Living with epilepsy: Tips and support?

..Look, I’ve got some advice for you: just head over to the Epilepsy forum and see what people are actually going through. Read up on their stories and how they're managing everything... it might take a while to get through it all, but..☕...it'll give you a real look at what living with epilepsy is actually like.

I haven't actually made it to my back MRI yet; I just went to pick up the referral the other day...
😁.... What kind of epilepsy do you have? Are you on any medication??? What specifically are you taking?

I really hope you get some actual answers after that MRI of your ribs.

Honestly, I’m not even sure what specific type I have. I was diagnosed with epilepsy when I was 20, and now I’m 29—so, I guess I’ve been on medication since 1999. Back then, I used to have these occasional generalized seizures while I was sleeping, though they were pretty rare. The last one I remember was back in 2003.
Most of the time, I just experience these brief seizures where I lose the ability to speak—they don't last very long, but they are incredibly intense and make communication so awkward. My jaw muscles twitch during those "minor" episodes. It’s more something I feel internally than something anyone would actually see. I’m completely conscious through the whole thing, too—I mean, I’m fully aware and functioning normally regardless of what I'm doing. And then there’s this other kind of seizure, which is a newer development for me 🙂—it’s like an intensified version of the small ones. It lasts longer, my head starts shaking and cramping, but everything else stays fine—my arms, my legs, I can stand up, I know exactly where I am... it usually happens when I'm at home and finally relaxing. When I'm stressed, it never seems to happen. 🙂
Well, I suppose that’s a bit of a silver lining—it’s definitely better to have it happen at home rather than out on the street or at work. That’s actually why I went looking for a new doctor, hoping to finally resolve this and find a treatment plan that actually works for me... so I can move past this. My current doctor isn't exactly the most empathetic person, if I'm being honest; I react quite poorly to the medication itself. Even if I'm not having active seizures, I just feel this constant sense of weakness and nausea.
I was on Lamictal for four years. My new doctor decided to switch things up and prescribed Topamax and Depakene Chrono, while tapering me off the Lamictal. Let me tell you, the Depakene made me go absolutely laaaaaaate—seriously, I was moody every five minutes, vomiting, tearing up... it was a total disaster (though, I suppose it could have been autosuggestion, which is always a possibility). She has stopped the Depakene now, so I'm not losing my mind anymore. I feel a little better, but I still feel incredibly weak. I guess I'll see how it goes once I'm down to just the Topamax.

How do your seizures manifest, and what kind of medication are you taking?

I'm currently on Depakote 300 and Phenytoin 250. I was taking Lamictal previously, but I developed a rash. Where are you receiving treatment? Which doctor are you seeing?😉

Nowhere at the moment. I feel like I've already checked everywhere—honestly, I've been all over. My last stop was actually Rib, but I don't think I'll be heading back there anytime soon. Oh no!!

Forgive my persistence, but I have to ask—why did you stop? Which doctor were you seeing?☕

No worries at all—please, ask me anything you want! Though, I think I’ll skip mentioning any specific names... I really don't want to get into badmouthing anyone, you know? It just doesn't sit right with me. I can only say that I encountered a certain level of rudeness and a total lack of empathy that I honestly never expected to run into. So, I decided to just walk away—because, frankly, I have enough on my plate without dealing with that kind of energy. I’d much rather head back to the places where people might not have known exactly how to handle me, perhaps, but they were at least more than kind.

Aha...😁...Ah, no matter which doctor you see, they all just, excuse my language, tell you to go to hell...😠... It’s awful...

Let's start from square one:
About 11 years ago, I had surgery on my right ear because they suspected otosclerosis. According to the discharge papers, they didn't actually perform a stapedotomy—instead, they found malleus fixation. Now? I'm dealing with conductive hearing loss and intense tinnitus.

Then, three years ago, things started going sideways:
Racing heart, numbness on the left side of my face... an MRI of my brain came back fine, Doppler on the blood vessels was okay, EMG on my upper extremities was also fine. However, the EEG showed diffuse dysrhythmic changes localized to the right frontotemporal region, with some slight paroxysmal tendencies. Neck X-rays showed minor changes at most.

The catch is that doctors diagnosed me with arrhythmic epilepsy. I DON'T LOSE CONSCIOUSNESS, yet they keep playing chemist with my meds.
For instance, I'm on Trileptal (for epilepsy) plus they added Lamictal about two months ago.
On top of that, I’m taking Concor 1.25 (prescribed for the rapid heart rate).

Over these last three years, there hasn't been any progress—if anything, things have just gotten worse.

Symptoms (to recap): weakness, numbness on the left side of my face, occasional partial numbness in the left eye, tinnitus, and leaning toward the left (my balance center is fine—which is why I mentioned the ear surgery earlier).

And yeah, I'm 51, so some people try to pin this on menopause (though my cycles are regular).

My request:

If anyone out there is dealing with similar symptoms, please reach out and share what you've been through.

Thanks a lot.🙂

Certain types of epilepsy don't even involve losing consciousness...
I'm not sure why there isn't more progress here; maybe the treatment plan still needs some adjusting...

It drives me crazy when I hear about people being put on a massive cocktail of medications. You end up with all these new symptoms, and then you can't even tell if they're from the actual illness or just side effects from the drugs.

Does anyone happen to know anything about "complex partial epilepsy"?
I was wondering what kind of medications are usually prescribed for it, and more importantly, how they actually affect someone... like, does it cause sudden weight gain or anything along those lines?
Thanks.