Dawn,
When
I had my siezures I never blacked out.So you still can have siezures without blacking out.Mine started when I was 2 at first it was just in my left leg and when I got older it would start in my left leg and then my left arm and face.
Trish (jiminycricketblue)
From: Dawn <dgroeschen@straitscorp.com>
To: epilepsy@yahoogroups.com
Sent: Friday, September 23, 2011 9:47 AM
Subject: [epilepsy] Does this sound like epilepsy???
I have been part of this group for a few years, after my son Jonathon was diagnosed with epilepsy in 2008. I have had some issues lately, and I need another opinion. This is going to be kind of long, but I want to explain everything that happened in the last couple weeks.
On 9/11, I was at church, about 5 minutes into the service, and I thought I was getting a migraine. I took my pill, and figured everything would be fine within 1/2-hour. About 5 minutes later my right hand started shaking hard enough that I couldn't read a paper held in that hand. I thought it might be hypoglycemia, so I had a cup of juice. The shaking got worse until my entire arm was involved. We have an EMT at our church, and he came to check on me. He suggested that it might be a petit mal seizure, which I was also beginning to think. After 20 minutes, I decided I should go to the ER, so my mom drove me. About 10 minutes later, she stopped on the highway and called for help, as I started having a full-body seizure that lasted about 5 minutes, and started again about 1 minute later, right after the ambulance arrived. I was conscious the entire time, and was able to try to slow down my breathing as the medics were telling me.
About 15 minutes later, we arrived at the hospital, and within a few minutes I had another full-body seizure, again staying conscious. They gave me ativan and sent me for a ct scan, which was normal. I had one more seizure in the er before they admitted me. Everything was fine until about 4:30 that afternoon when my right arm started shaking again and I again went into full-body seizures (my husband lost count around 35 seizures). Two more doses of ativan, and we thought everything was okay. I had been told in the er that I would also be having an mri that same day, and they kept putting it off until my family doc found out about the round of seizures I'd had, and ordered it stat. The mri was normal, and I was taken for an eeg the following morning. My arm was shaking off and on the entire night, and during the first part of the eeg. As soon as the strobe lights went off, I had a full-body seizure. There were a total of 5 rounds of flashing
lights, and I had seizures with the first 2 rounds and the last 2 rounds. During the final portion of the eeg when I was supposed to try to sleep, I had one more seizure.
A neurologist came up later and explained that I had generalized epilepsy according to the eeg. He and another colleague in his practice had reveiewed my eeg and agreed that it was epilpesy. He started me on keppra (1000mg in iv, 500mg by pill for later doses <2 oer day>). I had several episodes of my arm shaking between the first and second doses, but everything seemed to have settled down, so I sent my husband home for the night to stay with our boys. I woke up around 1:00 a.m. with my arm shaking and called for the nurse. It quickly progressed to full-body seizures, and I was given 2 doses of ativan, about 30 minutes apart. After an hour, I was given 2 doses of valium, about 30 minutes apart. I asked them to call my husband, but that didn't happen until I asked again about 30 minutes later (I was in and out of it by that time). The neuro who had been assigned to me was not returning the hospital's calls, so my family doctor was consulted, and
he had me transferred to icu, where the seizures continued for a while longer, but I think I finally lost consciousness, because I don't remember anything until about 7:30 a.m. My family doctor checked on me and transferred me back to the neuro floor, and I received another keppra before the neuro came to see me. He stated that I wasn't responding to the keppra (I thought I was because everything seemed to be slowing down about a 1/2-hour after each pill, but I didn't think it was strong enough, as I know how much keppra my son had been taking). He added dilantin (1000mg by iv, then 500mg pills). I got my first dose right after I'd eaten lunch, and I got sick (vomiting) soon after. The nurse came and gave me something to settle my stomach (I'm not sure why--my stomach settled right down after I vomited) but I don't recall what she gave me. About 30 minutes later, I started having hallucinations (kind of like the movie Fantasia, where it goes from
cute characters to demons and scary stuff without much warning) and had several more full-body seizures. I was aware of everything that was going on, but was unable to respond to anything and couldn't open my eyes. I was also very emotional during this phase, and even started clawing at my head. I really don't know how long this lasted--I'm guessing one to 1-1/2 hours.
The neuro came back in later that evening and announced that I don't have epilepsy, withdrew all meds, and said I needed a psych consult, after he had a colleague at another hospital review my eeg. He said that I was having pseudoseizures that were most likely due to stress.
My family doctor came in the next morning and stated that he was stunned with the neuro's change in diagnosis. Family doc is very familiar with our entire family, and disagrees with the stress diagnosis. He cancelled the psych consult, released me (9/14), and put me on xanax to try to keep the seizures down until I can get into the University of Michigan epilepsy center on 10/10. The shaking in my arm continued until 9/18, and I had one minor seizure during that time (after intercourse). I missed a pill earlier this week, and my head felt funny the next day, until I had gotten 2 doses in (I'm taking 4 tablets per day).
We have a family history of epilepsy (our son, my brother, and a couple 3rd cousins on my dad's side). I know that it isn't "normal" to stay conscious during seizures, but there are many recorded cases where people don't pass out. I'm wondering if we should continue to wait for the appointment, try to find a different neuro around here, or try to schedule a psych consult (I dont' feel stressed, and the most stressful times in my life <surgery on our 4-month old son, type 1 diabetes diagnosis of our other son, epielpsy diagnosis of same son, along with 2 eye surgeries for him> have not caused pseudo seizures, so why now?)
Any opinions/discussions would be much appreciated!
Dawn
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