Any experience with a baclofen pump?

[bsc78]

At night, I'm having severe clonus---my foot jerks upwards violently. It is starting to affect my quality of life. The hefty doses of clonazepam and baclofen are no longer working. Two neurologists have suggested a baclofen pump.

I'd like to hear about anyone's experience with one.

Thanks

[SongStream]

Go to the search field AMN Easier and input "baclofen pump" and you will find related posts and experiences. I have also read suggestions to have the spinal tap baclofen trial and see if it works before considering a baclofen pump.

[bsc78 in reply to SongStream]

Thank you! Should have done that first, I suppose.

[SongStream]

We're all here as a community to help each other. You might also try other online AMN forums. Inspire.com had a lot of baclofen pump users from all kinds of health conditions including AMN. If you decide to go with the pump, please let us know. I am trying to get off the oral baclofen because of its addictive nature and horrible withdraws. Presently, I am reducing 10 mg a week from 60-70mg. I heard that Gabapentin (which I take for nerve pain) can help with the spasms, too. I shall soon see.

[monkeybus in reply to SongStream]

Baclofen, evil stuff (when it hits your brain).

For me, the sole side-effect of Gabapentin/Lyrica is getting pleasantly stoned.

The Benzodiazapine+Baclofen combo is just plain awful.

Cheap.

If you have decent insurance, get some Lyrica. Worth it's weight in gold.

[bsc78 in reply to monkeybus]

Why, in your opinion, is Baclofen "evil stuff"? And why is the addition of clonazepam "plain awful"?

[monkeybus in reply to bsc78]

It's just that the amount of Baclofen I need to stop spasms just makes me feel terrible. Also, in the morning, the colour and amount of my urine has to be seen to be believed. Likely not kind on the kidneys.

Clonazepam/Diazepam/whatever, I just find to be awful, soporific stuff.

Having fatigue doesn't help. I don't need anything to help me feel tired.

But, that's just me. Whatever works, works.

I still have plenty of Baclofen stashed away, if I had to, I'd take it. I'm seeing about a Baclofen pump in January. You can get topical, Baclofen creams from some compounding pharmacies. Keep meaning to try some/make some.

Also, Benzo's do nothing for my spasms. I just lie there, shattered, twitching away like crazy. Soon as I drift off to sleep, the spasms wake me right back up again.

[monkeybus]

The big spinal injection, Gablofen. Have that first.

Is your foot-jerk clonus, or a spasm?

I'm seeing about a pump just after Xmas.