Status Epilepticus

[Dawn43]

Ive seen this noted on my gp's computer but i havent been told officially or had it stated on discharge letters. When i had my last seizure, I fell unconscious before shaking for around 20 minutes as ive been told, not waking up for several hours.

Almost 2 weeks later and i still dont feel right.

Being in the house all day on my own, Im worried about having a seizure and not coming out of it.

2 and a half years and 4 seizures, Im in the dark about whats causing them, what damage they cause, what type of epilepsy etc. I havent been told anything.

I was kept in hospital overnight to have an mri the following day only to be told it wasnt needed as nothing would have changed.

The last mri i had was july 2022, so theres bound to be changes.

Today im nodding off regularly, dizzy and disorientated.

Has anyone else gone into status and how has it made you feel?

[RR25]

Hi Dawn

Following on from your previous post, did you get speaking to the epilepsy nurse? It would be good to chat to her/him about information you feel you need more clarity on. I.e discharge letters and your status seizures.

🤞🤞🤞

[Dawn43 in reply to RR25]

I spoke to her briefly last week to ask if she could find when SE was recorded on my hospital record. I havent heard anything yet. Also emailed GP to ask them to find it, again I havent heard anything. Ive got an appointment with PALS today to see if they can find anything out for me. There are other concerns as well, such as no ct scan or mri with this latest seizure, considering it lasted around 20 mins and almost 2 weeks later I still dont feel right, lot of headaches, dizziness and tired all the time.

It seems to have affected my ears too as hearing is muffled. Its Probably aggravated my tinnitus.

[RR25 in reply to Dawn43]

The thing with Epilepsy and Seizures is they do not scan a person after every seizure due to the fact its electrical activity causing the seizure. That does not show up on mri or CT. Its EEG's show that. However, if you feel you something isn't quite right following the SE speak with Gp or epilepsy nurse again. You could maybe see if your epilepsy nurse could see you in person so use can have a good chat, even for reassurance for yourself?? Particularly around the SE, what it is etc x

Take care

[Dawn43 in reply to RR25]

Thanks for replying. Ive noticed since the weekend, my left fingers have gone tingly and numb at least half a dozen times, each time lasting for a few minutes. Once, the left side of mouth went the same. This hasnt happened after previous seizures. Frustrating and worrying 😟

You take care too

Xx