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Daughter recently Diagnosed - Could she outgrow it?
Epilepsy & Seizures | Last Active: Aug 31, 2025 | Replies (21)Comment receiving replies
@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
Replies to "@melissa1234 Hi Melissa! I'm very sorry to hear about what you and your daughter are going..."
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Thank you. 1. Vimpat 100mg 2 times a day is what she is on, however that drug is not FDA approved for monotherapy in Generalized Seizure Disorder. I have asked 3 neuros on this and am not getting a straight answer. I have read that they have used it to treat some peoples Generalized Seizure Disorder, but my fear is it isn't enough to hold that flood gate of neuro activity back. It is approval for partial seizures and adjunctive therapy for generalized (only recently). She is tolerating it well, but the question is, is her risk covered being generalized seizure disorder? Or do I need to push to get her on something else. 2. Deja Vu is what she experienced - two episodes before her tonic clonic in the hospital. First one was about 24 hrs in advance of the tonic clonic, then the second one which was much smaller - just a passing quick feeling was about 12 hours before. I know these can be seen as small seizures. The problem is post that tonic clonic they did a 24 hr EEG and it showed no focals. Just again generalized discharges - no seizure activity. Not sure how accurate that is. 3. I understand that if she has a abnormal EEG she isn't likely having PNES seizures. I haven't read that those can be happening at the same time of other seizures picked up on EEGs. Given her electrical load in her brain I would assume anything she is dealing with is just Epilepsy and PTSD symptoms. But I could be wrong. 4. I have talked to a few people about "hormone impacting" epilepsy. Because she is younger it is harder as her hormones are all over the place. I have a lady who was put on estrogen and it stopped her seizures, but I thought estrogen spikes is what caused them so I am incredibly confused. Other docs have said a straight Progesterone pill/etc would be the first trial if they did anything. Current neuros are not focusing on this and I am just fearful for that next "month".