Wow. It’s been ~11 months since my last update. More or less a year.
My last post was about some new meds we were about to try…. And I’m writing this post around two weeks after I stopped taking those new meds…
Thats not a coincidence! Here’s what’s been going on.
Let start at the beginning. Back in November 2022 I was put on an anti-spasm & nerve pain medication called gabbapentin.
We tried the gabbapentin to test a theory that my mobility issues where due to a cycle of spasms, which in turn where caused by a nerve injury.
This was the opposite of the previous diagnosis, which attributed my wobblyness to a spinal cord injury called Cauda Equina Syndrome.
It seemed worth a go. If the meds helped, then perhaps we’d be on to something. So we gave them a go.
The meds worked rather well. It started with a few months of neck and shoulders weakness … but after a few dose changes and experiments, we found a fairly good pattern. I was still hecking wobbly… but I could walk a bit… and it was less painful.
For example, on a great day, after ample rest, in a place I know well & with a flat floor… I could walk maybe 30 meters or 100ft. I could, kinda sorta run, ish. For a bit. I even did a few bus rides.
Mountain biking got much easier too. The burning stinging pain in my sides completely stopped. I could ride my adapted e-bike much more comfortably. Stood up or sat down….
BUT The brain fog. The brain fog was an issue from the first dose.
After a few weeks it had mellowed slightly. The fog would peak in the morning and then settle down by mid afternoon. We experimented a bit and landed on a pattern which worked well in exchange for a near constant low level brain fog.
The fog is different to being spaced out. The main thing is about details & capacity. I just couldn’t remember stuff as clearly or make connections as easily. I couldn’t hold as much in my head or get as much done.
I’ve been busy with lots of client projects, working on financial crime prevention tools and doing talks and events. I’ve even been taking virtual flying lessons and prepping to start proper flying lessons in the future….
But… all of it with a subtle, slowly building brain fog.
I never, quite got around to writing a blog post. I’ve been on Twitter less, slower at emails. Writing just got harder.
We tweaked my ADHD meds a little to try and counter the fog.. but that led to bigger crashes. Back in February my flatmate moved back out. We just couldn’t make it work… too little space and to many competing needs.
I also met another doctor who suggested a new medication. One which prevents pain from causing spasms.
We added that drug to the mix and it worked well, but made the brain fog even worse. It was only useful on bike riding days
It wasn’t working. It was time for a rejig.
With all the meds changing I’d lost track of my baseline. I couldn’t remember how life was before the meds had started.
The brain fog started with the gabbapentin, so my first goal was to come off the gabbapentin.
However, the ADHD meds weren’t working well, so I paused those too. I also stopped the new movement meds.
I tapered off the meds slowly and then had about a week with no meds at all. A tricky week for sure, but we made it work.
In the last few weeks I’ve slowly restarted the ADHD meds and then added the new movement meds today. Essentially, I’ve got rid of the gabbapentin and restarted everything else.
So far, so good.
The ADHD meds are working well. It’s been a gentle start at a low dose. The low does is working well, so I’ll leave them low for now. I’m on about half the dose and it lasting just as long. Win win.
The new movement meds are different. I still have the tailbone pain. But the pain doesn’t make me as wobbly. I went for a short bike ride today… a big improvement over yesterday.
I’m not sure what’s next. For now, I’m keen to keep it simple. If I can make my life work with a low dose of ADHD & movement meds that would be nice. Ideally without the brain fog.
It’s been a strange year. The gabbapentin was useful as it proved the theory my wobblyness has a non spinal cause…. But it’s not the right drug for me.
I’m finding it easier to write as the brain fog clears. I’m hoping to be blogging more. I’ve missed my blog and I’m glad to be back.
We’re rapidly approaching 3 years since my injury. We’ve had amazing successes all in.
While It’s not a journey we chose, we’re making it work. We’re always exploring new options and I’m excited for what the future holds.