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-   -   Baclofen questions... (https://www.neurotalk.org/peripheral-neuropathy/121565-baclofen-questions.html)

JoanB 05-06-2010 05:24 PM

Baclofen questions...
 
My mother (87) also has some neuropathy but not PN. Recently she started having severe pain attacks in her back. I took her to her pain management doctor, who diganosed it as back spasms caused by her abnormal gait (her right knee is bending in toward her left leg due to arthritis). He prescribed Baclofen but it seems to be doing nothing to help.

I called the pain doctor's office today, and they said that Baclofen takes a while to start working. Baclofen's web site says 10 days. So my first question: why would the doctor prescribe something that takes that long instead of something faster acting, and is it reasonable for me to demand that they give her some more immediate relief? (like Flexeril, maybe?) She tells me the pain is worse than childbirth, which, not that I would know first-hand, sounds pretty bad.

She also told me she was leaking urine when she took this drug last night, so second question: is loss of bladder control a side effect? I can't find it mentioned under any list of side effects.

Thanks in advance...I figured that if any group of people had answers, you folks would.

dahlek 05-06-2010 06:08 PM

Since I've not had this med? I did look it up some...
 
http://en.wikipedia.org/wiki/Baclofen

I don't recall many folks taking it for PN tho?

As for it taking a 'while'? Even Neurontin and Lyrica take about 4-6 weeks to actually work, providing there are no side effects.
Look up the particular drug and dose + prescribing information and read that...its listed under 'usual or common side effects'? or towards the end of the whole thing under 'less common effects reported'.

As for loss of control? A thing to consider is how she's living right now? Mostly sedentary? Pressing on some nerves and not others? Any tests that might have been done on her, such as MRI's or the like? Can also pinch a fussy nerve enough to make it that unhappy! I know. That's happened to me w/the resulting undesirable s/e! For me, it's taken almost a year to get back to normal of sorts.

As for the pain? Has she been tested for either gallstones or kidney stones? I've the former and I'm often feeling as if I've been hit w/a 2"x4"! Docs don't know 'what to do w/me' because I've so many other fun things going on! To be honest? Sometimes the 'cures' are worse than the problems!

As for the incontinence due to the med? Call the doc! See/ASK what alternatives there are? I'm sure your mother is a 'lady' and this problem is one of the more distressing ones encountered than many others! [My M-I-L went thru the same problems]

Just be glad that your mom is alive & sharp at 87! I am much her junior and having gone thru some of this issue? I have to say, it's in the top five of the most distressing aspects one has to face! Please give her a :hug:! from me?

Kidney infections are [I now recall?] often treated w/baclofen, and yes they take a while to kick in as meds! The faster acting meds for such infections? Also have s/e's that are worse than those cures tho. Baclofen If I recall correctly, is slower? But effective w/fewer long term s/e's.

You need a :hug:! too!!! As I'm sure you are worn out by this whole thing! I hope things truly work out for the best? For all! Hugs and hope truly! - j

JoanB 05-06-2010 06:50 PM

Hi dahlek, and thanks for the quick response!

Quote:

Originally Posted by dahlek (Post 652148)
http://en.wikipedia.org/wiki/Baclofen

I don't recall many folks taking it for PN tho?

Nope, for the back spasms the doc says are the problem.

Quote:

As for it taking a 'while'? Even Neurontin and Lyrica take about 4-6 weeks to actually work, providing there are no side effects.
Baclofen is a muscle relaxer, which makes sense. But most of the MRs I've heard of act right away like most pain meds do.


Quote:

Look up the particular drug and dose + prescribing information and read that...its listed under 'usual or common side effects'? or towards the end of the whole thing under 'less common effects reported'.
Did, but not finding this mentioned.

Quote:

As for loss of control? A thing to consider is how she's living right now?
This happened suddenly, on her first occasion of taking this drug last night.

Quote:

As for the pain? Has she been tested for either gallstones or kidney stones?
No...but that's a great idea! I will suggest to doc. You rock!

Quote:

As for the incontinence due to the med? Call the doc! See/ASK what alternatives there are?
Yes, I plan to, but I want all my ducks in a row first. And you know I won't actually get to talk to him until I've gone through the first lines of defense. And maybe not even then, so I want to know what I'm talking about.

Quote:

Please give her a :hug:! from me?
Will do, and sorry you are going through similar problems.:(

Quote:

Kidney infections are [I now recall?] often treated w/baclofen, and yes they take a while to kick in as meds! .
Yes it is RXed when there is urine retention, but this was RXed for back spasms. I'm guessing it relaxes bladder muscles, which is why I'm suspecting it here.

