View my basket

Battling With Baclofen (for Spasms)

The Great Spasm Struggle

As I’m sure many of you reading will attest – spasms are one of, if not the most, infuriating side effect of spinal cord injury. Beginning the very moment I wake up and roll onto my back, these unannounced muscle tremors stay with me throughout the day. They predominantly present themselves in my legs. Going for a push outside, there’s a near-guarantee that, the moment my casters get so much as a whiff of a bump or lump in the road, my feet will start tap-tap-tapping their way off the footplate until they’re dangling off the end, waiting patiently for me to reposition them so they can start the game again. Conversely, if I sit in one place for too long, my legs will become incredibly tight, resulting in a good old kick about the moment it comes to shifting. It very much feels like a “damned if you do and damned if you don’t” scenario. And the only answer to any of this seems to be an encouraged dependence on prescription drugs!

a gif of legs twitching in spasm - a real issues for many with spinal cord injuries
No wonder my smart watch keeps telling me I’m doing 100k steps a day!

The Beginning of Baclofen

By far the most popular of these drugs is the muscle relaxant baclofen. I started taking baclofen way back during my time in rehab. It was a staple in the grab-bag of pills we were each given throughout the day. I can’t recall noticing much of an effect initially. It certainly didn’t stop the spasms outright, but I was still very much recovering and coming to terms with my injury, so perhaps it was just taking a while for my body to adapt. In the meantime though, it couldn’t hurt to increase my dose…

A packet of baclofen tablets for reducing spasms.

…and increase my dose…

A pile of baclofen tablets (for spasms) showing how easy it is for medication levels to creep up

…and increase my dose…

An even bigger pile of baclofen tablets

After a few years it had got to the point where I was taking 3 tablets on a morning, 3 at lunchtime, 3 in the evening and 3 at night. A grand total of 120mg a day, a figure I didn’t realise at the time was well above the maximum daily dose of 100mg. Of course, I had experimented with other meds for spasms – dantrolene, diazepam, tizanidine etc – but they all came with the very noticeable side effect of making me either feel horribly unwell or incredibly drowsy. The only time I was ever aware of a side effect from baclofen was when I missed or was late with a dose and a prickly kind of throbbing would start in my legs. As soon as that happened I’d pop open a blister pack, and wait for the throbbing to dissipate. Sure, I was still getting spasms on a daily basis, but they’d be way worse without all that baclofen right? The throbbing proved that…

The Prescription Addiction

Addiction to medication is a real issue for many with long term disability

Whether you’re watching a TV show like House, streaming non-fiction dramas like Dopesick and Painkiller, or scrolling through spinal cord injury groups on social media, the message is clear – having a long-term reliance on prescription medication is not healthy! I’m not exactly sure when this concept first implanted itself in my brain, but at some point in the last year or so I started to really think about it:

12 pills a day… 

adds up to

84 pills a week…

adds up to

360(ish) pills a month…

adds up to

4,380 pills a year!

Over the span of a decade, that’s close to 45,000 pills?! And I’d been taking them in various quantities for nearly twice that long. Something had to change.

Reducing The Juicing

At my next spinal injury check-up, I voiced my concerns to the consultant, Dr Henry. This included lamenting how I wish I’d taken the opportunity to go cold turkey during lockdown, at a time where I could have attempted to ride out the withdrawal effects from the relative safety of my own home. Dr Henry suggested the weaning off method; a gradual reduction of 1 pill a week to see how my body handled it. This seemed like a fairly reasonable approach, and one I could easily monitor. 

So the following week I began this little experiment, and down I went…

    From 12,

        To 11,

            To 10, 

                To 9,

                    To 8,

                        To 7,

                            To 6,

                                To 5,

                                    To 4…

I was flying! By reducing one of my four daily medication doses each week, I’d gone from taking 3 pills 4 times a day to 1 pill 4 times a day, a reduction of 8 pills per day. And my body wasn’t reacting any differently! I was still getting spasms, but they were no worse than I’d been getting for the past 18 years. 

“I’ve done it!”, I thought. The cycle was broken! Four weeks from now I would take my final baclofen pill and then be free, forever!

a scene from a movie showing someone about to inject drugs

Famous last words.

A Dose of Reality

I very quickly discovered that it was one thing to cut down the baclofen in each dose. But another thing to remove a dose entirely. As soon as I tried taking out either my lunchtime or evening pill, I noticed my body responding in an all too familiar manner; with a prickly, throbbing feeling encompassing my legs. Not only this, but there was a noticeable increase in my spasms during that gap. My legs wouldn’t stay still even when I was sat at my desk, and my torso was also tensing up. Transfers became far more complicated, took far longer and, although I managed not to face-plant during this period, it wasn’t for my body’s lack of trying! After a couple of weeks I had to admit defeat.

Cartoon of Snoopy lying on his back with a thought bubble saying 'I surrender'.

Fast forward a few months to present, and I’m maintaining a comfortable balance; allowing my body its singular baclofen fix at 4 steady intervals throughout the day. It may not be the out and out purge I was hoping for, but it’s still a vast reduction. And I’m certainly not ruling out the possibility of trying again at some point in the future, so if anyone has any tips or advice on the matter then please leave a comment and let me know!

The main thing I’ve learnt is that a bigger dose doesn’t mean better results. I’ve no idea what those extra 80mg of baclofen I was taking each day were doing inside my body, but they certainly weren’t helping it! Just because you’ve been ritualistically taking something for years as part of a daily routine post-injury doesn’t mean you have to continue doing so forever. Talk to a specialist about it and see if you can wean yourself off. Don’t allow prescription medication to become a mental crutch as I did. If your body doesn’t need it then your brain doesn’t either!

a cartoon where is doctor is prescribing one giant pill of combined medication