1. < Epilepsy & Seizures
Moderator

Living with epilepsy - Introduce yourself & meet others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 7, 2016

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 Support Group.

clairesmom | @clairesmom | Dec 10, 2016

Hi. My daughter is 7 and has intractable epilepsy and possible Glut 1 DS. She has been on the ketogenic diet for 7 months.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 11, 2016
In reply to @cephas "I have a great friend who has seizures and his doctor has pretty much said there..." + (show)
@cephas

I have a great friend who has seizures and his doctor has pretty much said there is nothing else that can be done for him. He had surgery I believe in 2004 at your clinic and Dr Ben Carson was on the surgical team. He didn't have a seizure for about a year and then they returned. Colin is his name and he is a remarkable man he doesn't let the seizures keep him from doing what he likes to and he does wonderful work with handicapped people by previding a bowling league for them and countless other things. As i said earlier his doctor has pretty much told him they can't help with all the improving technology I was hoping maybe there is something that could be done for him. He is so important to a lot of people and I think he deserves anything that could be done to help him because I believe there are miracles can can be accomplished.

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Hi @cephas,

Welcome to Connect. I'm so sorry for Colin, but he is very fortunate to have you by his side, and we are so glad to have you on Connect.

You will see that I have moved your discussion to this page, so that the wonderful members here can start giving you and Colin much-needed support and information.

@dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley, could you please provide some insight for Colin and @cephas?

@cephas, would you be able to give us a little more information about Colin's seizures? Details such as what kind of seizures, how long has he had them, how long do they last, would be very helpful. You have come to the right place.

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stayfree | @stayfree | Dec 13, 2016
In reply to @kanaazpereira "Hello @stayfree, Welcome to Connect. From what I've researched, a high level of GAD65 autoantibodies associated..." + (show)
@kanaazpereira

Hello @stayfree,
Welcome to Connect. From what I've researched, a high level of GAD65 autoantibodies associated with autoimmune diseases including Stiff Person Syndrome (SPS) and Type 1 diabetes (T1D). Here is some clinical information from Mayo Clinic: http://mayocl.in/2hfBvfY

@sall, @XhaustedBsue, since you have experience with Vimpat, could you provide some more insight for @stayfree?

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Thank you. Any information about weaning off Vimpat would be helpful. Vimpatc has been a nightmare for me. As i said, everytime the MDs have attempted to wean me, I have auras leading to seizures. I have been introduced to Lyrica, neurontin, lamictal. Name it. They have tried it. I end up with unsteady gait, blurred vision, dizziness. Without medicine i have absent seizures. Although i have a abnormal mri, my neurologist think the GAD65 has something to do with my symptoms. I don't know at this point.

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cephas | @cephas | Dec 15, 2016

Sorry it's taken me a while to get back but I have been working and getting home late. I am not sure what type of seizures Colin is diagnosed with but his seizures last any where from five minutes to forty five minutes. My understanding is that he has scar tissue from the surgery he had and it is growing causing a lot of his seizures .

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 16, 2016
In reply to @clairesmom "Hi. My daughter is 7 and has intractable epilepsy and possible Glut 1 DS. She has..." + (show)
@clairesmom

Hi. My daughter is 7 and has intractable epilepsy and possible Glut 1 DS. She has been on the ketogenic diet for 7 months.

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Welcome @clairesmom.
@ketomom also talks about the ketogenic diet for managing epilepsy. I recommend starting a new discussion thread on that topic. I'm sure others would be interested in hearing about your experience with diet, and I don't want the conversation to get buried in this introductions discussion.
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.
4. Click CREATE DISCUSSION.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 12, 2017

Hi all,
Please welcome @mmas to our group. You can read about mmas and her daughter in the discussion thread she started here:
- Ketogenic diet for children http://mayocl.in/2j4h7zQ

@mmas, please meet @cephas @clairesmom @stayfree @dawn_giacabazi @ketomom and others. We look forward to getting know more about you.

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doughboy47 | @doughboy47 | Feb 10, 2017

Hi everyone. My name is Paul. I had simple partials and gran mal seizures from age 9 until 25. In 2000 i was referred to the mayo clinic. There my life changed for ever. I met Dr. Greg cascino an epitologist. After a year of try meds i became a canidate for surgery. In october of 2001 i had a right temporal lobectomy and hippocampus removed. I've been seizure free since, and med free since 2004. Now that I've been given a second chance at a normal life, i try and help other's with any questions about the choice of having surgery and how it effects your life after. Feel free to reach out to me with any questions you might have.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11, 2017
In reply to @doughboy47 "Hi everyone. My name is Paul. I had simple partials and gran mal seizures from age..." + (show)
@doughboy47

Hi everyone. My name is Paul. I had simple partials and gran mal seizures from age 9 until 25. In 2000 i was referred to the mayo clinic. There my life changed for ever. I met Dr. Greg cascino an epitologist. After a year of try meds i became a canidate for surgery. In october of 2001 i had a right temporal lobectomy and hippocampus removed. I've been seizure free since, and med free since 2004. Now that I've been given a second chance at a normal life, i try and help other's with any questions about the choice of having surgery and how it effects your life after. Feel free to reach out to me with any questions you might have.

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Welcome to Connect, @doughboy47. It's great to have your experience to add to our group.
@clawrence has also shared her success story with surgical treatment for epilepsy. I believe @stayfree may be considering surgery.

@doughboy47 do you have experience with weaning of meds before the surgery? @stayfree is dealing with this right now and may have some questions to ask.

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vanessapaugust | @vanessapaugust | Feb 11, 2017

Hello, my name is Vanessa and I've been dealing with seizures since 2012. Of course I have been going back and forth with trying to get disability or some sort of income. I am planning on moving with my mom now in Chattanooga, TN and would like to chat and meet people in this area.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 12, 2017

Hello @vanessapaugust,

We're so glad you've joined us here on Connect. @cgrammie2 @randallfrommemphis @jodyalbright @ditim have mentioned living in Tennessee, and I hope they will have some information for you.
Could you tell us a bit more about yourself, @vanessapaugust ? What kind of seizures do you have? How are you coping with this and the move?

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