Introducing myself

[Garland]

Hi folks. I've had epilepsy since Sept. 2008, when I had my first tonic-clonic seizure. I also have had one or two complex partial seizures. I was doing well on carbamazepine and hadn't had a seizure for 2.5 years. I wanted my brain back, so I slowly titrated down and got off the Rx, but then last weekend, I had two tonic-clonic seizures. May or may not be related to having taken Zantac last weekend; I don't know, but I have an appt. with a neurologist--I can't go to my old one because I lost Blue Cross.

Last night I freaked out a little because I had what I think is an ocular migraine--an aura without headache pain. I know migraines and epilepsy are linked, and I suffered bad migraine headaches for many years before having a seizure. So, I'm back on carbamazepine.

I hate this so much. I bit the hell out of my tongue and a week later, the tip is still numb and toothpaste stings like a motherf*cker.

Why am I here? Because I really, really didn't want to be someone with epilepsy. But I am.

 

[Cint]

Sorry about the break thru seizures, but truthfully, it probably happened because of you going off the Tegretol. I doubt they had anything to do with the Zantac. Just because you were seizure-free for 2.5 years while still taking meds doesn't necessarily mean you will be seizure-free without meds. One should never stop taking meds without speaking with their neurologist. None of us here like epilepsy and none of us like taking meds. But those tonic-clonic seizure can be dangerous if they continue. And they will if they're not checked out.

 

[arnie]

Hi, and welcome to CWE. What Cint says is absolutely right. The reason you were seizure-free for that long is probably because you were on the meds. You mentioned that you "wanted your brain back". What was the Tegretol doing to you? There are lots of meds out there, and many of them have unpleasant short and long term side-effects, but there probably is one that is best for you, if the Tegretol side-effects were unacceptable.
Anyhow, it seems like you are officially a "person with epilepsy", but that's not really as bad as it could be. I've been a person with epilepsy for well over 30 years, and I've been doing pretty well that whole time.
Let us know how the meeting with the neurologist goes.
Carry on!

 

[knothing]

So you are someone with Epilepsy. Does this change every part of who you are? If it does I have an issue because it did not change me from being me. I had to find a balance and walk that line daily but I do it. My Epilepsy has changed how I have to approach certain aspects of my life and it makes no difference in my being me. After my first tonic-clonic it took years for me to get educated, medicated and in an acceptable place (not ideal) mentally. It took almost 2 years before my mind was functioning back to 'normal' but I got there.
Is the Zantac the reason you had a seizure? more than likely not. Before that Neuro appointment look around on this site and you will find a wealth of information about medications and side effects. Note that not everyone has the same side effects on the same medications. Reason I say look into the medications is that more than likely the Neuro is going to suggest medications and want to get you seizures under control.
Many of us are 'someone' with Epilepsy on here and we get it more than most.

 

[Garland]

Yeah, after having an ocular migraine on Saturday night, I starting ramping up the carbamazepine, and I have a neurologist appt. this week.

I didn't like how forgetful my meds seem to make me, and it affects libido too. But we'll see what the neuro says about other options.

Thanks for your feedback, guys.

 

[Nakamova]

Hi Garland, welcome!

Like you, I "wanted my brain back". I've tried tapering off meds twice (both times with the approval if my neurologist). But both times I ended up having tonic-clonics and having to go back on meds. I'm currently on Lamictal, which has a reputation for causing the fewest cognitive side effects (that's been my experience). Everyone responds differently, but it's definitely worth asking your neuro about other medications you can try if the Tegretol is problematic.

Best,
Nakamova

 

[Belinda5000]

Hello Garland,

Carbamazepine will send my seizures through the roof.I have to get name brand Tegretol.
The hospital gave me Carbamazepine and there little mistake made me have three sz's.