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Living with epilepsy - Introduce yourself & meet others

Posted by @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?

REPLY

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.

http://www.epilepsy.com/get-help/seizure-first-aid/seizure-response-plans/developing-my-seizure-plan-101

Staying safe

http://www.epilepsy.com/get-help/staying-safe

Symptoms/causes

http://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/dxc-20117207

Be prepared
Dawn

@donnak69

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.

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@donnak69 Welcome to Connect!!

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

http://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/dxc-20249662

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

http://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-treatment/treatment/txc-20117241

Thanks
Dawn

@colleenyoung

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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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.

@colleenyoung

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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@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

@colleenyoung

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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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.

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

@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.

@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.

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 .

@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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