Share this:

Living with epilepsy - Introduce yourself & meet others

Posted by @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?

REPLY

@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?

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.

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

@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

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.

@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.

Jump to this post

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

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

Janna Seizure disorder Non Epileptic…. New on here!

@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.

Jump to this post

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!

@tracy612

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

Jump to this post

Hi Tracy… I’m new on here. My seizures sound very similar. I do not have Epilepsy. I’m on Keppra as well. I will go for a week with no seizures to 6-12 in a week. I have 8 concussions and my life went from being very active to unemployed and loosing many days of confusion and saying things that don’t make any sense. I have applied for disability because I have no income. These started from a fall in 2016 and have continued. I was in Mary Freebed a rehabilitation center in MI for 3 months. I’m home bound and so sad about my life changes.

@colleenyoung

Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I’d like to invite you to the new group dedicated to discussions about epilepsy and seizures. It’s a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

Hi I am one caring for my brother who is having epilepsy since his childhood. Now he is 35 years old, and we can't find any cure for his disease. We recently have EEG and MRI reports but Dr also advise us to take further tests for investigation of tumor related case. Please help us to find right cure for this disease. I will be sharing these tests with you if you would ask.

Hello, My name is Katie, my son is 10 And has a genetic disorder that causes partial complex seizures. He is currently using CBD to control them. He has tried Trileptal, kepra, and Lamitcal for AED's , he has been screened for temporal lobectamy, and been on the Modified Atkins Diet. So far the CBD is the only thing that controls the seizures with any accuracy. He's only had 1 seizure since he was weened off Lamitcal and that was due to a fever. Always good to connect with others dealing with epilepsy. Thanks!

Welcome new members @kneubauer1 @janna520 and @tracy612.

@kneubauer1, please meet fellow "epilepsy moms" @tparks6, @patrassi, @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You can read more about them in these discussions:
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Kneubauer, can you tell us more about how the CBD oil works for your son?

Janna, you might also be interested in this discussion about concussion:
– Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

Tracy, I'm glad you found this group too. When you sense a seizure coming, and smell dark dirt, do you have enough time to make yourself safe? What tends to trigger the seizures?

@colleenyoung

Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I’d like to invite you to the new group dedicated to discussions about epilepsy and seizures. It’s a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

Welcome, @sarfraz. Has your brother's epilepsy worsened? Is that why the doctors are suggesting further testing at this time to investigate a possible tumor being the cause?

@colleenyoung

Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I’d like to invite you to the new group dedicated to discussions about epilepsy and seizures. It’s a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

Jump to this post

These are the reports of previous tests including Dr,s surgical advice after viewing MRI and EEG reports. His right eye is not normal but there is no eyesight and blurring problem but popped up forward little bit as compare to his left eye and when there are period of seizures are going to happen his right eye also increase in size little bit. Please suggest what we can do now.

Please login or register to post a reply.