Quote:

You need a :hug:! too!!! As I'm sure you are worn out by this whole thing! I hope things truly work out for the best? For all! Hugs and hope truly! - j
Thanks dear! She's actually been a handful for a while now but she's my mom and I still love her.

And thanks for all of your thoughts!

mrsD 05-07-2010 05:10 AM

Baclofen is a strange drug. Some people cannot tolerate it.
It is hard to discontinue off of.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1121408/

I would really consider using a magnesium supplement. This can relax muscles considerably. And low magnesium may be the CAUSE of muscle spasms! One has to have good renal function to use magnesium supplements however. But this can be considered and may work. If your mother uses diuretics for blood pressure, these drugs deplete magnesium! Also diabetics become low and the drugs used for reducing acid in the stomach, diminish magnesium absorption from food.

Magnesium is used by OBs for severe Braxton Hicks contractions during later pregnancy for women. It works very well. Estimates are that about 70% of Americans do not get the RDA of magnesium any more from diet.

I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

You want to make sure your mother is not having a Cauda Equina event from spinal stenosis. This leads to incontinence too and severe back pain. It is considered a surgical emergency.
http://emedicine.medscape.com/article/791613-overview

JoanB 05-07-2010 07:52 AM

Thanks mrsD. She already does supplement with magnesium, but I'm not sure of the dose. I will find out.

For this morning, I just want to see if I can get her some short-term relief from her suffering. That takes priority over the bladder problem, which I still think is caused by the drug, given the timing.

I will ask about the Cauda Equina Syndrome, but since it's certain that this conversation will be second-hand, there's no telling when I'll get any response for reconsideration of the DX. She does have stenosis, so you may be onto something.

I have been acting as her advocate with the MDs for a while now, and have my work cut out for me this morning. Gotta go, but I'll let you know what happens.

cyclelops 05-07-2010 11:22 AM

I took baclofen and it worked immediately.

I am not on it now, but am pondering if it may help, but, honestly, it knocked me for a loop. It was pretty strong, more so than valium, which is a good muscle relaxant.

JoanB 05-08-2010 05:21 PM

Thanks again, cy. I did get to convince her pain doc's nurse that it wasn't working for my mom and got another type of muscle relaxer, which mom says might be working a little better. I can't recall the name...this week has been such a blur for me that once my brother took over for the weekend, I left it in his hands. He's staying there with her (brother:hug:).

This morning I woke up, and all the mom stuff and PN and mealy bugs on all my houseplants and my unemployed @$$ and megagigundo oil slick in the Gulf (not necessarily listed in order of importance) fell in on me and I started to do what I usually do: cry.

But then I stopped mid-sob and got mad. Really mad.

And I went outside and started throwing rocks. And then I went to Lowe's. And when I got home, I threw more rocks. And I then I did some less dramatic (boring), but essential (behind-the-scene) things and then threw more rocks. And this is what happened:



In case you can't tell, it's a waterfall with a bed of impatiens at the base in our tiny, city front-yard. Oh, and a blue spotlight on a timer.

Now I hurt more than I have in I-can't-remember, but it was worth it. I like the new, improved, Mad Joan. Where did I put my electric chainsaw?

dahlek 05-08-2010 07:03 PM

Ho-kay....the chainsaw? For you?
 
Now explain more? There have been times, it seemed like a solution? But it really isn't? Ask any veteran w/phantom pain syndrome! Then when the 'problem' is gone? The nerves simply don't seem to KNOW THAT! Easily nixed concept in my HMO.
Having gone thru this w/ a similar aged relative? How's she in the constipation dept? IS THAT what's really causeing the 'lady' lots of concerns? Rightfully so, but, there are a slew of medical and dietary options that can help in the quarter.. so talk to your docs AND your nurses! Nurses in senior facilities know about these things! AND can do good things w/diets that docs don't have to 'prescribe' meds for! And older ladies, are less likely to complain...except to you! Just be alert to the word "THEM" or 'they are out to do...' I'd always ask WHO 'THEY' Are and she'd just go...YOU KNOW!!!!!
That happens at that age? Frustrating, yet, communicating w/caretakers about such 'attitude'? Can help avoid problems in the future...

