Question about baclofen: I know some of... - My MSAA Community

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Question about baclofen

Amore55
Amore55

I know some of you have written that you take baclofen for tremors and spacticity. My neuro just put me on it and I took it tonight for the first time. Wow! I knocked me on my kanoodle! I was asleep in about twenty minutes after taking it. I slept a couple hours and feel more like myself now, more clear headed. Did anyone else have that experience? Do you have to get used to it? I appreciate any input, because I have never taken it before. Hope all is well with everyone. Sending out love, Kelly xx

20 Replies
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Hi Kelly, CalfeeChick takes it regularity, glad that you have maybe found something, to give you relief, blessings Jimeka 🦋 🤗

Wow! It may depend on the dose. I’ve been on it so long I really don’t remember. It was one of the first meds I ever took, nearly 18 years now.

I take 35 mg spread through the day, if that gives you a reference. I know some people take a lot more. I’m allowed up to 60 mg and can self adjust it.

I’m always tired so I don’t know if it’s baclofen, other meds or just the MS that causes it. I do know it definitely helps with my spasticity. I’d say give it some time and see how you do.

CalfeeChick
CalfeeChickCommunityAmbassador in reply to StacyHayward

sounds like me too Stacy. My doc understands that some days are much worse than others and trusts me not to over-do it.

Amore55, I have a very low tolerance for most MS drugs. Baclofen made me feel drunk and I walked that way, too! Hope it will be a good choice for you.

Amore55 I have been on Baclofen since 2007 I believe. I take 20mg every 4-6 hours for spasticity/pain in my legs. At my next Neuro appt, I am going to see if I can get it upped because that dose isn't really helping anymore. I don't remember if I started at a lower dose and worked my way up or if I had to get used to it because it has been so long. I did just look up side effects on drugs.com and sleepiness is a side effect in the beginning so it may just take time for your body to get used to it.

Good luck. Keep us updated.

Jessie

CalfeeChick
CalfeeChickCommunityAmbassador in reply to bxrmom

I have appt next month and am also thinking about upping the Baclofen dose. That or maybe it's time for MS meds.

bxrmom
bxrmom in reply to CalfeeChick

Please keep us updated CalfeeChick after your appointment.

Jessie

I took copaxon shots every day for 3 years, it destroyed my legs, it made dents and knots all over my legs, like it ate my muscles up, I stopped and now my legs hurt SO BAD! Then the Neuro wanted to put me on a med that would make hair fall out and kills the liver. I'm not you, but I wouldn't be to quick to start MS drugs. I opted out of any MS drugs, but I also have severe advanced MS in a motorized wheelchair. Still I will not take MS meds. I am on high doses of Baclofen and Gabapentin ( cant spell well) pluss on high doses of pain meds, 15mg of oxycodone 3x a day and I am still in screaming pain inside. Everyone is different, MS drugs work out for many, I just want to keep my hair and hopefully my liver, my organs are shutting down. I spasm uncontrollably and my body jerks constantly, even my vocal cord is parilized so I lost my voice 4 years ago. I'm so tired all the time, I can't sleep because every time I move I wake up because of pain. I go to a Neurosurgeon soon to see if they can do something to my spinal cord as both hips and legs ( sciatica down both legs and really hurts, both calves and feet hurt.) Best of luck to you when you start MS drugs!😇 Angels watching over you!💜

Qt314grl
Qt314grl in reply to bxrmom

You might want to think about adding in Zanaflex if the baclofen is maxed out.

bxrmom
bxrmom in reply to Qt314grl

My Neuro added Zanaflex when Baclofen alone wasn't helping and it made a world of difference for me CalfeeChick

CalfeeChick
CalfeeChickCommunityAmbassador

Hi Amore55 Good to see you, Kelly. I take 10 Mg as follows, 2 tabs mid-morning along with my Modafinil and the same of both mid-afternoon. I've had occasion to take a dose about 8:30PM when I'm already tired and yes, it will knock me out for a few hours, but it does help with the spasticity in my legs. Also, with doctors okay to do this, if my legs are bad at night so bad that it wakes me, I will take an extra 2 tablets. As I'm typing this, my toes feel as though there are wires in them pulling my toes straight out and across each other. Very uncomfortable! The Charlie Horses (spasms) were very painful compared to this discomfort.

Hi yes for me that happened at first i thought om lord this isnt gonna work...i.take 10 mg n morning if im havn issues i will take at nite bit now its really been a great life saver for me..hope it works for you xo

hi, have been taken Baclofen for 20 years. increased dosage slowly thru the years, very thankful to have it. if I forget to take it I'm reminded promptly with strong tugs and then full blown painful spasms down my left side. So, it works for me.it can make me sleepy or not as focused so I take lighter dose when I'm going to be driving

I’ve had a Baclofen pump for six years and am getting a dose into the spinal fluid hourly. This device prevents the Baclofen getting into the blood that travels to the brain so the brain fog and tiredness are not an issue. The pump works great for me.

Hi Kelly, I take baclofen when I’m really desperate. It makes me so tired that it’s hard to function. Maybe I should try and get use to it. It sure works great for my spasms. I wish you good luck with it, as it seems to be a very safe drug. 🙏 Linda

Amore55 When I started on it I slept really good. Then my body adjusted to it and I was back to my normal patterns. Now I have started taking them 3x a day. They don't make me sleepy like they did at first. Your body will adjust.

Amore55: I see many people have already replied. I take 50mg spaced through the day in 10 mg doses. I couldn't handle the spasms without it. I even need Valium(diazepam) once or twice a day. My Dr. talked to me about a pump. Hope not to get to that point. Wishing you the best. God's Peace

Hello, I take it every 6hrs for my stiffness .works good for me.

Hidden
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when I first started had very similar experience, first day last dose climbing stair completely lost balance and co-ordination almost fell caught myself with hand rail, quickly developed tolerance though, and hugely helpful with spasticity. Legs almost feel like a real persons now.

Hi Kelly,

I’m the same as many here, it really helps the Charlie-horse type muscle spasms in my feet and calves. I take 10mg twice per day, but only on the days that I’m having those muscle cramps, because it KNOCKS ME OUT. I have fallen asleep at the movies with un-chewed popcorn in my mouth!

I’m guessing I ”should” be taking it daily, but I don’t want to... That’s a slippery slope. Two years ago I was taking Baclofen every day, so I needed Modafanil (Provigil) to stay awake during the day, so I needed Klonopin to fall asleep at night, so ya, the dreaded snowball effect!

You’d probably acclimate if you took it every day, but then that also means eventually upping the dose, and then you’d always be chasing an effective dose that doesn’t turn you into Sleeping Beauty! That’s just my opinion from my own personal experience. I know others really do need it every day due to their persistent spasms.

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