One seizure was enough

Similar boat. Had my first seizure about 3 months ago and I'm 32 years old. Combination of lack of sleep, working 12 hrs, 2 energy drinks(Java monster) and being up for 20 hrs. They put me on phenytoin sodium extended release capsules (dilantin) and since, my bones hurt(neck and lower spine), mid back muscles always sore. I'm always tired, occasionally nauseous. I had a brain injury 9 yrs and 2 months ago and they put on dilantin for precautionary measures. After a year I requested to be taken off cause I didn't like how it made me  feel and had no seizure activity at all leading up this past one. I had no warning signs of a seizure coming(smelling something burning, tasting metal, etc...). The neurologist is blaming it solely on the fact that I had a brain injury 9 yrs ago and avoiding the numerous things that lowered my seizure threshold. I'm slowly weaning myself off of them to see what it's like off of them. Still waiting on approval to drive :/ But yeah I don't want to be on these meds if long term, I don't need them. But anyways, I hope all is well and I hope u have a seizure free life. God bless.

Hi, my name is linsey, and im 19 years old. About 3 months ago i experienced my first seizure, and it was while i was sleeping. I have no family history of seizures or anything. I went to a neuro, she performed and eeg and said there were brain spikes, it was abnormal. i had an mri done, and that turned out normal. i was diagnosed with generalized partial complex nocturnal seizures.  She put me on Keppra 500mg twice a day, and it was the worst experience of my life. i spiraled into deep depression, and constantly felt "out of it". Immeadately i stopped taking it. I just had a follow up neuro appointment today, and she said i needed to be on medication. Ive only ever had once seizure. Today she put me on Lamictal xr. i have yet to take it because i dont feel the need, but at the same time i dont want to experience more seizures...

I am a healthy, active, non-smoking, non-drinking 33 year old woman. I had my first seizure while driving when I was 31 years old, in October 2008. I was diagnosed with epilepsy shortly thereafter. I am now coming to realize my seizure was probably an isolated event. Read on so you don't make the same mistakes I did right in the beginning of the treatment I received for an isolated seizure occurrence. While driving home from an appointment where I had donated blood, I had a wonderfully euphoric feeling, then got wretchedly nauseous like never before for about three minutes. My lights started to go out, in my head. I knew complete darkness was coming. Luckily, I managed to safely pull over into a liquor store parking lot across traffic before immediately passing out. However, I failed to put the car into park before losing consciousness. Passed out behind the wheel, I rolled back into traffic and had a minor fender bender, which I don't remember. All I remember is waking, completely out of it, feeling wet and hot and sweaty (found out later I peed myself), and homeless people who hang out at the liquor store parking lot were screaming in the car at me. I opened the car door and fell out. Someone brought me over to a step to sit and get my bearings. I stumbled the whole way, I couldn't tell you what day it was or who the president was. Lucky for me, the homeless people were very helpful. I kept saying how horribly hot I was, I had no idea I was covered in urine. The woman I hit stayed in her car with the door locked. Eventually the cops came and, of course, presumed I was drunk or high and put me through the walk-the-line rigamarol. I failed their tests miserably. I had just given blood. That's why I had a seizure...my blood pressure was too low. I know now that there are many factors, outside of epilepsy, that can cause a seizure. The cops eventually searched my car and found all my blood donation forms and free T-shirt, so they eventually started to believe my half-conscious babbling. The ambulance picked me up and I went to the emergency room. The Dr. there said I needed to go to a neurologist right away, that my peeing on myself was a sign I had experienced a seizure and had not just passed out. I saw a neurologist that week, had multiple eegs that came up positive (tiny little blip in temporal lobe), and I was put immediately and very willingly on Oxcarbazepine. I was so scared, they could have told me to take small doses of Uranium and I would have taken it. I was on Oxcarbazepine for a short period of time, I started getting partial seizures (smelling burnt stuff, tasting metal, hearing music). I also broke out in a big rash on my chest and neck. The partial seizure symptoms were so strange, I'd never experienced them before. My neurologist took the rash and the partial seizure symptoms very seriously. He put me on Kepra, which I was also allergic to, rash all over my throat. I then went on Gabapentin and then, finally, Topamax. All the drugs had serious side effects (mainly partial seizures), but Topamax worked best for me. That said, on Topamax I developed fibro-myalgia in my feet and hands - pain, not tingling - at night, and occasional Alice In Wonderland type Partial Seizures where my hands and head felt humongous! I stated to grow more skeptical. I had never had a seizure up until my first one in the liquor store parking lot. I had given blood that day. It was becoming more and more obvious to me that this wasn't your average day to day seizure, I had a locus, a "cause." Although I was controlled on Topamax for six months and could FINALLY drive again, in January, 2009, I asked my neurologist to wean me off seizure control pills entirely. I promised him that I'd stop driving again for six more months until I could determine what my status was off meds. I needed to know if these partial seizures that he kept upping my dose to control weren't caused by the medication I was taking. He understood that I would never be comfortable with my diagnosis unless I knew what I was like off meds. Lucky for me, I have not experienced any seizures or seizure symptoms since going off medication. One of the side effects of most seizure medications is seizures. Be careful, do not just accept a diagnosis; you know your own body. Sometime life off meds is better than life on meds, but you can't know without a baseline. If you've only had one seizure, don't be scared into believing whatever your Dr.'s worst fears are for you. Under medical supervision, see how you are off meds for a long stretch of time before you go on them. That said, when off meds, Don't drive. Don't drive. Don't drive. Give yourself at least six months. In most states, if you do not have another seizure, you'll be able to drive again. I have been seizure free since I stopped meds, maybe you will be too. It took me over a year of failed medication attempts to try the no meds approach to my seizure disorder. I wish I had tried it sooner, but I was too scared. I have a seizure disorder, but I do not need meds to control it right now. Talk to your neurologist and, with supervision, try to get to know yourself off meds before committing to the regiment he/she prescribes. If you do this, you will need support. Find it in friends and family. I cannot say this enough, find support in friends and family. Find support in friends and family. You only live once. In my experience, the meds for seizure disorders are more extreme than I was lead to believe initially, and can cause seizures in some patients, clouding the diagnosis. -becca-