Has anyone been through a similar story?

[chloewirex]

Here's mine and my mums story.

4th January 2020 -

Me and my mum were both up at normal time doing our normal routine, we went into town for a coffee and then we went into a restaurant to order our tea. My mum complained of seeing flashes and staggering backwards, she took tablets for a migraine. A few moments later she then said she could feel shaking coming up her legs and that was the last time she spoke, she started having a seizure that she then never woke up from until 3 weeks later.

She never once had a seizure in the past, they checked for bleeds on the brain, nothing was shown.

Every time they tried to wake her she would react with a seizure.

She was intubated and in an induced coma for 3 weeks and she fighting sedation through the 3 weeks of being in ICU but she couldn't wake up with the tube so she was fitted with a tracheostomy.

She is now on 3 lots of medication which treat epilepsy which she didn't have before this.

We have never been given a proper answer to what was actually wrong with her?

Has anyone been through similar?

Thankyou

Chloe

[Sepsur]

I had a period in ICU where I was fitting as a side effect to an antiviral called gangciclovir ( or something like that) it is used to treat CMV. I had never had epilepsy or fitting/seizures ever before. I had an episode again this summer but this was a vasovagal brought on by extreme pain & low blood pressure. After I discharged home, I had several vasovagals - which look like a fit but aren’t. In my case I contort & often stop breathing for an extended period.

I eventually saw a neurologist who diagnosed what had gone on.

Can you get an appointment with specialist neurologist?

Up until then, everyone assumed I now had a form of mild epilepsy - which I hadnt