Appointments at The Maudsley today.
With N we discussed plans to be more methodical about recording seizures and medication. I suggested I should use the two technological solutions that I have been working on, which provides another motivation to finish them.
Dr R was pleased I had re-started Lamotrigine a few months ago, and recommended I up my dose by 25mg. When I arrived home I realised I had made a mistake in relating my doseage: I have been taking 100mg, not 40. Decided to up the dose by one tablet this evening anyway, since I had missed a few and we had discussed therapeutic doses as being much higher. On reflection, I should stick with his advice of 25mg as he emphasised the word ‘slowly’. It means breaking the tablets in half, but no matter.
When I talked about work, he said the main thing was to concentrate on getting better and reducing the seizures. We didnt discuss SUDEP and deterioration but I guess that’s a factor. Writing this down in my blog helps me to remember this and overcome the guilt about work being slow.
At the end, we talked about all the things I am doing to try to improve my quality of life and reduce the seizures. “You’re the one actually doing this, you know” he said. “You’re the one who should take the credit”. I was a little stunned.
It sank in after I left his office, and I had a little cry in the waiting room – just a few seconds – a little emotional about having my struggle and achievements recognised. It doesnt happen very often.
I was so happy about, I told Mum about it when I rang her to wish her a happy birthday again. The view from Blackfriars when I changed trains was also inspiring.
But the pain got a bit much by the time I reached St Pancras again, and it was then that I noticed a bit of sensory overload; I became unable to focus on anything, and all the people moving around me in the station seemed fuzzy as a shoal of fish. Then my legs started going up and down too much to walk properly (I had been doing so well before, too) and just before a rubbish train started beeping me to get out of the way, I had become transfixed and confused – outside John Lewis as it turned out. People noticed and asked me if I was alright, and I could hear them but it was difficult to answer, my words didn’t come out very well.
My words started getting better a bit later. Thats when I realised someone had put a stool for me to sit on, and I was outside John Lewis. I thanked the people for helping me, and wobbled off, glad for the Taga to hold on to.
Was it a dissociative seizure or an epileptic one? I had forgotten to put on my Empatica E4 in the morning rush, so I can’t really tell.
Tricycling home, my patella subluxed, but after getting off and hobbling, and cycling a little bit further on the flat, it went back in, thank goodness.
Little Brussels was pleased to see me when I got home.