Posts Tagged ‘epilepsy’

An Update With Some Good News About My Epilepsy

Tuesday, March 13th, 2018

It’s coming up on six weeks since my last ‘full body’ seizures and ‘just the leg’ tonic clonic seizures. Things are going well.

As I noted in my last post on the subject, I have been diagnosed with epilepsy and there’s been nothing since to suggest otherwise. What’s not know yet is what triggers my brain into electrical overload, and that may never be known unless the seizures start up again (something I’d like to avoid). In general my Doctor says I’ve to avoid alcohol, keep to regular sleep patterns, and avoid getting over-tired.

What is not a trigger is ‘bright flashing lights.’ Although this is the classic epilepsy thing only three percent of those diagnosed with epilepsy have photo-sensitivity. If the strobes, lights, pyro, and projection effects at Norway’s Melodi Grand Prix selection show for the Eurovision Song Contest failed to trigger me, I doubt anything visual will. Last weekend’s trip to that show allowed me to road-test the modifications my body has made, and all seems to be in order.

That said my enforced rest has meant that I have lost a lot of stamina, my right leg is weaker because of the twitching and seizures that it suffered, and my left arm is still recovering from secondary injuries. There are some side-effects from the anti-seizure medication (Keppra/Levetiracetam), including fatigue and a touch of vertigo. As my body gets used to the medication I’m expecting the effects to continue to diminish.

Up next are a few more short trips to cover some conferences and music events during March and April. I expect to be match fit to join the ESC Insight team in Lisbon to cover the Eurovision Song Contest in May.

By all means ask how I am and how things are going if we meet, I’m happy to talk about this. Just give me a little bit longer to walk anywhere and I’m not going to be staying out late.

You’ll find a lot more information at Epilepsy Scotland, including first aid advice on what to do if you are with anyone when they have a seizure.

What’s Going On With My Body

Thursday, February 15th, 2018

I had posted this on Facebook, but of course it’s now a week later so is impossible to find. And you wonder why old hands like me prefer our own blogs on our own servers…

TL/DR: I’ll be fine. I’m staying at home for a bit to get the right level of medication in my body, and then I’ll be back out reporting on the real world.

Thursday 18 January, I was rushed into hospital following an unexpected full body seizure/fit and loss of consciousness for 12 minutes. Although discharged the same night with a referral to ‘first fit’ clinic I had a second full body fit the next night and proceeded to spend two nights in hospital for monitoring.

I was released the Sunday afternoon after starting out on a course of sodium valproate to broadly target the seizures – which meant fit number three on the night of Sunday 21st was about a minute long, had no loss of consciousness, and was restricted to the full length of my right leg.

Multiple focal fits followed (restricted to my right leg) as I increased the sodium valproate dose to 300mg twice per day, which first reduced and then stopped the fits, I’ve not had any since Saturday 27 January

Following my visit with the Neurology consultant in the first week of February, I’m now lined up for some more investigations (including an MRI), and I’m in the process of switching to an alternate medication better suited to my symptoms (levetiracetam). The next two weeks will be all about switching over safely, and getting medication and body back in balance. Given the number and type of fits in close succession, there’s no question on the diagnosis.

I have epilepsy.

And once the medications are all balanced, there’s no reason I won’t be getting back on with life as before.