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New onset of epilepsy

Epilepsy & Seizures | Last Active: Feb 14 4:27am | Replies (5)

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@amcquaig

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!!

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Replies to "Thank y'all so much for your feedback. Today was a good day. We recently switched to..."

@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)