Living with epilepsy - Introduce yourself & meet others

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.

I have been trying to figure out why and what to do to figure out if my Epilepsy is caused by Chiari Malformation and if they are related and what options I may have to figure it out. Every Dr. I have been to has been absolutely no help.

This topic is dear to my heart.

I was diagnosed with multiple different seizure disorders. I have partial complex (temporal lobe) seizures and grand mal seizures and pedimal seizures. I was diagnosed in 2000 shortly after a car accident resulting in post concussion syndrome.

One of the best thing you can do is educate yourself, family and friends. Be prepared. You will soon learn your patters and warning signs. They are certainly different for everyone. Here are some amazing tools that still help me today. My family practices the plan every other month. Since my recent seizure followed none of my pathologies we had to tweak our plan alittle. But I pray you and your physicians can figure out a great plan to prepare for and prevent any future injuries.

Staying safe

Symptoms/causes

Be prepared
Dawn

@donnak69 Welcome to Connect!!

I would like to share a link with you. This has some great information related to Chiari-malformation.

Curious if you have been seen in the Mayo Clinic Epilepsy Clinic? If not I highly suggest Dr. Britton is absolutely brilliant.

Thanks
Dawn

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.

@ketomom
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!!
Dawn

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.

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

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?

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.