New diagnosis

[Katiex]

Hello I'm 17 years old and have just been diagnosed with epilepsy. It was detected in my sleep deprived EEG which showed a generalised but anterior dominant photo paroxysmal response with spike and slow wave complexes which did not outlast the photic stimulus.

I was told by my GP to stay away from flashing lights and gave examples such as the cinema, theatre etc. But im struggling to cope with this news because it's such a shock and flashing lights are everywhere when you start looking. However I have never had a seizure from flashing lights before and I have been to the cinema before without problems.

I started lamotrigine 100mg twice daily but it was put up to 200mg because I had another seizure without any triggers. The neurologist when he gave the diagnosis said my EEG changes can be seen in people without epilepsy but he thought it lended support to the diagnosis of epilepsy because of my seizures.

I am worried because the medication isn't working he will say you don't have epilepsy and have pseudo seizures. ( non epileptic seizures caused by physcholgical problems) even though I don't have any physcholigical problems.

Please keep me know your response.

Thank you

[RiaLouisa]

Hi Kathie,

I know it is a shock to have the diagnosis, but try not to worry to much about it. The first news , with many people, is a bit of anxiety, witch can cause this so called pseudo seizures. I have been trough the same. It doesn't mean you have a lot of psychological problems, just that you have a lot to deal with right now with a new medical diagnosis.

If you have no problems going to the cinema -don't let it stop you then. you know best how you feel. If you worry about the flashing light you can always try wearing blue glasses. It helps a lot of people coping with bright lights (including me) You can have them on prescription without a problem.

If you have any problems or questions or would just like to talk to somebody who knows what it is like- feel free to contact me. A doctor usually doesn't have much time and I am sure you are walking around with a lot of questions right now;

all the best

Ria

[EpilepsyAction1 Partner Epilepsy Action]

Hi Katiex

Finding out you have epilepsy can be a lot to come to terms with, especially if you’ve been told you can’t do things you enjoy. Has your epilepsy specialist told you that you have photosensitive epilepsy? If you have photosensitive epilepsy, it means seizures can be triggered by looking at flashing or flickering lights. But this shouldn’t stop you going to the theatre or cinema.

Watching films at the cinema doesn’t pose a risk in itself. But some films might contain images with flashing or flickering lights. Films should display a warning if they have scenes that could trigger seizures, but there’s no guarantee this will always happen. If there’s a film you are planning to see, you could contact the cinema in advance to ask if it contains any scenes that could pose a risk.

Theatres might occasionally use strobe lighting which could trigger seizures, but the theatre should know which of their performances contain strobe lighting, so you could contact the theatre in advance to check.

You can find more information about photosensitive epilepsy on our website: epilepsy.org.uk/info/photos...

It’s unlikely the doctor will think you are having pseudo seizures just because your medicine hasn’t fully controlled your seizures yet. Epilepsy is very individual, and not all medicines work for everyone. Sometimes it can take a while to find the right medicine at the right dose to fully control seizures.

I hope this helps. If you’d like to talk anything through, please feel free to contact the Epilepsy Action Helpline on freephone 0808 800 5050 or email [e-mail]

Best wishes

Grace

Epilepsy Action Advice and Information Team