Living with epilepsy - Introduce yourself & meet others

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.

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.

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 .

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.

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.

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

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.

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?

Hello everyone. Recently the physicians at the Mayo Clinic is thinking my epilepsy along with the difficulty weaning off medication while starting another med without causing auras and seizures may be related to an autoimmune disease called GAD65. The neurologist at the Mayo Clinic did some blood test and found that my level is high.

They are trying to get me off my current meds (Vimpat and topiramate) because after syarting the Vimpat i started having dizziness,blurred vision and an unsteady gait. I have fallen a few times. Unfortunately, i have seizures with weaning. It does not matter how slowly they try to wean.

Please let me know if anyone know about GAD 65

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.
4. Click CREATE DISCUSSION.

Thanks in advance.