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Video EEG
Sun, 04/15/2018 - 16:01Hello everyone,
Has anyone here had more than one Video EEG? My first Video EEG was for 3 days and did not capture any abnormal activity-this Video EEG was done at Kaiser in 2015. I was on medication when I had Kaiser coverage...the medication prescribed was Keppra. I felt the Keppra reduced my episodes every month. After the Video EEG was normal, I was taken off the Keppra cold turkey and started having my episodes regularly. Between 8 to 12 per month. Previously, I was diagnosed with Simple Partial Seizures.
I now have different medical coverage and the Neurologist referred me to an Epileptologist due to not knowing whether or not I have seizures. I'm told my case is complicated, hence the referral. I'm not on medication at this time. Stress is one of my triggers. It seems I go round and round with this. Honestly, my symptoms feel like I'm having mini strokes, but my body also shakes during these episodes. My brain feels electrified sometimes after an episode and my brain feels foggy-spacey, weakness in my legs and tired. I've been asked to see a therapist due to the difficulties in diagnosing me.
Just thought I would reach out to others here to find out how many Video EEGS you have had and your difficulties in being diagnosed. I don't think anyone wants to have Epilepsy, but sometimes the doctors want to blame our symptoms on mental issues. Hmmm!
Thank you for your input and responses.
Maggie
Comments
HI Michael,Thank you for your
Submitted by Maggie55_5aac30a613b52 on Wed, 2018-04-18 - 05:57
HI Michael,Thank you for your response. You have been through quite an ordeal. I hope the RNS works for you. Sometimes medications stop working, I think our system gets used to the meds and we no longer have the therapeutic levels we need to control our condition. Hang in there.Maggie
Hi Joe,Thank you for the
Submitted by Maggie55_5aac30a613b52 on Wed, 2018-04-18 - 06:02
Hi Joe,Thank you for the information. I've always thought my symptoms seemed vascular, but the shaking is what throws the doctors off on diagnosing me. The odd thing is turning my head to the right initiates an episode (intermittently). To me my symptoms feel left sided like a stroke-mini strokes possibly. I'm just lost at this time, waiting to see what happens.Thank you,Maggie
Hi Maggie,I went in for my
Submitted by birdman on Mon, 2018-04-16 - 09:55
Hi Maggie,I went in for my first EEG monitoring in late 1990. After a couple of days with no seizures they took me off the Dilantin I was on and I still waited. I think I had my first seizure after more than a week of monitoring; they wanted 3 "good seizures". After 12 days or so I had the three seizures they needed and by day 14 I was released. This was so crazy! At home if I missed a single dose I was very prone to seizures. In the hospital I felt so foolish waiting so long despite no medication. Months later another EEG was performed. This one took 10 days. Brain surgery was performed in 1993 where they removed a good chunk of my right temporal lobe. The seizures continued so a third EEG monitoring was done. They implanted depth electrodes. After 5 days of testing I was told that I had a left temporal lobe focus and no more surgery could be done.More than twenty years have past as I waited for alternative treatment. I tried some of the new drugs since then only to confirm they do not work. Then RNS was approved and I wanted to be tested for getting the leads implanted for this treatment. I had a fourth EEG done in February 2017. It lasted six days and I was told they only saw seizures erupt from the right temporal lobe so they suggested more surgery on the right. I went for a second opinion and the doctor agreed that RNS was a better option. But we still need to redetermine that left temporal lobe focus since the last EEG that recorded seizures on the left was in 1994. I will visit with epilepsy specialist next week to discuss what's next. Maybe they will implant RNS lead on the right, then if seizures continue they will need to do EEG #5!