I just cant sleep!
 

I simply cant drop off into sleep at night anymore. MS SUCKS! It was 4am before I was able to drift off the edge, and it was just from exhaustion, nothing more.

I tried benedryl, xanax, ativan, and so on. nothing worked. I walked the house, played with the cats, read a book, watched TV, played with my toes...

Finally, about 4am I drifted off. I was able to sleep till 8am, but this is silly! I am tired when I go to bed, but just can fall off the edge!

Any ideas? :(

I can totally relate. However, my situation is quite a bit different. How to handle it? That is the $64K question and the answer is distinctly different for each of us. Since my near fatal brain stem stroke I get exhausted after being up from 2 to 5 hours and have to crash. But, I only tend to sleep in 2 to 4 hours blocks, if I'm lucky.

My sleep routine is no routine and a clock has no relevancy to me anymore. I use a CPAP machine and find I "fight" with it many times causing me to have to get up to simply take a break from it. Thankfully, my sleep doctor can look at the data and in his opinion since I get at least 7 hours sleep total within a 24 hour period he isn't concerned.

I am on total disability so I do not have work responsibilities. The motto in our home is, "Just go with the flow." Literally, that is what I do. I may get up at 2am, back to bed at 8am up again at 11am, crash at 2pm. No two days are the same. Even taking Clorazepam and Requip I only sleep in short blocks. Chronically sleep deprived, exhausted, with all of the associated side effects.

Reading your post I would think to not fight it and "just go with the flow." Sleep when tired, do stuff while awake until sleepy again. Hopefully you have the freedom to do that and are not still working full time.

Either way it sucks and is a really BUMMER to any social life. Wishing you better luck in finding a comfortable solution.

I tried to go to bed at 2am. Didnt fall asleep till probably close to or just after 4am.

Got woken up at 7am when my mom started doing laundry, and then again at 840 when the cleaning lady showed up. (we havent seen the cleaning lady for two months because of our houseguests. I was happy to see her...the house is dusty and dingy, so I dont totally mind that I only got about 4hrs of sleep)

My usual night is either a failed attempt at sleeping, or I'll fall asleep, only to wake up a few hours later and not be able to sleep.

When I was on the IV and oral steroids last month...my personal record was about 5 days without sleeping. (think I had cat naps during that tho, but the cat naps werent restful sleep and usually happened in my computer chair)

You are not alone. I was exhausted last night. Went to bed at 10:00 and fought with the cpap machine until 11:30. Got up and watched an episode of Chopped. It's on the Food Channel. Went back to bed and could not sleep. But I am exhausted. Finally dropped off around 4:00. Had to get up at 6:30. I can't go with the flow. I am still teaching. I am also having a problem in that every morning when I get up I am experiencing what I think are bronchial spasms for 5 to 10 minutes. I think they are allergy induced. I have been taking ambien for about 3 years and it never worked great. But now it does not seem to be working at all. None of the drugs that are supposed to be sedating seem to help me sleep.

Getting to sleep and staying asleep are problems for me too.

Most of the time I get to sleep between 1:00 and 2:00 and then wake up around 6:30 to go to the bathroom I am definitely sleep deprived and it is difficult to cope with along with the MS.

The problem is getting worse for me and I am not aware of any solution. Bummer for us all!!

gmi

Ambien worked for me when my regular doctor gave it to me back in 1996 when my insomnia originally started. (right after I had mononucleosis in early '96, and my uncle died in late '95. Stressful year)

First time I ever took Ambien, I took it full strength. Had a hallucination a little later that night. I thought I woke up, but I might have been actually asleep. I remember looking across my bedroom, and the tv was talking to me. (it was turned off) and the entire room had this eerie red light in it coming in from outside. I looked out the window and everything was on fire outside. Next thing I really remember was waking up and thinking "That was creepy!"

That's when I quit taking sleep inducing medications full strength. I always break them in half and break the half in half. I dont want to have another dream/hallucination like that one.

