Epilepsy Diagnosis

[OnePiece23]

So think today I have been diagnosed with epilepsy.

Seizures as a child, fainting episodes as a teenager and then 2 fairly long seizures nearly 2 decades later.

License is suspended for 6 months. Should be up sometime in March. My MRI came back fine but they saw something on my EEG.

The neurologist said I would need to give up driving forever or can go on medication and start again march.

I was a bit shocked for the appointment (telephone) so didn't really ask as many questions as I should have.

She did mention that I was borderline but then surely they should retest me rather than put me on medication for life?

I don't really know what I'm asking for on here, but if anyone could talk me through would be appreciated

Handhold OP. My DD has tonic clonic epilepsy - anything specific you want to know, I can try and answer any questions? Appreciate you will probably be completely different to my DD ! Mainly just wanted to offer a handhold

Thanks so much @Peanutssuck and I'm sorry to hear about your daughter!
What are tonic clonic seizures? Mine have happened so sporadically, I feel like I haven't got epilepsy at all.
Just a bit worried to be taking medication for life on the basis of one EEG result. Do you know what they would see on that to indicate any epilepsy?

I really appreciate you commenting x

I was recently diagnosed with focal aware seizures although I have been cleared to drive again (although haven't yet done much about this).
I am early 50s and have a history of fainting as a younger person - I'd never linked the issues.
My MRI and EEG were clear though.
I was advised not to take meds as my seizures are very infrequent - and usually 'mild'. I do have to keep stress to a minimum as it aggravates them.

"Tonic Clonic" seizures are what used to be called "Grand Mal". Usually it means the type of seizure you might see on TV where a person shakes or alternates between shaking and stiffening up.

@Cattyisbatty
Thank you! Yes also had fainting episodes.
I'm adverse to taking medication as my 2 seizures were decades apart, but the neurologist said I would have to give up my license.

Thank you @UnhappyAndYouKnowIt they are the seizures I've had.

I’m sure I have a type of epilepsy as well. It was mentioned by neurology a few months ago but never formally diagnosed as nothing came up in tests. It’s a weird one.

I tried epilepsy meds but it made me feel worse than the fits themselves. as they’re so rare.

Mine are falling over style ones - but still not ideal.

I have voluntarily given up driving until I know more

@Hellohellohellohey I'm sorry to hear that. Hoping for some answers for you soon.
It's hard having to give up driving - disrupts your whole life doesn't it. But best to keep safe I guess x

As @UnhappyAndYouKnowIt says, tonic clonic used to be Grand Mal. My DD has no triggers. Can you remember what you were doing just before your most recent seizures? I don't know what comes up on EEG sorry. You should have been given contact details for your epilepsy nurse - I think I would probably email her, and ask for her opinion on a repeat EEG and whether you should take the meds

@OnePiece23 part of the difficulty with epilepsy is that it often isn't easy to have a full picture of your own seizures. That's why doctors err on the side of caution.

People usually know about big ones like Tonic Clonics, because they tend to wake up with pain or injuries. The worry is that you might be having more than just the two big ones you know about. If a doctor picked up something on an EEG and knows there have been two seizures, they really can't risk you driving.

The medication is an adjustment, but it will allow you to drive again in 6 months. And more than that, it's going to cut the risk of SUDEP or another big seizure that causes you an injury.

It might be that even without the meds you would never have another seizure. But there's no way to know and it's better to be safe.

My dd has infrequent partial complex seizures but more frequent fainting/blackout episodes, clear MRI and eeg but advised not to drive, gets disability bus pass as consultant confirmed no driving by letter

I don't want to say this to scare you. But doctors view any seizure (but especially Tonic Clonic seizures) as a potentially fatal event. Because they can be.

If you knew that having another seizure could kill you, but it wasn't certain if it would ever happen... would you take the medication?

Oh I’m so sorry ❤️ It’s so hard and not many in real life will understand the loss of freedom and the feeling you have this thing in your brain you cannot control. But you may well drive again, don’t give up hope.

I have TLE, I had one seizure where I lost consciousness in 2011 and didn’t drive for over a year. They diagnosed in the same way as yours has been, it was borderline. I didn’t take meds as they told me I shouldn’t have them if I was pregnant (unsure if this is still true or even properly was then? Some meds are ok I think?) more than a decade passed, I never seized again and I got my license back and thought that was the end of it, maybe I didn’t even have epilepsy etc

Then during lock down I seized again and went on medication straight away. I tolerate it well and knowing that it has my back is my lifeline. I may well never have had another seizure again but I wanted control of my life.

It won’t be like this forever but don’t discount the medication x

Thanks everyone for commenting.

Noone knew what caused the first seizure but the second was in hospital after surgery.

Haven't been assigned an epilepsy nurse but will definitely ask about this. Think I will call my neurology department and ask them some more questions but ultimately will take the medication.

You have all been so helpful thanks so much for taking the time to help me through xx

My BF has tonic clonic epilepsy and like you was only diagnosed well into adulthood, but looking back had probably had seizures previously that got misdiagnosed as fainting. He’s on medication, got his driving license back and hasn’t had a seizure for years and years. Definitely take the medication if you’ve got a diagnosis!

@MiddleAgedDread thank you. I certainly will take any medication recommended.

I called the neurology department this morning and a nice nurse read parts of the letter out they are sending to me. Apparently they are not diagnosing me with epilepsy but insisting I take the medication to reduce risk.

If you don't have a diagnosis does that mean you will not be medically exempt for any prescriptions etc?

That's good news OP. As for the prescriptions - I pay for my DDs, and she has a diagnosis. I think exemptions only apply to the criteria on the back of them now. I know they've taken away the "in full time education" one - which is a pain. I could be completely wrong - somebody with more knowledge may enlighten us!

Not sure about prescriptions as we live in a free prescription zone anyway!

I have focal epilepsy with secondary generalisation, I've had seizures all my life but wasn't diagnosed until my twenties when a boyfriend saw me having a tonic clonic in the night. It was my understanding that two seizures without any other explanation (i.e., some kind of trauma/illness/drug use) was often used as an epilepsy diagnosis. Although I'm talking about a decade ago so this may be different now.

I don't drive and am on medication indefinitely. The driving is rubbish, there's no getting away from that. However, the medication is less of an issue. It took me years that find a medication at a suitable dose to both help seizures and limit any side effects but now I'm here they don't bother me they've never stopped me doing anything I've wanted to do and they genuinely help me feel better (as I'm not constantly having seizures.)

Make lots of notes before your appointments and ask all the questions you need about the type of epilepsy your being diagnosed with, the cause, ways to keep safe, rescue medication, side effects. Anything you feel is important, I'm sorry it feels shit now but you do genuinely get used to it.

@Peanutssuck your DD should have a medical exemption card so she (you!) never has to pay for prescriptions again. The GP should have the forms. Its box E on the back - epilepsy is on the list of exemptions from prescription charges.

Also, as well as the free bus pass epilepsy qualifies you for a disabled railcard, so a third off for you and a carer.

@OnePiece23 When all the info filters from the neurologist to the GP, I would ask them whether you qualify for free prescriptions. None of us can say for certain.

You do get used to living with the meds. I've now been on them longer than I lived without them.

I love how you're never told these things!! That's amazing @User3542564 thank you so much !

@Peanutssuck Glad I could be of help! If you ever visit London, you can also link a disabled railcard to an Oyster card so get a discount on the tube. Can't quite remember how I discovered that one!

Thank you - I'm aghast at how NONE of this has ever been mentioned. I know what I'll be doing today 🤣🙄🙄🤣