Results of survey of HSPers

Posted - June 2015 in HSPRF News

Medication and lifestyle data

 

Adam Lawrence

Adam Lawrence

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.

 

Adam writes:
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:
http://hspjourney.blogspot.co.uk/2015/02/2014-survey-results.html

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.”

Comments on this story

  1. Grant posted at 2:44 pm on 4 June 2015Reply

    I have been taking Baclofen for around 27 years I am 67 and wondering
    if I should try one of the other medications.
    I tried a Baclofen pump twice going back a few years ago but the test did not
    work, so I am wondering if Baclofen is not helping me with my walking etc

  2. Ruud posted at 4:28 am on 5 June 2015Reply

    I have tried baclofen but it had no effect on me (only that it make depressive and angry).

    But I don’t hear about the positive effects of cannabis. Because I am living in Holland, there is no problem to get a legal prescription for this. I smoke 4 times a day a cigarette with 0.2 grams of Bediol. This helps me to stay mobile and it reduces the pain I would have because it reduces the spastic movements of my legs. I am happy to share more information if people are interested.

  3. Tim H posted at 10:01 am on 6 June 2015Reply

    I also take madopar, rivotril and ditropane. Now hemp meal on cereal

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