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.

@dawn_giacabazi

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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Thanks Dawn, I am and have a Dr.’s appointment around the end of this month. Have a blessed day.

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Hello there! Im 28 and been 5 years seizure free, taking Keppra, Lamictal, Zonisamide all twice daily.I had recently got married and hoping later in the year to start a family. I am curious if anyone were on the same medications and if they have any problems? Also I’am interested in where i could find info about epilepsy or helpful videos for my husband, if i do end up having a seizure at anytime I don’t want him to be scared

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@thoferer81017

Hello there! Im 28 and been 5 years seizure free, taking Keppra, Lamictal, Zonisamide all twice daily.I had recently got married and hoping later in the year to start a family. I am curious if anyone were on the same medications and if they have any problems? Also I’am interested in where i could find info about epilepsy or helpful videos for my husband, if i do end up having a seizure at anytime I don’t want him to be scared

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Hello @thoferer81017, welcome to Connect. It is awesome to hear that you have been seizure free for 5 years and the medications have been working.

I would like to introduce @dawn_giacabazi this conversation to give her thoughts on her experience with Keppra. I would also like to invite @stayfree back to Connect to give their thoughts on Lamictal.

You may want to check out the Mayo Clinic site and its tips on self-management for epilepsy. You will find a bulleted list on the bottom of this page, http://mayocl.in/1RfT2yn.

If you would like to share a few videos with your husband, here is a link to the Epilepsy Foundation that include a few videos with a background on seizures and a video about techniques for responding to a seizure, http://bit.ly/1gs3vcS Since this is not Mayo Clinic content, I can’t speak to it’s full credibility, and I would reccomend comparing the points from the videos to the checklist on Mayo Clinic’s website.

@thoferer81017, what concerns do you and your husband currently have?

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Hello @thoferer81017!!! Welcome to the group!! I have 3 gorgeous healthy children & I was on Keppra & dilantin with my first. My first 2 children were very planned. My doctors had me start on folic acid and prenatal vitamins 3 months before starting our family. They also switched me off dilantin and Keppra to help prevent birth defects and put me on phenobarbital. They highly suggest breastfeeding for weening purpose off the medications. Here is a great link for seizure medications and pregnancy. http://www.mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/in-depth/pregnancy/art-20048417?pg=2

Prayers
Dawn

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Thank you so much for the reply! Im glad I had found a group I could talk to that is also going thru the same thing:) So glad everything is under control now! Thanks for the link! My husband and I would like to start a family sometime at the end of the year or next year we are just concerned about the medications. My husband is very loving and supportive i would hate to have him see me go thru and episode as he never done before, i just worry about others seeing that i dont want it to be tramatic for him too. That is great Dawn!!! im so happy to hear that and your story:) Iam taking some multivitamns now i heard keppra is safe! Thank you soo much!!

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Has anyone ever gotten a Lamictal Rash?

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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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Has anyone been diagnosed with stiff person with any blood test other than gad65?

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Hello my name is Niki! I am 64 years old and since November 2015 Ive have several seizures. I am looking for control and answers for these seizures. Thank you!

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@thoferer81017

Has anyone ever gotten a Lamictal Rash?

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Hi @thoferer81017
Rash and other skin irritations are known side effects of lamotrigine (LaMICtal) http://mayocl.in/2lE1Cjo Did you get a rash from this medication?

I’m tagging @lucky12 @debburrington @sharin on this discussion as they have experience with lamotrigine.

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@nmmartin20

Hello my name is Niki! I am 64 years old and since November 2015 Ive have several seizures. I am looking for control and answers for these seizures. Thank you!

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Welcome @nmmartin20,
What type of seizures do you have?

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Is there a group for stiff person syndrome ?

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Hello! My name isPatricia and I live in Brazil with my loved family. We were at Mayo Clinic in January to have some tests in my younger son , 6 years old that had terrible seizures . In February 6 th he had hemispherectomy surgery and he is doing great! I would like to share our history and help who are in the same situation.
Thanks
Sincerely
Patrícia

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