Posted 12/21/2004 12:09 PM (GMT -7)
I was in the EMU this March, and only had to do it once. I was in for 9 days, though.
They glued 34 electrodes to my head and later put in sphenoidal electrodes.
They wanted to catch two seizures, before they released me. But I didn't start seizing until the afternoon of the 3rd day. They took me off all 3 of my AEDs when I was admitted.
They did 4 EEGs BEFORE putting me in there, not all at once, they were done in a series called sleep-deprived EEGs, and they came back with abnomormal activity on all of them in the LTL region.
Then they added the Neurontin and increased it to above maximum dosage, and later added Topamax, which proved to be a disaster, so I was glad to see those two drugs go (Tegretol XR and Topamax), when I was relased.
They did a regular EEG the third day I was there, since I was already hooked up to twice as many electrodes as normal. It induced an Absence seizure, something we didn't know even exsisted.
Then that same night I had a Complex Partial seizure. I was told it was a real doozy.
The next day, I had a Simple Partial and then, I had another Simple Partial seizure that occured during the day as well.
The next day, day 5, they put the sphenoidals in (those are painful and uncomfortable), I had a Complex Partial during the night. The sphenoidals caught 52 Epileptic auras. The close contact they got to the deep part of that lobe, the better readings it got. Alot of the time, auras don't show up on the monitor, so they use this method to catch them, because anyone can say they have an aura, and it not be true.
The 6th day nothing happened.
On the morning of the 7th day, I had a massive Myoclonic seizure, another one we never knew I had.
The 8th day, they started my back on my AEDs (switched the Tegretol XR and Topamax to Depakote and kept me on the Neurontin), because they had to have them back in my system 24 hrs before I was released to prevent any massive seizures from occuring AFTER being released.
The morning of the 9th day, I was released. I finally got to take a shower and get all the body odor and gel out of my hair. It was an unpleasant experience to say the least.
I had 6 seizures in 8 days, all unmedicated.
They were able to locate where it was coming from, and what drugs to put me on. The current ones, are the ones they stuck with.
I found out that I couldn't have the surgery that I was also in there to be tested for, because orginally I was a great candidate for it, but after finding out, that I have BOTH partial and generalized seizures, and the locations of the scars, I can't have it done, ever.
The seizures I have are in areas that affect speech, memory, behavior, and emotions. My short term memory is shot.
I have epileptic aura, SPS, CPS, and SGTC (nocturnal)
Absence, which we later found out, is part of a reflex epilepsy. The Myoclonics I was born with, and have had them all my lilfe and just shrugged them off.
My epilepsy is a syndrome called Mesial Temporal Lobe Epilepsy Syndrome. It will never go away, I will always have it, I will never be able to go off my meds, because the seizures will return within 24 hours of me going off them, I am a poor surgical candidate, I can't have VNS, either, I will always have to take high doses of AEDs, and in multiples, it is partially intractible, and is only controlled to about 60%. It will never get more controlled than it is, and my seizures will always be frequent.
They also found something called "intermittent spiking" every few seconds on the monitor, which means that I have continous on-going abnormal electrical firing going an all the time that never stops. That is how they found this syndrome. The classic symptom or cardinal sign.
That is what they found out from the VEEG.
I only knew I had some type of epilepsy, but not now. I know much more and it is disturbing, because this syndrome is indicative of head injuries or repeated blunt trauma to the head, and I was severely abused by my dad. He would pick me up by my neck, and slam my head on a wall or whatever he could find, used 2x4s to hit my head like it was a ball on a tee, broke my jaw by grabbing it to control me, or push me off the attic landing which was a 20 foot drop.
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!