Living with epilepsy

[Karla89]

I suffer with tonic clinic seizures strobe lights don't affect me at all just tiredness,stress and my monthly times iv had this since I was 11 years old and im 32 now I hate having seizures it has ruined my life which I am finally starting to rebuild a bit but that is cuz my partner he has really made me feel that I do have a life and not stuck on my own as my family gave up on me when I was a child but my seizures are still bad and mainly because of the stress which I can't really do alot about well I find anyway to stop this thanks 🙂

[EpilepsyAction1 Partner Epilepsy Action]

Hi Karla

Thank you for your message. Its sounds like things have been tough for you.

We have some information on our website about stress (epilepsy.org.uk/info/health..., sleep (epilepsy.org.uk/info/health... and managing seizures triggered by the menstrual cycle ( epilepsy.org.uk/info/women/... ) which you may find helpful.

If your haven't already, it may be a good idea to speak to your epilepsy specialist, epilepsy nurse (if you have one) or your GP about your seizure triggers. They may be able to offer support in helping to manage these.

Many people with epilepsy (epilepsy.org.uk/info/what-i... ) can become seizure free. But unfortunately some seizures can be very difficult to treat and so this doesn't always happen for everyone.

Getting the right treatment and care (epilepsy.org.uk/info/treatm... ) is important in reducing the number of seizures you have. And looking after your wellbeing ( epilepsy.org.uk/info/health... ) can help you to have as few seizures as possible. It can also improve how you feel about having seizures.

You may find our epilepsy and wellbeing free online course helpful ( learn.epilepsy.org.uk/courses/epilepsy-and-your-wellbeing/ ). This course aims to teach you how to take simple steps to manage your epilepsy and improve your wellbeing. It covers the links between epilepsy and your wellbeing, seizure triggers, taking epilepsy medication, memory and stress.

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups (epilepsy.org.uk/virtual-gro... . We have our forum4e online community ( forum.epilepsy.org.uk/) and we are on facebook ( facebook.com/epilepsyaction/) and twitter (twitter.com/epilepsyaction ).

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

[AnxiousCanadianChic]

I’m just like you. I didn’t develop epilepsy until 2014 and I have the exact same triggers as you. I luckily have not had a grand mal since being on keppra but I live in fear every freaking day and it’s made my anxiety sky high and added to my depression. My first grand mal was 3-4 months after my mom died and I can’t help but think that had something to do with it. That first one I was out for awhile, had red marks all over my face and bit my lip bad and they figure it was a really bad one and if I didn’t come out of it when I did then I possibly could have died. I was not put on meds and was told some people just have 1 seizure and that’s it. Well a few months after that, I had one outside the grocery store while waiting for my bf, a woman called the ambulance and when I woke up that’s where I was. I then was put on keppra. My bf told me about the crowd of people around me and I was so embarrassed that I wouldn’t go anywhere for many months. I didn’t and haven’t had another grand mal since then but am constantly waiting for it to happen again.

I do get simple partial seizures and when they happen, I can hear but can’t understand people, I can talk but I’m told it’s a jumbled mess or sounds like I’m speaking another language and I can see but if I’m looking at writing, it’s just a jumbled mess. These last about 30 seconds but it takes quite awhile to get 100% again. It has really ruined my life too, I hate going out, hate talking to people and have severe anxiety about having more seizures.

[Comedy]

Hi Karla,My son is 26 and had horrible grand mal seizures for 12-13 years. He was on 10 different medications and combinations of medications and we even did all the testing for seizure surgery. After deciding the surgery would not be best for him they prescribed Depokote. They say that there is less than 5 percent chance of a Med working after using 3-4 seizure meds but it is working. It is also helping anxiety. It is a Med that is used for no polar patients. I know some people have had negative experiences with it but it has been a life saver for my son. He went from 80-90 seizures a year to 2 very mild seizures 7 months ago. In fact we are looking at having shoulder surgery because he convoluted his shoulder out of the socket so many times it doesn’t stay in place and it is very painful. Maybe you can ask your doctor and others to see if Depokote is a good option for you. Lots of luck to you.