Exhausted but cannot sleep.
DJ,
I was thinking the same thing. It's so difficult to be so exhausted all the time yet also have insomnia. Everyone is asleep we are alone with our thoughts lonely, scared, depressed and it happens more than it doesn't for me. I'm at the point where I have anxiety over just trying to go to sleep. I know I'm going to just lay there in the dark and toss and turn. I try everything in my bag of tricks and sometimes it works and sometimes it doesn't. People look forward to falling into bed I dred it.
Have you found anything that helps? Does it happen to you often? I'm sorry you have to deal with it also. I wouldn't wish this on anyone.
Wendy
I am sorry that both of you have to deal with insomnia. I had been an insomniac for years. It seems like it has gotten better with my Chiari. I still wake throughout the night, but at least when I go to bed now, I fall asleep. I contribute it to all the meds that my NL has me on. The anxiety of not being abe to sleep always made it worse for me also. I wish I had an answer or a suggestion. The only things that I can say worked for me is, meditaion and yoga. They were the only things that helped me fall asleep without the help of meds. Tyenol PM and Ambien. I hated both of them but they were my bff when I had had enough and couldn't function without sleep.
Hope you both have a good day!
Wendyanne,
It is a nightly struggle for me to try and sleep. I have not found anything that works and as of yet my Neurologist has not prescribed anything for it. See him Thursday will discuss with him then.
wendyanne said:
DJ,
I was thinking the same thing. It's so difficult to be so exhausted all the time yet also have insomnia. Everyone is asleep we are alone with our thoughts lonely, scared, depressed and it happens more than it doesn't for me. I'm at the point where I have anxiety over just trying to go to sleep. I know I'm going to just lay there in the dark and toss and turn. I try everything in my bag of tricks and sometimes it works and sometimes it doesn't. People look forward to falling into bed I dred it.
Have you found anything that helps? Does it happen to you often? I'm sorry you have to deal with it also. I wouldn't wish this on anyone.
Wendy
Nicole,
Thanks for the advice. I am still coming to terms with the diagnosis and am realizing that I have struggled with it for years prior to being diagnosed. You say that is has gotten better with your Chiari. Did you have decompression surgery or are you treating symptoms with meds?
nicole said:
I am sorry that both of you have to deal with insomnia. I had been an insomniac for years. It seems like it has gotten better with my Chiari. I still wake throughout the night, but at least when I go to bed now, I fall asleep. I contribute it to all the meds that my NL has me on. The anxiety of not being abe to sleep always made it worse for me also. I wish I had an answer or a suggestion. The only things that I can say worked for me is, meditaion and yoga. They were the only things that helped me fall asleep without the help of meds. Tyenol PM and Ambien. I hated both of them but they were my bff when I had had enough and couldn't function without sleep.
Hope you both have a good day!
Chiari symptoms are often worse at night for 2 primary reasons.
1. When you lay down, your spinal fluid(there has to be some communication, even if it is slow) will flow back into your head.
2. When you are asleep, tyou do not breathe as deeply, causing mild hypercarbia(increasing carbon dioxide in the blood).
Hypercarbia + increased CSF = elevated intracranial pressure.
this phenomenon is true for everyone. however, if you have a Chiari and the tonsils get pushed a little harder, your symptoms become worse.
DJ,
I had decompression surgery this past December. I am still struggling with residual symptoms. I am being treated with several medications, primarily for cranial nerve pain and pressure headaches. It takes a long time to come to terms with this condition. I like to think that I have, but I still get overwhelmed.
DJ said:
Nicole,
Thanks for the advice. I am still coming to terms with the diagnosis and am realizing that I have struggled with it for years prior to being diagnosed. You say that is has gotten better with your Chiari. Did you have decompression surgery or are you treating symptoms with meds?
nicole said:I am sorry that both of you have to deal with insomnia. I had been an insomniac for years. It seems like it has gotten better with my Chiari. I still wake throughout the night, but at least when I go to bed now, I fall asleep. I contribute it to all the meds that my NL has me on. The anxiety of not being abe to sleep always made it worse for me also. I wish I had an answer or a suggestion. The only things that I can say worked for me is, meditaion and yoga. They were the only things that helped me fall asleep without the help of meds. Tyenol PM and Ambien. I hated both of them but they were my bff when I had had enough and couldn't function without sleep.
Hope you both have a good day!
Dr. Trumble,
I haven't gottten a chance to welcome you. So, WELCOME and thank you so much for your comments and advice. We really need to have someone on our side. It is difficult to manage this condition and even harder to get NLs and NSs that understand and know how to treat us. Thanks for your support.
Nicole
Dr. Trumble said:
Chiari symptoms are often worse at night for 2 primary reasons.
1. When you lay down, your spinal fluid(there has to be some communication, even if it is slow) will flow back into your head.
2. When you are asleep, tyou do not breathe as deeply, causing mild hypercarbia(increasing carbon dioxide in the blood).
Hypercarbia + increased CSF = elevated intracranial pressure.
this phenomenon is true for everyone. however, if you have a Chiari and the tonsils get pushed a little harder, your symptoms become worse.
