New here and hoping for some advice

Hi. I have had epilepsy since I was 12 but was only diagnosed 4 years ago (i'm 31 now). As a result I've been told unlikely to get seizures fully controlled. I have about 4 a year and got used to them as all follow a similar pattern. But in June i had to be admitted to intensive care with status epilepticus after a 2 week busy activity holiday. Ive not been told much about why it was so bad this time or if its likely to happen again so wondered if anyone else had experienced seizures this severe and if it indicated a change in their condition. Im now

2 Replies

  • Hi. I can see your post is unfinished, so I hope there is nothing major missing.

    It must have been very scary having that time in hospital. There are a range of possible reasons why you may have gone into status. And it may also be that there is no obvious reason at all. It is possible for someone’s seizure type and pattern to change over time.

    We aren’t medically trained. But here are some thoughts:

    •You may have missed some of your epilepsy medicine.

    •You may have been feeling particularly tired or stressed.

    But the best thing would be to ask your specialist directly why they think it has happened. The answer to whether it may happen again will be related to why it happened in the first place.

    Also I wonder if your doctor has talked about you having emergency medicine? They sometimes think this is a good idea after someone has been in status.

    Here are the links to our information about the things I’ve mentioned.

    Status epilepticus:

    Common seizure triggers:

    Emergency medicines:

    I do hope everything is starting to settle down for you.


    Advice and Information Team

  • Hi, post not finished so not sure what further you had to say. My seizure pattern and timing of seizures has changed over time and years... Stress, tiredness and missing medication are big triggers. From seizures of 35 minutes long, I am petrified of status epilepticus the next time round!

You may also like...