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!

@colleenyoung

Hi @irvkay312 @FaceNu @19aleckelly @beccahp @debburrington
Just checking in. How are you doing? @FaceNu how did you appointment go this week with your neurologist?

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It went fine and my new medicine Keppra was increased to 2000 mg. a day
over a period of four weeks, in an effort to wean me off of the Primidone
entirely in time.

Fatigue still a problem. I believe from experience and events that “when I
broke my hip in two places, I was downhill already enery wise. With the
standard protocol in Rehab to get you up soon–their physical aoccupational
therapies used up my calories and proteins before they could be renewed.”

Consequently, I feel I’m facing Muscle Wasting now, due to third stage
chronic kidney disease and the Islet Cell Cancer that mestasized to the
liver and was uptaken by the spleen, GI and GU tracts.

Neurological control remains stable fortunately.

Kay

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Hi facenu. Sorry to hear about your problem as it was noted in your request for guidance. I can tell you that over 77 years of epilepsy, all stages and migraines a number of things that enabled me to become seizure free for over 3+ years and migraine free over 4+ years now. First, have a reliable neurologist or epileptologist attain a baseline EEG and possible MRI as well as CBC. That will give the doctor something to work from in treating your condition. Second, I have read in recent months a correlation between epilepsy and migraine headaches. Third, take your medicines prescribed within a 15 minute window of their prescribed time. Fourth and important–remove all activities and events that can incite or trigger a seizure or headache, like depression, noise, anxiety, responsibility, concentration, lights, etc. Then take one item at a time to renew it–if you can do it fine; if it upsets you discard it and move onto something else. I quit many activities and things during my 3+ years of seizure feeness, because it lessened the pressure on the brain. Good Luck.
Kay

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@colleenyoung

Hi @irvkay312 @FaceNu @19aleckelly @beccahp @debburrington
Just checking in. How are you doing? @FaceNu how did you appointment go this week with your neurologist?

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Hi Ms Colleen! Zach is having ups (YEAH!) and a few downs in the past few weeks. The new doctor has him on a new medicine. Getting that regulated is a challenge! He HAS been able to get out of the house some in the past few weeks!!
Everybody at church has been just REALLY encouraging and HAPPY to see Zach out and about! All those prayers are
helping!!!
On Wednesday, Zach is going to visit his brother for a few days. Joel is a dentist and is going to do a bunch of work on Z’s teeth. All the medicines are having a horrible effect on Zach’s teeth! We hope Z is able to handle the noises and the smells AND the unfamiliar bedroom! We hope the visit goes well!
Thank you for checking back on us! I hope you have a great week!
Becca 🙂

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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?

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@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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@beccahp

Hi Ms Colleen! Zach is having ups (YEAH!) and a few downs in the past few weeks. The new doctor has him on a new medicine. Getting that regulated is a challenge! He HAS been able to get out of the house some in the past few weeks!!
Everybody at church has been just REALLY encouraging and HAPPY to see Zach out and about! All those prayers are
helping!!!
On Wednesday, Zach is going to visit his brother for a few days. Joel is a dentist and is going to do a bunch of work on Z’s teeth. All the medicines are having a horrible effect on Zach’s teeth! We hope Z is able to handle the noises and the smells AND the unfamiliar bedroom! We hope the visit goes well!
Thank you for checking back on us! I hope you have a great week!
Becca 🙂

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How are you doing these days? Are Zach's meds working well for him? I hope you can update with a post.

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Hi! Zach, my husband, Barry, and I got Covid in January and suffered through 5 weeks of awfulness…but we Survived, when lots of our neighbors did not. 🙁 Zach still suffers with some bone pain in his shoulders and hips AND stomach issues. Barry still has no sense of smell or taste and has stomach issues. I'm mostly just tired and have some foggy-brain issues sometimes from Covid. We Did Survive although we kept a Close eye on each other and our O2 situation!! My sweet sis-in-law sent us an oxometer (?) which REALLY helped!! We were able to tell the doctor over the phone what our O2 level was and Know if we needed to go to the ER. We did not. 🙂
Zach's neurologist sent him to a Pain Specialist last week and he was Very Reluctant… thinking she would just tell him to do 'some BIOfeedback or something! 🙁 ' were his words, but she Actually had looked over his charts AND had some new ideas!! Zach, Dad and I were SOO Happy!! He is trying a 7-day patch (I can't remember the name but IF it helps, I Will let y'all know!) and using Tizanadine (sp?), a muscle relaxer for the pain. The 'Tiz' Really helps him to relax and usually sleep, which is the ONLY time he gets Any relief from the constant pain. This doctor gave him 3 Tiz a day, instead of just 1, so he is feeling a little better. I am Happier because I Actually HAVE Something to give him that will help! There's nothing more frustrating than Not being able to help your child have some pain relief!!
Thanks for checking in with us! That means a Lot!! 🙂

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