New onset of epilepsy

First I would like to say, I am sorry that you and your daughter and family are going through this. I was diagnosed with seizures from a young age, so I understand your feelings. What I would suggest is that you make an appointment with a neurologist that has also a fellowship as well as a degree in neurology. I find that when I have seen regular neurologists, that dont have the expertise in how vast this condition is. If they have a fellowship, they have extra training and knowledge in seizures, that was something that I had been missing for years when I was trying to figure out my own seizures. Also, there are different types of EEG's that a person can have to see what the brain activity is, and what is exactly happening. If she has not had an EEG, that needs to happen, as the doctor will see the electrical activity of the brain, and can diagnose what type of seizure is happening. I also had a take home EEG, and found that I had them in my sleep, which I was unaware of. This was very insightful, because then the neurologist also sees what is going on in her sleep. I believe mine was a 2 day EEG that I had put on at the hospital, and then wore it home. These are incredibly helpful. As someone that suffers from seizures, I find that rest is the most important factor. Rest is imperative to how a person will function, and also nourishment. Another huge factor is stress, and I realize life is full of this however, for someone with seizures, this is the worst thing for us. I try to practice this daily. I also learned that when I was going through stressful periods in life, or changes with my body, the seizures were worse. I would keep a journal, it has proven for me to be so beneficial. Then you can go back and actually see, where your progress is and what influences the seizures. I realize that this is incredibly hard, but the benefit that you are on this forum, is a wonderful thing. You can ask questions to many people and get amazing feedback. I joined here for that reason. Please know that you are not alone, that there are people who care and understand, and remember to take time also for yourself trying to navigate this. The Epilepsy Foundation is also a good resource. Sending Love and Prayers. Please be well.

@amcquaig
I'm sorry to hear about your daughter’s seizures.
My epilepsy and many others do come on quickly. I've had epilepsy for 58 years and I was standing in front of my window looking out when my first generalized tonic-clonic seizure occurred.
You may want to search for a
neurophysiologist who generally has more training in diagnosing and treating epilepsy which can be extremely complex. Also more likely better trained to interpret EEG’s. The cause of seizures are found or think they’re found) about 50% of the time. Epilepsy is often misdiagnosed.
Does your daughter have aura's (which are usually focal aware seizures prior to her tonic clonic seizures or perhaps even prodomes which are warnings that can happen hours to many days before a seizure. I don't hear of many people who have them or recognize them.
Like @closetmonster93 said an EEG is essential but about half are normal even in patients with epilepsy. Also she should have an MRI and blood tests all of which I imagine she's had.
I’d ask any Neurologist you see if there fellowship is in epilepsy.
There are also epileptologists who are most qualified.
If I’m having a routine EEG I don't sleep the night before. I would question why the doctor started her on the max dose of Keppra. is she still having seizures on the Keppra?
Ake care,
Jake

Hi @amcquaig
As @jakedduck1 has well said, epilepsy is often misdiagnosed. I have had epilepsy since I was a teenager, but I only got the diagnosis of it when I was 48 years old (I am now 54 years old).
My first two years of treatment with common neurologists were terrible. But all changed when I got to see an epileptologist.
As @closetmonster93 mentioned, the Epilepsy Foundation is a good resource for learning more about epilepsy. Through their information, I understood that there are different types of MRIs, asking my neurologist at that time to do a specific MRI to check if I also had sclerosis besides my temporal lobe epilepsy. My neurologist said that this would be unnecessary, but I insisted and so I discovered that I have temporal lobe epilepsy with mesial sclerosis which is a highly refractory kind of epilepsy. So my piece of advice is to learn about epilepsy.
I send you here the link to the Epilepsy Foundation on understanding epilepsy: https://www.epilepsy.com/what-is-epilepsy
Recently, I have discovered Cure Epilepsy and watched some interesting webinars they produced: https://www.cureepilepsy.org/webinars/focal-onset-seizures-from-causes-to-care-to-potential-cures/
Wishing all the best to your daughter and you!
Chris (@santosha)

Thank y'all so much for your feedback.
Today was a good day. We recently switched to a new neurologist who does specialize in epilepsy and he had my daughter do an at home EEG. Today we got the results and the doctor advised us that my daughters brain is actually "misfiring" about every 10 seconds and that she has actually had epilepsy her whole life. Of course we asked him why she just began having the tonic-clonic seizures when she turned 19 and has otherwise had no symptoms of epilepsy. The doctor told us that it has to do with her hormones changing as she becomes a young adult. We have noticed that without fail she has a seizure at least once each month during the time of her menstrual cycle. The dr. told us that is because during that time her estrogen, progesterone, serotonin, etc. decrease which causes the vessels in the brain to dilate and therefore making her more susceptible to the seizures. The Dr. (sorry I keep repeating this) was so incredibly helpful and answered all of our questions and "dumbed it down" so that she and I could understand it. He has also added a new medication to the Seizure meds that she is currently taken and explained how they would help with her epilepsy. As a mama, you know we would do anything for our children and seeing the slight sense of relief on my daughters face today and just knowing that we seem to have finally found a dr. who knows what to do and wants to help her....well, that just makes my heart so happy. Continuing to pray that we can get this under control and praying for the millions of others who have to deal with this condition as well. God's got this!!

@amcquaig
Good Morning!
That is great news, I am very happy for you.
There is something that is called the latent or silent phase in epilepsy. The silent or latent phase in epilepsy refers to a seizure-free period that occurs after an initial brain insult (such as trauma, infection, or injury) but before the onset of spontaneous, recurrent seizures. This phase is a key part of the process known as epileptogenesis, which is the development of epilepsy. At the Epilepsy Foundation, you certainly can find more detailed information about it.
My epilepsy also started in puberty and I have had a silent phase of around 10 years. At the age of 5, I had an accident and was in a coma for one week, recovering well and with apparently no consequences. But at puberty, this changed and seizures appeared.
There is something also called catamenial epilepsy, a type of epilepsy where seizure frequency worsens in relation to the menstrual cycle. Here is a link with more information about it: https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy
In 2021, my epileptologist discussed this with my gynecologist and since then I have been taking anti conceptional without pausing for 4 to 5 months, having no seizures related to catamenial epilepsy anymore in those months. Great measure! But I am much much older than your daughter. So, please check with your doctor if this measure would also benefit your daughter and bring no harm to her.
All my best to you!
Chris (@santosha)