The minute we got home following the neurologist appointment when I got my test results the count down began. I marked on the calendar what would be the 90th day following the first (hopefully only) seizure when I could finally drive once again.
August 24th at 7am I was awakened by my hubby. He told me, “you just had another seizure.” My response was simply, “oh crap,” then I went back to sleep. It wasn’t until several hours later I awakened, sore, head splitting with a migraine and a bit confused as to why I had been asleep so long and why my hubby was home on a day he should have been at work. That’s when the reality sank in that I indeed had another seizure.
The neurologist had told us if I did have another we didn’t need to call 911 unless the seizure lasted longer than 5 minutes. All there was to do at this point was try to rest.
The next day David called the neurologist and left a message that I’d had a second seizure. It had only been 67 days since the first seizure.
We were a bit surprised that the neurologist never called us back.
During that time my husband’s father was not doing well. He was in a nursing home and his health was going up and down. We were also at that time preparing to make a decision as to whether or not to renew the lease on our apartment or not. Add on top of that the new school year was beginning, which is one of the intensely busy times of year for my hubby who works for the school district.
What we had both forgotten was that we had left our old cell phone company. We decided to go with trac phones until after the start of the new year. So the neurologist DID try to call us back, but we had new numbers and he only had our old numbers.
Later on in September as we were in mid-move from our apartment to a house rental, David’s father passed away. Let’s just say that 2011 was a very tough year for many reasons.
In January we received a reminder card in the mail from the neurologist’s office. It was time for my 6 month follow up appointment. Before we even had a chance to call and set up the appointment I had seizure #3. January 5, 2012 at 4:55am came the tonic-clonic. This one was a tad different. For some reason I regained consciousness at the end of the clonic phase. I heard the sounds I was making, saw my arms jerking and couldn’t do a darn thing to stop either. It was the end of the clonic phase, so it was only a few seconds that I was aware I was seizing, but wow, it was a very weird experience!
January 13, 2012 I had the follow up appointment with the neurologist. We talked about the 2nd and 3rd seizures. He gave me a sort of “hand slap” about not being able to get ahold of us after the 2nd seizure and said we needed to get me on medication to try to stop and/or control the seizures. He again asked Dave the specifics of the seizures and asked me specifics of the post-ictal phase of them.
During the discussion he asked if I ever stared off in space (and explained absence seizures). I said no and then double checked that Dave had never seen me do that. Then I asked about something that’s bothered me for years. I told the neurologist about how on occasion I will go to bed at night and as soon as I lay down I hear voices or music, sort of muffled, like a tv or radio was left on in the other room. It has caused me on more than one occasion to get out of bed and check that tv’s & radios were off.
The neurologist simply said, “hmmm,” then changed the subject back to trying the medication Keppra. All I could think at that point was, “great, I’m having seizures and NOW the neuro thinks I’m nuts too!”
Since that time I’ve been learning a great deal about epilepsy and the many different types of seizures… one of which is exactly what I described to the neuro (music /voices) and is considered a simple partial seizure! I’ve also discovered that several things I’ve always brushed off as being symptoms of my fibromyalgia are in fact simple partial seizures as well.
It would seem my seizure history goes well beyond that seizure on 18 June 2011! Recently, I was reminded that during my first marriage, while living in Yankton, South Dakota… I had a tonic-clonic seizure after a routine blood draw in my doctor’s office. That was sometime around 2002 or 2003. I’d forgotten all about that!
Needless to say, I have a great deal to discuss with my neurologist at my upcoming appointment on 14 March!
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