Anyone else have only one seizure?

SO I had a craniotomy in Nov of "09…Then seizure med for 2-3 months…then 18 months of no seizures…then one day outta the blue had a grand mal seizure. I think the main reason I had the seizure is I was not sleep ing or eating well and me not taking care of myself inadditon to the previous surgery contributed to the seizure.

Now I am having a very hard time with the docs who are saying this one seizure is reason to be on AEDs for the rest of my life. I hate these meds. They make me depressed and tired. I also want to get pregnant and I know people have healthy babies while taking these meds but I dont want to take any chances.

I really want to stop the meds. I think the seizure had more to do with the lack of sleep and not eating. If I take better care of myself, I am sure it will not happen again. Is there anyone else who had only one seizure and then had to be on seizure med for the rest of their lives???

Also, my neurosurgeon said I don’t really need to be on the meds. But the neurologist said I do, so I am very confused so I different doctors telling me very different things.

Hi Mary Kate,

The type of doctor to trust with these questions is an epileptologist–a neurologist specializing in seizures. Your local branch of the Epilepsy Foundation can help you find one. We have gotten VERY bad advice on seizures from neurosurgeons and regular neurologists both–their job isn’t to stay up-to-date on seizure research, and they don’t follow as many patients with seizures. I’m not surprised that your neurosurgeon and neuro aren’t on the same page.

The “definition” of epilepsy is two or more seizures–once someone has had a second seizure without an immediate and obvious cause, the risk of more seizures is high. That said, no one really understands epilepsy well enough to define it. It’s based on a doctor’s best estimate, given your history, of having more seizures. Seizures seem to teach the brain how to have more seizures, so epilepsy tends to get more intrusive rather than go away on its own; this is why doctors prefer to be aggressive when treating seizures.

Even though you’ve only had one seizure, it’s a long time out from your previous surgery, so my own guess would be that it’s not just an isolated incident related to that. It’s also possible that you’re also having mild seizure activity or nighttime seizures that you aren’t noticing, but which are still affecting you. (This was the case with my husband, when he was on the wrong seizure med. We found out about his invisible seizure activity on an EEG, and changing to another med took away a LOT of problems he was having.) Have you had EEGs to test for this?

In the end, it’s your decision about treatment, and you might decide to try lifestyle changes as seizure control. Before you decide, though, I really want you to get all the facts from an epileptologist so you can make an informed decision. If the advice all points toward staying on meds, there are so many different ones that you can try, and an epileptologist will know which ones have the least risk of the side effects that are bothering you.

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Have you been to a seizure specialist?
Some people refer to them as epilectic specialists or epic-neurologists.
Good luck with your decision…it is a hard one!

I am in a similar situation, Mary Kate. I had my craniotomy in July 2005, was on seizure medication for a couple of months afterward, then ended up having a grand mal on Christmas Day, which was just about 5 months after my surgery. In the three days leading up to Christmas, I went for a long drive out to visit my wife’s family, spent the night at their place and hardly got any sleep. We drove back home the next morning, went to a party with my extended family (over 40 people when you include aunts, uncles, cousins, etc.), then we spent the night at my parents’ place that night (Christmas Eve), spent the nexy day with my family, drove home that night. Once we got home, I started unloading gifts from the car and carried them upstairs to our apartment. Not 10 minutes later, I had my grand mal.

I have been on Keppra ever since. I have expressed to my neurologist/epileptologist that I would like to go off of the meds and while he has significantly reduced the doseage, he refuses to take me off of the meds completely. My argument is that I had my grand mal 5 months after my surgery, and I was obviously still healing at the time, so the combination of the physical trauma, the stress, the lack of sleep and the rich holiday foods were enough to trigger the seizure. My neurologist’s agument is that while I may be right, it is also entirely possible that the damage to the nerves as a result of the surgery could have made me permanently vulnerable to seizure activity. He said by keeping me on a certain level of Keppra, it may be possible to feel a seizure coming on, but would keep it limited enough that I would not be hit with another grand mal.

As much as the side effects of the meds may be annoying and make life a bit difficult, I am with the docto in the respect that it is worth it if it will save me from having a seizure while driving and possibly kill myself and some innocent victims.

Nicole, yes, Uno! Only 1 Seizure. The big one; the morning of the bleed! After the crani I was on kepra in the hospital and then for about 3 months. Then my neuro said i could bag the Meds! I’ve been off seizure meds for 2 years!! Knock on wood! I have never never had another seizure; at least not another Grand Mal! Definatly none that i am aware of! No Meds No Seizures but my family sold my car so i don’t drive any way! sucks to be depedant on my family for transport!

I just had my first Grand Mal Seizure. I have had a craniotomy 5 years ago to remove my AVM and was placed on meds for one year following in case of seizures. I then stopped taking the meds and have been fine ever since. Until recently… I week ago I had a seizure and crashed my car. I am well, but this never happened before. I was told that perhaps with stress from work and other things in life, my brain might have swollen and touched the sensitive area of my incision of the brain. That might have caused it, still not sure. I am now back on Lamictal for seizure control.