Sandy, I have been taking baclofen for years for my Cerebral Palsy and it helps...they upped my dose when I got RSD...I went off of it for a short time and I found out that I could never do that again. Watch your daughter carefully..at the beginning she will feel really sleepy and may have goofy hallucinations, but they go away..hope this helps

I have been on Baclofen 20mg four times a day for several years. I too tried to come off of it... that was a big mistake as the cramping and spasms got worse.

It does make me sleepy and the dreams I have are very weird.

But the Baclofen works.

I hope it works for your daughter... just keep an eye on her.


Abbie

Abbie- How much do you take? I tried getting on it before and it gave me twangs in my head and insomnia. But the spasms in my back are getting horrible and I don't know what to do! I have muslce wasting in arms legs and back

Debbie

I take 20mg four times a day. I've been at this level for a few years.

I too had the twangs and insomnia... I found if I ate something light when I take the baclofen this lessened and is now gone. (now it makes me sleepy and weird dreams)

I won't go a day now without the Baclofen... the muscle cramps, spasms, and just plain ole muscle wasting is not fun.

I wish you the best.

Abbie

I'm on the same dose of Baclofen that Abbie is on - for back spasms.
Being on this med has made a good difference, but I still get breakthru, even if I simply stand at the sink doing dishes.
So far tho, Baclofen has worked better than anything else I've tried. Adding a low dose of klonopin or xanax seems to help when the breakthru's come.

I hope your daughter will get some relief!

Rae

I was wondering if anyone else has noticed short-term memory issues while on Baclofen? I vaguely recall reading that someone mentioned this awhile back. This is something I've noticed, but not certain it's because of this med, as I had started a few new meds at the same time.

Hi. That might have been me. I tried it out when I was still working as bankruptcy litigator, and discontinued it after a day and a half because my job required that I might have to remember the details of a phone call I had with opposing counsel two weeks earlier when at the time it wasn't important enough to but in my notes, but later became an issue on which I would have to file a sworn declaration with the court. And it was obvious that Baclofen wasn't playing along.

But once I was no longer working I went on it, where my neurologist advised me that it was the best drug available for CNS spasms and keeping my short-term memory in tip top shape was no longer at the top of my list.

That said even though my shrink put me on neuro-protective drugs (Namenda and Razadyne) as soon as I was diagnosed - 4 months into this - eventually the neurocognitive ravages of CRPS overcame whatever barriers we had erected, on account of which the effects of Baclofen became a drop in the bucket, as my memory (along with what few organizations skills I had) got progressively worse over time, while my Baclofen dose remained constant, at 50 mg/day. See, Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, online text @ http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf:

Abstract
We sought to elucidate the existence of neuropsychological subtypes in Complex Regional Pain Syndrome (CRPS). One hundred thirty seven patients with CRPS were administered tests that assess executive control, naming/lexical retrieval, and declarative memory. A 2-step cluster analysis that does not require any a priori specification regarding the number of clusters, classified patients into three groups. Group 1 obtained scores that were in the average range on all tests (n = 48; normal CRSP group). Group 2 (n = 58; dysexecutive CRSP group) presented with mild impairment or statistically low average test performance on working memory/verbal fluency tests. Group 3 (n = 31; global CRSP group) produced scores in the statistically low average/borderline range on all tests with particularly reduced scores on naming/declarative memory tests. Between-group analyses found that the CRPS group 1 obtained higher scores than CRPS groups 2 and 3 on all tests. However, groups 2 and 3 were equally impaired on executive tests. CRPS group 3 was impaired on tests of naming/memory tests compared to the other groups. Significant neuropsychological deficits are present in 65% of patients, with many patients presenting with elements of a dysexecutive syndrome and some patients presenting with global cognitive impairment.

Comment in J Int Neuropsychol Soc. 2010 Nov;16(6):1151-2; author reply 1153-4.

PMID: 20298641 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20298641

But take heart, at least according to that study, a CRPS/RSD patient has a 35% chance of having no cognitive impairment, a 42% chance of losing only some of her/his "executive functions" (largely organizational skills), and only a 23% chance of having a decline in memory and executive functioning: "group 3" for some reason comes as a bundled package. As measured by before and after psychological testing (administered by the same clinical psychologist) I just happened to draw the short straw.

Odds are, you'll be luckier.

Mike