Baclofen fear...
 

I didn't know whether to start a new thread or not; sorry if I'm duplicating some of it.

This morning I started my first teeny dose of baclofen. WHY am I so TERRIFIED about starting this med?? I've taken oodles of assorted meds in my lifetime, some short- and some long-term, but I've never felt like this. I've taken meds with a lot scarier potential side effects. I wasn't this scared about starting the stupid Copaxone. What's the deal?? :confused:

I've got myself worked up into such a state that I'm not going to be able to tell what's the baclofen and what's my freaking out about it. Grrrr. I know I'm doing it, and I can't make myself stop.

Last night during the crazy hours, I even caught myself thinking, "Maybe my fear about this med is a sign that I shouldn't take it." A sign? A SIGN? Really???

Right there with you B2Y, as I too had similar reservation...still do as generally I try to stay away from medication. I've been messing with it for the last two or three weeks. Some times take it, some times not, even though I know that is not is how this medication is to be used because there can be withdrawl symptoms. Lately I've only been taking it at night to assist with sleep

Taking it before bed has decreased night spasms and improved the ability to sleep sometimes, but the sleepiniess and fatigue/weakness seems to carry over into the next day which I don't care for. On the other hand, improved sleep has reduced cognitive impairment so that is the upside.

This med seems to have a variety of effects for each individual, so you might try it to see if it helps with your symptoms.

I had absolutely no side effects from it. I was taking 6 pills (60 mg a day). It did not help at all with my spasticity so that is why I stopped it. I should add that very few medications that seem to cause sleepiness in a lot of people affect me.

What about the baclofen makes you nervous?

I've been taking it for months. I'm working my way down off of it now. (I've been hovering at 1/2 a pill for a few weeks now. Down from the two or three pills that I was taking a day) Since getting down to the 1/2 pill I'm taking now, my spasticity has increased, so I'm trying to do stretching exercises to try to help with that. The exercise might be working...maybe.

I take one pill before I go to bed. I probably should take it during the day because I've been having some pain in my right hand but just deal with it. I don't want to be sleepy all day. Alleve takes care of whatever pain I have during the day.

I've not noticed any side effects from the Baclofen. It's a pretty common med for folks with MS to take.

I've gotten a mild headache some times but that could be my allergies. Who knows.....

B2Y, try saying a prayer before taking your meds. Ask for peace of mind and calmness. Baclofen might just help you once you take it a few times. :hug:

Hi Blessings. :)

I have been on Clonazepam (Klonipin) for decades for movement disorders (3) associated w MS. 6 months ago, an MS Neuro sitting in for mine, told me that Klonipin does nothing- it's just like "water." Hmmmm. And she wrote a script for Baclofen 10 mg TID. I had no idea what to do w it.

Since my muscles are tight at night, I added one 10mg at bedtime and that seems to help. I haven't noticed any side effects from it. Well, perhaps I sleep better.

Best to you today,
ANN

Thanks for all the support. :)

I still have no idea why I'm fixated on this. Trying to calm down, focus on common sense, pray for some peace, and get over myself.

Maybe I'm just at the tipping point, med-wise. Ya know?

Blessings,

Sometimes when someone is "fixated" on something they are really avoiding something else.

Is there an "elephant" in your house?
ANN

I took ten MG last night. I wake up a tiny bit hung over, but you get used to it if you are on it long term. I only take one occasionally. it really knocked down the MS hug.

Sometimes its a matter of stubbornness that we just dont want to add one more pill on top of the pharmacy we already take. I am tired of pills, and I want OFF them. I dont want them adding to my list. The kind MD says "look you are sick, you need the meds, so...take your pill please!" UGH! I am supposed to take baclofen everyday, but so far I only take it occasionally.

B2Y, I took it for a while but discontinued..like Barb it didn't help the spasticity one lick. I was taking gobs of zanaflex but was taken off last month to see if it affected heart stuff and blood pressure, as well as sleepiness.

Maybe your fear about it is kind of what I get...it's a kink in my logical thinking process that makes me hyperfocus and obsess...do you think that might be it, or are you just burned out with the amount of meds?

Anyway, hugs as you work through this latest challenge...:hug:

I think it is interesting that some of you take baclofen occasionally. My neuro cautioned against doing that.

I've read, too, that you should take it consistently as directed. But I don't need it three times a day. I take it once before bed every night and I guess that's "consistent" enough for my metabolism and all that I need right now. I haven't had any side effects at all. It does help quiet my leg spasms so I can get to sleep.

I'm pondering some of your responses, and thinking my problem could be any or ALL of the things you've mentioned!!

Oh, and I also have been led to believe that it isn't something that can be taken "as needed" like ativan, for example. Hmmm.

O.o really? I never heard that. I wonder if I am doing more harm than good to take one now and again. hmm...:confused:

Docs have always said that Liorisel/Baclefin is a med that must build up slowly in your system to work properly. Some peeps are taking very high MGs.:eek:

I started (years ago) at 5 mg three times per day and worked up to 30mg three times per day. When my spasticity was pretty much gone, I came down off of it. Afew years later, with another flare, it made me dizzy and sick, so I stopped it and never tried it again.

I don't know if the fact that the first time, I was on Liorisel (the brand name) and the second time on Baclefin (the generic)???

My only bad thing with B is that I didn't start taking it sooner!!

I had it in my head that needing to take it meant that I was in really bad shape. I avoided it for years. I take only 10 mg at night and it has been a miracle.
adding that it has enhanced the benefits of stretching and powerplate exercise.
I was in bad shape and the drug has made it better.

I hope you get relief too.

I think I was at the maximum dosage, but as I said it did not really bother me. It just did not help.

I don't know if you are still trying to take it or not because I just saw this, but I couldn't function without baclofen. I take 80 mg per day. I take 4 of the 10 mg pills spaced out during the day and 4 at night before bed (to prevent the pretzel sleeping position).

My neuro also added gabapentin and clonazepam when the baclofen started to be less effective. I've been at the 80 mg dosage for a long time and am quite used to it. When you take baclofen occasionally, it isn't a problem, but you might notice side effects more than if you take it consistently and allow your body to adjust to it.

I'm not sure if it has to build up or not to be effective, but one thing I noticed is that once I was on it awhile, I found I had more energy because my muscles weren't fighting with each other so much. I was also sleeping better with less spasticity.

It took me a few weeks of titrating up when I first started it to get rid of the side effects. Back then, I was on 30 or 40 mg per day. The only issue with baclofen and quitting it is if you on on 30 or more mg per day consistently for a period of time. Then, you have to slowly titrate back down or risk having a seizure. If you are taking 5 or 10 mg here or there, that isn't an issue to worry about.

I hope you give it a try or if you already did that you had success with it.

I started not this week, but last Monday, with 1/2 dose (5 mg) twice a day. I did that for a week. This Monday I started taking a third 5 mg dose midday. The neuro prescribed starting with 10 mg twice a day for three days, then 10 mg three times, etc.

I was nervous about starting on the full dose so quickly, so re-prescribed myself (yes, I know). I wanted to wait and see if I got drowsy or weak--we've got a couple of appointments that I HAVE to drive to.

It seems to be making a difference at night, not so much during the day. If I had pretzel spasms, I'd be cranking it right up. I'm having muscle tightness, pain, and what many of you would call "mild" spasms. I'm a sissy, so I don't call them mild. :rolleyes: