I posted on here a month or two ago about getting an interview to be a Public and Patient Rep for the National Institute for Health Research. Unfortunately, the interview clashed with my six-monthly appointment with my consultant. I really wanted to see him because I’m worried about the effect Fampyra is having on my sleep and the effect taking Clonazepam (a benzodiazepine) for years might have on my chances of getting dementia later in my life. Because I wanted to see my consultant so much, I turned down the interview (after trying and failing to have it on another day).
Then, very bad luck, when I turned up at the National in Queens Square, I had to see a registrar who knew less than I did, rather than my lovely, extremely knowledgeable consultant. The registrar hadn’t heard of the research in the BMJ on benzodiazipines (saying they increase your risk of alzheimer’s if you take them for more than a few days). She also suggested that I might use alternative therapies or sleep hygiene to improve my sleep when I take Fampyra. But my sleep is fine when I don’t take the drug – I know, because I’ve experimented. My sleep hygiene is good already and I think the idea that alternative remedies are going to undo the effects of Fampyra would be worrying if it wasn’t laughable (question: what do they call alternative medicine that works? answer: medicine). We had the conversation about improving my sleep twice because she wouldn’t/couldn’t take on board what I was saying.
It feels a bit like a punishment for all the stuff I’ve posted on here about how it’s possible to see a really good consultant if you’re determined enough. I suppose it isn’t always possible.