I cant sleep

    • Anonymous
      August 28, 2008 at 6:38 pm

      I have been registered on this site for a long time, but this is my first post. I was hit hard and fast by GBS in March of 04. I was at work on a Thursday and felt fluish and was intubated by the next tuesday. Thank goodness they started plasmapheresis relatively quickly and although I was completely paralyzed (from nose to toes) I recovered pretty quickly. I was intubated on March 7th and walking on a cane by August. I had an AMAZING neurologist and an even more talented Physical Therapist. Unfortunately, despite my phenomenal recovery, there are some residual “hiccups”. I still have a pretty acute sleep problem. It was initially treated with Lyrica, with the assumption that it was burning feet. I later realized that this was not so much an issue as I just plain couldnt sleep! Is this normal? Could it be post traumatic stress or some type of somatic issue? I do well on Ambien CR, but find if I take it every night I develope a tolerance and need to stop taking it for a week or two (which of course leaves me awake and frustrated) I have tried Melatonin, adjusted exercise schedules, Seroquel, Trazodone, Amitrypteline, Velerian root and every other herbal and pharmeceutical remedy I can think of. Can I expect this to get better over time? One more thing… Has anyone heard of this Greentea HP? I am trying this now and am enjoying the results thus far – Getting through the day with more energy. Anyone had any luck with this product?

    • Anonymous
      August 28, 2008 at 6:52 pm


      I haven’t slept well for years. Now, at 51, it is really a rare treat to get even 5 or 6 hours of decent sleep. I have never taken any sleeping medication. My sister in law took ambien until the insurance company refused to pay for it. If you are not against adult beverages, sometimes a glass of wine will relax you.
      Just a thought.

      Good luck. I know what it is like not to get a good nights sleep.


    • Anonymous
      August 28, 2008 at 7:06 pm

      Kimberly, welcome and glad you posted. A lot of us don’t sleep well. Some folks have mentioned sleep apnea. Sould that be an issue for you? I know at first for me I think it was PTSD. I was afraid to go to sleep and then I couldn’t after a while. I am not sure what could be going on for you but hopefully someone here will have more answers for you.

    • August 28, 2008 at 10:01 pm

      Sleep only happens if I take a xanax to turn my mind off. Even when I try to nap I experience strange things…mini panic attacks, a rushing sensation (almost as if something is coming at me at break neck speed or a huge adrenaline rush or something. Not sure how to explain it), my mind starts worrying about this that and the other thing. I know being afraid to fall asleep is a big issue for me…started waaay back when my dad died. My mom, bless her heart, told me he was asleep. Welllll I can remember panic attacks at night as a small child because I was afraid of falling asleep and dying. Then when I got hit with GBS, I was terrified of falling asleep because I was afraid that it would affect my breathing muscles and no one would know until it was too late. It hasnt gotten much better. As soon as it is bedtime, and I want to sleep, I cant. I start having anxiety problems. It’s wicked. If something awakens me, I have adrenaline rushes that make it difficult to get back to sleep. I have had great luck with xanax at night. OTC sleep aids no longer work and usually make things worse. I used to be able to take one benedryl and it would knock me out, but not anymore. Anyhow, yea, sleep problems are definitely worse. I know I snore occassionally (dry air and allergies dont help), but hubby has only once said he noticed me breathing oddly. He usually stays up much later than I do once I have xanax on board.

    • Anonymous
      August 28, 2008 at 11:10 pm

      Hi Kimberly! Welcome to the site and I’m really glad to see your posting. I have Lupus and now CIDP. But still be worked on the CIDP trying to find the cause. I have tried all kinds of drugs trying to get some decent sleep and yo no avail, nothing has worked for me. I went to bed tonight and went into a deep sleep to wake up and 11! What a bummer!:(
      Sometimes I get maybe… if I am lucky 6 hours. After 3 days the exhaustion sets in and then I may see eight. I had a sleep study done and now have sleep apnea. Have a follow up for CPAP fitting.
      Seen some nights where I get only 1 hour of sleep. I was told by my doctor on Tuesday that alot of folks with auto-immune disorders can develop sleep apnea and end up requiring a CPAP for helping the airway better at night! When I get that machine, I will post and let you know if it works.
      I get so tired of not seeing sleep. 3 years ago, I slept like a baby. Now I see a sleep pattern that is totally a miserable thing to go through, but I have bee dealing with it.
      You may want to talk with your doctor about having a sleep study. Your airway might not be fully healed and need the extra air for sleeping. At night your body while trying to sleep maybe working overtime and can’t take the load.
      Hope tonight you are sleeping in peace! Hugs

    • Anonymous
      September 1, 2008 at 1:45 pm

      Thanks for the input guys! I talked to my husband and he said that I do snore at times… so maybe the throat muscles arent quite what they used to be. I do choke on ABSOLUTELY everything I eat. I even got a talking to at work for my choking be disruptive LOL! Not a lot I can do about that. I did take singing lessons after my bout, but maybe I will re-explore that and see if it makes a difference. Again, I appreciate the input and ideas.

