Life the last few months have been tough.
So after the usual small seizure activities, which I'm completely aware of, things has stepped up.
I was in my front garden watering the plants with the hose pipe, which wasn't on, just standing staring into space , and luckily enough my wife was around and with concern got me into the house, I was having a absence seizure. I was confused and pretty much didn't know what was happening. Nor did she initially. Struggling with words and confusion, emergency services was called.
I was taking to hospital , and on route I had a Grand Mal ( Tonic Clonic ) seizure. Which lasted 3 minutes or so. Apparently very scary to watch by my wife who was in the ambulance and had to help with the whole keeping me safe and holding me down with the paramedics etc as was lashing out etc.
So 1 week in hospital and regular monitoring, increased dosage of steroids and anti seizure meds, I was released.
Further more on Friday I lost the feeling fully in my left side, again ambulance called, I failed the FAST test for a stroke twice, and a suspected stroke was on the cards. Drooping left side of face, complete loss of left side, slurred speech, confusion etc.
On arrival at hospital, a stroke was ruled out and another seizure was diagnosed.
I got discharged on Tuesday night, again increased steroids and anti seizure meds.
I was meant to start cycle 5 of chemo on Monday, but has been persponed for a week now. Today both my knees have gone, must be the increased Dexamethasone.
Has anybody experienced this? Last time I was on on a high dosage, I was the same, struggling with sleep, increased, leg weakness etc.
Chris
Hi Chris
so sorry to hear about all you've been through recently.
G suffered from focal seizures at points during his journey. I suspect they are similar to the absence seizure you describe. His trigger that one was approaching was that the hairs on his arm all stood on end. They would last anything from a few seconds to 20 minutes. I was advised to call for help if any lasted over 5 minutes.
Like you they upped the dex and the keppra and to be fair it kept things on a pretty even keel for a few months. He never suffered from leg weakness due to the steroids but he would eat everything in sight. He also developed steroid induced diabetes due to the prolonged high dose he was on. The dex interferes with sleep patterns so make sure you take it no later than lunchtime to try to help with that.
If there are aspects of this that are worrying you, talk to your medical team. They are the ones who know your personal situation best and are best placed to give advice. They'd rather you asked every question in the book than were fretting about something. There's no such thing as a daft question.
For now though I'm sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
