← Return to Living with epilepsy - Introduce yourself & meet others

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Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I'd like to invite you to the new group dedicated to discussions about epilepsy and seizures. It's a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

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Replies to "Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto..."

Hello! I am the mom of a beautiful 19 year old who has epilepsy. Christina's first seizure when she was just seven months old. We quickly learned medical care for seizures is not the same and traveled to Mayo. She has been a patient at Mayo ever since. In fact, we just got back home after being in Rochester. Christina has been through a lot since the first seizure including brain surgeries. We have found that advocacy and hope can change things for the better. Our favorite treatment (if there is one) for seizures is dietary intervention. Christina has been on the original keto diet as well as another form called the low glycemic index diet treatment. She is also on a low dose of an anti seizure med.

Christina will be attending college soon and inspires us everyday.

What a wonderful inspiration and a blessing. Living with seizures is difficult but certainly much easier when we can find the triggers and avoid them when possible & the right treatment combinations. Sounds like she also has a pretty great advocate.

Great job Mom!!

Hi @ketomom! I'm so glad you joined us in the new group. I remember you from your participation in our webinar/video Q&A sessions with Mayo experts. Did you see that we have another #AsktheMayoMom session coming up on Dec 15 at 10am CT? This time it is about Pediatric Epilepsy Surgery. See info here: http://mayocl.in/2hd4uEg

Would you mind starting a new discussion in the group specific to dietary intervention? It would be great to learn from your and Christina's experience with diet and epilepsy management, as well as to hear what other members have tried - what has worked and what hasn't.

I suggest starting a new discussion so that the diet conversation doesn't get lost in the introductions thread. Here's how to start a new discussion:
1. Go to the Epilepsy group homepage http://mayocl.in/2gJltuq
2. Click the gray button that says START A DISCUSSION.
3. Write a title and message with your question.

Thanks in advance.

Hi I am one caring for my brother who is having epilepsy since his childhood. Now he is 35 years old, and we can't find any cure for his disease. We recently have EEG and MRI reports but Dr also advise us to take further tests for investigation of tumor related case. Please help us to find right cure for this disease. I will be sharing these tests with you if you would ask.

Welcome, @sarfraz. Has your brother's epilepsy worsened? Is that why the doctors are suggesting further testing at this time to investigate a possible tumor being the cause?

These are the reports of previous tests including Dr,s surgical advice after viewing MRI and EEG reports. His right eye is not normal but there is no eyesight and blurring problem but popped up forward little bit as compare to his left eye and when there are period of seizures are going to happen his right eye also increase in size little bit. Please suggest what we can do now.

Hi @sarfraz, I deleted the images of the reports that you uploaded with your message because they contained a lot of personal health and identifying information about your brother. Please keep in mind that Connect is a public forum and we advise against post personal identifying information and contact details.

Should you wish to seek medical advice in a safe and secure manner, please contact Mayo Clinic appointments office mayocl.in/1mtmR63

My granddaughter has been in a medically-induced coma for the past 33 days. The doctor said she was having a seizure every hour or so that lasted for a minute or two. They put her in a medically induced coma to try and stop the seizures and in the past 33 days they have tried quite a few different medications. Nothing has worked. They said there are two more medications they can try and if those don't work they will try electroshock therapy if that doesn't stop the seizures they said there is nothing more they can do. They can't allow her to wake up because they say if she has a seizure it could damage her brain. There's nothing left to try. Please if someone has a suggestion for my son to help his little girl please please let me know. Thank you

Hello and boy do I need advice I have phenobarbital controlled epilepsy for 30 years I am 55 and this past year have been having a ridiculous amount of memory, cognitive and balance issues. Dr says it's the meds and I need to consider switching two years ago a different neoro told me not to try to switch as my seizures were Grand mal,last one so many years ago they say was 5 minutes I dunno , she said just switching could kill me. My dilemma! I know epilepsy is danger no matter what but I've done so good to have my brain function back would be amazing honestly I can't remember a thing anymore,,,thoughts?

Hi, I was diagnosed with epilepsy at age 7 and am retired now. I have complex partial and tonic clonic. The tonic clonic are well controlled and the same with complex partial if all of my triggers (sugar and sleep) are under control. I have had a number of medicines over the years ranging from phenobarbital to Vimpat. I spent most of my years on valproic acid. My complex partial, until the last few years, show as "twitches" around the mouth. Now I am getting hand "twitches" which is a side effect of the Vimpat. I may be returning to Keppra in the near future. Thanks for creating this chat area.