Baclofen for Spasticity: Would Like to Hear Your Input

Triathlon Forum
1

As a result of a traumatic head injury in 2011 and associated upper motor neuron lesion, I am having difficulty walking for the past 2 months and have a few therapy options that include medications so would like to hear if anyone has some experience.

After the 2011 crash, I had developed motor control spasticity in my left leg, that initially manifested itself in walking, jogging riding but in due course I was able to get over that with a variety of non pharmaceutical therapies. It would mainly show up in skate skiing which became impossible, but I could get by in classic skiing which is mainly front to back like walking and running. In terms of running, without full motor control of my left leg/foot, the only limitation was that I was running 10% slower than pre accident (ex 37 min 10K down to 41 min, 90 min half IM down to 100 min…and I was avoiding trail running due to stability concerns), but I was getting by just fine on day to day life.

I have been living a full life, did 11 IM’s in that time frame and did 3x70.3 World’s and Kona, so aside from being a “bit slower” on the run, life was good (actually really good). I had been doing balance and stability core work pretty well every day for the last 4 years which was really helpful to not get into a scenario that triggered the spasticity.

Due to a “comedy of errors” in October, I managed to aggravate my left foot which has resulted in the spasticity showing up in walking now due to a reflex reaction originating in the plantar nerve area. This is debilitating since you have to be able to walk across the room to hug family members, to the fridge, or bathroom, or to get to the computer to surf ST (OK…anything else left in life)? Both walking and running are impossible, but realistically, I just want to walk and not be limited to a life on crutches.

My docs have offered a few options one of which is low dosage of the anti spasticity drug Baclofen at 5 mg per day, which “should” enough to calm the nervous system and get me back to normal walking and perhaps even running. I have read that at this dosage the side effects are basically slowing down the nervous system a bit and making you a tad “slower” for day to day life and a bit tired.

I would like to hear from anyone who has been on it, because it largely sounds like once I am on, I am on for life.

I am only 50 and I hope to have 30+ years to live. The idea of being chemically dependent is not sitting well with me. In the last 30 years, I literally have had zero drugs other than some ibuprofen for dental surgery and some anti inflammatory drugs after the 2011 crash. That’s it.

I have followed some of the discussion on MS, Head and Spinal Chord Injury forums, but really don’t have a window into people doing athletic stuff on the baclofen. Also I don’t feel comfortable posting in that context where people are suffering really bad, in wheel chairs and dealing with day to day independence and I’m just off doing athletic stuff (but if you watch me spasm today, I fit into the handicapped world much more than the athletic world).

Keep in mind that for 4.5 years I was on nothing for spasticity and I am still holding out hope that repeating some of the therapies from 2011 gets me back to where I was just 2.5 months ago and able to walk-run with normal gait.

Please note I am able to swim un encumbered. I am able to ride at full power without the spasticity “kicking in”, but from time to time I feel a “pre cramp” feeling (that has existed on and off for the last 4 years post accident), but its under control for riding.

Really, I want to hear from people who have been on Baclofen in an athletic context.

Finally, I have made substantial improvements in the last 3 weeks. 3 weeks ago I could not walk or run in the shallow end of the pool without spasticity. Now I can. I can get around inside my house without crutches, and when I need to, I hold a wall or furniture. At work I use the crutches to get over longer distances in the office. Outside I have to pretty well always use them to deterministicaly get around. I don’t feel confident walking around outside and getting “stuck”.

OK, one more thing…please don’t ask me to ask my doctor and not ST. I have been doing exactly that. I just want to get some feedback on using Baclofen in an athletic context and that type of info is non existent. I can still swim and bike and would like to keep doing that. If I can walk again, I largely get back full quality of life (basically I can get around and swim and ride as much as I want even if there is no running and minus competition) and I am fine with that. Well as fine as an over racing athlete can get.

Any input on this medication is appreciated. There may be some of us here with MS using it.

2

My husband used this for about half a year, with the hope that it would tone down some pretty significant back issues. The relatively low dose he tried at first did not work, so the doctor increased his dose several times. Eventually a high enough dose worked to decrease back spasms, but with serious side effects. It led to severe insomnia and he was constantly tired (most likely from some combination of insomnia and the medication itself). He had no desire to train or to do anything athletic because of exhaustion. He generally started to have a hard time with basic life functions and work constant daze/memory loss. Of course, it was impossible to determine what was from the medication, and what was from insomnia. He also had some loss of sensation with respect to certain, um, physical areas, which I do not believe was a documented side effect.

