Baclofen

I finally got the "down low" on spasticity from my new PT. I used to think that spasticity was a good thing - really liking watching my legs move. I now know that there are other, better ways to get my legs moving.

I am already taking 120mg of Baclofen daily and my soon to be fired rehab doc (another story completely) has talked about increasing it further. All my research shows that 80mg is the maximum recommended dose. When I asked her about using the Baclofen pump instead, she told me she would not consider it because if my history of depression because the pump could cause depression. How on earth could taking micrograms instead of milligrams of medication possibly cause depression? She had me on Valium 2mg at night for two weeks and it helped with the spasticity. She DC'd that when she agreed to give me back Trazadone which I take for insomnia - not depression. Neither of those two drugs should be taken with Baclofen. Nor should Norco or Robaxin, both of which I take.

My spasticity caused me to hit my head on the Giger bike and fall off another bike while transfering back to my chair in my last two days of therapy. Something has got to give.

I welcome all your thoughts and comments.

God bless.

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Baclofen helps me control spasticity also. Spasticity comes free when you get transverse myelitis, so we get to figure out how to deal with both of these.
My baclofen use is limited to 15-20mg, low doses and only when needed, I find my spasms happen mostly at night or when my feet are raised. Sitting upright, no problem usually, but the night spasms can wreck a good night's sleep. So I use the baclofen to sort of 'break the cycle" of repetitive nights of spasms.
I only use baclofen as needed, much the way you might use aspirin for an occasional headache.
Other ways I beat spasms are:
1) I "lean into" or put weight on a leg when it starts those bouncy tremors that happen with spasms. stops it right away.
2) I avoid putting my feet up whenever I'm 'spasmy".
3) I avoid caffeinated coffee and tea after dinner, when it's close to bedtime. When I sometimes will have problems with spasms in my legs.
4) sleeping with my legs bent, really helps avoid triggering spasms. Which tend to straighten and stiffen my legs.
5) when I first get up from a seated or lying down position, the spasms kick in, then they pass in a few seconds, so I've allowed for this to come and go before I expect to move right away. In other words "don't try to jump right up quickly, go with the flow of passing spasms, avoid triggering them by watching for patterns that set them off, don't use stimulants like caffeine, stay in a bent-leg position at night and add a little baclofen for the persistent events. This is how I handle my situation. Hope it helps, give some of these things a try, and good luck.

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Hey Pink Harley Girl -
Sorry to hear about your misfortune. I know all about doctors who don't know what they are doing for people like us. It's regrettful and breaks my heart. After a year of one pain med after another, including almost ODing on Baclofen I went to a new doctor of physical medicne. He took me off all pain meds and replaced them with a small dose of Elavil, something like 10mg that I take just before bed. I have spacticity and hace learned that if I simply move my legs when it starts, it goes away. Like you, I believed that the spacticty I was experiencing was good, so I tolerated it. I still believe that today and am getting a fair amount of return to my legs, so I just suck it up and deal with it. Hang in there, ask your new doc about Elavil and see what he says. Keep a positive outlook and put your situation in the hands of the Lord and he will bring miracles to your life like you never imagined, or dreamed possible.

Good luck,
Jim

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Hey Pink,
I've been a quad since 1986 and took baclofen orally for years. I don't recall the dosage, but it was way over the max recommended. It was all I could do to hang on to my job, but also the only way to control my spasms.

About 7 years ago I had a baclofen pump installed. Best decision I ever made. I didn't know such a thing existed before going to a new doctor who specialized in pain management. I was instantly much more alert and my spasms are under control. The pump dispenses more medicine at night, when my spasms are worse.

I have the baclofen changed out four times a year with a 30 minute office visit and had another surgery a couple of years ago to replace the pump (the battery in the pump only lasts about 5 years). I can have the dosage modified easily and painlessly with a 10 minute visit.

It has been a great decision for me and I hope this helps. Good luck!

Skip Bryan
www.LivingWithParalysis.com

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Hey Pink Harley Girl, I was taking 60 mg. of Baclofen, which was helping with my spasms/spasticity, they told me the max was the 60mg. now my nuerologist has me taking 40mg. of Baclofen with 30mg. of Flexeril which is in my opinion a better mix. They help me with the spasticity quite a bit, though he also thought I might be having mini seizures ( with the Baclofen), because I fall a lot more.( I don't think so.) Steve H.

