Haven't been around in awhile! Doing pretty well with the MS. I am still taking shots and docs say I am stable. I've been dealing with a new health issue called Eagles Syndrome. Its very rare (4% of population) and I've been trying to find a doc to treat it. I live in Michigan but I am going to Chicago in April to see if I need surgery.
Its a small bone at the base of the skull that calcifies and gets longer. That makes it interfere with nerves etc. So basically I started getting an ear ache that wouldn't go away. My neck and jaw hurt a lot and I began to get a sore throat and doctors could find nothing wrong! An ENT diagnosed it....but now I'm thinking many things I blamed on MS may actually have been Eagles Syndrome. I guess the only way to find out is to get it fixed and see what happens!

Update- I've taken Ativan now for the past few nights and had amazing sleeps!!! OMG I love it. Just what I needed.

However.

I have two young kids. One night I was up with them a few times and just wanted to cry because I was SO tired but knew I had to deal with them. My husband sleeps like the dead and that night he went to bed way too late so he was no help at all. That needs to not happen again. Planning is key!

Last night I woke up to pee and when I had a splitting headache in a very localized spot on my upper forehead (left side). I took an Aleve and two extra strength Tylenols and fell asleep with a cold cloth on my head... I fell asleep right away even though I had the headache but it concerned me a bit.

I think all Ativan does for me is allows me to sleep despite my pain, which is usually in my legs overnight. I'm going to not take it tonight to see if there's a difference. I find I'm doing better in the days since starting it as well, likely just because I'm actually sleeping which they say is kinda important ;)

MSbelle - What dose are you taking? For me, 1 mg is a bit much so I take 0.5 mg. I find that it lasts me in to the next day. Occasionally when the spasms are bad or the MS hug shows up, I take 0.5 mg in the day but I don't like to because it makes me feel sleepy, hence the reason I take it when things get bad.

ativan
 

I take .05 also. It puts me asleep just fine without knocking me out cold. I would definitely try the .05 dose. Also get yourself some magnesium. Sounds like a Band-Aid type of thing, but it may also help your spasms. I like the liquid type as I think it gets into the system faster. I get mine online at Swansonvitamins.com, but if you have a health store nearby, you can usually get it there. Try taking an hour or so before bedtime along with your Ativan

Yes I'm also taking 0.5 mg :) 1mg is too much for me as well unless I want to be really out. Before my lumbar puncture I took 2 and I was out for two days lol. And it just made me react in a really ridiculous way to the stress of the procedure instead of helping me.

Anyway, I also take magnesium (forget the brand but it's a very good one). I actually have had worsening spasticity since starting. I take LDN too and I tried going down from 4.5 mg to 3 and it just got worse doing that too so now I'm back up to 4.5. There's not much I seem to do that helps. Ativan just keeps me asleep, which is helpful.

Hello Sally!

You can ask your neuro to try dropping your dose down to .25 mg. For me, the .5 mg is a good dose. Again, I only take it at night. I only take it during the day if I'm really having a tough time with spasms and just can work them out any other way. It makes me a little sleepy but certainly stops the spasms and tremors in their tracks.

Neurotin, (gabapentin) might also help, or skelaxin. Both are meds I'm currently taking in addition to zanaflex. I have terrible spasisty that still isn't completely controlled though the most it's ever been controlled in my life :D. But I take 4mg of zanaflex in the evening at least an hour apart from my evening skelaxin dose. 800 mg of skelaxin 3x a day and 300 mg of gabapentin 2-3 times a day depending on the day (generally it's just 2x a day).

But I was on baclofen before the changes, it worked "okay" and very slowly worked less and less. I started off ten years ago on flexeril (useless stuff for me). Then came robaxin, then robaxin and zanaflex, then clozepan, then clozepan and zanaflex, back to robaxin, then robaxin and zanaflex. Then of course the baclofen, then baclofen and zanaflex, and at long last finally hitting upon my current daily medications, which for once doesn't include a narcotic in the mix for pain.

It is tough, constantly going back and forth to the doctors trying to find something that works. But where flexeril might as well be a skittle to me, I mean it did nothing, didn't even make me drowsy or hyper, it was like I didn't take anything at all... My husband has taken it and been about as animated as a bowlful of jello only gigglier.

My own neuro isn't big on prescribing symptom management medication, and our state restricts a lot of what the PCPs can prescribe. So you might consider looking for a pain management doctor if your state is the same way. Explain your issues, be it side-effects or ineffective medication, and just be willing to give things a shot. Just make sure whatever doctor you see isn't a black or white kind of doctor who thinks only one medication is right.

You might be lucky in finding one pill that does the trick, or you might find yourself taking a combination of medications. Your doctors might hit on it first try, or it could take a bit longer. Some of my issues in the length of time it took was being too stubborn and hopeless to ask to try something else. (Not having a dx for the majority of the time didn't help either).

Starznight- Wow you've been on a lot of things to try and combat this!
Re: Robaxin... like the kind you can buy at the drug store? I'd be willing to try that!

We don't have pain management clinics here I don't think ... I'm in Canada. Our GPs (PCPs) can prescribe pretty much anything for pain. However I"m sure at some point mine would want me to consult with my neuro for spasticity relief. Unfortunately he's nearly impossible to get a hold of.

Still taking .5 Ativan before bed despite my GP telling me to only take it as needed. I need it every night so I guess I'm following her instructions lol. She's concerned because you build tolerance to it and it has addictive qualities but at this point I don't care. I sleep well with it and terribly without it. It's the only symptom management med I've used that's actually helped.

MSbelle,

It is possible your PCP might not be comfortable continuing to prescribe if you are using nightly. If this happens talk to your Neurologist or even a Psychiatrist about their willingness to prescribe.