Around five months (or so) after he started it, he decided that it was decreasing his quality of life and that he would rather deal with the pain. THIS is where I really remember the Baclofen - because he became the moodiest, most unbearable person imaginable for the month or two that he was weaning off of it. I cannot emphasize enough how terrible the withdrawal is from Baclofen. So, I will affirm that you should go in with the attitude that you are committed for life, because you do not want to come off of it.

3

I have no experience taking Baclofen myself but I am a neurological physical therapist who works with many people who do. It sounds like your spasticity is more isolated to your left foot/ankle. Have you discussed the option of Botox to just the muscles that are most involved? Effects last about 3 months and the use an EMG guided needle to make sure they get the most active area of the muscle. There would be no systemic side effects like there can be with Baclofen. Some of my patients just get it one time and it gives us a window to work on range of motion, strength, motor cotrol etc. and they don’t need it again which sounds like that might be possibility given your history. Some insurances, at least here in the US, will make you do a trial of Balcofen before they approve Botox.

Good luck!

4

Disclaimer: I am a neurologist/neuromuscular subspecialist. I completely agree with jacksonk. Why would you take a systemic medication with possible side effects to treat a focal problem? I also think that 5mg of baclofen is a dose for a mouse. Well, maybe a rat. Patients with “real” spasticity in my practice are generally taking 10 - 20mg 3-5x/day. Why would you be on it “rest of your life”? You don’t need to be. You can taper off and get off it any time you like, if you don’t like it. I am just skeptical that 5mg will do anything noticeable, but it would certainly not hurt to try. Botulinum toxin injection carefully targeted in competent hands under ultrasound and/or EMG guidance may be the best option, depending on the exact pattern of your spasticity/impairment. Best of luck. You have already accomplished incredible things, and are an inspiration to many.

5

Thanks…this is actually some of my fear going on it. I am managing to get on with life with crutches. My upper body is strong enough to get around even though it limits doing thing (like getting a coffee at starbucks, well, you can’t walk out with it and go into your car, because you need both hands). But the rest of my body is working great…I am really reluctant to go on something for life without really exhausting all options. Also I feel If I can un-do the comedy of errors from October (aggravated big toe in my bad leg, aggravated ball of foot in my bad leg and messed up my sciatica a bit at the nerve root), then I might be able to go back to “life as it was” in October, without meds. While not perfect, I hold out hope because I got to normal day to day life and fairly decent level racing in the past with zero anti spasticity meds.

6

Disclaimer: I am a neurologist/neuromuscular subspecialist. I completely agree with jacksonk. Why would you take a systemic medication with possible side effects to treat a focal problem? I also think that 5mg of baclofen is a dose for a mouse. Well, maybe a rat. Patients with “real” spasticity in my practice are generally taking 10 - 20mg 3-5x/day. Why would you be on it “rest of your life”? You don’t need to be. You can taper off and get off it any time you like, if you don’t like it. I am just skeptical that 5mg will do anything noticeable, but it would certainly not hurt to try. Botulinum toxin injection carefully targeted in competent hands under ultrasound and/or EMG guidance may be the best option, depending on the exact pattern of your spasticity/impairment. Best of luck. You have already accomplished incredible things, and are an inspiration to many.

Thanks Doc TriKat. The Botox injection is one of the options too. I guess the Baclofen is almost certain to nail the problem, but I am on drugs for life or that’s the discussion we had. My doc said I could come off but it would likely come back as it is an upper Motor Neuron thing (but I am hopeful that if it only comes back doing something more challenging like skiing, then I can live with that). I understand that the dosage is quite low, which is why the side effects might be low. It is in very specific phase of my walking gait that the spasticity kicks in…it might be possible that this low dosage is “just enough”…For anyone reading, when you have an uncontrollable cramp, if you can keep things on the “right side” before it turns into a lightening bolt, then that’s just enough. It’s almost a binary outcome…a few steps of perfect gait then complete out of control left leg spasticity. The Botox in the calf/foot muscles might hit it in one shot, but after that, I am told it might be something that is needed every 3-6 months. But I THINK if I can get through this hump where I no longer get the bad feedback from the plantar nerve->tarsel nerve-> tibial nerve->sciatic nerve chain back up, then I may not need anything as has been the case for the last 4.5 years.

So on the one hand the spasticity scenario is mild…its not like I am having spasms all the time sitting, standing, lying down, riding a bike, swimming. But at some point in my walk gait it kicks in.

Also one more thing…if there is no pressure on the sole of my foot (mainly 4-5 metatarsel aread) or if my spine is unloaded, (ex biking) then I can do everything. My spine has to be loaded and my sole of foot has to be bearing 100% of my weight for things to kick in.

7

I’m an incomplete parapleagic, I was put on Baclofen almost immediately after my accident to control extreme spasticity. I don’t recall the dose but it was high and got to the point of looking at getting a pump put it but over time things started to calm down and I decided to stop taking it and slowly came off the meds.

