Living with epilepsy - Introduce yourself & meet others

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 group.

@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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@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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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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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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@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

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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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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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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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@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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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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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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@carnation

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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Thanks, I have not heard of CBD oil. I’ll research it.

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Greetings, my name is tracy612. I have had siezures for about 4yrs now. They started on the operating table during my 3rd neck surgery. The first yr was horrible, with all the seizures and tests, and accsidents that went along with the seizures. That first yr was so active, that I ended up with slight brain damage in my frontal lobes. Nothing has been the same sence then. I have Chronic fatigue syndrum, a skin condition, called Sneddens Wilkenson, and my balanne is poor. I went from being a nurse for 25yrs and an EMT to not being able to leave my home. I recently had 7 seizures in 1 afternoon, and I lost 4 days from them…Before that day, I was only having 1to 2 a month. Although I did recieve some blessings from the seizures, like colors are so vivid, ive taken up painting rocks, and i now am involved in all types of crafts,(your trash is my craft)..I still dont understand my diseace very well, and im scared I might get early onset Altimers or/dementia. I just want to talk with others so Im not feeling so alone…I have unconscience onset gand maul seizures, im on 2000mgs of Keppra,..and everytime i have a seizure I cant remeber things. Sometimes I cant understand what folks are saying to me, and sometimes, I will say a complete paragraph, and its off topic and makes no sence to the people around me..I smell dark dirt right before a seizure and I loose my taste buds for days after..Thanks for listening,..im glad i found this group…Blessings Tracy612

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Janna Seizure disorder Non Epileptic…. New on here!

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@vanessapaugust

Hello, my name is Vanessa and I’ve been dealing with seizures since 2012. Of course I have been going back and forth with trying to get disability or some sort of income. I am planning on moving with my mom now in Chattanooga, TN and would like to chat and meet people in this area.

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Vanessa I started having seizures in 2016 I applied for disability as well I’m 55 and have had no income since August of 2016. I have not been denied but also have not been approved as of yet! What do people do? It’s crazy and so hard!

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