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?

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.

Liked by Leonard

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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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@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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