EXPERIMENT: Is propranolol an effective therapy for MND clonus?
CONCLUSION: Yes, but optimal dose yet to be determined.
Non-selective beta-blockers such as propranolol reduce the effect of adrenaline throughout the whole body, whereas a selective beta-blocker such as bisoprolol focuses its effects on the heart.
I initially suggested to my cross-disciplinary network of clinical-care specialists that I try bisoprolol. Being a selective beta-blocker, it has less side-effects, so is a good first-line approach to try. However, bisoprolol seemed unlikely to have much impact on my leg muscles – only my heart – and so it turned out. Despite titrating up to 5mg a day, it had no noticeable impact on my clonus.
I then suggested we try propranolol, which is generally well-tolerated, and which also has long been used to treat a form of uncontrollable shaking known as Essential Tremor. This worked much better. Indeed, for me its effect was instant, transformative, and sustained.
I started on the lowest reasonable dose – 30mg a day (one 10mg tablet every eight hours). Not only did this low dose immediately cut down the number of times my clonus was triggered by external stimuli, but it also appeared to reduce the degree of clonus itself. For instance, I found that with this dose of propranolol I could sustain a particular level of activity on a recumbent bike with no clonus; without propranolol, I could not. Consistently. It is a nicely objective measure.
It may turn out that this very-low dose is optimal for me; it has a significant effect yet carries no discernible side-effects. However, it would be quite a coincidence if this very first experiment happened to produce the best possible result. So, I am now experimenting with double the dose, 60mg a day (two 10mg tablets every eight hours). I am aware of slight tiredness, which is a very common side-effect. But this may go away completely once my body gets used to the higher dose. It does appear to reduce my clonus even more than the lower dose. So, an optimal dose may turn out to be a trade-off between efficacy and side-effects.
The experiment continues…