Last week I met someone suffering from severe Dystonia. Until then I had no idea what this was like. Arms, legs, head, every part of that person’s body was flailing about, it looked exhausting, never mind painful.
I was told that because so much energy is used up by the continual movement, a high amount of calories had to be consumed daily to try and prevent drastic weight loss.
I looked at dystonia.org.uk and found there were many different types of Dystonia.
There were types listed that would never have occurred to me.
Botox injections are currently used to give the most effective relief from spasm and pain. Occasionally patients question why this isn’t working. When injections are first started, it can take a few cycles for them to become effective. This is because Dystonia can involve a number of different muscles and it may take more than one injection to establish the right muscles.
Starting off, low doses are used to minimise the risk of side effects. Once the cycle is established, showing the patient can tolerate high doses, the level of Botox is increased and the injection may feel more effective.
It may be necessary to try at least 2 or 3 cycles of injections (which can take about a year), to establish how effective the toxin treatment can be.
Dystonia can fluctuate, stress can cause it to be worse. There are different types of toxin to try if this is the case.
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