Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

Hi fellow members, I'm writing to to find out if there is any interest for a social event perhaps at a Jax park where young epilepsy adults and their families 21-35 could socialize over a grill filled with burgers and dogs and perhaps play volleyball. The purpose would be to have a day free from the stigma of seizures and just have fun and make new friends. Trading medical stores and experiences is important but making new friends and having fun is critical for a healthy mind and body.
James the Dad

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Are there any epilepsy support groups in Phoenix that meet in person?

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@jamessr

Hi fellow members, I'm writing to to find out if there is any interest for a social event perhaps at a Jax park where young epilepsy adults and their families 21-35 could socialize over a grill filled with burgers and dogs and perhaps play volleyball. The purpose would be to have a day free from the stigma of seizures and just have fun and make new friends. Trading medical stores and experiences is important but making new friends and having fun is critical for a healthy mind and body.
James the Dad

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Hi James the Dad,
I'm Lisa the Mom! My son is in Scottsdale attempting to live by himself (all family is in Indiana) He has been there a little over a month and hasn't met anyone! Since his seizures are uncontrolled by medication he isn't able to work. He would love to be able to make new friends and actually have some fun!
So don't give up on this great idea!

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@lisad1010

Are there any epilepsy support groups in Phoenix that meet in person?

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You can check further with Epilepsy Foundation of Az.
https://www.google.com/search?q=epilepsy+support+group+in+Phoenix&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari#trex=m_t:lcl_akp,rc_f:nav,rc_ludocids:1658332575372961225,rc_q:Epilepsy%2520Foundation%2520of%2520Arizona,ru_q:Epilepsy%2520Foundation%2520of%2520Arizona,trex_id:mDkb0e&lpg=cid:CgIgAQ%3D%3D
1 NE Valley Epilepsy Empowerment Group
7pm (AZ time) on Bi-monthly
To join e-mail lch03@aol.com.
if zoom or in person
———————
2 Tucson Support Group
third Sunday4:30pm email; Arizona@EFA.org for upcoming meetings.

Take care,
Jake

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My name is James and my son which is 34 has been suffering from seizures for over 25 years. We've gone through the laser ablation surgery and then a VNS implant without much success. We had the implant back in January of this year and still hoping that we'll see some therapeutic benefit as time goes by. We've been a patient at Mayo of Jacksonville going on five years and they are by far top gun in the Epilepsy world. And they too seem frustrated in our limited success.
Seems like everyone involved in the pursuit for a seizure free cure, are focused on a long term medical treatment plan. But we as caregivers and our family members who are patients live with the daily grind of medication, frustration, depression, anxiety and the expanding isolation of the patient and his/her peers.
They live a life with restrictions on transportation and lifestyles that make them inferior. Somehow this gap need to be filled with social support. We (the patient) need a social network to insure that when the medical breakthrough day comes our children will have a strong spirit, in addition to a healthy body.
A caring Dad

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Hi @jamessr
I can fully understand your frustration as this has happened somehow to me and my husband as well.
Have you already tried integrative medicine treatment? It has helped me to bring some quality back to my life.
There is a book that has inspired me a lot and that I recommend called Brave New Medicine: A Doctor’s Unconventional Path to Healing Her Autoimmune Illness by Dr. Cynthia Li.
"Our worst experiences can be the best teachers, as they catalyze unexpected discoveries and open us to new possibilities and perspectives." – The Choice – Dr. Edith Eger
Stay strong!!!
Santosha

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Thanks for your reply and recommendations for the book. I'll look for a copy.
Are you a patient of Mayo in Jacksonville?

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Are there any North Florida Epilepsy support groups that meet in person?
James

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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?

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@jamessr

Thanks for your reply and recommendations for the book. I'll look for a copy.
Are you a patient of Mayo in Jacksonville?

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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

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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

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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.

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