Your waterfall is perfect in my eyes! I bet the sound is so soothing! And yes, life beats on us from all directions? But we do survive! Better so for seeking advice from those here wiser than I am! [Actually I'm kind of jealous of that waterfall? ;}]
Keep faith and hope and a sense of some of the 'sillies' you will see during this course of your life...and, beleive me? There are a heap of silly things going on! Hugs :hug::hug:'s and hope for now? But SPEAK UP! Please? - j

JoanB 05-08-2010 07:29 PM

:eek::eek::eek::eek::eek::eek::eek::eek::eek::eek: :eek::eek::eek::eek:

Jeeze Louise, dahlek! I meant to use the chainsaw to cut down a pile of broken boughs from the wind! Oh well, I will admit to dark thoughts of my own at times--just not this one.:winky:

Constipation doesn't seem to be a problem for my mom...usually the opposite, but thankfully still continent with that part. And so far, I haven't heard anything about "them", but she quite emphatically insisted the other day that I've gotten taller, not that she's gotten shorter.

Thanks for saying nice things about my waterfall. The actual falls is a resin thingy I had in the backyard where it looked stupid. But I had to build a rock base for it and the little wall for the flower bed.

aussiemom 05-08-2010 09:55 PM

Sort of OT, I throw pot holders when I am really, really mad. I can't break anything with them, but I don't get a pretty waterfall in my yard either! TeeHee

JoanB 05-09-2010 08:13 AM

Throwing is not the answer, Barb. At least not for me. I throw like a girl.

More throwing thoughts:
  • The trip to Lowe's was to buy some $0.38/ea. bricks to build the base and inner retainer wall. So I'm throwing them from the back of my car up into the little front yard, which was about 8 feet. Three unrelated passersby asked me if I wanted help. Don't know if I looked that pathetic or if they really wanted to throw bricks too.
  • Throwing pot holders: reminds me of the hot pad -a hard, ceramic one- that I threw at my brother because he wouldn't let me watch Rin Tin Tin on the TV. He ducked, and it took out a pane in the China closet and a bone China teacup from my mother's wedding set. I still feel bad about that.

sabimax 05-09-2010 08:28 AM

Did not read thru all replies so may repeat something someone might have said..

I was prescribed baclofen for muscle spasms... and very next day could walk better in morning when my muscles are tight... so relief for me was quickly... but after being on it a while had to increase it... and now spasms are getting worse again... but using lots of stretching and PT to try to get by without increase or more meds... as PT said more I increase the harder to live with decreased amounts...

If she is in great dire pain, why not the ER for pain meds... and did the doctor she seen address then what they can do for what is causing hte back spasms... is there things that can be addressed there to help it ...PT or something.... questions for the doctor I guess...

NO I have never had an issue of leaking urine while on the medicine... my bladder si weak and I have that with sneezes etc... (due to giving birth 6 times...)

speaking of that my spasm pain is like childbirth at times... sometimes I relax and use heat or ice too on areas... stretching and have spouse massaging the back areas that are tight...

good luck and hugss,sarah

echoes long ago 05-09-2010 12:37 PM

in the old days i read that people used to relieve their frustrations or tensions by throwing plates in the woods against trees while screaming at the top of their lungs . of course this is environmentally destructive so maybe throwing stones in the ocean or river or lake while screaming might help. or perhaps throwing eggs or tomatos or something like that in the woods that animals would eat after might work. finding an area where no one would hear you so as not to alarm anyone or getting yourself committed my involve a bit of looking for these days. ive never done it myself but it sounds good to me at times.

JoanB 05-10-2010 07:12 AM

Thanks for your thoughts, sarah. Sorry about your back spasms :(

Mom didn't want to go to the ER because the paramedics, when this first started, said the ER would do nothing for her. I know better as I had bad back spams once, went to the ER, got the drugs I needed, and was fine after, not that I'm saying mom will get all better. But mom is from the generation that doesn't question authority, and hey, the peach-fuzzed little twerps had uniforms on. I wasn't there at the time, or I would have schooled them.

Anyway, the good news is that the second muscle relaxer does seem to be working better, and she said she got a good night's sleep for the first time in 10 days.

To answer your question about additional treatment, she is scheduled for an injection into her spine on the 20th to reduce the inflammation, but I'm blanking on the details at the moment. She's had these before in a different spine location, and they have helped for other pains. Mom has been resistant to my suggestions of either heat or cold. Everyone in my family is weird. This should expain a lot to you.

And thanks for the thowing suggestions, echoes. I was thinking a few rounds of Bocce might be good, although that's underhand throwing, which isn't really cathartic. But it's one of the few semi-physical games I have a fighting chance of winning against a 20-year-old guy. Haven't tried it since getting PN though, so that might not be true any more.

