New to epilepsy and need guidance and support

Hello, again @beccahp,

Thanks for your reply. I certainly wish Zach all of the best. Will you let us know how his appointment goes?

Hi @FaceNu
I am sorry to hear that you still have seizures with this 3rd medication.
I have been diagnosed with epilepsy in adulthood when I was 48 years old (I am 50 years old right now). I have temporal lobe epilepsy with mesial temporal sclerosis, which is a kind of epilepsy that is more refractory than others. I have already tried 5 medications, being Lamictal one of them.
Lamictal has controlled well my seizures, but I had insomnia, not tolerating it, unfortunately.
Is your neurologist an epileptologist? When one is having difficulty treating himself or herself with medications, it is good to see a neurologist specialized in epilepsy (epileptologist) or to schedule an appointment at an Epilepsy Center. They will be able to better help you with a treatment.
All the best and stay positive!
Kind regards

@FaceNu
Good afternoon,
Well I don’t have adult onset Epilepsy but here is some of my story.
On a Saturday morning in 1967 I was standing in front of the living room window looking out and down I went. My Dad stuck his finger in my mouth and it didn’t take long for him to regret that decision but I sure was grateful since it prevented me from chewing up my tongue & cheeks although he had quite a scar. I vehemently disagree about not putting anything in the mouth. I had mostly Tonic Clonic (then known as Major Motor seizures) Convulsive Status Epilepticus which are continuous seizures and a medical emergency and in the beginning Absence seizures but occasionally had Focal Aware & Focal Impaired and only one déjà vu Aura. Auras are Focal Aware seizures.
Do you know what type of seizures you have? Do you have Auras? If you are having seizures after a migraine (very rare) I wonder if you could have Migralepsy? If you have a seizure after a Migraine how soon does the seizure happen?
I have had over 13,000 Tonic Clonic seizures and who knows how many Absences.
I have been in induced comas from Convulsive Status, 8-10 times at least and more shorter term ones. My longest induced coma lasted 8 months and my memory was wiped clean. I had to relearn so many things. Worst loss of all was my ability to play the piano which I loved. I didn’t even know what the piano was when my parents whom I didn’t recognize or know anything about brought me home to a house I didn’t recognize.
Have you noticed any seizure triggers like being tired, lack or poor quality sleep?
I know someone who has a seizure when he plays his banjo (Musicogenic epilepsy) and another when he goes to high altitudes.
Are you photosensitive?
Seizures can cause injuries, I was lucky, my worst injuries were dislocated shoulders which I had to have multiple surgeries to stabilize but more seizures and the surgical corrections were destroyed. Doctors gave up after 3 times.
I was kicked out of school when I was a sophomore in high school due to frequent seizures.
Seizures & seizure medications can also cause memory. problems. Concentration issues can be a problem too, making it more difficult to store recent memories.
The medication your on is probably considered the best seizure medication and is effective for migraine auras and may decrease migraines or their severity.
I know this is unreasonabley long but a few safety precautions you may already know.
Don’t take a bath unless someone is with you.
Showers are dangerous too. People have drowned or got severly burned falling against handle and pushing it to hot.
Lower temperature of water heater.
Knobs are better than handles.
I cook almost exclusively using a microwave, crockpot, or air-fryer. If using cooktop use rear burners.
Also, you should have your vitamin D checked. Additional vitamin D is recommended for anyone on Antiepileptics.
Although switching from brand to generic or generic to brand or changing manufactures don't cause seizures in everyone, it does me so it's not recommended.
Take care,
Jake