I had bad insomnia last year or the year before, and was given Ambien (didnt work) was given something else that starts with a "T" and that made me feel really weird and a bit jumpy during the day. (found out it was usually used as a medication for people with depression or something like that)

About the only things that help me sleep lately have been Baclofen, Flexeril or Meclizine. (two of those are muscle relaxers and one of them is an anti-emetic)

Oh, and Ativan. But, I dont like taking Ativan (anti-anxiety med) because it's addictive and I'd like to save the sleepy effects that it gives me for when I really need it. My dad said that it can sometimes it can eventually not work as well if you take it regularly. (he's an anesthetist, knows what those meds do)

I just dont like taking meds. I have been taking the baclofen pretty regularly tho...altho I'm backing off on it now. During my flare, I was popping the baclofen like they were M&M's...full strength! (had baaaaad spasticity!)

"HOLY CRAP GUYS!" Reading these posts, we are one really messed up group of people aren't we? I was told by my sleep doc to ask my PCP about Ambien CR in place of the Clorazepam at night. Last all night with no hang-over effect in the morning like the Clorazepam.

BTW, due to my wild involuntary movements and stuff my PCP originally Rx'd .5mg Clorazepam three (3) times a day. Get this! The script was for 60 pills with one refill. That was on November 1st. Because I hated the side effects, when I went back for a follow-up on December 24th, I still had TEN (10) pills left.

I asked my PCP, what does this tell you? He laughed and said, "Well, I think it is safe to say you don't have an addictive personality." LOL! The script if still for the same dosage with a years worth of refills but I still have to be having a bad day to take 1/2 of a .5mg pill.

So, on Ambien your room turns red and your TV talks to you when it's off. Wow! That could really be some fun! I have to admit, I resist taking anything possibly addictive and then I always start with the most minimal dosage available and work up if necessary.

This has turned out to be a really interesting thread. Thanks guys!

Sorry, Dej, that sucks!:(

When I'm spent and ready for some sleep. I lie down, not to sleep, but to watch something good on TV. Works almost every time. :D

I dont have an addictive personality (except for chocolate, and crocheting...and knitting...and buying yarn. Harmless addictions)


I just dont like taking meds. I forget to take them, and there are too many weird side effects to the meds that I've taken for insomnia. I'd rather just not sleep.

I have shown my MD that I dont have an addictive personality either, and he has been generous with me. I can have just about any thing I want. The problem is, they dont work!

I think I am going to cut off some meds, and see if that helps. I hate this game.

Thanks for the support. :grouphug:

Hi guys,
first time posting here.
I'm in the same insomniac group.
I recently seperated from my and have been living with my mom, who thinks my naps ruin my sleep.

After my MS Dx I struggle at night w/tossing and turning, bathroom runs, book reading..nuthin,nada..so when I can nap.I nap!
I think I'm becoming a 'block sleeper' few hours each time

I've tried lots of pills that would work a week and then stop. My anxiety seems to win out making my MS flare u some days
I like to think we're all different cause we're special
;-0

Hi MRK, welcome. :hug:

Melatonin is worth a try, is natural, and not very expensive. I didn't believe it until I tried it. It actually helps me go back to sleep after each one of my 4 or 5 trips to the bathroom a night (most of the time). I use a product called Melatonin Plus (Schiff) and take one about an hour before bedtime. I also use medical marijuana . . . some strains are good for not much else but to make you sleepy!

I also use deep breathing to music. I found that a rhythm like the swells on the ocean not only helps some with pain management, but also with relaxation.


This morning, after about 4 hours of sleep, I could not fall back to sleep, so I got up and started framing my art for the MS show this week-end. I figured that since I hurt too much to lay still, I would get busy. I actually got them both framed! Bets are on that I will collapse into bed earlier than usual tonight!

Hi Everyone!!
 

It's been a while since I've posted - I've been lurking though:)

When I did the 3 day IVSM extravaganza, I couldn't sleep at all starting the day after the last infusion and was so scared to take a sleep med. Finally after realizing I had to get back to work eventually, the doc prescribed Ambien CR. I was so scared of being "knocked out" by something but my friend assured me I'd be fine. She asked her doc, "Will I wake up if there's a fire?" and since he assured her she would, she felt better. I thought that was a great question to ask!:winky:

I had no problems with the Ambien CR but of course everyone's different. My yearly MRI is coming up and I know that if I'm encouraged to go on steroids again due to MRI findings, I'll definitely ask for the Ambien Rx to be renewed.

I'm only into my 2nd year of this so at this point the symptoms don't match the MRIs so I'm given meds based on the MRI alone..I know - it's strange.