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Hi Pink Harley Gurl,

I think you have most of your bases covered with the Baclofen dosage management. I can only add that, as you have noticed, most of the other guys are talking about spasm CONTROL because you don’t want to get rid of the spasms entirely. With time you will find that having a certain degree of spasticity is actually a good thing, so, in my opinion, you were mostly correct the first time.

The spasms do have a down side, like sleep pattern disturbance, or when you fall down and hit your head and stuff like that, but they can be very useful too if learn to CONTROL them and use them to your advantage. An increase or decrease in spasticity can tell you something is wrong, e.g. you might have an ingrown toe nail, be developing a pressure sore, coming down with a fever or some sort of infection, or your shoes or socks may be too tight, or your bladder may need to be emptied, e.t.c.

Spasms also help in maintaining muscle tone I think. Personally, I have also learned to trigger and use certain muscle spasms to help me open my hand in order to pick up small items like pens or pencils, complete wheelchair to bed and bed to chair transfers, pressure shifts and position changes to alleviate pressure and prevent pressure sores when I’m in the chair or on the bed, bladder relief and a lot of other things.

You will probably have to study your own body’s behaviour and requirements with time and try and strike a balance concerning how much spasticity is actually helpful and how much is not. Then try and fix your spasticity control meds (in consultation with your doctor) and pattern your muscle stretching exercise routine to meet this requirement. It’s a very individualistic thing.

I find my daily morning muscle stretches to be like fine tuning a six string guitar before playing it. It has to be just right, otherwise; too much and I can’t do anything until a certain degree of spasticity builds up later; and too little, and my body feels tightly wound up and uncomfortable, and I experience a higher degree of spastic leg shaking and kicking and also more back muscle twitching and twisting.

I hope this helps,

Tony.

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Hey Pink Harley,

I don't know what to say. I constantly have spasticity/spasms in my legs. I tried Baclofen for one day but it made me very drowsy. Valium also didn't help. As I am writing this my right leg seems intent on establishing a new standard for spasticity. The epicenter for my spasticity is my lower Thorasic Spinal Cord (T-10). So whenever I become spastic my leg(s) levitate and at the same time my upper body
lurches forward.

I wish I could say hot damn I heard about a cure for
sci and this will be looked upon as a bad dream.
But all I can say is I feel your pain. I kicked ass on the bike today.

Stay strong

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Hey Pink!
I just want to give you my point of view on spasticity (well, not only mine but what I've heard) and like Tony said, spasms can be a good thing and you can definitely learn to control them, I know they are a lot worse for some people, can you feel a spasm coming? or do you know what trigers them? Have you tried tightening your stomach or abs when you think a spasm is coming? or holding your breath for a bit? I actually stoppetaking baclofen cos I noticed it wasn't doing anything for me. I just joined a spinal cord injury recovery program called Project Walk (maybe you've heard of it) and they just love spasms there, they don't even call them spasms, they call them energy and they teach you how to use that energy for your benefit and eventually turn them into voluntary movements (it's awesome!). I know people use spasms for lots of things, we can all do it, we just need some training.
Blessings to you! Take care!
Liss :-)

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Medications help more with spasticity (high tone) than they do with spasms (involuntary movement).

While the FDA recommended maximum of baclofen is 80 mg. daily, many people take up to 120 mg. daily safely. Zanaflex can be used alone or combined with baclofen. Clonidine can be added to both to make them more effective. Dantrium is an older medication rarely used anymore due to its liver toxicity and tendency to make normal muscles weaker. Valium does not help a lot as shown in many studies, but makes you not care that you have spasticity or spasms. Gapabentin may help some as well, although it seems to work better in MS than in SCI.

Non-medication spasticity control measures should also be used, ideally before you consider medications. This includes at least daily stretching and ROM exercises, standing at least an hour daily, proning (laying on your stomach), and being sure your chair and cushion are individually fit to you properly.

Some degree of spasticity is good for you as it maintains muscle bulk, burns calories, reduces your risks for DVT, and serves as a warning system if you have other things going wrong (pressure ulcers, DVT, UTI, constipation, etc.). If it starts to interfere with safety, hygiene or function, then medications should be considered.

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Thanks y'all for all the awesome information. I have learned so much from being in this community.

Liss - I have been trying to reach the Project Walk folks to get their opinions on the no meds policy they have. I am actually considering getting on a plane and going there for a week to get the "at home" therapy designed. We are playing phone tag.