    • Anonymous
      September 18, 2008 at 11:42 am

      So, I have more questions. The last two nights in a row I have slept from about 9:15pm to 10:15pm. I am so frustrated. I am losing productivity at work which affects my bonus. I have a doctors appointment next week, but I was wondering if someone could tell me the symptoms of sleep apnea? I am narrowing my issue down to an anxiety problem… but I am curious about sleep apnea — ๐Ÿ™

    • Anonymous
      September 18, 2008 at 1:26 pm

      Welcome to the forum. I do not have sleep apnea, but some of the symptoms would be, excessive snoring, when sleeping on back, tongue falls back & blocks airway, lack of ability to breath deep when alseep. I guess these arn’t symptoms but more like causes.
      I take xanax 0.5mg 3xday every day & Zoloft 75mg. daily. I NEVER sleep thru the entire night, never, bummer. If I have several nights of sleeplessness I take a couple of benadryl right before bed & that also seems to help.
      Hang in there & good luck.

    • Anonymous
      September 18, 2008 at 5:29 pm

      hmmmm, well in that case – it doesnt sound like an apnea issue for me. Maybe my husband though! And his snoring is another thing that keeps me up ๐Ÿ˜ก I have an appointment with a new doctor this week and I am considering asking for xanax for night time. It seems extreme, but extreme times call for extreme measures. I am determined to sleep. Thank you so much for the apnea info… it gave me something to rule out. ๐Ÿ™‚

    • September 18, 2008 at 6:25 pm

      Hi Kimberly,
      I do not have gbs or cidp, my son does. I too have trouble falling asleep. When Kevin was first dx, the doc gave me xanax to deal with this crud, I only used a couple, so I have my reserve. Lateley there have been stressful issues at home, so I pulled it out and took 2 at bed time, did not do much. I seem to have luck w/ a generic sleep aid from Sam’s Club, I think it just says sleep aid. I believe it is just 50mg of benadryl packaged differently??? I will check tonight. Kevin who is 11 and has cidp also has trouble sleeping. Our pediatrician whom we no longer go to told us to get melatonin, we did and indeed it did work. The only problem is we later found out through the alert from someone on the site that it is dangerous for children. in fact it was. But it did indeed work. Kevin still has trouble sleeping, I personally believe there is some sort of cidp nerve component, but I think the majoruty of the problem is due to the everyday stress that accompanies gbs/cidp. These days, we do relaxing techniques, breathing, back tickeles, warm shower, and a benadryl if needed. We just hope for the best!!! Sweet dreams and good luck sleeping tonight. We will be thinking of you1
      Dawn Kevies mom

    • Anonymous
      September 19, 2008 at 11:27 am

      Hey Dawn!
      I tell my mom everyday that I think my GBS was much harder on her than it was on me. SO on behalf of me and your son, thanks for being a dedicated GBS mom. Eventhough I was 24 when I was hit, she never left my side. It was so weird to be 24 and having my mom wash my hair in the shower like she did when I was 4…. but she did it and never complained or got tired or ANYTHING… moms are amazing.
      I worked at at children’s psych hospital for a few years after I got better and we very sparingly gave kids melatonin and it did work, but we rarely sent them home with it. I tried it – but I may give it another go. I have tried some OTC’s but have to brand hop because of the plateau affect – I will give this Sam’s club thing a try as well. I am hesitant to try the xanax, only because when I worked in the psych unit, we detoxed a kid who had gotten addicted to it, and it was 1000 times worse than watching someone detox off of heroine… I really thought she wasnt going to make it. It was HORRID. I did have a successful night of sleep last night. Typically for every 3 nights I struggle, I get one good crash. I got a massage in the afternoon, took a hot bath at 6pm and cried myself to sleep at 8:30 – (that is always fun for my husband) Thankyou for all your input. I like to know what works for other people and to know that I am not up all night by myself. I do believe that there is some sort of nerve component… here’s hoping the pharmaceutical companies find some success in this. ๐Ÿ˜‰

