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We want to hear from you: please tell us about your experience of the online community.

Epilepsy

sben

EPILEPSY

I would appreciate if you could highlight EPILEPSY.

It feels like that no one understands epilepsy, and that epilepsy has been forgotten.

I would like you to allow people to voice their true opinions in regards to epilepsy, how people truly cope with epilepsy, and the different types of seizures that people can experience with and in regards to epilepsy.

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Comments

janer1967

Hi and welcome to the community

We have lots of members who have epilepsy and this is discussed on a regular basis

Hopefully you can connect with others to share experiences

atlas47

Hi @sben

I spent over 30 years in the NHS and can assure you that all types of epilepsy is/was taken very seriously. A great deal of research is currently taking place, particularly with regards to children.

I have provided a link to the epilepsy society, helpline : 01494 601 400.

https://epilepsysociety.org.uk/what-we-do/about-epilepsy-society

Please let us know, if we can help further.

Best wishes

Cress

I must admit I was concerned at the lack of knowledge nursing staff seemed to have when my son was born 38 years ago.

Most of them only knew of tonic clinic seizures and I spent three days trying to convince nurses that what my new born baby had wasn't wind.

Even after he had been diagnosed when ever he would have a different type of fit I was seen as a neurotic new mum.

I hate to think what would have happened if we hadn't been able to record his seizures on the first type of video cameras that came out then...we could actually show his neurologist what was happening and have his meds adjusted accordingly.

Most nurses I'd spoken to had never seen anyone have a seizure.

POGGYFLOSS

Hi I have had juvenile myoclonic epilepsy 50 years now started when I was 14 over the years I've begun to realise several things but predominantly that most people don't understand epilepsy partly because there are so many different forms of it treatments for it and effects from it, back in the 70s the consultant didn't talk to me because I was a minor my mother told me I had petit mal there was no such thing as an epilepsy nurse and when the medication didn't work I was accused of lying about taking it and threatened with being taken into hospital in London the nurses would' make sure I was taking it. Now theyjust give me a call talk it through with me well I am so much more adult by now but the neurologist -she finds it understandably frustrating there is no history to find because the hospital I had the EEG done it no longer exists I never had a CT or MRI scan to compare with because they didn't exist either. I Do think there is a stigma but I think there is less of one now than they was back in the 70s my daughter one of my daughters has the same condition and when she went to college the rest of the class just called her twitch!My class I even had it and the school only knew when I eventually told them set a time in made a terrible mess of my own and A-levels I never got round to taking my A-levels because of it. A bit of a lengthy post!

Ria_porter16

So, I have absent epilepsy. I was diagnosed in 2020. Does anyone else find that their epilepsy makes them feel very lonely, although people know you have it, do you ever find that because people don’t understand it that you feel very alone and have no one to turn to. How did you overcome this and how do you discuss it with people around you?