NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Baclofen (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/161574-baclofen.html)

Has anyone had any results with Baclofen? Has it helped your pain or spasms? The doctor prescribed it for my daughter.

Thanks,
Sandy

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.

:hug:
Abbie

Quote:

Originally Posted by Abbie (Post 829676)

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.
:hug:
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
:hug:

Short term memory?

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.

[QUOTE=SandyS;829612]Has anyone had any results with Baclofen? Has it helped your pain or spasms? The doctor prescribed it for my daugh

I take Soma instead, Baclofen did not touch my tight muscles after a bac auto wreck in 1990, I still take it.

Quote:

Originally Posted by Rrae (Post 829710)

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

Mike,

Is CRPS known to have an effect on adrenal hormones (particularly pregnenolone)? I ask because pregnenolone, in recent years, has been touted for improving/restoring cognitive function, though no credible studies have yet supported this claim. I would not recommend/suggest anyone try it without being deficient in the hormone, and without having their doctors' blessings.

I've been taking it because I am deficient, and have my doctor's ok, and it has measurably improved my short-term memory and cognitive function. (Test scores before/after improved 20-25%).

Just a "FWIW"....

Doc

Quote:

Originally Posted by Dr. Smith (Post 829829)

Good question. While there is a relationship between the adrenal hormones and CRPS, I believe it runs in the opposite direction of what you're thinking about.

Stress triggers the release of cortisol which in turn results in selective vasoconstriction/dilation to empower those muscles necessary to propel the body to either move quickly out of the way of danger or do whatever what has to be done. Sort of like Powdermilk Biscuits. In any event, it's the vasoconstriction, on top of what's already going on with the CRPS, that can create immediate pain spikes under emotionally stressful conditions. See, generally, Regulation of peripheral blood flow in complex regional pain syndrome: clinical implication for symptomatic relief and pain management, Groeneweg G, Huygen FJ, Coderre TJ, Zijlstra FJ, BMC Musculoskelet Disord. 2009 Sep 23;10:116, online text @ http://www.biomedcentral.com/content...474-10-116.pdf

But in terms of whether CRPS can alter the production of pregnenolone, when I ran a PubMed search under "pregnenolone CRPS" I came up with zero hits. Sorry I can't be more helpful.

Mike

Quote:

Originally Posted by fmichael (Post 829850)

Sorry I can't be more helpful.

Actually, I was hoping the info might be of help to you. It really boils down to whether one is deficient or not, and if it's standard/common to be tested...

Doc

Quote:

Originally Posted by fmichael (Post 829759)

Mike

Yes! It WAS you, Mike - Thank you!
I was concerned enuf to bring this up to my shrink and she too had mentioned Namenda.
The memory shortage has improved since then (for whatever reason), so I haven't pursued the Namenda as of yet.

I appreciate your feedback and references

Rae
:grouphug:

Quote:

Originally Posted by Dr. Smith (Post 829862)

Actually, I was hoping the info might be of help to you. It really boils down to whether one is deficient or not, and if it's standard/common to be tested...

Doc

Hi. I just ran a PubMed search for "pregnenolone cognitive," which produced 44 hits. The best of which was Neurosteroids: deficient cognitive performance in aged rats depends on low pregnenolone sulfate levels in the hippocampus, Vallée M, Mayo W, Darnaudéry M et al, Proc Natl Acad Sci U S A. 1997 Dec 23;94(26):14865-70 online text @ http://www.pnas.org/content/94/26/14865.full.pdf but that was a murine (rat) study and when I pulled up the 135 "related" studies or review articles, they appear to be entirely rat-based as well!

Do you know of any human studies out there?

Who supervised your testing and/or treatment? Are you currently being followed by a neuro-endocrinologist?

And when you say that "it has measurably improved my short-term memory and cognitive function . . . (Test scores before/after improved 20-25%)," what tests are you speaking of, and who performed them?

Inquiring minds want to know.

Mike

vitamin B12: worth noting

November 28, 2011

It Could Be Old Age, or It Could Be Low B12

By JANE E. BRODY

Ilsa Katz was 85 when her daughter, Vivian Atkins, first noticed that her mother was becoming increasingly confused. “She couldn’t remember names, where she’d been or what she’d done that day,” Ms. Atkins recalled in an interview. “Initially, I was not too worried. I thought it was part of normal aging. But over time, the confusion and memory problems became more severe and more frequent.” Her mother couldn’t remember the names of close relatives or what day it was. She thought she was going to work or needed to go downtown, which she never did. And she was often agitated.

A workup at a memory clinic resulted in a diagnosis of early Alzheimer’s disease, and Ms. Katz was prescribed Aricept, which Ms. Atkins said seemed to make matters worse. But the clinic also tested Ms. Katz’s blood level of vitamin B12. It was well below normal, and her doctor thought that could be contributing to her symptoms. . . .

http://www.nytimes.com/2011/11/29/he...mic-aging.html