My child, now 19, has about 5-15 seizures an hour. We tried all the medications prescribed when she was young, but ALL the negative side effects were too much, and she still had seizures. So we stopped all medications (that was hell btw) and she finally started to do better at school. The meds gave her crazy anxiety, voices in her head ( not nice voices either) stomach issues, depression, suicidal (yes, at age 8!so I pulled the drugs and said no more!)
She is now a college student but the… read more
Answer Summary
Members rallied around a parent seeking advice for her 19-year-old daughter living with drug-resistant absence seizures, offering both... Read more
Everyone is different , taking seizure meds for your type of Epilepsy. The Dr. should know what types and brands best fits your kind of seizures.
What medication works for one person, may not work for you. It’s usually a guessing game ( in my opinion ) for the Dr. to find the right medication that works for you.
Then there are people like myself who have Refractory Epilepsy ( resistant to any seizure med )
I’ve had drug resistant epilepsy for 50 years. I finally found an epileptologist who knows what’s going on in the world! He gave me a medicine I’ve never heard of….Aptiom. It’s got very little to no side effect. And it made incredible differences in my seizures within a few weeks! I also have a VNS that he knows much more about than my other drs. And has it adjusted to a perfect setting for me. Please don’t give up. There’s so many options for your daughter. I’ve had epilepsy since age three. And I’ve had to learn to accept it as part of me (that didn’t happen until my 30’s. ) From then on, I noticed that I stopped fighting myself and accepted that I am who I am because epilepsy is part of me. It’s not a pretty part, but it’s there. I’ve been married twice, second time is still going , we just celebrated 20 years last June….he accepted me and my seizures (which he had to learn about after meeting me) and he also accepted my 3kids. No problem. I’m telling you this because your daughter needs to know that a “normal “ life is possible even with epilepsy. And yes, I still have seizures. I’m down to 6-8 a year not counting the nighttime ones. It took this dr that I found two years ago for this to happen. Otherwise I’d still be having 3-4 a month.
@A MyEpilepsyTeam Member Ty. Your input is appreciated. I know what a struggle it is as the parent. Getting more insight from those who actually live with it means so much to me.
I’ve had a hidden disability most of my life, so that part I’ve always understood, but that’s it. My dyslexia isn’t quite the same, but it has been a struggle to deal with for me. I’ve always felt that if we are open and matter of fact about her seizures, then we control the narrative. Which has worked, until now… two job interviews/ two open discussions about her seizures/ two jobs not offered to her. Ugh. Now she doesn’t want to tell anyone about it, but if they spend any time with her, they’ll experience her having one. Ugh.
Some days I get so mad at God, then other days i thank him profusely.
Stay strong Sean, your voice/ presence makes a difference ✌️💜k
There are many of us on this site who are experiencing Refractory Epilepsy
( resistant to medication ) .
I was told about my Refractory Epilepsy by my Epileptologist .
@A MyEpilepsyTeam Member
You can also learn a lot of information on here. Say if your daughter was going to have surgery and get the Neurostimulator (RNS) I could tell her everything about it because I have one
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