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My story to introduce myself

Tue, 05/14/2019 - 20:16
Hello. Im Ken. im 30 and have epilepsy as well have had a craniotomy for an Pilocytic astrocytoma that was in the center of my brain. Originally i was not diagnosed with epilepsy untill about 3 years ago when the seizures started. ive been in and out of nuerologist offices here in Jacksonville and feel that im getting the same right off ticket like i did in alabama when i use to live there with the baptist area and other localized doctors back there. this past thrusday i have the worst spill ive ever had with having a seizure for about 20 mins aswell as no memory or recolection of were about's. my father said i walked my self to the bath room but i dont remember any of that and i dont remember throwing up in the shower. when i came to i was infront of the toilet with massives amounths of blood everywhere from biting my tongue 10 ways to sunday with a huge deal linier split on the center right side. Since then of corse my pain is threw the roof with my tongue but what has me scared if my upper jaw... my whole row of teeth up what feels like in to my skull bloody hurts. there is thought that i bounced my face off the ground(solid oak wood flooring) because i was standing up when this seizure happen. Now i have had a couple grand mals over the last 2 years with each getting what seemingly a little worse each time with the first one just 24 hr memory loss, the 2nd to last one i did bite my tongue but was a small nick on the side, but i never have had this much pain from a seizure.... it was strong enough that last night when taking my carbamazepine and using my medical cannabis like i have for the last 5 months, i had a massive panick attack that put me in the hospital and now am taking ativan to keep calm and relaxed. My question is has anyone with epileptic events that strong and possibly with having a crainotomy ever experienced something that painful in there face? Ill probably repost this in the men with epilepsy aswell.

Comments

forgot to put it in there but

Submitted by Laddken on Tue, 2019-05-14 - 20:17
forgot to put it in there but my whold time frame that i dont remember last about 2 hours on thursday****

Hi Ken, Thanks so much for

Submitted by Anonymous on Wed, 2019-05-15 - 08:51
Hi Ken, Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that follow up with your health care team to discuss any changes in side effects, behaviors, symptoms, or seizure types  https://www.epilepsy.com/learn/types-seizuresYou may want to consider with your health care provider having a device that can help track your seizures, by visiting  https://www.dannydid.org/ , so you can share this information with your healthcare team. Using a seizure diary  https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , as another self-management tool may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers.Please visit  https://www.epilepsy.com/learn/challenges-epilepsy  & https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory for information on epilepsy and memory issues. For additional information regarding surgery & safety please visit https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery   & https://www.epilepsy.com/learn/seizure-first-aid-and-safetyIt can be helpful to connect with other people who live with epilepsy to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at epilepsy.com/localsupport ,then contact them to find support groups, events, and programs in your community www.epilepsy.com/affiliates You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org,  epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support. 

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