New to epilepsy and need guidance and support

Posted by facenu @FaceNu, Mar 18, 2016

Hello!
I am a 38 year old woman, married, mom of two daughters (9,10 respectively). Have suffered with chronic daily migraine since 2002. Very recently diagnosed with Epilepsy. I don’t particularly like neurologist who I was assigned to — I’m on my 3rd medication (Lamictal?) and I have so many questions. (I’m looking for a new doctor!)

Right now I feel like I’m living in fear of my own brain. This last seizure came out of the blue, while I was getting my daughter ready for dance class. Since that day (Jan 25, 2016) I have had 2 abnormal EEGs.

I feel like I need some — guidance, advice support. Would love to hear others experiences – especially from those who have been diagnosed with epilepsy in adulthood.

Thank you!

What amazing news @beccahp. How did the brother/dentist visit go?

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One of the items often not noted relative to migraines and seizures is the action of a prescribed medication vs ones individual system as they age and their system slows down in its operation per “its not what it used to be.” The other important thing is medications. “I was on Dilantin and Phenolbarbital for 63 years, before they pulled the Dilantin, due to a study that idicated that Dilantin Eats the Calcium of the Bones.” I lost all of my teeth due to the Dilantin years ago; also some medications can interact with other body organs in their ability to perform their task.

Kay

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I am the mom of a 25 year old with Epilepsy. He was diagnosed a few years ago. He is still in the denial stage about his disorder. He has medication but is still having seizures? He has been injured so many times and lost so many jobs. Are there foods or other medications he should be avoiding? Is there anything that can help his anger over not being able to control this? I want to help.

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Welcome to Connect @scoobylisa. I moved your message to this existing discussion, which coincidentally had the same title as you created. I moved your message so you could more easily connect with others talking about epilepsy. Please read through the entire thread to meet members like @FaceNu @19aleckelly @debburrington @kevinkelley and @dawn_giacabazi who live with epilepsy and see what resources they’ve been shared. I think you’ll also enjoy connecting with @beccahp @sall who are living with and caring for someone who has epilepsy. Read what beccahp writes about her son.

Lisa, you ask great questions about foods and medications to avoid, as well as helping your 25 year old get past his anger at losing control. I look forward to what the community will share with you.

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Thank you for your reply but I’m not sure this is the right group? Yes, he has epilepsy. But no signs or sequences of migraines? As a matter of fact, it has yet to be determined what is the cause of his epilepsy. In the last 2 years he has been to so many doctors. He has had so many medicines. But nothing seems to identify or control the seizures. I think maybe it must be the other things he’s doing while trying to regulate the epilepsy? That is why I was concerned about food or activities affecting his health as well?

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@scoobylisa

Thank you for your reply but I’m not sure this is the right group? Yes, he has epilepsy. But no signs or sequences of migraines? As a matter of fact, it has yet to be determined what is the cause of his epilepsy. In the last 2 years he has been to so many doctors. He has had so many medicines. But nothing seems to identify or control the seizures. I think maybe it must be the other things he’s doing while trying to regulate the epilepsy? That is why I was concerned about food or activities affecting his health as well?

Jump to this post

@beccahp @dawn_giacabazi Have you got any thoughts for Lisa? Such a long journey to unearth the cause of epilepsy.

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Thanks @colleenyoung. Hi Lisa!!
I to have lived with epilepsy for over 25 years. I went many many years without control. The best help I received was from Mayo Clinic epilepsy department.
http://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-treatment/treatment/txc-20117241
I was admitted to the Hosp and they carefully studied my response to discontinuing all my medications until we figured out my triggers and types of seizures I was having. I was the started on Trileptal and been seizure free 8 years until recently. But the new ones are unrelated issues.

I strongly suggest an evaluation by the Mayo Clinic Epilepsy Dept.

Prayers for answers
Dawn

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