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.

Sam_Nova | @sam_nova | Jan 2, 2018
In reply to @sam_nova "Greetings, I'm a guy living in Texas that had epilepsy for around 38 years. Most of..." + (show)
@sam_nova

Greetings,

I'm a guy living in Texas that had epilepsy for around 38 years. Most of my life has been good where one medication controls my seizures. Over the last 3 years I been having more issues with random seizures. Currently my doctor wants to put me on a 3rd medication, which means more side affects. I feel that I need to take a couple steps backs and get a 2nd or 3rd opinion on my seizures. What I like to do is get re-asset on my current condition based on the latest technology and treatment. So after doing some research, I found your facilities which was rated very high. I'm not looking to make any appointments right now, but would like to discuss details with someone if possible. I'm hoping there would be a solution with out doing surgery.

Jump to this post

I’m currently taking Dialantin and Fycompa. 3rd medication doctor talking about is Vimpat

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eqvinox | @eqvinox | Jan 27, 2018

Hello everybody! My name is Isabel. I'm an 18 year-old female who had a seizure (tonic-clonic type seems to most closely match descriptions I heard) out of nowhere just under four weeks ago, New Year's Eve morning. According to my neurologist, my CT scan and MRI were apparently abnormal (some sort of collection of calcium towards the front of my brain, as well as a Chiari malformation). Also, my EEG results indicate generalized epilepsy (my maternal uncle was also diagnosed in his late teens, though he hasn't had symptoms in something like three decades now). Man, I've got all sorts of problems. 😛

Since I've only had one seizure, I guess I can't be formally diagnosed yet. I'm not on medication, and my 6-week waiting period before resuming driving lessons is more than halfway over. However, since then I've had occasional periods of what I guess could be considered confusion. It's a little hard to describe, but sometimes I just feel like I can't believe I and the things around me exist. Like someone took me to this strange place and wiped my memory of how I got there. Everything seems so strange all of a sudden, and after a couple/few minutes I'm back to normal. I'll normally start telling myself my name, my date of birth, etc. to prove to myself that I'm not going crazy. Just now I was drawing and I had a particularly strange episode--I got up to get myself a drink, and realized I forgot where the kitchen was. I thought it was behind a door, and when I realized I was wrong, I realized I couldn't remember what WAS behind that door. I've been living in this house since 2009 (minus the four months I was away in college), so it scared the living tar out of me. That's possibly even WEIRDER is that I don't really remember it. This too is hard to put into words, but it almost seems like it was a dream. I KNOW it happened, I KNOW I stood up and looked at that brown wooden door, trying to remember what was behind it, but I don't remember physically getting up and doing said things... ugh, you know what I mean?

I started frantically Googling confusion and epilepsy, which brought me here. According to this site temporary confusion can in fact be a symptom of epilepsy. However, I have apparently been epileptic my whole life, yet it took eighteen years to show any symptoms that we know of. I don't drink or do drugs or anything of the sort. Why is this starting now? Could it have something to do with my seizure, like maybe I bumped my head or something? Does anyone else experience anything like this? I'm kind of concerned right now, as you can probably imagine.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2018
In reply to @eqvinox "Hello everybody! My name is Isabel. I'm an 18 year-old female who had a seizure (tonic-clonic..." + (show)
@eqvinox

Hello everybody! My name is Isabel. I'm an 18 year-old female who had a seizure (tonic-clonic type seems to most closely match descriptions I heard) out of nowhere just under four weeks ago, New Year's Eve morning. According to my neurologist, my CT scan and MRI were apparently abnormal (some sort of collection of calcium towards the front of my brain, as well as a Chiari malformation). Also, my EEG results indicate generalized epilepsy (my maternal uncle was also diagnosed in his late teens, though he hasn't had symptoms in something like three decades now). Man, I've got all sorts of problems. 😛

Since I've only had one seizure, I guess I can't be formally diagnosed yet. I'm not on medication, and my 6-week waiting period before resuming driving lessons is more than halfway over. However, since then I've had occasional periods of what I guess could be considered confusion. It's a little hard to describe, but sometimes I just feel like I can't believe I and the things around me exist. Like someone took me to this strange place and wiped my memory of how I got there. Everything seems so strange all of a sudden, and after a couple/few minutes I'm back to normal. I'll normally start telling myself my name, my date of birth, etc. to prove to myself that I'm not going crazy. Just now I was drawing and I had a particularly strange episode--I got up to get myself a drink, and realized I forgot where the kitchen was. I thought it was behind a door, and when I realized I was wrong, I realized I couldn't remember what WAS behind that door. I've been living in this house since 2009 (minus the four months I was away in college), so it scared the living tar out of me. That's possibly even WEIRDER is that I don't really remember it. This too is hard to put into words, but it almost seems like it was a dream. I KNOW it happened, I KNOW I stood up and looked at that brown wooden door, trying to remember what was behind it, but I don't remember physically getting up and doing said things... ugh, you know what I mean?

I started frantically Googling confusion and epilepsy, which brought me here. According to this site temporary confusion can in fact be a symptom of epilepsy. However, I have apparently been epileptic my whole life, yet it took eighteen years to show any symptoms that we know of. I don't drink or do drugs or anything of the sort. Why is this starting now? Could it have something to do with my seizure, like maybe I bumped my head or something? Does anyone else experience anything like this? I'm kind of concerned right now, as you can probably imagine.

