Living with epilepsy - Introduce yourself & meet others

Hi, @briandungan - I've moved your post asking about why one might be diagnosed with lexical-gustatory synesthesia when originally diagnosed with epilepsy here to this discussion, as some of the members here like @brailoo1217 @robertjr @12271997 @jktaheri @tracy612 @jktaheri may have some thoughts for you on this question.

Is lexical-gustatory synesthesia a new diagnosis for you?

It's Lennox-Gastautsyndrome

It's 12271997 I don't have that condition

My son aged 25 is having seizures. His birth was difficult and there was a lump in his head. Once it was crashed then started the problem. Seizure, i.e. tongue biting and hands & leg stripness occured. No other type of seizure. That too only during nights. 2 or 3 episodes only. He is under medication for a long time and doctors have itold that if seizues does not occur within 4 -5 years then it won't occur. Is is true. But he is continuing treatement. Divuna-ER, Dicorate 500 he is taking.

It's12271997 It's not my birthday. I'm not having anyone respond to agraghia/ anomia conversation. Can you help me?

I have had Epilepsy for 51 years. I’ve mainly suffered Tonic Clonic and Convulsive Status Epilepticus which ended me up in the hospital in induced coma’s for various periods of time and more often than I care to remember, even if I could. My first episode cost me all my memory from age 15 back. None has ever returned. I also had focal and absence seizures but not as many. I’ve had over 13,000 seizures in 46 years. I was a frequent user on various Epilepsy forum sites. I also raised money for Epilepsy research. I have ended up falling down staircases, falling off my bicycle between parked cars, in the gutter on peoples lawns and almost anywhere else one can imagine.
I really enjoy trying to help others new to this most distressing condition and the stigma that goes along with it.

Venki, The stupidity of some doctors is ridiculous and never ceases to amaze me. ABSOLUTELY NO ONE can predict if or when a seizure will occur. I suppose the possibility of not having seizures as time passes may increase the probability of them not returning however if medication is controlling the seizures over that period of time then all bets are off. There is never any guarantee. If your son had a normal Neurological exam, normal EEG, and MRI and is not on any anti-seizure medications during those 4-5 years perhaps his chances are higher he may not have more seizures. Never assume they are gone forever. I’ve seen seizures return after 25-45 years later. Another thing to remember is once you stop medication the possibility does exist seizures can return more severe and frequent.

hi jakedduck1,ive had grand mals since i was 5 ,now 64,losta lot of memory through the years,most of my schoolyears forgtten.might be for the best,didnt really have much enoyment as a kid,always worried about aseizure in front of everyone.Never kept track ofseizuresdidnt want too.memory of seizures seemto fade away..To me im 64 and still around,alot bad situations but still in one piece.Just wish i hadnt let my problem kept me in the background during my school years,few friends,no sports,nogirl friends,no prom.kindabothers me now

Hi Robert,
E for 59 years, long time huh. I’m 65 and had E for 51 yrs and have had some of the same problems so I can relate to how you feel. I sometimes feel like you about the childhood memories. However when looking through our old pictures I really miss the memories that go with them, especially those of my parents. I didn’t even know my parents when they picked me up to take me home from the hospital after being in an induced coma for a month. It was so frightening to go with basically strangers to who knew where. But it all turned out well. My parents sat with me one on each side with pictures and explaining where, when and all the details. We sat for hours they answered all my questions. The nurse had called my parents and told them how scared I was to see them. When they did the Mental Status Test I was Oriented X1 which means you only know who you are. I’m not sure I knew that much.
I was recently thinking about the prom too. No girlfriend here either. It’s painful to know all the things we missed during our younger years (assuming you missed the same things too.) I do wish I remembered something about my best friend though. I see him occasionally and it’s somewhat awkward. Even now I don’t remember trips. I went to Yosemite with a couple friends and don’t remember the trip at all. Don’t remember anything about the Worlds Fair in New Orleans except the horrible humidity. It’s like that about everything I do. To this day my brother can name virtually every city we went through and what the wether was like in those cities. My brother when talking about our childhood with my mom he always says “Do you remember, no you don’t” and I don’t. It doesn’t bother me at all. I also had very few friends even now I have only about 3 friends (true friends.) Having seizures in front of people never bothered me since I was usually having one. I was asked to leave school in the 10th grade since the floor was my desk most of the time. If I wasn’t seizing I was post Ictal. I’ve had seizures everywhere, roof, tree, on bike, driving, stairs, middle of the street, swimming pool, space mountain at Disneyland you name it. I laid on the floor a lot while watching TV since I’d be there soon anyway. Are you still having any seizures Robert?

Jeez, sorry about the book Robert. It helped to get some stuff off my chest. The worst thing is my lack of a sex life. The meds killed my libido. Have to give myself an injection in my penis for an erection. It’s hell to get old with Epilepsy.