Questions & Answers

My son is in 1st grade and is getting very good at reading. I’ve seen children book about epilepsy and how they teach kids about it. He knows I have epilepsy. He knows to call/get help, but now that he is getting older I believe this is a good way to learn more about what’s going on. He has never had to experience one of my episodes by himself and I hope he never does but if he ever does maybe knowing more can help not only me but help him not be so scared if something happens.

Would anyone get a New Neurologist before getting a visual EEG done? Or would you get the EEG done first then switch?
I’m scheduled for Oct. 17.

A lot of people I know say that but I feel normal even though there's no such thing.

Some people think they get stared at as walking? Others my face isn't normal. People will discriminate me if I have one. I can never make a friend. Low esteem

How do you feel?

Am I odd not feeling like above? I misworded the question first.

Apparently I've read through medical online case studies that covid 19 can cause Ataxia, movement disorders, and Epilepsy after infection .I wanted to add links here but it wouldn't work I find this an interesting thing to know about as I'm wondering could covid 19 infection be the reason for my symptoms the variables in diagnosis are a lot but still it's a possibility.

Cold medications that DON'T lower seizure threshold?

How helpful has had LNS, VNS, and/or Deep Brain Stimulation been for you ? How successful was any that you have had for you? Score 1 = being great (long-term seizure free state) and 10 being a failure and more trouble than what it was worth
How many time per year are you having some battery replacement or other maintenance for LNS or VNS?

NOTE: Here is some details about each from the Epilepsy Foundation: https://www.epilepsy.com/treatment/devices

As much details of your own experience… read more

I've been into natural/Eastern/herbal treatments for almost 33 years. After being drugged up for 41 of 50 years with little results and more problems from them, I decided to start looking into this so-called "snake oil".....WHICH I HAVE FOUND IS ANYTHING BUT -DESPITE WHAT THE DRUG COMPANIES HAVE WANTED US TO BELIEVE FOR 100+ YEARS! (There are a few things that have drastically improved my seizures, as well as other issues [like my eyesight] I have been dealing with for decades!)
After digging… read more

Does anyone who have temporal lobe epilepsy find that it changed their sense of smell and taste
For as long as i can remember my whole life i had no sense of smell, and a really distorted sense of taste. My first noticed episode that was diagnosed later as a seizure was when i was 16. With fronto-temporal lobe epilepsy. Since being diagnosed with epilepsy i had wondered if the two issues were connected at all. A couple years ago i started having episodes where i developed a sense of smell, and… read more

How has everyone gotten Thier family to understand what we are going through. How scary it is. How we don't have the same abilities. I have times I can't concentrate like I use to. I get frustrated when I don't remember our things don't like they use to. I was able to go do much, but now it's gone. My wife and son just don't get it. They get upset thinking I'm lazy and things like that. I am pretty sure this is there denial and coping. I know there's more to say but let's start here. Thank you… read more