Baclofen question

[Roker1176]

Does anyone take Baclofen I was told this would help with spacisity any help would be appreciated. If this helps the tightness in anybody’s legs let me know

Thanks

[AussieBob]

Well proven to be very effective and widely used across muscular issues

[Roker1176 in reply to AussieBob]

Has it helped your spacisity cuz my legs are tight like everyone with AMN

[AussieBob in reply to Roker1176]

I am unaffected but it helped my son. I also am the founder of the Leukodystrophy Resource and Research Organisation I c

[mjwellman]

I’ve found it to be mostly useful for foot jerks/restless legs that would wake me up multiple times a night - now I mostly sleep through. 10mg daily at dinner time.

[Cherie]

I haven't used it since trying it out about 12 years ago and it made my legs go like jelly.

[SongStream]

I used it for myoclonus(foot jerks) but then it lost its efficacy. I don't ever recall it helping with spasticity. Now, I stretch my hamstrings all day long (and night!) wherever I am and just live with it. I had considered the baclofen pump though.

[Roker1176 in reply to SongStream]

Yes that’s seems to be the overwhelming response legs like jelly and made there legs weak. I try and stretch as much as I can too

You forget sometimes but I’d rather exercise and stretch myself but thank you

[monkeybus]

I don't care for it one bit. It's a poor man's Gabapentin. And the doses I needed to take to provide any spasticity relief were phenomenal. Even then, I was so stoned on it, maybe I simply didn't care about the spasticity.

Did zero for my muscle spasms into the bargain. But, it's cheap and certainly worth a try

[mariagno]

I took it for 20 years. It is good for spasticity.

Just remember there is a fine line between relaxed muscles and being able to stand up.

You might also try a good stretching routine. That is what I do and I no longer take it.

[Roker1176 in reply to mariagno]

My choice is too stretch more not a fan of side effects but thank you

[quilling]

It was a life changer for me. My physical therapist contacted Dr. Eichler to prescribe. The tightness was relieved but not so high a dose that I lost the tightness which helps me stand. I have been on it for a number of years and it still helps. I know that because once the refill was screwed up and I went without it and the pain was intense.I take 20mg 3x a day. I also take gabapentin 800 mg 3x a day propranolol 10mg 2x a day for tremor. I still have tightness in my legs that is painful. My legs from the knee down feel like they weigh 300 pounds. I stand as much as I can and walk around my house with a rollator. Longer ventures wheelchair. I climb stairs by lifting a leg with an arm and placing foot on the next step and repeat. I keep moving and keep trying. Pain in my shoulder and elbows and hands from leaning on forearm crutch for years and now rollator. Fatigue is a killer. Yesterday I went upstairs to put away laundry. Hubby had taken basket up. usually it goes up one step in front of me. I was tired and looked at bed. laid down and fell asleep. Usually by 1 I am tired and some days I nap. Most days I keep on going. It takes me forever to do things. I have always been careful and been falling since 30. I will be 60 soon. I fell and broke myself 2 years ago so that sidelined me a bit but I am back difference being walker not crutch but still upright at home without braces or if I need to I use them. More than you asked for but know this disease affects all differently as does the medications.

[julie_]

I've been using 5mg 4 times per day, sometimes 5 times for around 8 years. I believe it helps my spasticity. I've been wondering what people mean when they say their legs turn to jelly. I'm not able to increase daily dosage as it makes me too sleepy, even after all these years. I did take 10mg at bedtime to help me sleep better - I don't have sleep problems but I was experiencing back pain - but every morning I woke up heavily groggy. Then the good effect stopped working so I stopped taking the extra 5mg at bedtime and I'm no longer so groggy in the mornings.

I still work out and stretch, I walk in NYC and I don't drive - however, I am beginning to take buses and ubers more often as I am fatiguing at the end of the evening. I carry a folding stick, which I use sometimes but is not always comfortable to use.

[monkeybus in reply to julie_]

If I take a lot of Gabapentin, I feel nicely stoned.

If I take a lot of Baclofen, I feel like I am melting.

I don't find Baclofen pleasant at all. Still, it works for some,and it's cheap.

[Aaron98 in reply to monkeybus]

This is so weird. I've taken baclofen, gabapentin, and Lyrica before, all at relatively high doses. None got me stoned, and none helped in any significant way with spasticity or leg spasms. I think we've talked about this before, monkey, that if these drugs don't get you stoned, then they aren't crossing the blood-brain barrier, and aren't going to help with anything else. Sound correct?

[monkeybus in reply to Aaron98]

Indeed, I remember us all discussing it. That was a while back.

I read, and I can't remember exactly, but it's something like only 30% get stoned on Gabapentin.

A lovely buzz, I don't mind telling you. Lyrica is something else. I've had hallucinations, time distortion, profound realisations.

And I'd be legal to drive a car.

Plenty of people take it, don't get all twisted. But, the only way it stops my spasms is if I'm half-way out of it. I've tried taking less, but I'm thrashing about like a fish out of water. What a nightmare.

Same with the old marijuana. Only stops the neuropathy/spasms if I'm hearing colours.

Same with the booze as well.

[julie_ in reply to monkeybus]

My brother is on gabapentin and it helps his pain. He has a lot of pain and can't do without.

I tried it once, just once, and I was so loopy in mind and body, I was afraid to leave the house!

I may try Lyrica one day.

[Equinney]

I currently on 15mg 3 times a day, it does seem to help with the spasticity.

[kevinmom]

I was just put on it for spasms and stiffness. My son has been on it for a few years

[auntiesally in reply to kevinmom]

Has it helped? This is my 2nd try with baclofen, I think it helps but feel so tired for the 1st hour of taking it? Am on 5mg 3 times a day, thanks for reading.

[kevinmom in reply to auntiesally]

I am taking 5mg in am and pm. I'm not sure it helps but my neurologist wants me to take it. He just increased it to 10mg twice daily. Haven't decided if it helps yet

[auntiesally in reply to kevinmom]

I have stopped taking it, so sleepy and felt awful, weighed up the pros and cons, decided I would prefer to feel aware and awake!

[kevinmom in reply to auntiesally]

I can't tell any difference being on it but I said I would try it for a while. I wish it would make me sleepy because I sleep horrible

[auntiesally in reply to kevinmom]

has it helped with the tremors at all? I sleep ok now, maybe because I have a couple of cans of lager?

[kevinmom in reply to auntiesally]

I really don't have tremors, I think he put me on it for stiffness, but I can't say its helping

[auntiesally in reply to kevinmom]

You need some stiffness in your legs, to helpwith your walking and balance, Baclofen is a muscle depressent.

[monkeybus in reply to auntiesally]

I used to love a few tins before bed. Stopped the pain and spasms like nothing else.

Had to stop in the end. The hangovers were crucifying me.

[auntiesally in reply to monkeybus]

Maybe dont have to many!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Coslet]

Baclofen changed my life. The spasms and leg jerks at night made sound sleep impossible... I’m up to 30mg a night. I was taking 10mg in the morning, 10mg at lunch, 10mg late afternoon and then the 30mg at night. I’ve eliminated the morning and late afternoon. Not nearly as sleepy throughout the day.