Living with epilepsy - Introduce yourself & meet others

Hello @jamessr and @lisad1010. It is great that the two of you have connected here for some online support and community with others who understand your epilepsy journey with your kids.

Since there was mention of an in-person meeting option for your kids to meet others and make friends, I wanted to provide links to two organizations that serve the Jacksonville, FL area so that you may consider what they have to offer for support/events. They are:

- Epilepsy Foundation of Florida: https://www.jacksonvillemiracleleague.org/epilepsyfoundation
- Epilepsy Alliance Florida: https://www.epilepsyalliancefl.com/support-groups/

Have your respective children initiated interest in meeting in person with others?

Hi @jamessr, good morning
No, I am not a patient of Mayo in Jacksonville. I have had appointments with an epileptologist at Mayo in the past, searching for an orientation and a second opinion, as I am in São Paulo, Brazil.
Santosha

Hi ALL - I had my first grand mal seizure (called that back then) in May 1972, out of the blue. A second one took place in June 1972. I have been on 600 mg. of Dilantin for 50 years since July 1972 and I believe back in the 70's, Dilantin was a common drug to help those with epilepsy. About six years ago, developed severe sensorimotor peripheral neuropathy. I've been scratching my head for a few years now because I see on some web sites, there could be a connection between Dilantin and peripheral neuropathy. In 1988, my GP said I could go off my Dilantin, so I did and 12 days later, another seizure. I will stay on this drug for life and put up with neuropathy....even if there is or isn't a connection. Anyone else on long term Dilantin and experiencing neuropathy? Ed

Hello,
I'm new to connect and glad to be here. I am wondering if anyone can tell me who the director is for the adult epilepsy unit at Mayo Rochester and how I might obtain the contact information. Also, interested in getting an appointment with an Epileptologist at Mayo Rochester. Thanks so much and look forward to hearing back from someone.

Hello I’ve had epilepsy for about ten years now.
I’m reducing one med keppra it’s horrible. I was a different person while on it. Depressed, and the list goes on. But has anyone experienced brain bursts while having epilepsy?
My neurologist said it was normal these don’t happen frequently but occasionally.
Thanks
Kelly

Hi @kel1
Can you give more details what you feel when you have experienced brain bursts?
I have heard that coming off medications has its challenges and needs to be done smoothly.
I have experienced it myself when coming off Vimpat and migrating to CBD. My doctor did this transition very smoothly, taking several months, so as to reduce the effects of this change of medication. I am happy I did it!!!
Santosha

Santhosha,

Is CBD all you are taking? Do you go to a doctor who monitors it?

My doctor suggested Vimpat but that can cause eye problems. I have macular degeneration and glaucoma. I am surprised at the little amount of time doctors spend on looking for suitable alternatives.

Hi @heal33
Pure CBD and a birth control pill so as to avoid my menses (they are a trigger to my seizures) is what I take in terms of medication to treat my epilepsy. I do also control my seizures through my diet, yoga practices and behavioral approach. All that is being monitored by my epileptologist. I am better off with this kind of treatment than with AEDs that I have tried for 2 years. But as I have already mentioned in some past posts, I am a very sensitive person to conventional medication since my early childhood, having to look for alternative treatments. Though I still have some partial seizures, I am back to life!!!
Santosha

Hi @santosha thank you for replying. The bursts don’t feel more like a pop, but like a firing and my neurologist before said that’s what it is an epileptic firing in my brain. She was always trying to diagnose me with something before I saw my doctor. Not sure if you’ve experienced a neurologist like that🙄
But I’m being careful I’ve been on this med for 9 years and going off of it over a nine or ten week course so very slowly and I have hardly any effects. I’m happy for you as well whats CBD?

CBD does not have THC found in marijuana which is good. I'm not 100% sure if I want to try CBC but after 40 years I'm thinking maybe there might be something but am also concerned as I don't know how much research they've done.
I tried the ketogenic diet but had to quit after a year as it gave me acid reflux. I'm thinking maybe I should try low carbohydrate instead. I'll have to look into the yoga (certain positions aren't good for glaucoma). I was wondering what you meant by a behavioral approach.
I'll have to try an epileptologist who could give me some guidance on trying CBD and make sure I'm getting some good quality gummies. I live where I might be able to find one.
Thank you.