[Dejibo]

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?

[NeuroNixed Craig]

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.

[Erin524]

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)

[barb02]

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.

[gonnamakeit]

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

[Erin524]

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!)

[NeuroNixed Craig]

"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!

[SallyC]

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.

[Erin524]

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.

[Dejibo]

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.