Living with epilepsy - Introduce yourself & meet others

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 group.

@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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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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@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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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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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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@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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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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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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@kanaazpereira

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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Well I will be 53 in March and moved back to TN with my mom and it has been great. I think I have more of an anxiety/stress seizure. I have experienced some memory loss with the seizures. I don’t remember being married and living with my 1st husband, my children’s father, I do remember he was my high school sweetheart. I’ve learned to start notating what happened the day before my seizures to compare what goes on. The last seizure I had was on Jan. 14 (day after I was telling everyone to have a blessed Friday 13th), got up that Sat., had a cup of coffee and sitting talking with my mom about going to the mall that day. When I woke up later she was asking me how I was feeling. I just said, I’m fine, them she told me I had a seizure, she called 911 and they came out and told her I was having a seizure and there was nothing they could do, just to keep a cold towel on my head. Well I was excited about that but the night before is when I told her I decided to say and I was going to join her church because they had a lot of volunteer/activity stuff going on. I was some what depressed about that because I didn’t want to tell my daughter the next day I decided to stay. Coping is great, she is my mom, I do make a little income babysitting and she gives me $20 here and there for keeping kitchen clean she saying and being her personal secretary. Then taking me shopping and finding the best deals.

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@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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Hello @stayfree
I have also been on gone down the rough and bumpy road of finding the right medication and the right dose and the right time of the day. Many seizures, ER visits, waisted medications that I can never take again and a lot of waisted money!!!

Now those days are over!!! Now we have the capabilities to prescribe the right medications, right dose, right time of day. Eliminating the adverse reactions, waisted time and money. Here is a link explaining a simple test you only need to do once in your life. Pharmacogenetics testing or also know as PgX.
http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp
When my Mayo docs weaned me the started me on trileptal before weaning me off the other medicine. We weaned 1 dose at a time on 1 medication at a time changing 1week at a time until I was able to finally be on just the trileptal. I had an occasional aura but no seizures. Now seizure free for almost 10 years with a break through a month ago but back on track again.
Remember: weight changes everything. So if you are have weight changes tell your doctor immediately.

Prayers for seizure free days
Dawn

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Hi @vanessapaugust.
Curious what medication you are taking for seizure control and have you had your levels check? Your doctor may need to make an adjustment since you have had a seizure recently.

Dawn

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@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, I will look right into that. Have a blessed day.

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