Baclofen fun

Well it’s the new year (happy new year!) and after over-indulging over the festive period, my thoughts have naturally turned to new year’s resolutions. Normally it’s something to do with losing a bit of weight and becoming fitter, even if it’s just a little bit fitter and being able to take my belt in a notch, or maybe even two notches if I’m lucky.

I’m not talking about joining a gym or going on a crash diet, because that’s just not me. It’s not something I can sustain or commit to. I know I can shed the pounds I need with a few sensible lifestyle changes. I’ve done it before, and that’s what I intend to do.

Also, the trouble is, I’ve come to the realisation that if I need to get fitter I need to build up some strength in my wobbly legs first.

There’s a brand new branch of the co-op just over half a mile from where I live. This has provided a good excuse to nip out for any supplies we might need. The co-op is about as far away as other local shops, but the walk involves a traverse of a local park so it’s much more pleasant and enticing than nipping to the local Spar or the Morrisons supermarket. If we run out of milk, or if I need some green pesto (co-op do a very good pesto), I treat it as an excuse to get some fresh air and a change of scene.

By the time I get home, though, I find it becomes a real effort to coordinate putting one foot in front of the other, my legs will be in the process of turning to jelly and I’ll clumsily fumble with my shoelaces like a crap Houdini once I’m through the door.

The truth is that I can barely walk a mile these days without the need of a ‘good sit down’ straight afterwards. This is a far cry from the five miles I used to run around the neighborhood until relatively recently, or the eight miles I used to walk every day while working in the east end of London some 15 years ago. When that mile is up, I’m already off balance; I feel like I’m leaning forward, waiting to collapse into the friendly welcoming arms of my sofa.

And it’s not just walking: I went to see one of my favourite bands – Mudhoney – in Leeds towards the end of last year and spent most of the gig worrying about my ability to stand up for long periods, only for someone else’s legs to give out in front of me.

So what’s the big difference between then and now?

Like any human being looking to lay the blame fairly and squarely at someone else’s doorstep, I’ve laid the blame at the doorstep of Baclofen.

Baclofen is a muscle relaxant that I take a couple of hours before bedtime to alleviate nighttime leg spasms. These spasms can literally kick me awake in the middle of the night and then repeat on a cycle every 20 to 30 seconds over a period of an hour or two. On the rare occasion they don’t kick me awake straight away, they’ll kick my wife awake who then obliges by throttling me into the world of consciousness.

Initially my dosage was a single 10mg tablet, but this stopped working as well as it had in the past and I upped the dose to 20mg towards the end of last summer. Over the last month or so I’ve noticed that the 20mg dose had stopped working as effectively, and now, when I wake up in the middle of the night for whatever reason (and I wake up every night), I know I’ll get a spasm by the time I count to 20.

I rang the MS nurses for advice. Should I seek an alternative drug? One that will not only prevent the spasms but also not cause the muscle weakness during the day?

Well, the short answer to that question is ‘no’. I seem to be prone to side effects, and they all have their side effects.

Twenty milligrams is also still quite a low dose and I can apparently increase this to 80mg if I need to. The leg spasms could also be kicked off by factors other than the medication losing its efficacy, or disease progression (my other worry).

Questions that the MS nurse batted my way included whether I’d had any infections… None that I knew of, although, being a catheter user, I could have had a mild infection without being aware of it. Also, I’d come down with a heavy cold in the previous 48 hours.

Also, have I had any major stresses? As I can confirm from my relapse history, stress can apparently influence MS as strongly as any infection.

Apart from my dad dying a month ago, his funeral occuring a couple of days previously and Christmas in the intervening period, I had no stresses that I could recall at all. Maybe the normal day to day stresses of being a parent to one teenager and one nearly-teenager, and being married to someone who takes a not unreasonable dislike to being kicked awake at 2am, but hey!… apart from all that, life is generally sweet.

The upshot is, I’m increasing my dose to 25mg until life gets a bit more tranquil. I’m starting to introduce more gentle exercise in my daily routine and I’m keeping a close eye on any changes for better or worse. Hopefully, when things are a little more settled, I can reduce the dose down again.

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2 thoughts on “Baclofen fun

    • Hi. It’s not the stiffness so much as the spasms with me. I can feel the build up as well as the spasm. I haven’t started taking baclofen during the daytime even though I often get episodes during the afternoon which render me useless until I go and stretch somewhere. But, yes, it’s a delicate balance.

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