Stay well everyone!

One of my biggest problems with an occasional sleepless night is that other popele just don't understand.

They really do not get it.

When I had the 5 days of no sleep last month from the IVSM (actually had the insomnia bad before the steroids...'roids just made it worse) My sister and b-in-law were awfully opinionated about my not being able to sleep.

She kept telling me that if I just turned off the tv that I should be able to sleep. (I tried already. Didnt work. If I'm awake, at least I want to be entertained)

Add to the insomnia that I was in some serious pain from spasticity and the most uncomfortable sensations from the numbness that I've ever felt, there was no sleeping to be had for me. (if I wasnt super stiff and spasming from the spasticity, the entire lower half of my body from just below my chest down to my feet felt like I was being burned alive)

I guess my sister is one of those people who either believe the myth that MS is painless, or she's just unable to understand that numbness is actually considered a type of pain. (her best friend also has MS. Not sure if her BFF has ever shared just how horrible MS is sometimes)

I never got all judgemental (to her face) about her problems with kidney stones, and I was appropriately sympathetic when she had an attack or two of kidney pain from kidney stones (or whatever was causing that)

I hate it when someone who has never experienced all the "fun" symptoms of MS tries to compare themselves to how you're feeling.

I try not to "one-up" my sister or my mom when they start comparing their pains to my pain. It's kind of funny to watch them do it tho. Sad funny, not "ha-ha" funny.

dej,

been there, done that.
my dr sent me to a sleep dr. they wanted a sleep and documented that i had pain (from my brain waves). that was 1 thing. they also found sleep apnea.
i had a very good dr. we tried a lot of meds too. i also tried lunesta but the only thing that worked was ambien CR. that plus some trazodone.

i don't abuse meds either. i don't sleep all thru the nite but i do get a few hrs in a row. i wake up, pee, and can fall back alseep. they said my sleep study showed i didn't fall into REM sleep at all.

lack of sleep can really affect your health. maybe you should see a specialist.
and, i had to say this, but all the activities you're doing when you can't sleep are all wrong. they're too stimulating to the brain. that's what i was told.
no computer, no tv. i think he told me i could read but turning on the light will screw up your body's melatonin levels. i actually shut off my lites about an hr before bedtime to try and get my levels up.

please let us know how you're doing with this.

Dej and all,
I am sorry we all seem to share this sleep issue.

Just wanted to stop by and welcome MRK. :) It's nice to have you join us. I am glad you feel comfortable posting right away to us, we love that. :)

I hope you enjoy your stay on NT. We are a group of loving and caring people. We listen, we post, we learn, just like you.
Nice to meet you.

As for the sleeping problems we all seem to be discussing, I must share my problem too.

I fall to sleep early in the am, like 2, 3 or 4 am., that is if I nap during the day for too long. If I set the timer for 1 or 1 1/2 hours to nap, I have no problem falling to sleep at night. The nap must be before 5 pm though.

If I go to bed earlier than that time, I wake up 2 hours later, as if it was another nap. If I go to bed real late I sleep great. Other than the waking to go the bathroom or burning legs every two hours, and then I go back to sleep. I wake very late in the morning.

I love to get up early but can't open my eyes to wake. At least I get enough hours. I think many of us have a cruddy circadian rhythm and bet It's messed up because of MS symptoms.

Welcome to the group, MRK! Nice to "meet" you. I'm sorry you have to be here, but under the circumstances, it's a great place to be!

Sorry Dej.....been there and still doing it! You all can see by the time of this posting that my days and nights are turned around. Being I live alone, it doesn't really matter and days that I have to get up, I can. My sleeping pattern sounds very much like everyone elses here.....trouble falling asleep, sleep for short periods of time, wake up, bathroom, repeat. The sun is always up when I finally go to sleep and I usually get up to stay around 4 pm.

And YES.....I agree.....people just don't GET IT!!! So what if I sleep crazy hours and sleep in my recliner???? I'd gladly change places and see how you handle my life!!! :(

Hi kats, welcome back! Dej, I hope you can find a solution but I'm afraid I have nothing but hugs to give. :) :) :) ((((Dej))))

I have joined the recliner club. I fell asleep in the dang chair, and at least I got 5 hours of sleep. not great sleep, but I will take ANY sleep.

