Advice needed

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 scared of what may happen next time I have a fit. Thanks

5 Replies

  • Hi Jenny25,

    I'm sorry to read about your severe seizure experience. I went into Status Epilepticus 4 times when my epilepsy was at its uncontrolled worst! Not a good idea!! As you know, we can't say the seizures themselves were frightening as you, yourself, know nothing about them at the time - much more frightening for friends or family seeing it happen!!! However, getting the news when you come round definitely IS scary!! My "normal" seizures were very frequent at the time and I couldn't work out for certain if there was anything specific that sparked off the Status Epilepticus ones although I am pretty sure that mine were stress related. Fortunately, my ordinary seizures have now been under control for almost 4 years now so that my stress levels, overall, are very much reduced. I know my circumstances are different from yours so I don't know if I can really contribute much your question. I do know that the one thing I was told at the hospital was to make sure that my friends and family knew how to know if a seizure was "turning into" status epilepticus and that they knew that this definitely needed medical help asap.

    I hope that your experience was a one off - I'm sure it could have been - and that you can get back to feeling less nervous about it all.

    Perhaps some of the others on the forum can add more form their own experiences that may be more relevant than mine.


  • Hiya i think the older you are getting the worse its getting coz as you get older your body changes n life changes stress n daily living you can get control with different types of medication it sure doesnt help when you are tired n under stress my first seizure was a grand mal it put me in

    Intensive care for 3 weeks it wldnt stop and every year it got worse and more of them i was 26 at the time am now 41 and last december done the best thing ever and had neurosurgery been seizure free 9 months its fantastic i think a good mix of tablets and watch the stress levels you most prob have good control or one or two good luck :-)

  • Hi Jenny. I'm sorry, I probably won't be able to help much as I've never been into status epilepticus, not even when my epilepsy was at its worst and I was having tonic-clonic seizures almost every week. However, what does strike me about your story is that it happened after a busy activity holiday. My recent seizure (my first in 7 years) also occurred 3 days after returning from an activity holiday during which I put my body through strain I wouldn't normally reach. Perhaps physical strain and exhaustion are triggers which are not very well understood?

  • Hi there,

    Do you think it might have been the (physical) stress from the activity holiday? Whenever I have periods of more seizures than I normally have it often coincides with some sort of big change in my daily activity or change in environment, especially if I have to travel (jet lag etc.).

    Hopefully its something simple like that. I'm blessed and cursed with having a very localised epilepsy so I stay concious during the seizure. I know how frightening it is when I start to have a seizure which is worst than my normal seizures or when I haven't been expecting one but I've never gone into Status Epilepticus before (thankfully).

    Best of luck and hopefully its a one off.


  • My seizures weren't diagnosed until I was in my 40s. I never had status elepticus, but my seizures were controlled with Lamictal when I was 47 and they haven't returned for 17 years.

    I take everything doctors say with quite a few grains of salt. It's my experience very few of them know much at all about epilepsy. Epileptologists undoubtedly know more, but even for those I've spoken with, it's still quite a mysterious condition.

    I agree with other commenters; if you monitor your body, you'll be able to get a far better idea of what factors might contribute to seizures, etc. I would definitely keep a journal so you can see if any patterns develop.

    Good luck...

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