Focal epilepsy/ tonic

[Klt84]

Hi juat looking if someone can help. I have a child who has autism with a learning disability, who had a full tonic clonic seziure lasting 10 mins in 2017. Since them he hasn't had a tonic but was having episodes of zoning out and eyes flickering & fingers which only lasted a short while, all his legs kept coming back normal. Till his last one in March which showed epilepsy in the right front temporal region, they also did a MRI scan which showed a cavernoma. After having these tests he had another tonic seziure, which we have now started medication latramogine. He has had 2 seziures we're he has zoned out eyes fixed wide watering, constant swallowing as if going to be sick, with loads of fluid coming out of his mouth with his arm and leg twitching. I'm all new to focal seziures (&also a fightend mam) he is not able to explain things to me with how he is feeling apart from dizzy & sick & seeing bright colours due to the learning disability. I'm wondering if anyone can give me a little more information on focal epilepsy please. Thank you

[car67]

I’m very sorry to hear what you and your son are going through. There is lots of information on epilepsy action about different seizures. Also every one reacts different. As his cavernoma is on his right side it will affect certain activities in his brain, mine is on my left side and affects my memory, I become confused, get my words mixed up, etc. please check on the epilepsy action website,.Also if you type in cavernoma there it’s a really good website, called cavernoma alliance, they can help too. Please reach out to them, I did and they were very supportive and I cried for ages!!! They sent me a pack out which explained everything, that was a few years ago so I’m not sure if they still do that? I hope you find the answers you are looking for. Good luck 😊

[Klt84 in reply to car67]

Thank you very much for your reply 😊. & also for the links I will take a look. Sorry to hear you are going through this also

[EpilepsyAction1 Partner Epilepsy Action]

Hi Kit84

Thank you for your post. It can come as a shock when your child is diagnosed with epilepsy.

As Car64 mentioned Epilepsy Action have lot of information on our website. A good starting point can be newly diagnosed. epilepsy.org.uk/info/newly-...

Communicating with people on here, is a really good idea. So, I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Talk and Support virtual groups epilepsy.org.uk/support-for...

Talk and Support face to face groups epilepsy.org.uk/support-for...

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

We also have our befriending service. This service matches you with a friendly volunteer for regular chats either online or by phone. epilepsy.org.uk/support-for...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

If our Helpline Team can help further, please feel free to contact us again, either by email [e-mail], live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pmRegards

Diane

Helpline Team

Regards

Diane

[Martin1984]

Hello,So sorry your poor little boy is going through this, they are hard to watch for the observer as my family tell me when I have them.

These seizures sound very similar to mine, as mine is in the right temporal region of the brain, it mostly affects my left side, I will stiffen up, twitching in legs and arms and zone out for a short period of time, when I come around I usually have tears in my eyes, and have no recollection of them, the colours are also an experience of mine, which I see before and after the seizure, they also leave me feeling confused and very drowsy.

There are many epilepsy websites available, check your local authority aswell, as mine connected me to a support group that I attend on a weekly basis, it's basically a coffee morning and a chat but it really helps being with people having similar experiences.

I am also on Lamotrigine, on the maximum dose, now they have found the right dosage they are getting less common, so has given me hope of living a normal life, it just takes time.

If you ever need anyone, even just to chat, Please just reach out.

Take care

Martin x