Seizure City......

Hi everyone

thought I'd give you a quick update on this week. 

I'll backtrack slightly here. Two weeks ago tomorrow G set off on a hair brained outing with his friends - they had hired a tandem bike and with him on the back, cycled 100km. Two ot them stayed overnight in Edinburgh and while the others brough the bikes etc back. He came home on the train on the Sunday. By Sunday night he was a bit off but I put it down to fatigue.

On the Monday he had a couple of "wobbles" where he would zone out for a minute or two - a bit like a computer going into powersave mode. The frequency of these increased and by last weekend we were up to around 10/12 a day.  I called the hospice nurse first thing on Monday morning and she came out to see us within a couple of hours. He had two "wobbles" while she was in which was good as it meant she saw first hand what was happening. She described them as focal seizures. Having reviewed his Keppra levels she upped it to 1g per dose and said to keep an eye on him over the next few days. By the end of Monday, he'd had 15 plus seizures and the frequency increased on Tuesday.

First thing on Wednesday morning I messaged her to say the frequency and intensity was increasing even on the higher Keppra dose. Within 15 minutes of me sending the message, he had a major focal seizure and was pretty much unresponsive for 20 minutes. Scared the XXXX out of me! I called the hospice and they advised to call the community nurse to come out to administer Midazolam from the "just in case" box. The community nurse was out within 15 minutes. He was still groggy but was starting to respond by the time she arrived. She only gave him a half dose of the Midazolam. He had another seizure while she was injecting him and another just as she was packing up. On her advice I gave him half a Lorazepam to calm him down. 

As you can Imagine I was a bit of a wreck by this stage. I messaged my daughter to update her and she called to say she was on her way home. (She was at work an hour away). In that hour, the hospice called back and said they wanted me to bring him in. That totally pulled the rug out from under me.  I was crying so much I had to say I'd need to call her back. 

Long story short, I got it together, told him what they wanted him to do and much to my amazement was met with little resistance. I packed his bag and shortly before lunchtime he was admitted for a couple of days.

Wednesday and Thursday were two of the longest days on earth.. Yesterday was tough. Sitting there hour after hour trying to make conversation when half the time he's talking nonsense or stuck on repeat was soul-destroying. By the time we left for the night at 8.15pm I'd watched him have 26 seizures.

They've tweaked his medication a couple of times over the past couple of days before they allowed him to come home earlier today. He's now maxed out on the Keppra dose (1.5g per dose) and up to 8mg Dex....and he's still seizing about every 20-30 minutes although the intensity of them today is less. The longest so far that I have seen was about 2 minutes...and of course it happened while I was driving us home!

So now we watch and wait over the weekend to see if the higher drug doses settle things down.  The doctor said to me yesterday that this could be as good as they get him and cautioned that this could all end "quite spectacularly" with little notice. I get it. 

He's said repeatedly for the past couple of weeks that it was time he was dead. He's had enough. Listening to him saying that is hard..oh so very hard. 

His key focus now that he is home.....he wants to go for a run tomorrow morning! We'll see how that goes.

He's already escaped out for a "short walk" and was gone for 2 hours and walked about 7/8 miles!

Potentially a daft question but has anyone else seen this happen?

Oh and the Lorazepam that was meant to calm him down,... well it did the exact opposite. Seems he had what they call a paradoxical reaction to it and he was hyper till it wore off!

Here's hoping for a calm weekend...I'll not hold my breath.

Stay strong everyone!

Love n hugs

Wee Me xx