Been diagnosed with epilepsy

[bathmatandbin]

So, I'm 45 and have just had a diagnosis of frontal lobe epilepsy, is lovely to know that it is what it is, having waited 18 months to see a neurologist, but would love to hear from others that have experienced both the diagnosis and have lived through it! Any wisdom would be 100% welcomed .....thanks in advance xx

Hi @bathmatandbin. I was diagnosed with epilepsy as an adult (couple of years ago) after two seizures out of the blue. If you want to ask anything I'm happy to answer, or sometimes just talking about it helps. I know there are a number of posters here with epilepsy who may see this thread too. I'll see if I can link my first thread as it may be helpful.

18 months for diagnosis seems such a long time! After my first seizure I was just referred to "First Fit" clinic and was under the "wait and see", after my second I was actually an in patient as they transferred me to a centre of neuro excellence hospital, I was diagnosed with temporal lobe epilepsy and the neuro said there is no "obvious cause" for the majority of adult onset. If you want to PM me I can tell you the area as you can request to be seen by them if local ish? They have an epilepsy nurse service where you can ring and be contacted within 24 hours with any concerns, they are truly amazing. I cannot praise them highly enough.

My epilepsy isn't controlled at the moment sadly as it returned after 18 months clear, I take Lamictal and Keppra was added. How are your meds? The main side effect for me was wanting to eat everything in sight. My short term memory is totally fucked (medical term ) but this could be the meds as well as the epilepsy.

Do you usually drive? Surrendering my licence was a very hard adjustment for me. I have nocturnal epilepsy so have managed to get it back after the two year (I think it was) period.Have you had any support with any adaptations if required? I was referred to an OT who advised on things like bed rails etc.

Sorry, I don't mean to question you but these were my main issues upon diagnosis and wanted to know you are not alone. I know my DH and Dc find it hard as it was so out of the blue and they check me every morning as they worry.

It's scary, isn't it, and adult onset is literally life changing. One of the epilepsy societies was very helpful and I'll try and link that too.

Hi.

I was diagnosed with epilepsy at 22 after a few fits completely out of the blue. That was 30 years ago and treatment - both meds and attitudes of medics - have improved a great deal.

First doctor I spoke to while waiting on a trolley in A&E saw that I was a student and his first question was had I taken any drugs? A few years later, when we thought my fits were controlled, I had a few seizures out of the blue and saw a private neurologist. He was nice enough but as we left, he patted my partner (now DH) on the arm and said 'don't worry, we'll get her sorted.'

Things were okay, and Tegretol Retard (now called Controlled Release!) did the job pretty well and as that's carbemazepine there weren't too many worries when I was pregnant and our son is fine. If you're planning to get pregnant discuss it first.

Then I started having more fits, including a spectacular one where I fell down half a flight of stairs and another in a branch of All Bar One while having lunch with my mother...

We added Lamictal to my Tegretol and things are okay now. However, and this is important, once Lamictal went off-patent I was given the generic versions and started having seizures again. Whatever anyone tells you about them being identical it appears that in some cases even a tiny variation from the original can mean that it doesn't work. After all, these are meds that stop seizures not paracetomol! So do be careful about that.

It is a life-changing diagnosis, as @Epilepsy says, but it's also manageable and services are much better than they used to be.

If you want to PM for a chat about it, do feel free. But remember you're not alone. x

PS - Forgot to mention that since GP specified the Lamictal rather than the generic Lamotrogine I've been okay and haven't had a fit in the last ten years x

There is a list of epilepsy meds that are never supposed to be varied - so if you start taking Lamictal you're always given that brand, never the generic version. Unfortunately this can cause problems when there are supply chain issues: I have been having to substitute recently, which makes me nervous.

And I agree that attitudes have come a long way @BurningTheToast - it's been 20 years for me now (adult onset too). I don't think I'll ever forget my then-boss telling me "you don't look like an epileptic"

Oh yes @ginandtonicformeplease - being described as ‘an epileptic’. Happens less often now fortunately. Usually by people who could accurately be described as ‘an idiot’!

The term "an epileptic" doesn't bother me to be honest, I just think of it like someone saying "I'm a diabetic" which is common usage - if that makes sense?

Thank you so much, it is so helpful to hear from others that have been through it. Have been prescribed Lamictal and have started the building the dose up. I don't think I had any idea how much the seizures (mine are absence seizures (petit mal) and I was having several a day) had impacted on my confidence! Hopefully when we get the dose right I will be able to start living again!

I have an appointment with the epileptic nurse in March and the neurologist has sent me lots of info. Thanks again for sharing your experience. It is really nice to hear I'm not the only one!