Once I was off I found my energy level improved, I was able to sleep more and just felt better hard to really quantify but I felt better being off it even with some spasticity returning.

I would not recommend it, I would recommend the botox I had good success with it but it does need to be repeated every 3 months so it gets better then worse then better etc

8

Just one question - did your doc actually observe you walking/running and you having the “spasm”? Are you sure it’s spasticity, and not clonus? (they are both from upper motor neuron lesion, but are different things).

9

I may have missed it in your description, but my assumption is you have a patterned response when it kicks in with the rate limiter being at the ankle/foot from gastroc-soleus tone?

A word (or two) of caution on Botox is that while it may help with spasticity reduction its focal effect on injected muscle group(s) will profoundly weaken the muscle and hence control of associated joint. This is a bit of a challenge in higher level functioning/endeavors. Next up, initial dosing is challenging as is titrated to desired outcome. Additionally, the effect basically follows a skewed bell curve in terms of build to maximal effect to longer tail of washing out. This non-linear effect furthers complicates biomechanics, management and adaptation to the response in athletes. If you choose this route you may want to limit selection to the area (muscles) of greatest restriction and start on the low end of dosage.

I think you are gathering the plus and minuses on Baclofen. I try to stay somewhat incognito here, but if you PM me I can share an idea that may be worth a shot (not literally). This is not to say what is being proposed here is wrong, just has some trade-offs that you are wisely weighing.

Cheers!

10

Disclaimer – I am a Physiatrist (neuro rehab specialist). We’ve actually met a few times back when I lived in Ottawa and did the ‘Tour de Gats’.

Anyway I too would recommend looking into judicious use of Botox as you are looking at a focal issue as opposed to a systemic one. It’s a matter of targeting the appropriate muscle with an appropriate dose, which can be a bit of trial and error. The upside, and downside is that Botox lasts about 3 months. Stretching is very important as well, and if you had this under control without pharm before I would be optimistic that you can get back to that point.

11

I am trying to find a few pictures online that shows the motor action in play. I can’t find them from any triathlon, because literally for 4 years, I have functioned with normal gait. Here is from a race this summer. This would be the exact phase of the stride when the left foot comes off the ground that the entire left foot inverts now with an uncontrollable calf and groin tightening/cramp, stopping me in my tracks. (by he way, both feet are in the air with large vertical displacment because this is a downhill finish in Tremblant)

http://www.irun.ca/blog/wp-content/uploads/Dev-Tremblant-70.3-e1450207674193.jpg

I found this one from a 2012 skate ski race that I did 8 months after the original accident. At this point in time, what is funny is I could not run yet or walk properly, but as I had less ‘feeling’ in my leg, when trapped into a ski boot, I could largely do with old motor patterns not getting negative feedback from the extremities:

http://www.zoomphoto.ca/viewphoto/16241-637-15473146/1/

You can see the right ski I am gliding on but the left ski is going to a recovery phase and inverting.

Here is another one:

http://www.zoomphoto.ca/viewphoto/16241-637-15470399/1/

In this it is less pronounced:

http://www.zoomphoto.ca/viewphoto/16241-103-15445846/1/

next frame back to normal “stride”

http://www.zoomphoto.ca/viewphoto/16241-103-15445847/1/

In any case, this is basically going on while walking now.

12

One more thing I should add.

When I get up in the middle of the night to go to the washroom, I just walk with a regular gait (well as regular as before). I just go and there is no spasticity or feeling of “about to cramp up”. It is better when I get up from lying down. Also I have noted that I literally have a fear of putting weight on my big toe and pushing off for most of the day when I can feel the “cramp feeling” emerging. If I break through this “fear” to the next millimeter in my gait, I can get through with proper stride, but half the time my nerves are so tense in fear of the spasticity kicking in that I “can’t” get to the next point of my gait without the spascity kicking in.

3 weeks ago, I had this ‘fear’ even walking in the shallow end in the pool and it would kick in, so I would literral keep my foot off the ground. Now I am running in the shallow end with no ‘fear’ with my old gait. That’s why I THINK I might be able to get back into where I was back as late as Sep/Oct. Right now it is like I have “introduced” a pause in the gait to assess if I will cramp and if I don’t then I roll forward, but literally the action of doing this is initiating the cramping up.

13

I may have missed it in your description, but my assumption is you have a patterned response when it kicks in with the rate limiter being at the ankle/foot from gastroc-soleus tone?

