Do you also hate Baclofen?

[Schmutz]

I was just diagnosed last month and I got a prescription for Baclofen to help with restless leg syndrome. I took it for 8 days and I was totally wiped out. 10 mg. were taken at night, but I stopped taking it because it made me so tired I couldn't function.

I stopped taking it Monday but I'm still pooped. Since "excessive daytime sleepiness" was always a symptom of my disease (it took eleven years for me to be diagnosed) I can't understand why I was told to take this drug at all.

'Sorry to be complaining - but I briefly felt that being diagnosed might be a good thing.

 

[Nighthawk]

I didn't know Baclofen was being prescribed for the restless legs syndrome.

My Neurologist prescribed it to me but, for the spasticity of the legs.
Although, he warned me that it could make me feel like "spaghetti" and become so weak that I might not be able to stand and walk while under the effects of the drug.
That statement alone scared me away and I didn't want try it.

NH

 

[AKmom]

I started taking it in 2010. At first I took the prescribed amount which was 20mg 3x a day. I kept falling asleep and was staggering worse than normal. So I cut back to just one every night with a very occassional afternoon dose if I was having a bad Spastic day. I now take it 3x a day because the spasticity has gotten much worse, to the point of me having to be in a power wheelchair 98% of the time. I do not feel as sleepy as I did at the beginning. Although I need to lay down to snooze in the afternoon now. Considering that when I am too Spastic that I cannot walk, the baclofen has kept me walking longer than had I not taken it. I am much more comfortable when I take it because spasticity is even worse than feeling of fatigue. Which if you think about it, fatigue is something I have felt with the whole time too. Most likely because the spasticity is like a work out!

So its either one or the other. Just gotta do what works for you!

 

[olly]

I have been on baclofen for 13yrs and personally it has done wonders for me and kept me out of a wheelchair for so long.
Initially i was on 20mgx3 a day a bit more on bad days but gradually over the years i am down to just a night dose and on bad days.
I have more weakness now which cancels out the effects of spasticity thats why i need less.

We are all different in how meds effect us,you just need to do some tweeking to find out what works for you.
At first baclofen can have side effects but you need to stick with it,these will abait and then you will feel the benefit.

Not sure how baclofen can help RLS but a friend of mine has had it for spasms with fibromyalgia.

 

[AKmom]

Caroline, isn't it interesting how the spasticity is slightly different in each of us. I too have become weaker, yet my spasticity remains and has increased it seems, or I have grown more intolerant of it. It didn't seem to bother me as much when I could stand and still get around with a cane, but now that I cannot even get around much because of weakness and having to fight with spasticity to move the legs, which causes me to loose my breath and fatigue, the spasticity is more of a nusense.

I wish I was rich and had a good insurance (if good insurance was in existence anymore), then I would get some good pt to help with loosening things up for better movement. But I won't complain because hubby John does the best he can helping with the stretches and massages.

 

[olly]

Well,on a morning and after sitting for 20 minutes i'm as stiff as a board.
Its still there and i'm still in the same pain.
I do try to keep active as possible....if you can call it active compared to normal people..
Not sounding critical i hope joyce but maybe it would help if you tried walking a tiny bit.
The bulbar spasms have been the main problem for several years now so maybe thats giving my leg spasticity a wee brake..

 

[olly]

Sorry,just doing tea and had to log back in.

What i mean is that imobility would increase the symptoms of spaticity.
I can not travel even a car journey for 60-90minutes would leave me totally crippled with spasticity and make it difficult to walk.
I tend to sit for 20-30 minutes then do something for the same time then sit again ...so on and so on to try to even everything out.
Does that make sense?

 

[Schmutz]

Thanks for all the replies! I should be grateful that spasticity isn't more problematic for me. I feel that the PLS is no longer just affecting my legs. My hands don't do what I want them to. Typing is becoming more of a challenge, and I'm sick of feeling useless!

I've managed to keep a relatively positive outlook while dealing with this monster but this weekend it's not working. The exacerbated sleepiness from the residue (I guess) of the Baclofen just made me furious. Thanks for letting me know I'm not alone!

'Glad I found this site.

 

[olly]

schmutz,its a case of listening to your body......
8 days is not long enough to get over any side effects or feel any benefit......it can take upto 6-8wks of taking baclofen for it to start having any effect. You should really give it another go if you feel you need it. Word of warning you should never abruptly stop taking baclofen as it can make spasms worse or even cause seizures.

I type with one finger,my fine motor movements are shot and i am ataxic.
Had to give up a few hobbies like embroidery but still try and do a bit of card making when i can.
I used to just sound drunk when tired but these days its ofton throughout the day.

IMPROVISE,IMPROVISE,IMPROVISE.....Thats what you have to do.

Oh sorry,a very warm welcome to the forum.

 

[AKmom]

I agree that baclofen takes time to work efficiently.

Caroline, I have not given up on walking. I still stand when I cook and walk around in the house, although falling has increased. I just use my pwc when out of the house now. In my business I have to be out and about more, but it has come to the point that I just cannot function outside the house without the pwc. I too am really Spastic when I am sitting for long periods, but when standing or walking too much can cause excruciating in pain and weakness that causes me to fall.

Schmutz... Give it a little longer. Try half a tablet instead of a whole one. Maybe you are more sensitive to new meds. Just a thought. Welcome to the forum!

 

[old dog]

I take 10 mg of baclofen in the morning to relieve spasticity--doesn't make me excessively sleepy. Baclofen makes a person somewhat weak until the body adjusts. I take 2 mg of tzanidine at night. It is the medication that relieves restless leg syndrome for me.

 

[olly]

Joyce i think were really the same when it comes down to it and as to function.
I go out once or twice a week for an hour so home majority of time,if i was out alot more then i would need a pwc.
Maybe its that after 14yrs i just dont notice as much and that the bulbar problems are my main pain in the butt.
I was'nt getting at you sweetie,love ya too much.

 

[AKmom]

Lol...Caroline, I love you too dear! I think I felt the need to defend that I do still walk because I have been getting a lot of grief from my bro in law who is a chiropractor and thinks he is Gods gift to all healings! So now my husband kinda goes back and forth on what he thinks I can do, to what I can actually do, to what my bro in law says. He flip flops because he wants me back to being my old athletic self. I could only wish!

 

[billbell52]

When I used a cane and then walker I found Baclofen made my legs too rubbery and I felt more prone to falling. I am now in a scooter or PWC so spasticity is not a problem. I do take 40mg just before bedtime. I definitely reduces nighttime cramping.

 

[calypso45]

I have tried taking Baclofen on and off over the years of my progression. My question to you that take Baclofen is how does it help you? Do you notice it takes away some of the pain? Or does it allow you to walk better or stand longer? How does it help and do you notice a difference when it is time to take your next dose? I know everyone is different but I am interested how the drug helps you.Thanks
Calypso