Why this uncontrolled epilepsy?

Long story short, My adult 24F step daughter is on the autism spectrum. She lives with my wife and I full time. She has the mindset as a child most times. about 4 years ago she had her 1st seizure. then 6 months later, her second. It went on like that until last year when she had a massive seizure where she was turning blue. She was in icu for a week, and has had many tests done. she is on medicine called brivaracetam for the last 4 years. just in the last 3 weeks she is having them either every other day or every 3rd day. Last week they informed us she has frontal lobe seizures and have added lamictal to her meds. we also have a inhailer called nayzilam if seizures last longer then 5 minutes. