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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this! My seizures probably started when I was young, and then @ around 30 I had the first of several gran mal seizures. The reason I say "probably" is that I always thought everyone felt those weird, "deja vu", moments of blankness type feelings. I was put on Dilantin, which controlled everything. "Fast forward" to this past year (20+ years later) and my neurologist explained that being on Dilantin for so long is not healthy and could cause irreversible neurological and liver damage. So, he switched me to Tegretol (the switch was NOT fun - I felt SO awful - sluggish, depressed, anxious, etc - while having to titrate off Dilantin and onto the Tegretol!!!). I've now been Dilantin-free for about a year, and I'm doing fine. I feel different than when taking the Dilantin, but I'm seizure-free.
A bit over a year ago, my now 15 year old daughter was diagnosed with anxiety-induced Absence seizures. We're having SO many issues trying to find a medication that controls her seizures without causing her extreme depression. She's been on Zonegran, Zarontin, Keppra (which caused her so much depression she couldn't even get out of bed!) and is just now switching from Aptiom to Fycompa (again because of depression). We're not going to even try Lamictal because several family members have had allergic reactions (bad rash, etc). She's also just started on birth control because I've noticed her seizures are worse just before her period. My daughter is taking online school because the anxiety of going to classes (and the loudness/activity of a high school is SO overstimulating) triggers multiple seizures. She LOVES school, so this is hard for her. I'm just not sure what to do next for her...Praying that the Fycompa and birth control will help without the awful side effects. Doctor doesn't want to put her on Tegretol since she's not having gran mal seizures.
Replies to "Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this!..."
@isalenamom
I’m happy to hear your seizures are controlled. But sorry to hear of your daughters issues. I took Dilantin also for over 30 years. I have Neuropathy from my feet to just above my waist as a result. I’m curious about what side effects your daughter had on Zarontin and when did it start. Did she have depression on Zonegran, Zarontin and Keppra?
Does your daughter fear having another seizure? Does she accept the fact she has Epilepsy? I’ve had Epilepsy for over 50 years. Since I was 15. In the very beginning it was no big deal. As the seizures changed to Convulsive Status, they increased in intensity and frequency and I was put in medically induced comas for weeks to months on end. I couldn’t cope with it and I had had a nervous breakdown. Stress is a major seizure trigger so anything that can be done to reduce it should help. Do you know what is causing her anxiety? Just like in Epilepsy it’s important to recognize your triggers in anxiety as well. Perhaps if she saw a Psychologist to help her recognize her irrational thoughts and how to overcome them, just maybe her seizures would stop or at least ease up.
Considering her difficulties with medication you may want to try Pharmacogenomic testing. Below is a link to the Mayo Clinic which explains it better than I can.
I wish you both the very best of luck and hope you remain controlled and your daughter is controlled soon.
Blessings,
Jake
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Hi, @isalenamom - welcome to Mayo Clinic Connect. Thanks for sharing about your own journey with seizures and taking phenytoin (Dilantin) and then carbamazepine (Tegretol), and now doing fine. That must be hard to now see your daughter with anxiety-induced absence seizures and having so many issues finding a medication that controls the seizures without causing extreme depression for her, .
I'd like to introduce you to @jakedduck1 @dawn_giacabazi @aroman @mythreeguys @kelliann, who may have some input for you as you seek some answers for your daughter and what to do next for her.
How are things going with the perampanel (Fycompa) so far?