    • September 19, 2008 at 12:04 pm

      Wow! that was such a positive post, it gave me a smile, thanks! Your statement regarding your mom exudes love and appreciation, I hope she knows how much you appreciate her. When Kevie tells me, it gives me such a warm feeling, it gets me through any day!!! The xanax comment you made freaked me out, I already am an addictive personality (food) the last thing I need is something worse than heroine. Yikes!!! Bye Bye xanax!!! I remembered something else that helps KEvie, kind of wacky, but….. Tide makes a lavendar scented soap and rinse, it really did make him comfortable. I did notice also that if I cn catch him with some sort of relaxing technique before a full blown anxiety attack happens, we can fall asleep w/in a 2 hour window. That is our key, not to let the breathing issue and crying start. Sweet dreams tonight!!!
      Dawn Kevies mom

    • Anonymous
      September 19, 2008 at 2:29 pm

      Hi Kimberly! Have you ever tried Ambien CR. That is non addictive and helps in sleeping. They just put me on that but I am also on a short term of Ativan. Don’t like being on that drug because it can be worse than Zanax! But taking it right now. The Ambien CR will put you to sleep. It has been helping me out. It’s a better version of the old Ambien and last longer! That is worth asking about!

    • Anonymous
      September 19, 2008 at 3:36 pm

      Hey Linda!
      YES I am actually currently on Ambien CR, but my problem this week has been that I plateaued. My doctor warned me that this could happen if I took it every night for a long time… and silly me, I didnt listen. I actually LOVE this medication so much that I pay for it out of pocket as my insurance only covers traditional Ambien. I have to purge it out of my system for 3-5 days every now and then to keep it working – I have been off of it for 4 days now and I am PRAYING that sleep will come next time I take it. Now that you mention it, maybe I will ask my doctor to keep me on the ambien cr, and then just give me somethign for those 5 or 6 nights that I have to go off of it. -sigh- its all so complicated — wouldnt it just be easier if alcohol worked? HAHA! I hope the Ambien works well for you!!! Happy sleeping.:D

    • September 20, 2008 at 9:48 pm

      ๐Ÿ™ Hi Kimberly I’m afraid I have not slept well in 11 yrs. I can’t sleep unless I take something, have been on Ambien and now Lunesta. I have gone for 3 days and not slept. I’m tired but that makes no difference. Wish I had a solution for you as well as me. Joanalice

    • Anonymous
      September 22, 2008 at 5:27 pm

      Its stinks doesn’t it. ๐Ÿ™ I get so irrational and emotional without sleep. I am SURE I will find something that works. I am determined — I will keep you all posted on my little journey – I refuse to give up on this. I like sleep way too much to settle for only a few hours every 3 or 4 days. ๐Ÿ˜ก

    • September 22, 2008 at 6:17 pm

      Hey Kimberly,
      If you get a chance, check out the latest consumer reports magazine, it has an article about sleep, or lack there of. They were comparing white noise machines to ambien, ambien cr and a couple of other drugs. The white noise machines (sounds of nature etc to fans) actually faired as well as the pharmaceuticals. Practically neck and neck. The machines were $120 – $30. It was interesting to read and actually went into great discussion as to what causes people to be sleepless.
      Dawn Kevies mom

    • Anonymous
      September 24, 2008 at 1:39 pm

      That is a great idea! I have seen white noise machines in some of the therapists offices where I work. I think I will have to look into that! Thanks for the heads up! Have you tried one yet? Let me know if you do I would love to hear how it works for you!

    • Anonymous
      September 24, 2008 at 7:36 pm

      Hi Kimberly,

      I know this is going to sound silly and sooo simple, but try drinking a cup of warm milk or hot chocolate right before going to bed. I found the following on mayoclinic.com:

      “If your mother used to give you a cup of warm milk before sending you off to bed, she had the right idea. Dairy foods are a good source of tryptophan, an amino acid that your body converts to melatonin and serotonin โ€” both of which are thought to induce sleep. Other tryptophan-containing foods include oats, bananas, poultry and peanuts.”

      I usually use Nestle Quik because it doesn’t have caffeine(can’t stand just warm milk-Yuck!), or only a very small amount. The tryptophan in turkey is why we get sleepy after eating too much at Thanksgiving.

      The hot chocolate doesn’t always work for me, but it does help, especially if I read for awhile also.

    • Anonymous
      September 25, 2008 at 4:56 pm

      Hey, that is a great idea. My Dad used to sneak me a mug of warm milk with a drop of molasses in it sometimes when I was upset. It always kinda slowed my heart rate down and make me feel warm and relaxed. I dont know if it was the milk, or the gesture but either way it made me feel better. Maybe I will give that a try – it worked when I was 5, and it just might work again!!