5280Katie 05-15-2010 07:14 PM

I'll add my comments on Baclofen, if I may. I'm truly terrified of it! :mad: Long before I became deathly ill last year, I had taken Flexeril for back spasms for over a decade, because of a deteriorating spine (arthriitis, osteo). It always worked without fail, even after my last facet injection when the surgeon actually had to "pound" the needle into the joint.

During my recent illness, they took me off Flexiril (without any replacement) because it interfered with diagnostics. After I'd come home, the pain Dr reintroduced it because of intense spasms from PT - after he worked through more serious pain concerns. I immediately developed urinary problems (the exact opposite - I couldn't go). After much arguing because of my previous long-term usage, he took me off Flexeril and put me on Baclofen. He explained, in excruciating detail, how I had to ramp-on/ramp-off it. My urinary problem stopped almost immediately (it's fairly common in combination with certain other drugs). As I ramped up to full Baclofen dosage, other far more serious problems developed (no spasm relief at any point, either).

Hallucinations (husband's term); he'd find me carrying on long conversations to thin air; I assured him I never, ever saw anybody or thing. I do remember talking, but he said it was clear, involved, normal conversation. Something I absolutely couldn't do back then and still have some problems with because of brain injuries from the illness.

Vivid, terrifying nightmares based on reality. At 1st, I didn't remember dream content. Onset symptoms included throwing myself from bed to floor. Crawling to the bedroom wall, backing into it, huddling into a ball and crying, trembling. Then, running to the master bath, closing/locking the door, turning all the lights on and crying for help. Then, and still significant in extent now, I'm bedridden and can barely walk the distance. My hands are all-but useless. Finally, paralysis in bed, screaming for help. I said reality-based because at the end, I remembered the nightmares clearly. All included my room, its real furniture and electronics in place (TV, computer, radio, phones, down to remote controls). My empty-nest family; husband, all five cats. I will not describe nightmare contents, but they included simply horrendious things.

Dramatic mood swings and paranoia. I cried violently at toilet paper commercials, laughed until it hurt over news stories about war casualties, accident victims, tornado devestation, even 1 that flattened a town 25 miles from our home. Froze up on medical/PT days. Positive they were killing me with medications, excercises, tests.

Least/last of all, constipation to the point of real threat to my life (from a certain type of hemmorhoid). Husband called the pain Dr, we described problems on speaker phones, he said to stop the Baclofen immediately, even tho we both brought up his ramp-off speech about severity of problems with doing that. Really, really bad move; I won't describe the details but people should NOT do this. Needless to say, Baclofen was added to the only 3 meds on my allergy/alert list, which have been listed for almost 40 years. The Dr was most mystified that Baclofen didn't stop the spasms. After all, its target audience are those with spinal cord injuries. I could tell he thought the other problems were in our heads. A quick internet search shows even the manufacturer lists many of them, and patients have reported all/even worse reactions.

Sorry that this got so long; I feel absolutely compelled/driven to list my complications, possible effects that someone else could have - whenever I just see/hear Baclofen. It was that bad for me, even compared to my post-illness life. I finally ended up on Robaxen for my spasms, although I have to take far more and still have less relief than Flexiril provided.

As a side note, I wished I had a Mom like most of yours. Mine is 94 and in assisted living (I"m her legal POA and also have medical POA - I let her stay in there, while she really belongs in the full nursing home wing). She will NOT take her medications. I've implemented the order that the staff remains in her room until they know all pills are down her, even if they have to pry her mouth open and force them down her throat. She's a master at clenching her teeth (all her own), hiding them under tongue/in her cheek, spitting them across the room, and ever other trick. There are some "different" problems with a lady that age, who has all her marbles, and checks them daily to ensure each is still there and in its correct position :rolleyes: :winky:

Hope some of this provides info/different thoughts and considerations regarding Baclofen. Thanks for reading (or finding a new sleep aid :D)

cyclelops 05-15-2010 07:40 PM

If I am correct, and MRSD, you would likely know better than I, but, anyway, isn't Baclofen similar or related to the benzo's?

