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Daughter recently Diagnosed - Could she outgrow it?
Epilepsy & Seizures | Last Active: Aug 31, 2025 | Replies (21)Comment receiving replies
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".
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@melissa1234
Thank you, Melissa, for sharing this additional information about your daughter with me.
1.
My doctor once explained that while an AED is developed for a specific purpose - say, generalized seizures - it might still benefit patients with different seizure types. He gave me the example of Depakote, which is primarily indicated for generalized seizures, but some patients with only focal seizures have had excellent results with it. Finding the right AED requires a very individualized approach, as I've experienced myself.
By the way, 100 mg twice daily was exactly my dose when I was taking Vimpat.
2.
About the 24-hour EEG results, you mentioned that no focal seizures appeared, just generalized discharges. Did your daughter experience any déjà vu feelings during this EEG? As @jakedduck1 mentioned, many people with epilepsy have normal EEG results. I, for example, lived for decades with epilepsy without knowing it because all my EEGs were normal. As Jake suggested, getting to an epilepsy center would be ideal if possible.
3.
Unfortunately, you can have both seizures and PNES episodes, as I've recently discovered myself. As I briefly mentioned in an earlier post, after a strong complex partial seizure I had about three weeks ago, the episodes that followed - which I initially thought were simple partial seizures - were actually PNES episodes. These episodes felt exactly like my simple partial seizures, but the hospital EEG showed no seizure activity in my brain during those episodes.
4.
About catamenial seizures, the best approach would definitely be having your daughter's neurologist work together with a gynecologist to prescribe the optimal treatment for her catamenial seizures. If the current neurologist isn't addressing this, I would consider seeking another doctor if I were in your position.
Have you been able to contact Mayo Clinic for an appointment?
Chris
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