I have some days clear of fits. Other days I have several slumps, or occasional tonic clonic fits caused by bright light, loud noise or more emotion, both good and bad, roughly 25 times each month. An epilepsy specialist suggested I take more vitamin D after having a blood test.
I may notice a trigger, like twitches in my cheeks, but sometimes I am not aware that the epilepsy fit lasts for less than a few seconds and am able to carry on as though nothing has happened. If I am standing when it happens I fall, causing body bruising. I wear a cycle crash helmet all the time during the day to protect my head. I take Keppra, Fycompa and Clobazam and have a VNS device. Any other ideas?
Written by
GillSans
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It sounds like you have some bad days due to your epilepsy.
I hope you hear from others in this community, as sharing information and experiences can be a really good idea. Can I just check you also know about our online community, forum4e? This is a very active community for people with epilepsy and carers of people with epilepsy. It’s another good way to talk to other people in a similar situation.
I’m also wondering if you know about our local groups and coffee and chat groups that are in various places around the country? This is also a good way to make contact with others living with the condition. epilepsy.org.uk/near-me
If we can be of any more help, please feel free to contact us directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.
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