Hi Dawn
I feel for what you are going through at this time. I have had ep for a long time and have it in the family
as well. Stress can show itself as being over excited/happy and probably other ways as well depending on the
person.
I have also had experience with pseudo seizures and don't now get stressed out hearing that word. Our
daughter had pseudo ones, when you mentioned 35 this is what came to mind here, as she had them by the
hundreds per day. The best dr to explain and diagnosis them to you is an epileptologist who deals with
epilepsy alone. He told us after that most people with epilepsy also have pseudo ones. That pseudo were to be
taken just as serious as the real ones and also given basically the same med. in order to control.
You could very well had a type of seizure earlier in your life and not realized what it was. Many people do
and therefore don't get diag. until later on.
Please feel free to contact me any time. I know I have had pseudo ones now and then (Generalized GM. are the
main ones, but have all types) even though they have not been diag.
Best of luck to you
Keep smiling
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: "Dawn" <dgroeschen@straitscorp.com>
To: <epilepsy@yahoogroups.com>
Sent: Friday, September 23, 2011 8:47 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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