Symptoms update - Baclofen

I have now started my journey with baclofen.

When I visited the HSP clinic at the National Hospital for Neurology and Neurosurgery last year we talked about when it would be appropriate to start taking baclofen. The discussion concluded that it should be when I start finding things really difficult.

I realise that "really difficult" is a very subjective term, but in the last few months I've been finding that my calf muscles stay tight a lot of the time, that some movements are becoming more difficult (including some stretches), its getting a bit harder to put my socks on and trim my toenails, and I'm getting a little discomfort in my legs. I decided that these things added up to being "quite difficult", so I thought it was time to start my baclofen journey.

The letter from the hospital suggested starting on 5mg every other day, and my conversation with my GP talked about titrating that dose up to 10mg per day, via 5mg every day. I spent just over a week on 5mg every other day, and a similar time on 5mg every day, before moving to 10mg per day. I have now been taking that for a few weeks.

I am taking my 10mg in the morning. This means that I am now on three regular medications - baclofen and oxybutynin in the morning, and oxybutynin and citalopram in the evening.

I had heard that many people get unpleasant side effects from baclofen. I am pleased to report that I dont seem to have any of those.

So, the key question is - am I noticing any difference? - I think that the answer is yes. Those stretches which were becoming more difficult are now more or less back to where they were. This means that I can still feel each stretch, and they are doing the same tasks, but the additional discomfort has gone. I've not really noticed any other differences.

I'm going to keep at 10mg per day until my clinic appointment in October where we can review this.

However, I have also made one other change at the same time. I purchased a foam muscle roller, and I use this every evening to give my calf muscles a bit of movement. This gets the muscles moving, increase my mobility and helps release some of the spasticity built up over the day. So, it is not clear whether it is the foam roller or the baclofen which is helping most. 

My foam roller looks like this - it is 45cm long and 15cm in diameter.