A word (or two) of caution on Botox is that while it may help with spasticity reduction its focal effect on injected muscle group(s) will profoundly weaken the muscle …

It shouldn’t. I consider muscles weakened by botox a failure. Yes, some muscle atrophy and weakness over YEARS of repeated injections will cause some weakness (which we accept as a tradeoff if that weakness does not cause any functional impairment. In treating spasticity/dystonia, the goal of botox is to reduce the abnormal muscle activity, and NOT to weaken the muscles. I have made a patient’s muscles too weak once. He never came back to see me. It was unfortunate. I have injected hundreds of muscles successfully without causing weakness. Cheers.

Sorry to digress and hijack the thread a little bit, but I want to make sure we are not giving incorrect information to the OP.

14

I may have missed it in your description, but my assumption is you have a patterned response when it kicks in with the rate limiter being at the ankle/foot from gastroc-soleus tone?

A word (or two) of caution on Botox is that while it may help with spasticity reduction its focal effect on injected muscle group(s) will profoundly weaken the muscle …

It shouldn’t. I consider muscles weakened by botox a failure. Yes, some muscle atrophy and weakness over YEARS of repeated injections will cause some weakness (which we accept as a tradeoff if that weakness does not cause any functional impairment. In treating spasticity/dystonia, the goal of botox is to reduce the abnormal muscle activity, and NOT to weaken the muscles. I have made a patient’s muscles too weak once. He never came back to see me. It was unfortunate. I have injected hundreds of muscles successfully without causing weakness. Cheers.

Sorry to digress and hijack the thread a little bit, but I want to make sure we are not giving incorrect information to the OP.

No this is all good info. Please keep the discussion and debate rolling as it is helping me understand the options when I go back to see my docs. From what I understood, the Botox would initially weaken the area (which is the point of doing it) and help it deal with the local over reaction and then in due course build it back with proper “connectivity/firing pattern”.

OK, off to the pool. At least I can be a yardage hero for the time being which is keeping my morale from a total nose dive but already some of the discussion on this thread has been very helpful in putting me in a better head space. At times, you feel fairly isolated with not that many knowledgeable people to speak to about this type of stuff in an athletic context and the picture painted is doom and gloom.

15

OK, change “will” to “can” and place it in the context of an athlete wanting to get back to running and the mechanical impact of lowering output from the gastroc soleus or any other lower limb group. This is not to mention that several lower leg local injections will likely not altered his centrally driven patterned response (quads, adductors…), so there is a lot to considered here. I deal more on the backend of this problem and it is my experience that some decrease in force output is always present (it’s simply inherent to the MOA); the magnitude of that we can debate and to your point can be minimized.

Cheers

16

I would like to offer a small but very substantial update to those who have chimed in on this thread.

In 2012 when I first started walking and jogging, I found my body was getting 'sucked over" to the right side of the treadmill. At the time, I thought it was a leg strength/push off thing, but as i had many mangled body parts plus I still had substantial daily post concussion symptoms, I could not really “debug” what was going on and this persisted for a long time. Even though I advanced and proceeded to running and racing that summer, I was still doing this and did not really know it, and frankly could not figure out how to fix it…just resorting to the fact that push off with left leg was “weak” which it was.

But the reality is that at masters triathlon speeds, the push off with the big toe is not “that huge” (albeit important). I was in the Muskoka 70.3 Sep of 2012 and realized my head was “stuck” over the right half of my body. This 14 lbs weight never got over the left leg on landing/compression. When I was a kid I used to run the hurdles until 15 after which i stopped growing and the hurdles went from 36 inches (must more than my inseam) to 42 inches (yay higher)…but that’s not the point. The hurdler has to really lean forward and get the head over the leading leg and land with the head over knee and big toe. It was interesting doing this “debugging on the fly”. Suddenly I was running way faster simply by unlocking my head from the right side and having proper weight transfer.

Well at some point this morning, I realized that my head was locked over the right half of my body. How I reverted to this I am not exactly sure, but I think when I injured by big toe (black toenail) and also hurt the 1st metatarsel in a swim to bike “step on a rock incident” I subtly reverted to the that “learned movement” post 2011 accident.

I suddenly found that I am walking around the house with 70% (or more) less spasticity feeling, simply by transferring my weight to the “bad side” properly using my head where it should go and not leave it hanging over the right side of my body at all times.

I am still thinking through the drug intervention path for a few more days and still working on the ART, accupuncture, Spinal Adjustments and alse have added some decent calf stretching at the eccentric loading phase of the stride (front end, not push off side). Yesterday at work, I made it from my office to the cafeteria and back just “carrying my crutches” rather than using them and also made it from car to pool deck “just carrying” the crutches and walking slowly. This is better than even mid December, where most days I could not go 1-5 steps without it kicking in…so for now baby steps (literally…I think I have to just lean forward like a baby and start falling forward and have my legs run and catch up underneath me LOL!!!)