The other week I had my now-annual clinic appointment in London at the National Hospital for Neurology and Neurosurgery. This was a telephone appointment, so I didnt actually go to London.
I had three questions which I wanted to ask about this year.
Baclofen
At my previous appointment we had talked about baclofen, and as I noted earlier this year I have now started taking this. I was asked if it was making me drowsy. Now, I have been noticing that I've been feeling more tired recently, but I had attributed this to not getting enough sleep, and needing to take more effort to move about. It means that there is another factor which I need to bring into this consideration mix. I reported that I am on 10mg per day, and that I have noticed a difference in some of my stretches, with them becoming less difficult to do.
The question I asked was around trigger points for increasing the dose. The answer was that there are no specific triggers for increasing the dose. It was observed that some people take a dose just before bedtime to reduce spasms and similar in the night. We talked around when I take my dose, which is first thing in the morning, and it was noted that it was beneficial to take the dose before stretches. This is just coincidence, but that happens to be the way that my morning works.
It was noted to me that some people schedule an afternoon nap into their day. I need to reflect on this and see if thats likely to be part of my future routine. I feel this has the potential to be an interesting conversation around reasonable adjustments, particularly for days when I'm in the office.
Talking Therapy
I have recently been finding several aspects of life quite tough. One of these is the increasing realisation of my future self with my reducing mobility. I asked if there were any specific types of talking therapy which they would recommend for people with HSP. The general advice was no - it was commented that CBT (cognitive behavioural therapy) can be useful for some, and counselling with someone who is not a medical person can allow a free-er conversation because it is not 'just' focussing on the medical aspects of HSP.
Occupational Therapy
My third question was around when might be a good time to see an occupational therapist. Occupational therapists are arranged through your GP, and that is the route to access. The suggestion was that it might be worth getting a home visit from an occupational therapist so that they can see what you struggle with, and for this to be done sooner rather than later. It might be that the occupational therapist doesn't recommend any changes to start with, but you'd at least be on the radar.
For me, I've most likely got a house move coming up soon, so this is something to consider after I am settled in my new house.