    • Anonymous
      September 25, 2008 at 10:03 pm

      No doubt about it, the GBS affected the sleep center of my brain, among other things. But I’ve learned a few coping strategies. For instance, if I wake up at 3 AM and can’t fall asleep again, I get up, go to the kitchen and do the odd chore or two. My muscle system is so damaged that I can only do physical activity for about an hour before feeling exhausted. Then I go back to bed, and I fall asleep. It works for me.

      The second thing I do to fall asleep in the first place is to go to sleep watching a movie. Anything with the titles: Godzilla, Rodan, Mothra, etc, etc. will put me to sleep within half an hour. I have attempted to watch these movies many, many times now, and I still don’t know the ending to any of them, because I fell asleep.

      The third thing I do to fall asleep is going to bed with toast, camomile tea and a good book. After a few pleasant relaxing moments, I can just switch out the light and I fall asleep within minutes.

      It also helps if I turn up the heat, and wear warm pajamas and socks, if my feet are in an icy mood. I use a foam mattress since the GBS, and it helps to warm me and relax me, and has been a big help in my recovery to date.
      (lullabye, and good-night…..lah,lah,lah, lah, lah, lah, laaaaah………….zzzzzz)


    • Anonymous
      September 26, 2008 at 12:38 pm

      [FONT=”Arial Narrow”][SIZE=”3″]Hi Kimberly, I have trouble sleeping too, and I get nightmares sometimes. I had this one sleeping aid that my doctor prescribed to me but it gave my awful headaches. Supposedly Benadryl can make you sleepy ask your doctor about it. [/SIZE][/FONT]

    • Anonymous
      October 1, 2008 at 5:09 pm

      I started seeing a new PCP this week who is GREAT! She gave me some samples of Lunesta, which works okay but leaves a horrrrible nasty taste it in my mouth. I can tolerate this as long as I am sleeping. It worked okay – I still like the ambien CR better. She asked me to keep a food log. I am very consciencious about my eating, but she is thinking that perhaps I am getting stimulated at night because of some nutritional issues. I tend to become really lethargic in the afternoons and my activity level dips. I am careful not to nap – but often cant find the energy to do much more than veg after a full days work. Maybe if I eat more energy efficient foods, I can do more later in the day to wear myself out. Also, I switched from Celexa to Welbuterin. Celexa was helping me with some depressive symptoms – but I was feeling pretty flat and unmotivated. Because Welbutrin is an SSNI as opposed to an SSRI, it is a little less sedative. Maybe more activity will be my pathway to more sleep! We will see. I am excited about this though! there is always HOPE!!!! I will keep you all posted.:)

    • Anonymous
      October 1, 2008 at 5:10 pm

      SNRI not SSNI…

    • Anonymous
      October 8, 2008 at 4:41 pm

      Hi Kimberly,
      How’s it going? Any improvements on your sleep patterns yet?
      All the best!

    • Anonymous
      October 9, 2008 at 9:02 pm

      I have not slept well in years. Between the restless legs, menopause and my husband snoring, I am lucky to get 4 or 5 hours of decent sleep. I have tried just about everything, except pills and smothering my husband with a pillow, and have had some luck with a glass of wine now and then or warm milk, but nothing is a certainty. Sorry I couldn’t be of help, but if you find anything natural let me know.

      Take care, Susanne

    • Anonymous
      October 10, 2008 at 7:54 am

      Hi all,

      Putting in my two cents! Of course I have sleep problems (prednisone doesn’t help)! I can’t take pharmaceuticals, very sensitive to drugs………….I did try something recommended by a friend. It’s chiropractic, but not in the traditional sense. I’m adding the link if anyone is interested in what this practice does.(I’m sure they aren’t the only ones practicing) ANYWAY, I went for the first time, and slept 10 hours that night. It makes sense to me, since they focus on the nervous system!! It is non invasive, very soothing, and I plan on going back weekly. Hope this helps.



    • Anonymous
      October 20, 2008 at 10:15 am

      That is awesome Theresa! I am definately going to look into it. I am also going to stop getting pedicures and start getting regular massages. I think that will help. I have been on the welbutrin for almost a month and have noticed a change. I am definately more energetic and more motivated to be active, which is helping with stress, which is giving me less to stay up and worry about at night. Progress HAS been made. I was given 18 doses of Lunesta at the beginning of the month and have a few left! I will keep you all posted and I really appreciate all the feedback.

