I am going to message my neuro nurse on Monday and frankly tell her that we have to keep trying to help with my spasticity... I feel like if they knew how bad it was they'd be throwing things at me to help me have some relief. The one Baclofen I take before bed and one in the morning is doing absolutely nothing... I stay on it only because I fear things will get worse if I come off, and I need to wean slowly.

I'll ask about Ativan and Zanaflex and see what my neuro prefers to rx. Is it ok to just go through my GP instead of my neuro though? I feel like I'm constantly bothering them there with questions. Maybe I'll talk to my GP first and see if she's comfortable prescribing instead for this.

Hi MSbelle,

You take Baclofen only 2 times a day, correct? Baclofen is usually taken 3 to 4 times a day as Baclofen is short acting. It doesn't sound like your Neurologist is explaining Baclofen or it's dosing very well

That would be okay. Some GPs are okay with prescribing symptom management medications and some are not.

Snoopy- My neuro did explain Baclofen well to me and I was up to 1 pill three times a day as recommended, and when I asked to increase the dose they helped me do that. But I couldn't stand the fatigue.

But I called my GP and she rx'd me Zanaflex. I'm starting with just 2mg before bed and I've almost completely weaned off Baclofen. FX I find some relief.

Also going to give Ampyra another try (scary!).

Just tell your doc you'd like to try it for spasticity. Tell him/her that you are on a support site with other MSers that have had luck with it.

Hi Karilann. . How are ya?

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.

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.