How will this likely play out?

[jack0194]

Sorry, but this may turn into a long story,

So about 25 years ago when I was young I had two sudden Two tonic-clonic seizures (age 4 at the time) It’s still unclear on the exact lead-up but the cause is thought to be oxygen loss at birth which led to a TBI. Years later 2010 age 17 I was rediagnosed and the TBI turned out to be MTS in the temporal lobe I won’t go into the exact areas affected but my understanding is that these areas also link up with the Occipital lobe. So basically at the time, it was only the Temporal lobe and Parietal mentioned.
For years I was probably naive and thought I was fine and completely missed all my auras then on top of that I didn’t even know the word aura was a thing. My old Neurologist ended up winding down and retiring so I was without a Neurologist for two years it was during this time that I realised I probably wasn’t as well as I realised. I started realising I was having random twitching that got worse over time I started testing for it in 2018, and finally ended in 2023. I think all of the the tests included three standard EEGs one MRI, one three-day eeg, and one three-day video eeg then to ad to I had a TC seizure in between tests.
While all this was going on I was on Topamax and Tegretol with the Tegretol being on a max dosage (1000mg) About two months after I had the Video EEG and several blood tests I finally got a phone call to say I needed to stop the Tegretol ASAP and start Keppra. Almost two months after this I had a follow-up appointment with an Epilepsy nurse to explain everything. From that basically, I found out that my condition now includes the Occipital lobe but in terms of a final diagnosis, this is still unknown.
I guess what I’m getting at is if my TLE condition now also affects the partial and Occipital lobes is it still TLE? Or would it now be classed as something else?

[agate]

Welcome, jack0194!

Is MTS mesial temporal sclerosis, a common cause of some types of epilepsy?

You certainly have been through quite a diagnostic workup.

As someone who has spent 99% of my BrainTalk time over the years on the MS forum, I'm no authority on epilepsy, but I did find this, which might be something you already know:

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This part in particular:

• Secondary generalized seizures begin in one part of the brain, but then spread to both sides of the brain. In other words, the person first has a focal seizure, followed by a generalized seizure.

Might this be what is happening with you?

Any drug that affects the nervous system is a drug to be very careful about. I hope that your doctor and you will pay close attention to every drug you're taking or have taken or are thinking about taking. There are drugs that do a good job of controlling seizures but there are people who still have breakthrough seizures even on those drugs. And all of the drugs can have side effects that you might find bothersome or even intolerable.

I hope that by now you've found a new neurologist who will work with you as seizures are no easy problem, and sometimes you have to keep searching for possible triggers as well as searching for meds that will work for you.

[jack0194]

Welcome, jack0194!

Is MTS mesial temporal sclerosis, a common cause of some types of epilepsy?

Yes. Having said that though I'm only going off a report that is 10 years old and has been well updated since then.

You certainly have been through quite a diagnostic workup.

Yeah, It's just a combination of having it for a long time, having to be rediagnosed back in 2010 basically due to a major admin error than having a new Nero from 2017 onwards. Most of the the testing where my condition was looked at more in-depth was from 2017-now.

As someone who has spent 99% of my BrainTalk time over the years on the MS forum, I'm no authority on epilepsy, but I did find this, which might be something you already know:

Only registered and activated users can see links., Click Here To Register...

This part in particular:


Might this be what is happening with you?
Any drug that affects the nervous system is a drug to be very careful about. I hope that your doctor and you will pay close attention to every drug you're taking or have taken or are thinking about taking. There are drugs that do a good job of controlling seizures but there are people who still have breakthrough seizures even on those drugs. And all of the drugs can have side effects that you might find bothersome or even intolerable.

When I changed to Keppra I basically had to monitor everything. I've only been on it for a few months so I'm still doing it now.

I hope that by now you've found a new neurologist who will work with you as seizures are no easy problem, and sometimes you have to keep searching for possible triggers as well as searching for meds that will work for you.

Over the last 5 years, I have learned a lot, to be honest. I went from someone who barely knew nothing about what I had apart from the diagnosis. I've been doing work with triggers for a few years but the thing about triggers is it can be hard sometimes to confirm whether or not something is a true trigger. I've explored lots of ideas but I've only got about 4 "suspected" triggers.

[agate]

Even flashing lights can trigger a seizure for some people.
I've heard of sudden loud noises triggering seizures too.

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[jack0194]

Even flashing lights can trigger a seizure for some people.
I've heard of sudden loud noises triggering seizures too.

Only registered and activated users can see links., Click Here To Register...

Yeah I know, this is where it gets a little confusing because the loud noise trigger is related more to the Parietal lobe and the flashing light trigger is related more to the Occipital lobe.

I have both these areas affected but in terms of the triggers. I still don't officially know yet whether I don't get them, or I do get them but there not as bad as what other people experience. eg. There is a chance some of my seizures may technically bee light sensitive but not really caused by flashing lights. The other thing is even though my light sensitivity isn't that bad now there's always risk that it can get worse over time.

[agate]

I have the impression that many seizures have no known triggers, or the triggers haven't been found, and that the important thing is to stop them from happening. That always seems to be a matter of getting the right medicine in the right dosage, and that can be tricky because there are people who have breakthrough seizures no matter what dosage they're on or what medicine they're on.

Sometimes, unfortunately, the tinkering with the meds and the dosages can go on for many years. I hope this doesn't come as a surprise to you, but it sounds as if you've already been through quite a bit of tinkering.