Living with epilepsy - Introduce yourself & meet others

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!

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!

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.

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?

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?

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.