Can anyone talk to me about Temporal Lobe Epilepsy?

[heykittygirl]

Just been diagnosed with Temporal Lobe Epilepsy after years of 'funny turns.' So relieved to have a name for what I experience but a bit apprehensive about what happens now.. also fairly anxious about how I will get about without driving. Having all the thoughts!

Hopeful bump...

I have left temporal lobe epilepsy. I had to have 1 year with no funny turns (I called them that too!) before I was allowed to drive again. I was allowed to apply for a free travel pass from my council, as I couldn't drive for medical reasons. This was about 10 years ago now, so I'm not sure if that is still a thing?!

Mine was fully controlled quite quickly, so I was lucky in that respect. Do you have a good Neurologist?

It's quite scary I think to get diagnosed, but it does get better

Thank you that's super helpful! Yes the neurologist was great and really thorough. I'm just so pleased to have a name for what has been happening to me. I've had them since I was 8 (am 25 now) and been fobbed off by so many doctors.

Interesting to hear about your travel! I'm hoping if I do have to surrender my licence it'll only be for a short period. Will definitely look into the council thing!

Have a look online at Epilepsy Action and the DVLA to check about your licence before you drive. Usually you need to declare the epilepsy to the DVLA.

Oh wow that's a long time to wait for a diagnosis Obviously no one wants to get a diagnosis of epilepsy, but if you've been having seizures for so long then I imagine it was a relief!

Oh that is a long time to wait for diagnosis I agree! I started having the ‘funny turns’ at 28, got diagnosed and on medication within 6 months. No more funny turns since. I didn’t drive at the time anyway but still informed the DVLA as I had a provisional from learning previously. I then learnt to drive several years later and still do drive now.

I second going to the Epilepsy Action website to look for advice and guidance- their leaflets are very readable and.incredibly informative.

You may also have a local EA rep/ coffee mornings etc where you can get help, advice and sharing of experiences with other people with epilepsy.

Normally if you have.any seizures at all you cannot drive for at least 12 months and you would need to surrender tour driving license. However, there are.some exceptions, such as if you only have seizures during the night- but the Epilepsy Action website has an info leaflet on epilepsy and driving so go and read that.

Your neurologist will most likely start you on treatment And this may need adjusting until you find what works for you.