1. < Epilepsy & Seizures
Moderator

Living with epilepsy - Introduce yourself & meet others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 7, 2016

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let's learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. You're likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

12271997 | @12271997 | Mar 22, 2018
In reply to @robertjr "Hi Isabel,ive had grandmals from 5 years old to now,im 63..The confusion soundslike me after a..." + (show)
@robertjr

Hi Isabel,ive had grandmals from 5 years old to now,im 63..The confusion soundslike me after a seizure ,things seem familiar but parts of my memory are missing,As the months go by the memoryof my sezures disappear..My confusion through theyears is more like the epilepsy is taking parts ofmy memory..Ive gone long enough 58 years,to realize that even beiing free for amounts of time such as 5 years doent mean much.Had a 5 year span .then bac! to normal..epilepsy will be with alwaysbut learned to live with it.

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How are you dealing with that? I'm almost 43 and I have people wondering if I have early althiemers dementia? My neurologist says no I don"t .Seizures are being controlled with meds lamotrigine xr 250mg in am, valproic acid 500 mg, Clonazepam 0.5 mg, Mirtazepine 30 mg, divalproex sodium er 500mg, and Onfi 10 mg all in pm. I also had the lesion that was causing the seizures on the left temporal lobe and left hippocampus removed in 2012

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12271997 | @12271997 | Mar 22, 2018
In reply to @iwetklow "Hi. I’m Irene from Az. Retired and enjoying. I have photosensitive epilepsy. Strobe lights or certain..." + (show)
@iwetklow

Hi. I’m Irene from Az. Retired and enjoying.
I have photosensitive epilepsy. Strobe lights or certain pattern will trigger a seizure. I haven’t read much with others dealing with this type. I am not on any meds. Trying to use avoiding triggers. 8 years ago I tried meds and there were too many side effects.
I am glad to find this site.
Blessings
Irene

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Two things that help are put on sunglasses or cover one eye. Small led lights moving quickly and the stupid lights on the children' shoes especially when there running can give me a horrible migraine on the left side of the brain where the left temporal lobe is located

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jenkie | @jenkie | Apr 3, 2018

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

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3 replies
joedavid | @joedavid | Apr 18, 2018

Hello,I had a grand mall seizure in 2014 and i believe it was caused by mercury poisoning from my fillings.Has anyone else think they have any neurological issues from amalgam mercury fillings in their teeth.All the research i have done makes me believe that is my issue.i have found people on line that were told they had ms and found out the mercury caused the issue.For some reason every doctor i have been to will not admit mercury is a neurotoxin.would really like to hear from anyone that has any info on the mercury and what to do to get it out of your brain.

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1 reply
brailoo1217 | @brailoo1217 | May 1, 2018

Hi Everybody.
My name is Brai. I suffer from Partial Complex Seizures(Temporal Lobe) also paired with Severe Depression & Anxiety diagnosed in middle school(now 24). I had a fibril seizure when I was a baby and as I got older everything just continued to grow and symptoms kept adding up until I could fully convey what was going on and tada epileptic. My seizure threshold is unfortunately pretty sensitive but my doctor is trying to keep me on meds that are safer for "the young people" who still want kids and have lots of life ahead of them haha. Currently my meds are all over the place dealing with some life changes.
Daily :
Maxed out on Keppra
250 of Vimpat
Zoloft(recently weaned off of due to complications with my epilepsy)

I'm hoping to try and find some support as my depression and anxiety have gotten worse and I'm not finding much support in family/friends. I've been living with this condition since middle school so it's nothing new but as I get older things keep changing and progressing.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2018
In reply to @jenkie "My daughter is 17 y/o and has had seizures for 7 1/2 years due to the..." + (show)
@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

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Hi @jenkie, fellow member @shanef86 wrote about taking CBD oil for seizures, saying they didn't help his seizures directly but helped with the feeling of anxiety. You may also wish to read @kneubauer1's posts where she describes how CBD oil helped her 10 year old son. I'm also bring @carnation into this discussion.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2018
In reply to @joedavid "Hello,I had a grand mall seizure in 2014 and i believe it was caused by mercury..." + (show)
@joedavid

Hello,I had a grand mall seizure in 2014 and i believe it was caused by mercury poisoning from my fillings.Has anyone else think they have any neurological issues from amalgam mercury fillings in their teeth.All the research i have done makes me believe that is my issue.i have found people on line that were told they had ms and found out the mercury caused the issue.For some reason every doctor i have been to will not admit mercury is a neurotoxin.would really like to hear from anyone that has any info on the mercury and what to do to get it out of your brain.

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Hi @joedavid, have you considered have the fillings replaced?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 2, 2018
In reply to @jenkie "My daughter is 17 y/o and has had seizures for 7 1/2 years due to the..." + (show)
@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

Jump to this post

Jenkie, you may also be interested in this discussion

- Medical Cannabis as a treatment for Seizures https://connect.mayoclinic.org/discussion/medical-cannabis-as-a-treatment-for-seizures/

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tree2fly | @tree2fly | May 3, 2018
In reply to @jenkie "My daughter is 17 y/o and has had seizures for 7 1/2 years due to the..." + (show)
@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

Jump to this post

CW Hemp, good quality CBD oil extract, a little slow on delivery, order the Bonus pack, 5 bottles for the price of 4.

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Brian | @briandungan | Jun 4, 2018

Why Would adult be diagnosed with Lexical Gustatory Syndrome? When originally diagnosed with epilepsy?

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