin too had difficulty falling asleep, almost exactly as you describe it. We went to the doc, would not give sleeping pills, but said try melatonin, it’s natural. It did make him sleep soundly. Because we found out it is not approved to those under 25 and dangerous for children we stopped. Anyway, about 11 months out from dx of cidp, the sleeping has improved.

      I feel now that we understand the illness better, know how to keep it under control, and have lived with it, the stress level is better. I wonder if the illness itself caused the problem or the anxiety associated with the illness.

      Sweet dreams and well wishes sent your way.
      Dawn Kevies mom

    • Anonymous
      December 6, 2007 at 2:28 pm

      I also had trouble sleeping ,it has been that way since i started getting my first systoms.It has been 16 months since my dx and i have had to use sleep aids to got to sleep at 10pm and then wake up at 1am but now this month i am sleeping better without any aid .The only thing thats differnt is i started taking Lyrica .

    • December 6, 2007 at 2:34 pm

      I am glad your sweetie has found relief. I tried melatonin and it made me feel really odd so I didn’t take it again. I am seriously thinking of looking into rozerem (sp)…ambien gave me a headache. Right now I take an OTC sleep aid (nothing more than an antihistamine and I have found that most name brand sleep aids are more $$ than plain ol benedryl. But doxylamine succinate works better). Anyhow, the sensations i have while trying to drift off is the same if I take something or I don’t and they are troubling. Last night my hubby woke me and asked if I was okay. I’m alseep and being rudely awakened is not what ya want to do to me because I get a little fiesty. I told him rather snippy that of course I was okay why the heck would you wake me up to ask that?! He said it sounded like I was having trouble breathing or something. I have tried the breathe right thingies, snore stop spray, and a new pillow. Yes sometimes I do feel I am not breathing properly when I start to fall asleep, but I have no clue if it is GBS related or not or if I should be seriously concerned. I’ve never experienced sleep apnea before and have shared a bed/room with this man for several years…he has never once questioned my breathing or whatever until now. The breathing thing feels as if my timing is off or something, like I have to think about breathing or it feels like I am not taking a breath at the right time or whatever. Does that make sense?

      When I was sick, I had slight problems with breathing. Yes I should have been in the hospital but that is another story. I would ask hubby to work late or play his pc games and keep an eye on me….was afraid to tell him why for some reason. Finally did a couple of months ago and he got upset that I didnt fill him in way back then. And I had problems swallowing…it took more effort to do so but I never choked on anything. I still feel like I cant swallow like I used to and I assume that is where the snoring comes in. All of this scares me because I am afraid my auto switch wont work and I will just stop breathing while I sleep. Which sets up anxiety, which makes it hard to go to sleep on top of already having problems. And there is nothing decent on tv late at night/early in the morning. I am getting tired (HA!) of not being up with my 3 kids in the morning to see them off to school. Thankfully they are old enough to get themselves ready and whatnot, but that doesnt make me feel any less guilty.

      Lack of sleep…proper rest…leads to residuals being yucky, which also leads to exhaustion, and grumpiness. I feel as if I am not functioning 100% and not carrying my weight around here. A huge guilt trip let me tell ya!


    • December 6, 2007 at 4:56 pm

      Please excuse my ignorance!

      I cannot remember if you are gbs or cidp. If cidp, could you need more treatments?

      If gbs, is it possible to go to an ent to see if there is a way to see if your swallowing abilities are properly functioning?

      I seem to see a connection between some on the sight. Sleeping issues followed by sleep studies. There has to be a correlation, both for gbsers and cidp. Both post on this site regarding the problem of not being able to sleep.

      Good luck!! I am at a crossroads once again too, trying to figure out how to get literature that is convincing to my doc NOT to use Cell cept and to continue ivig. Going to another doc and starting over would be awful!

      I hope that the peace of sleep will soon come your way!!!!
      Dawn Kevies mom

    • December 6, 2007 at 6:43 pm

      [QUOTE=greasemonkeyfred]I also had trouble sleeping ,it has been that way since i started getting my first systoms.It has been 16 months since my dx and i have had to use sleep aids to got to sleep at 10pm and then wake up at 1am but now this month i am sleeping better without any aid .The only thing thats differnt is i started taking Lyrica .[/QUOTE]

      You are only a couple of months behind me as far as onset! I got hit in July of 06 and still find it hard to believe it was THAT long ago. I am on wellbutrin…low dose…and was told it would help with sleeping but it doesnt. Maybe I need to look into something else. Lyrica would help with the tingling and pain at night as well right? It hasnt made ya feel like a zombie or anything has it?

    • Anonymous
      December 6, 2007 at 7:29 pm

      I have CIDP and do not sleep without a sleeping pill. Even with the pill I’m up everytwo hours.
      Today, whole body has been having jolts, tingling, shivering. Unable to control any of it. Just have to lay down.
      If remains in AM, will call MD and make sure my symptoms are not progressing.
      Hope to Tomorrow is better for you.

    • Anonymous
      December 8, 2007 at 9:26 am

      Hey Lori ~ welcome to the “club” ๐Ÿ˜ฎ Your description sounds just like me for many years! Oh, it has settled down a lot but I find the best for me is some Ambien every 3-4 nites. I get a deep sleep then and feel better for a couple of days. Mind you, I didn’t say that I feel “rested”. That is a distant memory ๐Ÿ˜ฎ This syndrome has so many weird things about it! I just keep reminding my self that the communication system for my body ~ all organs, muscles, cells (get the picture!) has gone on the fritz and it will do any old erratic thing ๐Ÿ˜ฎ Hang in there, Gal!

    • December 8, 2007 at 7:51 pm

      Thanks all, I am learning so much about what is “new” post GBS. I dont like attributing every thing to it of course, but when something that wasnt there before is now a part of my life I kinda lean towards the wackiness of communication within me…or lack there of ๐Ÿ™‚

      *yawn* thanks a bunch and here’s wishing a good nites sleep and sweet dreams to us all ๐Ÿ˜‰

    • Anonymous
      January 17, 2008 at 11:07 pm

      trisadone 100-200mg; non-addictive generic and costs $4 at Kroger’s and other pharmacies.