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Daughter recently Diagnosed - Could she outgrow it?
Epilepsy & Seizures | Last Active: Aug 31, 2025 | Replies (21)Comment receiving replies
Hi Chris, the EEG is as done 1.5 months following the first seizure so I think that works for valid testing. They did do the standard. Sleep deprivation, hyperventilation, and lights. She didn’t test positive for the lights. We were in the hospital for her skin graft surgery and she had another seizure. Tonic clonic. It was the next day following the start of her period. The hormones weigh on me and I need to start looking at that. She started her period at 14 without issue. Her cycles are a little off but not that drastic. In hospital she was under a lot of pain drugs and it was a high stress PTSD environment with little sleep and a ton of pain. This time I got a Deja vu but it happened a full day before her seizure which again happened in the morning. The neurologist there put her on vimpat. I am concerned it is the right drug for her. And wanted to try Lamotrigine again but we needed something to kick in quickly. Now that we are home she gets highly emotional with anxiety and panic attacks about 30 -50 mins after waking up. The time she typically has a seizure (now two). I can’t tell if this is her brain being lit up or her because she has been through so much. She had another EEG in the hospital. It only showed generalized charges again no focals. Also do you mind me asking what you use to control your hormone epilepsy now?
Replies to "Hi Chris, the EEG is as done 1.5 months following the first seizure so I think..."
@melissa1234
Hi Melissa!
I'm very sorry to hear about what you and your daughter are going through.
Vimpat is one of the drugs given in emergency situations. When someone has breakthrough seizures, hospitals often use aggressive dosing to stop the seizure activity quickly. After the patient is out of immediate danger, the medication and dosage are reevaluated and adjusted by the patient's regular doctor. I experienced something similar last December when I had a cluster of seizures and had to be taken to the hospital. The hospital dosage caused significant side effects, but my doctor was able to reduce it to a more tolerable level afterward. I hope you and her doctor can find a dosage that brings her more benefits than harm. I've known many people who take Vimpat and are satisfied with it.
Thank you for sharing that additional information about your daughter. Regarding the déjà vu episode you mentioned - did you experience it, or did your daughter? Déjà vu episodes are often associated with simple partial seizures (also called auras) that sometimes precede other types of seizures.
About your question on managing catamenial epilepsy. My neurologist worked with my gynecologist to put me on continuous birth control pills (taken for 5 months without breaks to prevent menstruation). This approach has significantly reduced my hormone-related seizures. However, since I'm 54 and your daughter is much younger, her treatment approach would likely be very different. I'd definitely recommend having her neurologist consult with her gynecologist about age-appropriate options.
Have you been able to follow up with her neurologist since the hospital discharge? PNES and PTSD can indeed co-occur with epilepsy. I recently experienced some PTSD symptoms following a complex partial seizure myself. There are some helpful discussions about this topic here in our group if you're interested:
Epilepsy or PNES seizures?
https://connect.mayoclinic.org/discussion/epilepsy-or-pnes-seizures/
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
I hope things improve for both of you soon. Please keep me updated on how she's doing.
Chris
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Also her MRI as clear again. She had one in the hospital.