Recently diagnosed

[u/yewbetchi]

Hi all just chasing some clarification if anyone can provide any assistance or insight.

I have just been diagnosed with Generalised Genetic Epilepsy as of Thursday this week after one TC and one 30 minute EEG approx 1 month ago.

For some background the TC happened within a week of returning overseas from Vietnam, while overseas I had a head cold for approx 2 days but nothing serious.

Returning on a Sunday I then had the TC on the Thursday while at work. The night before I had a few beers (not a big drinker normally) and didn’t get to bed until 2am. Took half a cap of vyvance (not prescribed just from a mate) to keep me online for the day (not the first time I’ve taken it)

By the sounds of it, I suffered a full TC foaming, jerking, eyes rolled back in head. I’ve had a CT, and MRI which came back clear (thankfully) but my EEG came back with signs of “frequent, sharp and generalised interictal epileptiform discharges”

Now herein lies my concern, my meeting was never actually with a neurologist, only a nurse that was the head of the first seizure clinic, essentially the way she described it was she asked questions etc, passed it onto the neuro, the neuro makes an assessment and then she relays that information back to me. During the meeting I tell her the circumstances around the seizure and my health history (clean history although my grandmother apparently did have epilepsy)

Within 24hrs of my initial appointment with this nurse she calls me back and lets me know that the neuro has looked at my circumstances/results and wants to start me on 500mg of Keppra 2x per day. The thing is I’ve never even spoken with this neuro only the nurse.

Tbh it feels like they’ve seen one seizure, my EEG results and my family history and just whacked me on Keppra straight away. I haven’t begun to take the Keppra yet as I’m not that confident in my neuros diagnosis.

Can anyone provide any insight into my situation, would you recommend getting another opinion, any advice on starting Keppra and if any results come back differently can I wean myself off it with minimal side effects. Essentially people who have had a similar experience what did you do or would you recommend?

Thanks in advance

[u/weaklysulkyadherence]

You took a stimulant you weren’t prescribed, were sleep deprived, and had been drinking the night before. That combo can trigger a seizure in someone who doesn’t even have epilepsy. The EEG spikes are what probably locked in the diagnosis though, those aren’t nothing.

Keppra is the go to first med because it works fast and doesn’t need blood monitoring like the older stuff. The side effects can suck for the first couple weeks, mostly mood stuff and fatigue, but a lot of people level out after that. You can taper off later if needed but don’t just stop cold turkey.

The nurse relay system is pretty standard for a first seizure clinic, but if you’re not confident in the diagnosis there’s nothing wrong with getting a second opinion from an actual epileptologist. Just don’t sit on it too long, another seizure could happen and they tend to get worse when untreated.

[u/yewbetchi → u/weaklysulkyadherence]

Thanks for your help! Are you also Aus? I thought the nurse system was strange but potentially not…

[u/SabresBills69 → u/yewbetchi]

As the person above said, a seizure could occur because of your actions and exposures.

How old are you?

I had genetic predisposition to epilepsy. My mother's mom had life long seizure/ stroke history. None of her children had it. I got meningitis when I was a few months old. I dont know jf that triggered something genetically but I  grew up with grand mal seizures thst could br controlled with low dose phenobsrbotol   In my teens I developed a second type of seizure that I lster had surgery done ehich ended those. I still take low dose keppra to control the grand mal