I am just so tired. I refuse to turn on the computer at night, or I would never sleep. I try to stick to rerun TV so I already know what happens, and wont feel like I will miss out if I go to sleep. I simply NEED my TV at night for my own sanity.

Thanks for showing me I am not wadering the halls alone at night. :grouphug:

Huggs, Dej.. I have been through this recently, because I just worry and think about things when I should be sleeping. Many nights of not sleeping until early morning.
Recently I've become more relaxed about everything and my sleep habits reflect it.... I sleep a ton better now keeping busy in the day and not worrying about everything.

Always be very careful in stopping any meds your are Rx'd. Many, including those we are discussing, not only can you build a tolerance but stopping without titrating down may cause severe withdraw affects.

Check your meds to determine whether simply stopping them will not cause more problems than taking them and titrating down. If you don't wish to go through the hassle of communicating with your PCP, I've found my local Walgreen's pharmacists to be very helpful.

Learned about this the hard way. So, learn from me.

I can certainly understand the not being able to sleep.. my leg is going nuts tonight and is only worse if I lay down. Alarm for getting up for work goes off at 0345 so should be in bed now sleeping like a baby but..cant sleep if leg is jerking around

I slept last night, but it was fitful and full of wild dreams, which is worse than no sleep. I hate sleep that is too much like work. my god! bizarre.

My family is acting out again, so the weird dreams were not a surprise, but i hate that I finally got sleep and wasted it. I woke up stressed and upset.

I am being careful on my meds. I cut back to the lowest dose and then every other day and then every third day and then stopped. I am not taking many things now unless I need them. its no longer a automatic to take things to prevent things.

The copaxone also keeps me awake. When I stop taking it, I sleep. I go back on it, I dont sleep. its bad if I take it past 12 noon. So, I make sure to get that 8am shot in there.

Thanks for all the love and advice. its horrible to see I am not alone. Im sorry others are suffering too. :grouphug:

I fell asleep around 4am. I was sleeping great, the dream wasnt super weird...things were going swimmingly....

then the SID (Sanitation Improvement District) decided to dump a few thousand tons of rock into the creek that runs by the end of my yard. :eek::mad:

I thought we were having an earthquake, or that someone had hit the house a few times with a really big car. Or both. (it was really really loud!)

They're fixing the pipe that feeds water into the creek. (it was starting to fall down into the creek) It was something that has to be done, but why do they have to do the noisy stuff so early in the day? (it was almost 9am when they dumped the rock. That's early for me. It's now almost 10am)

Now they're back there with a big scoop (very loudly) arranging the rock to hold up the pipe.

I was going to get up at 1130am. I guess I wont get to sleep late(r). I'm soooo tired now. I've had really bad fatigue this past week...now I've only gotten about 4 1/2 hours of sleep. (I feel more numb when I dont get enough sleep)

I think I'll attempt to sleep some more. Hopefully they wont have to dump any more loud rocks into the creek.

OK! I want to play too. I took .025mg of Clorazepam, an Ambien CR, and earlier a strong pain pill. Did they work? "NOT!" I totaled all of 4 hours sleep last night. Thus, I humbly maintain my "Crappy" feeling.

My PCP warned me that with this type of neurological disease there really isn't too much they can do without really knocking me out. What kind of life would that be? My wife is amazed! I guess because she falls asleep just from holding a Benedryl package. LOL!

I refuse to risk further by taking any more meds or even upping the dosage, allowed by my doctor. I will simply go back to the "just go with the flow" way of life. After all, why should I even attempt to be "normal" now and at this time of my life. I've always been, "abbynormal." <BG>

It sucks to be abbynormal doesnt it?

I can hardly ever sleep when I want to. But I can fall asleep when I dont want to.

LDN is keeping me from good nights sleep to where I hardly take it. See neuro Friday. 1 ibuprofen used to do it for me. Ive been swimming in pool and figured that would do it since im so tired at night I cant do my handgripper and triceps in bed like I usually do till I pass out watching tv. WIll do that tonight even though I swam and didnt sleep for --- last night.

Exercise! I bought a under-the-desk bike/pedal thingy off amazon and its great. I have it on table since im a paraplegic and crank away. Has calorie/distance/timer too :) Magnatrainer extended range. Reccomend it to everyone its great.