I, too, have started therapy at a "recovery center" which is night and day different from the outpatient "therapy" I was receiving from the rehab hospital. They really have my legs moving - I spent an hour on a bike and it was thought I wouldn't have spasticity after that. When I was transferring back to the chair I had a slow motion fall to my knees due to the high tone. Go figure!

Thanks again for all the insight. My husband, Derek, has the gift of creating acronyms out of common words. Using the word FAITH as Fantastic Adventures In Trusting Him. My faith is what gets me through and it warms my heart to hear of the faith walk in this forum. You know, there are no wheelchair tracks in the sand. Only the footprints of The One who carries us.

God bless,

Diana

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I feel your pain... I've tried everything under the sun and I'm having a hard time with spasticity as well. I can't count how many timesa I've flipped over backwords out of my chair do to spasms. I take 20mgs of Valium at night. I to though that having my legs move was a good thing, and it is... But, like you stated, there are other ways to accomplish that.I wish i had some answers for you. I don't. It's frustrating i know. Good luck, I am constantly switching meds to achieve relaxation. You'll find what works best for you

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Hey Hotwheels,

Did you say 20mg of valium? That would knock out my horse and probably a Harley too! I wonder how many of my other meds I could quit with just half that dose of valium.

With your sports background you probably have the strength to get back in your chair by yourself. I am still working on increasing my upper body strength. Thankfully the recovery center is teaching me technique for when I am strong enough. There are times when being female is really the weaker sex - physically. Did I really just say that? My mom just turned in her grave.........

Seriously, I think most of my shoulder and back pain is due to weaker muscles. The leg spasms are fun to watch but the trunk spasms are seriously dangerous.

I am still going to pursue investigating the Baclofen pump. I'm tired of feeling like I am in a drug fog. My body is not a toxic waste dump for chemicals.

Thanks again for all the great info.

God bless.

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Pink Harley,

So men are stronger and perhaps smarter it's no big deal.

Regarding spasticity, what I find helps me is
whenever I am abruptly hit I grunt or some other
vocalization. It could any kind of sound but it has to be done forcefully. Also, it is ok to grunt when you are transferring. I wish there was something better
I could say.

I am just joking about men being stronger and smarter. Joking is something I don't do much these days.

aahhgg@#$*^$# I just had some bad spasticity.

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Mikey,

You crack me up. Smarter? Hah!!! I'm glad you can make a joke-laughter is the best medicine. I laugh at myself on a daily basis. Don't get me wrong, I still cry but not necessarily daily.

I even told my doctor last week that I would "suck the snot out of a dead armadillo's nose if it would stop the pain." It's part of a sick joke my dad used to tell.... She didn't get it.

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Pink,

My legs are really going through a lot of spasticity/spasms. It is constant.

I don't see many armadillos and I am currently not driving. I occasionally see a possum or a raccoon. I wouldn't have to kill it.

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I too have suffered depression even before my accident. I take a 20 mg Baclofen 4 times a day (80mg) per day. I also take Neurontin 600 mg three times a day. I have a doctor who also has me on an experimental drug called 4-AP (Aminopyridine 10 mg) three times a day. It is a nerve rejuvenator which is supposed to help with any nerves which may rejuvenate. I feel it is worth a try and is a compound drug the pharmacist has to make and is not covered by insurance. I have alot of anxiety and do not sleep well at night. I am also on an anti depressant and xanax. I have to take a daily blood thinner also because while in the hospital I had a small blood clot pass through my heart into my lower right lung. I was later diagnosed as Spinal Cord Injury motor vehicle accident, Respiratory failure twice and paraplegic.
I thought I was dying. I do see a few doctors since I started out with a bedsore being thrown out the back windshield of my car and breaking my back, three broken ribs on my left side, breaking my collar bone and the bone behind it. I too have alot of spasms and am back in out patient rehab. I went without any rehab for the past six weeks because I didnt have any insurance when I had my wreck. So I am on Medicaid and they do not get in any hurry to help someone. My mother is my main care giver and has quit working full time to take me to all of the appointments I have to attend. She is afraid to leave me alone since I have fallen out of my wheelchair several times and my pain meds along with my other medication scares her that something may happen to me.
I stay so depressed I have to see a psychotherapist weekly who I enjoy being able to tell her anything.
I too hope I'm on the correct medications and wish there was someone I could reach out to and make sure I am getting the best of care.
I am not dealing with all of this very well.
Let me hear back from you with any suggestions you may have.

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