Posted - June 2015 in HSPRF News
Medication and lifestyle data
Adam Lawrence, an HSPer from the UK, has now published the results on his blog of his second survey that covers questions relating to medication and lifestyle.
Thanks to the almost 100 people who answered this survey, including 44 from the US and Canada, 33 from the UK and Ireland, 13 from Australia and 7 from Europe. I’ve now put the results up on my blog:
People are taking medication for spasticity, pain, bladder issues and depression and this ties in with the symptoms analysis from last year’s survey. Commonly taken medication includes Baclofen, Botox, Diazepam, Tizanidine, Amitriptyline, Gabapentin and Oxybutynin. Most medication is in relation to spasticity, with Baclofen being the most common medicine taken. Several people are supplementing their diet with Magnesium, and changing their diet to deal with bowel issues and to improve their health.
Stretches are by far the most common exercise/relaxation undertaken and, depending on mobility, other activities include: walking/running/cycling, swimming and physiotherapy. More than 2/3 of survey respondents undertake one type of activity at least weekly. Most survey respondents regularly stretch, which is again related to spasticity, and the majority regularly undertake some other activities to help their symptoms.
Adam said “The thing I found most surprising is the lack of evidence of the benefits of the more common medications for relieving HSP symptoms, particularly Diazepam and Gabapentin (1 paper only each) and Tizanidine, Amitripyline and Pregabalin (no papers). There is some indication that medication for spasticity from MS and Parkinsons can help with HSP, but again there is no evidence. I’m also surprised at the supplements that people take. There were plenty of people taking one or more dietary supplements without being sure that there was any benefit from doing so. Overall, there is little evidence to help people make choices about medication and supplements.”