Wonder how many I've had

[valeriedl]

I try to keep a very good seizure diary with how many and how much information about the seizure I know. Since I've got a RNS the neuro can tell me how many I've actually had. I might think I've had three a month but it's really been ten , hopefully not that many though. A lot of them are happening in my sleep and I don't know that I've had them unless something major happens during it.

I've got an appointment on Friday, hope it's not too many.

 

[Sabbo]

I also keep a diary/record of my seizures. It's easy to record the simple partial seizures--I feel them come on, and I'm aware (partially) of stuff around me. The complex partial seizures, though, are a different story. Unless I do something to myself, notice some type of time lag, or there are witnesses, I don't even know that/when one has occurred. For example, my son & I were going to my mother's house recently, & I suddenly noticed that we were in the community center parking lot. My son said I was having a seizure, so he pulled in there to wait until I was out of it.
That's with the huge dose AEDs I take daily--500mg Zonisamide & 300mg Xcopri. My neuro wanted to raise Xcopri 50mg/month--insurance was requiring ME to pay nearly $700 for a 1-month supply. I said NO THANK YOU--I'll put up with the breakthroughs

 

[Heavy Kevy]

I’m fortunate my wife notices most of my nocturnal episodes. There’s no way she could recognized them all.
I’m getting familiar with how I feel the following day. So I’ll make a note in my SZ calendar.
I’m back up to 2 a month. Luckily still nocturnal but my recovery time is getting longer.
The recovery is not as bad as it was before my surgery a couple years ago. So that’s good

 

[suebear]

I always have an aura prior to the seizure. My warning strike a seizure is about to take place. When that comes about I can use the VNS 95% of the time to stop them from moving forward however it is that other 5% when an absence will follow through. These days I've reached 3 a month which has been just fine showing the DBS and the VNS are working together keeping the seizure flow down to a minimum.

I am constantly keeping track of activity on my smartphone journal along with after activity should I get migraines as I do use Ubrelvy or higher level pain medication to take care of them.

 

[Sabbo]

Using a VNS wouldn't help me BECAUSE I'm unaware of the onset of my complex partials.

 

[cadsgj]

Very interesting to read this. I keep track of all my seizures... being an older guy I have simple complex, complex, and grand mal. The complex seizures I almost always know they are coming, but the grand mal I never know until I come back from it. Like others, I write down all the main info on just what I know happens. My grand mal of course I leave the world, my complex it slowly comes but I leave to point I see everything but know nothing, and my simple complex life just changes weirdly for a short time.

My neurologist doesn't really care about most of the information I save, only what exactly happened... go figure Many of you others here at
coping-with-epilepsy have it much worse than I do it seems and my prayers are with you!

 

[valeriedl]

I found out after my last visit 3 months ago that I knew that I'd had 5 but I'd actually had 26. Quite a big difference! I didn't ask him when I'd had them. I know I should have, but I'm sure I had some in my sleep. Usually if there's no one there to see me have the seizure then I don't know I've had it unless I've got a bad headache.