5 replies to this topic

[Claire3]

Can anyone give me some advice ? I have a T1/2 level injury and a baclofen pump. A few months ago pump dosage increased to 1750 mg per day as my spasms were so difficult to control. As the baclofen increased i became very confused and started to have 'episodes' when for 3 or 4 hours I could not remember anything and I became anxious as I did not know what I was supposed to be doing e.g what day it was etc. Gradually my overall memory became worse and I could not remember things from the past or last week or even from a few minutes ago. Neurologist reckoned my brain was bathed in baclofen and suggested I had a baclofen holiday. Baclofen dose reduced by 10 percent a week and by the time I go to around 1000 memory slightly improved.
Now on dose of 500 per day but spasms are unmanageable and memory still rubbish. Still have episodes but they last only 45 minutes but happen once every 10 days. Not sure what to do ? Increase dose and face a worse memory and be unable to drive or function very well or face a life when I can do very little because of the spasms. Any advice welcome.
Claire

[N Chapman]

Hi Clare, I am c4 5, I also have a b/pump but my dosage is 125 MSG daily it does sound to me you are taking far too much.

[Tetracyclone]

Clare,
Your experience is confusing as the pump is supposed to create a situation wherein much less dosage is necessary. For whatever reason, the pump is not working correctly, for you?
Is this a possibility?
Please describe the other drugs you tried pre-pump, and what was your experience with them.

When did you get the pump? Was high dosage always necessary?

[megatrig]

I'm no expert!

Thought baclofen travelled down the canal? as a rule!

I think it can surpress breathing at high levels. As in high mg levels.

Difficult one for you. I have a pump that isn't working out! When I increase the dose spasm relaxes but this affects BP!

Has your spinal consultant that put the pump in experienced this before?

I'm on 550mg at the moment. Doesn't seem to effect memory or have any neurolgical effect as such. I went up to 1100mg.

Sorry I can't be more helpful.


Have you looked at botox injections to "legs" if that is the source of spasm?

[Claire3]

Tetracyclone, on 23 January 2012 - 01:46 PM, said:

Clare,
Your experience is confusing as the pump is supposed to create a situation wherein much less dosage is necessary. For whatever reason, the pump is not working correctly, for you?
Is this a possibility?
Please describe the other drugs you tried pre-pump, and what was your experience with them.

When did you get the pump? Was high dosage always necessary?

I have had the pump for 2 years. I was previously on very high dose of oral baclofen so I was an ideal candidate for a pump. Pump has been checked and so has the catheter to make sure it is delivering to the spine. They will check the pump again in March and I will have a bolus injection under X-ray guidance.

Any more ideas ? Thanks

megatrig, on 23 January 2012 - 03:50 PM, said:

I'm no expert!

Thought baclofen travelled down the canal? as a rule!

I think it can surpress breathing at high levels. As in high mg levels.

Difficult one for you. I have a pump that isn't working out! When I increase the dose spasm relaxes but this affects BP!

Has your spinal consultant that put the pump in experienced this before?

I'm on 550mg at the moment. Doesn't seem to effect memory or have any neurolgical effect as such. I went up to 1100mg.

Sorry I can't be more helpful.


Have you looked at botox injections to "legs" if that is the source of spasm?

Yes tried Botox injections as well. My consultants are experienced and based at RNOH in Stanmore.
Seems like this is a rare side effect.

[darryl]

Claire3, on 23 January 2012 - 09:48 AM, said:

Can anyone give me some advice ? I have a T1/2 level injury and a baclofen pump. A few months ago pump dosage increased to 1750 mg per day as my spasms were so difficult to control. As the baclofen increased i became very confused and started to have 'episodes' when for 3 or 4 hours I could not remember anything and I became anxious as I did not know what I was supposed to be doing e.g what day it was etc. Gradually my overall memory became worse and I could not remember things from the past or last week or even from a few minutes ago. Neurologist reckoned my brain was bathed in baclofen and suggested I had a baclofen holiday. Baclofen dose reduced by 10 percent a week and by the time I go to around 1000 memory slightly improved.
Now on dose of 500 per day but spasms are unmanageable and memory still rubbish. Still have episodes but they last only 45 minutes but happen once every 10 days. Not sure what to do ? Increase dose and face a worse memory and be unable to drive or function very well or face a life when I can do very little because of the spasms. Any advice welcome.
Claire

Thats a very high dose from the lit I've read, you may find this Medtronic PDF article helpfull >

Compounded Intrathecal Baclofen: Results of a Potency Testing Program (found at)

http://professional....apers/index.htm


dk