It seems to me, if you use a drug for one thing....something else bad happens....honestly, I don't know what to say.:(

mrsD 05-16-2010 06:40 AM

There remains some debate as to how baclofen works:

http://www.ncbi.nlm.nih.gov/pubmed/231227

Quote:

ACTIONS

The precise mechanism of action of baclofen is not fully known. Baclofen is capable of inhibiting both monosynaptic and polysynaptic reflexes at the spinal level, possibly by hyperpolarization of afferent terminals, although actions at supraspinal sites may also occur and contribute to its clinical effect. Although baclofen is an analog of the putative inhibitory neurotransmitter gamma-aminobutyric acid (GABA), there is no conclusive evidence that actions on GABA systems are involved in the production of its clinical effects. In studies with animals, baclofen has been shown to have general CNS depressant properties as indicated by the production of sedation with tolerance, somnolence, ataxia, and respiratory and cardiovascular depression. Baclofen is rapidly and extensively absorbed and eliminated. Absorption may be dose-dependent, being reduced with increasing doses. Baclofen is excreted primarily by the kidney in unchanged form and there is relatively large intersubject variation in absorption and/or elimination.
from http://www.rxlist.com/baclofen-drug.htm

also this is interesting:
http://en.wikipedia.org/wiki/Baclofen

Baclofen is not chemically a benzo...but it does behave like one sometimes. In fact there is a guy on the net who claims it will cure alcohol addiction (in very high doses) which seems like a hard way to do it, to me.

I saw this doctor on TV once not too long ago:
http://www.businessweek.com/magazine...8126_mz018.htm

JoanB 05-17-2010 08:27 AM

Thanks for sharing your experiences, Katie. Sounds like you really went through hell! Makes me feel almost lucky concerning the Cymbalta withdrawals I'm dealing with right now. I'm sorry you had to go through that. Mom is off the Baclofen now, but we're going through new challenges that anyone with aged loved ones can imagine.

Speaking of dreams, during my Cymbalta withdrawal, I've been having some really epic dreams every night, and by epic, I mean cast of thousands, breathtaking sets, Cecil B. DeMille spectacles. Last night's was more of a theme-park techno-attraction, though. It employed 3-D screens, holographs, and live actors in a huge building with a kabillion rooms that you went through in a self-directed, interactive tour. It had the flavor of Alice in Wonderland meets Sweeny Todd (I'm suspecting a Johnny Depp glitch in the software), so it was whimsically sinister in that 19th-century British way. I woke up and said "wow, if I were willing to $%& my brain with more drugs, I might be rich by now!"

Thanks, cy and mrsD. You both educate me all the time with your info and insights.

mrsD 05-17-2010 08:32 AM

I always have vivid dreams. I don't mind them, except when they turn negative. But that doesn't happen very often (spiders, snakes and being chased are not my faves). And I don't take any antidepressants.

When we go upNorth for the summer, it is soooooo quiet up there, I have way more dreams than usual as well.

5280Katie 05-17-2010 11:34 PM

Thanks, MrsD. The 2nd user comment in the 2nd link rather sums up my experience: "It caused me to see things and hear things that were not there. It was the worst thing that has ever happened to me, I was afraid and the worst part is that things I saw seemed very real to me."

However, the 2nd paragraph about withdrawal in the wikipedia article brings back scary memories, too :eek: :)

Thanks, JoanB. Yes, it was a living hell for me, and I was on/off it in just over a month (I think - not much of my thinking was clear during the experience). I have never experienced anything like it. Of the 3 drugs listed that I can't take, 2 cause rashes, 1 causes anaphylactic shock. I asked that Baclofen be added to the top of the list. I hope your Cymbalta withdrawal is over. I sure would have loved dreams like yours, though :winky:

I can't imagine an elderly parent going through what I did. Just throwing themselves out of bed to the floor would be a guaranteed broken hip, pelvis, or both - I have an uncemented, artificial left hip, and I've broken the left half of the pelvis. On the right, the hip looks like it was repaired with supplies from an Ace Hardware closeout sale, and I've broken that side of the pelvis twice, for a total of 8 pieces. None was fun, even when I started at age 49! The mental machinations, especially coupled with any level of dementia, would cause a heart attack. I am one of a small percentage, but any who experience bad reactions to Baclofen will never forget them. If I alert even a single person to what can happen and they notice the first symptom, and call their Dr asap, I will be thankful.

PS: When looking up new drugs as I started recovering last year, I stumbled on the Drugs- Forum web site. Very professional, huge, in multiple languages. However, most of its threads/posts/content is devoted to...um...er...alternate uses of prescription drugs. With just common, kitchen items, you can turn just about anything, including Baclofen, into an interesting, 'recreational' activity. :shocked: (Katie RUNS for her herbal tea!)


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