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Hi Isabel,
I can image you are concerned. You ask very good questions. The question about why is this starting now is one you should definitely ask your specialists.
You describe your intermittent states of confusion very well. I wonder if @micakath @twiceinalifetime @robertjr @ahernandez can relate and have experienced similar situations of confusion.

You may also be interested in this discussion.
- Newly Diagnosed and Trying to Process https://connect.mayoclinic.org/discussion/newly-diagnosed-and-trying-to-process/

When do you have followup to discuss next steps?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2018
In reply to @eqvinox "Hello everybody! My name is Isabel. I'm an 18 year-old female who had a seizure (tonic-clonic..." + (show)
@eqvinox

Hello everybody! My name is Isabel. I'm an 18 year-old female who had a seizure (tonic-clonic type seems to most closely match descriptions I heard) out of nowhere just under four weeks ago, New Year's Eve morning. According to my neurologist, my CT scan and MRI were apparently abnormal (some sort of collection of calcium towards the front of my brain, as well as a Chiari malformation). Also, my EEG results indicate generalized epilepsy (my maternal uncle was also diagnosed in his late teens, though he hasn't had symptoms in something like three decades now). Man, I've got all sorts of problems. 😛

Since I've only had one seizure, I guess I can't be formally diagnosed yet. I'm not on medication, and my 6-week waiting period before resuming driving lessons is more than halfway over. However, since then I've had occasional periods of what I guess could be considered confusion. It's a little hard to describe, but sometimes I just feel like I can't believe I and the things around me exist. Like someone took me to this strange place and wiped my memory of how I got there. Everything seems so strange all of a sudden, and after a couple/few minutes I'm back to normal. I'll normally start telling myself my name, my date of birth, etc. to prove to myself that I'm not going crazy. Just now I was drawing and I had a particularly strange episode--I got up to get myself a drink, and realized I forgot where the kitchen was. I thought it was behind a door, and when I realized I was wrong, I realized I couldn't remember what WAS behind that door. I've been living in this house since 2009 (minus the four months I was away in college), so it scared the living tar out of me. That's possibly even WEIRDER is that I don't really remember it. This too is hard to put into words, but it almost seems like it was a dream. I KNOW it happened, I KNOW I stood up and looked at that brown wooden door, trying to remember what was behind it, but I don't remember physically getting up and doing said things... ugh, you know what I mean?

I started frantically Googling confusion and epilepsy, which brought me here. According to this site temporary confusion can in fact be a symptom of epilepsy. However, I have apparently been epileptic my whole life, yet it took eighteen years to show any symptoms that we know of. I don't drink or do drugs or anything of the sort. Why is this starting now? Could it have something to do with my seizure, like maybe I bumped my head or something? Does anyone else experience anything like this? I'm kind of concerned right now, as you can probably imagine.

Jump to this post

Isabel, there is also an active group on Connect talking about Chiari Malformation here: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/

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tparks6 | @tparks6 | Jan 29, 2018

Hey my name is Tekkita and I have a 16 year old son thats living with epilepsy, he had his first seizure when he was 3 due to encephalitis. We were hospitalized for 3months.. After all that we were sent back home with a g-tube and he has to start everything(walking and talking) all over again. He still don't do either and is having 5 or more seizures daily

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 30, 2018
In reply to @tparks6 "Hey my name is Tekkita and I have a 16 year old son thats living with..." + (show)
@tparks6

Hey my name is Tekkita and I have a 16 year old son thats living with epilepsy, he had his first seizure when he was 3 due to encephalitis. We were hospitalized for 3months.. After all that we were sent back home with a g-tube and he has to start everything(walking and talking) all over again. He still don't do either and is having 5 or more seizures daily

Jump to this post

Welcome to Connect, Tekkita. I'm glad you found us in the Epilepsy group.
Managing 5 or more seizures daily must be very hard for both your son and for you. What treatment and medical support do you have for you and your son? Speech therapy, physical therapy? Do you have help with your son's care?

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robertjr | @robertjr | Feb 6, 2018

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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1 reply
iwetklow | @iwetklow | Feb 11, 2018

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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2 replies
Kristin | @jktaheri | Feb 11, 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

Jump to this post

Irene,
I too have the same issue with strobe lights and really most flickering lights....sunshine flickering through the trees while riding down the road is a HUGE problem. Until recently, I had not read of many cases like this. However, I did join an Epilepsy group on Facebook and it seems to not be all that uncommon. I hope you find much validation and some answers here.
Kindest Regards,
Kristin

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Carnation | @carnation | Feb 12, 2018

Irene, I also have sensitivity to the flashing or strobe lights that will trigger my seizures. The Mayo Clinic will have a lot of information that will help answer a lot of questions. There is so much information in their site and the Epilepsy Foundation. There is a CBD Oil being introduced to help control seizures in children and now in adults. Your doctor and the Mayo Clinic may be able to give you the information to help you with The CBD Oils and a lot of other information regarding the seizures. God Bless You.

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