Hi DJ,
I have trouble falling asleep and also staying asleep. Then I find myself falling asleep sitting up during the afternoon. I do find that using a boppy pillow does give my head and neck more support and some comfort at times. I'm recently diagnosed as well, March 2012 and am also struggling with the many life changes Chiari has come with for me. I'm trying hard to accept it and do my best to be positive, appreciate my good days and get throught the bad ones. Hope today is a good one for you,
Aveet:)
I understand your exhaustion. I have trouble sleeping, too. My neurologist put me on Ambien 10 mg for sleep. It really helped me. Now she wants to ween me off of it. She said in order to increase my Lyrica to help manage pain, I have to reduce the Ambien. She wants me off of the Ambien completely at some point. Every time I try to reduce it or stop taking it, I am right back to not sleeping. I know she is afraid I will be come addicted and maybe I have, but if something works and you are going to keep taking it, what does it matter? Aren't we all "addicted" to our longterm meds? If we are going to always need them, I don't understand the concern or why we have to quit taking what works. I get so frustrated.
1 Like
I have no trouble getting to sleep. I just wake up all through the night because of pain or tingling in my feet and hands. Usually I'm able to change positions and go back to sleep. I stay exhausted regardless. My husband says I'm never in a deep sleep, he says he can talk to me and I'll answer at any point during the night. Once or twice a week I take benadryl or a neurontin to help me sleep soundly. I don't want the sleepy side effect to wear off so I space them a few nights apart. lol
I take Trazadone & Amitriptlene at bed time. Most of the time I sleep very well. If you have worse pain at night, I have read a lot about the effect the barometric pressure has on pain. When it drops Chiari Headaches get worse.
Doctors in general worry about addiction to pain meds. I agree that if you have to take them to have relief from unrelenting pain then what difference does it make.
Carla Jo Stone said:
I understand your exhaustion. I have trouble sleeping, too. My neurologist put me on Ambien 10 mg for sleep. It really helped me. Now she wants to ween me off of it. She said in order to increase my Lyrica to help manage pain, I have to reduce the Ambien. She wants me off of the Ambien completely at some point. Every time I try to reduce it or stop taking it, I am right back to not sleeping. I know she is afraid I will be come addicted and maybe I have, but if something works and you are going to keep taking it, what does it matter? Aren't we all "addicted" to our longterm meds? If we are going to always need them, I don't understand the concern or why we have to quit taking what works. I get so frustrated.
I have noticed for years that barometric pressure causes my head to rage. Pain is worse at night.
TracyZ said:
I take Trazadone & Amitriptlene at bed time. Most of the time I sleep very well. If you have worse pain at night, I have read a lot about the effect the barometric pressure has on pain. When it drops Chiari Headaches get worse.
My sleep issue is similar to yours. I will fall to sleep but I wake up frequently. I can't remember the last time I dreamed. Don't think I ever get into REM sleep long enough for it to happen.
Anglyn said:
I have no trouble getting to sleep. I just wake up all through the night because of pain or tingling in my feet and hands. Usually I'm able to change positions and go back to sleep. I stay exhausted regardless. My husband says I'm never in a deep sleep, he says he can talk to me and I'll answer at any point during the night. Once or twice a week I take benadryl or a neurontin to help me sleep soundly. I don't want the sleepy side effect to wear off so I space them a few nights apart. lol
I thought I'd never say it...but I hate seeing the sun come up. I usually see it come up every single night. It is getting crazy and I also have anxiety over sleep. My bed is my worst enemy. Just lying on a pillow causes my already out-of-control pain to sky rocket. I am getting new pain in my right temple for compensating due to the constant left-sided head pain. I can't think and I feel at my limit.
@DJ I agree. The fact is I hate pain meds. I have been taking them for awhile now. I already weened off of Methadone and was worried about the whole addiction thing. Now I am off of it completely and subsituted it with Hydrocodone. I don't know if this was a mistake or not. I don't want to end up on tons of different type of pain meds, but I am completely useless and bedbound. I can easily get a blood clot or have a stroke but I am too worried of what these meds are doing to my stomach. And for good reason, because it is really screwing with my stomach.
So now you can see why I can't get any sleep. I try to find anything to distract me; Netflix, this group, music, artwork (which I used to draw), humor, etc etc. I haven't reached any goals of getting better - I'm only getting worse.
Good luck to everyone with their sleep - I'm being seriously sarcastic (see: humor :D).
I also, have debilitating headaches, as soon as I get up, in the morning. Sometimes, I don't sleep at all.
I had the decompression surgery in July. My Neurologist put me on a different sleeping pill, other than Ambien, because, there are a lot of times, I am up all night.
Does any of this go away, or are we always going to suffer.
Do you take anything for the headaches? I take Zomig and it really helps. It's a migrane medicine. It makes me tired but it takes the headache away for me.
Lanny Fuson-Carpenter said:
I also, have debilitating headaches, as soon as I get up, in the morning. Sometimes, I don't sleep at all.
I had the decompression surgery in July. My Neurologist put me on a different sleeping pill, other than Ambien, because, there are a lot of times, I am up all night.
Does any of this go away, or are we always going to suffer.
Excellent question, DJ! Nights are awful for me and I am also experiencing anxiety about falling asleep. I have tried all the things that others have suggested; Tylenol PM, allergy medicine, benadryl, Trazadone, Amitriptlene, Nortriptlene, melatonin, reading, not eating, turning the lights off, etc but nothing has helped so I was glad Dr. Trimble explained why nights are so hard, it gives me an answer. I always wake up with a stiff neck and headache. If I have to change positions during the night it will wake me up. I get on average about 4 hours of sleep. I have tried sleeping with pillows stacked behind me but I always fall over and wake up. I am exhausted all day long and I drive quite a bit which is a dangerous combination. One day I was so tired I pulled into a McDonald's and got a cup of coffee which I drank and promptlyand fell asleep in my car. I woke up 2 1/2 hours later! I had decompression surgery almost 2 years ago and had a 13 mm herniation and CFS was 100% blocked. Just know that there are a lot of us out there staring into the dark right along with you! Terri in MN