I cant sleep

Kimberly,

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.

Susanne

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.

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.

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

Kimberly,
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.

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

Kimberly!
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

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!

🙁 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

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

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 — 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.

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)

–Donna

[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]

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

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

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.

[url]http://www.itsforyourlife.com/[/url]

Dawn

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

Kimberly,
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!

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).

Kristin

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.

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!
Linda

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