Living with epilepsy - Introduce yourself & meet others

@nadinen I have a hard time describing my auras. They happen in my stomach. As I look back on things and after reading and research I can understand why doctors said I had anxiety, what I was saying sounded just like all the symptoms of anxiety. There really was no pattern as to when they happened, anytime of the day or night. So, I kept a diary of all my activity prior to each one happening.
After doctors and technicians reading that and then having me stay inpatient at the epilepsy center they tried to replicate all things I was doing that they thought were significant. I still don’t understand if they were able to trigger one or if I was just incredibly lucky that they were able to record one.
Anything is worth a shot. Is there an epilepsy center near you? Maybe by writing down all your activity you might see a pattern and doctors might be able to capture some activity. This will require a great deal of patience but it might pay off.

@nadinen
Yes, I’ve been on Depakote but I was thinking of Absence seizures and writing about Focal Aware seizures. Between hundreds of thousands of seizure pills and so many seizures it’s a miracle my brain functions at all lol. Sorry for the confusion.
1) carbamazepine (Tegretol)
2) lamotrigine (Lamictal)
3) valproate (Depakote)
4) oxcarbazepine (Trileptal)
5) gabapentin (Neurontin)
6) topiramate (Topamax)
I refuse to take Topamax, better known by some Epilepsy patients as Dope-a-max including myself.
These are some of the supposedly best meds for Focals. Although some newer ones might head the list now. Older drugs have always worked better for me and a lot of people I know.
Neurontin never phased me and I took the recommended max dose (34 or 3600mg) I know a man on over 7,000mg but he’s stopping it to, to much med for to little help.
I take Carbatrol (A brand name of extended release carbamazepine) and Phenobarbital, which has been around for 107 years. I haven’t had an Absence or Focal in eons and haven’t had a Tonic clonic for 6 years.
My Neurologist refuses to give anyone regular Tegratol because he claims the serum level fluctuations are too great.
.

@nadinen
Have you ever considered the RNS? Check it out.

Jake

What happens when they do catch an aura... i mean do they change your meds or they just confirm u have epilepsy?
Sorry but i hope they catch it on eeg but do more than just confirm i have epilepsy when i already know that..hope i make sense?

But yes i definitely need to go to an epilepsy centre as ive actually never been... ive only been to neurologists but not epilepsy specialists

What is your focal like if u dont mind me asking..im confused om weather to call my problem a focal or an aura..

Anyways what do u mean about the tegratol serum levels...

Somthing interesting happened..my new neurologist seemed not to understand why my blood levels came back as 4.9 on a daily 500mg dose of tegratol
And monthes before that i had a 4.9blood test result on daily 200mg dose

So he made me feel as if i cheated my results and said there is no way a 200 mg dose can result this which made me feel like he doesnt know what hes talking about...

@nadinen when they caught an aura on the eeg they discovered that what was perceived as an aura was actually another type of seizure. They did then change my treatment plan with new meds.
All along I thought I was having an aura and it was actually a seizure.
An aura is often called a warning and it indeed is just that. But sometimes, as I have learned, an aura might actually be a simple seizure. So maybe catching what we are thinking is just an aura on an eeg might give us different information and send us down a different treatment path. Also, doctors may be able to identify in which part of the brain seizure activity is originating which, I believe, also changes treatment.
Just more thoughts to ask your doctor about and if it might apply to you in any way.

Well im happy for you that they caught the aura .. what medication are you on? And have u ever taken tegratol before..
Do u have any aura now?
Thank u very much for your replies

I am on Levetiracetam, which is the generic for Keppra, 500 mg twice a day. This works for me. No auras now.
I have taken Tegretol before. It didn’t work for me.

I would like to try this but worried of a risk of a big seizure or increase of auras

I wonder if it can be taken with tegratol in a smaller dose maybe
I will have to ask a neurologist

Although Keppra wouldn't be my first choice, however; if you used it as an add-on drug I wouldn't worry about having additional Auras or a Tonic-Clonic since your still on Carbamazepine. I'd be curious what add-on drug your Neurologist recommends.
Best of luck,
Jake