    • Anonymous
      October 20, 2008 at 12:12 pm

      i have same trouble somtimes.but not always i got gbs in aug 05 but it didnt get far before i caught it so i didnt need ventalation just plasm somthing and neroligist in richmond ind are not good with my after effects have,nt been able to work since but still fighting disability and they took my medicade and i realy need to see doc again but cant

    • Anonymous
      October 29, 2008 at 3:20 pm

      Here are a few wholistic suggestions:
      Do not sleep on your back – sleep on your RIGHT side – this is healthier for your heart and you won’t snore which is disrupting your sleep.
      Do not eat protein before you go to bed. I could not figure out why I had trouble sleeping when I was doing the Atkins’ diet which is mostly protein. Then I read that the body needs carbs to make serotonin during the day and melatonin at night. Even though I was dropping pounds, I needed more carbs for being happier during the day and sleeping at night. Experts say not to eat after 8 PM. I find that doesn’t work for me. If I eat a light snack closer to bedtime, I sleep better. If I don’t, I shall have to get up in the middle of the night to eat something so I can sleep.

      Hope this helps. I stay away from pharmaceuticals. I don’t prefer to drink, but as a last resort, I would have a scotch on the rocks. Less side effects than the sleeping pills. At least you won’t be eating or driving in your sleep like some of those pills!

    • Anonymous
      October 29, 2008 at 6:04 pm

      I was wondering if anyone has ever tested their salivary cortisol levels and found them to be high in the evening? I read a lot of alternative medicine, or not so alternative as many of the papers are written by MD’s, but most comment that sleep issues are often a problem with high cortisol. And if you have pain, it makes the situation worse (raises cortisol levels).
      And I am no way recommending that you take this, but people on one of my thyroid lists use Phosphorylated serine to decrease their evening cortisol levels so that they sleep. I gave that info in case anyone wants to google it…or just see how cortisol affects sleep.
      These MD’s also recommend what to eat, not eat, an many other things to help people sleep better in the evenings (google sleep + cortisol, etc).


    • Anonymous
      January 18, 2009 at 10:38 pm

      Hi Kimberly
      I havent posted or replied in a long time but I decided to check out the forum tonight and saw your post. I know its been months but I was curious how you are doing since I also had GBS in April of 2004 (also had it 10 years prior) and was fully paralized and on a vent like you. I finally came home in August to recover better at home. I too have such a hard time sleeping. I used to be in bed by 9 pm and could sleep all the way through. Now I can stay up until 1am and have a hard time falling asleep and my husband snores ALOT which is frustrating in itself and then I keep looking at the clock and seeing how much sleep I am NOT getting and I get more frustrated. I also take Ambein CR and I must say I love it but I am not a drug taker and always fear the “addiction” aspect even though they say its not addictive. I do the same thing you do, go off it and when you go off it for those first two or three nights you cant sleep at all. I was doing really well and two weeks ago I had so much pain that I took it again and I keep saying I will go off of it but I really like sleeping at night and then I tell my husband to “have at it” with his snoring because it doesnt faze me. I will tell you though I have figured out that it works best when I take it at about 10:45 or 11:00pm and i stay up until I am as loopy as I can be and then I get my full nights sleep. On saturdays (because of early church on sundays) I take it at 10:00 pm and go to bed at 11:00 and I wake up through out the whole night. My whole family constantly jokes about how I am when Im on ambein and anytime I say I didnt know something or I make a mistake the first thing they say is “were you on ambein?” Let me know how your doing and if you found anything else that works. I think the worst is the stress that developes from the frustration of wondering IF we will get any sleep.

    • Anonymous
      January 19, 2009 at 1:19 am

      Hi Kimberly! I still have nights of where I can’t sleep but not as bad as it was in the summer! Actually started getting better. But when my lupus acts up I stay in pain. My sed rate is always high because of inflammation. I plan on mentioning this to my doctor when I see him in February. So far I have done great with my thyroid removed but when I have nights of pain I can’t sleep either. Maybe the cortisol will work. I think he tested me for that but not sure for I do not have the lab reports from him from my last visit. Getting ready for bed now and am hoping I sleep! Hugs! Good to see you again in here! Missed ya!

    • Anonymous
      January 19, 2009 at 10:05 am

      Hi Kimberly: I did not read all the posts on this thread so if this is repetitive forgive me. I do have sleep apnea and sleep with a cpap machine. The symptoms may not always be so apparent, though daytime fatigue is a major part. I used to have severe sleep problems after GBS but almost four years later I sleep very well with the cpap machine. When I had problems I would alternate ambien with valium. Now if I have a bad night I just take valium. It always works for me and if you alternate the two you don’t get adapted to it so it doesn’t work anymore. I never had to increase the dose of either. Good luck. Jeff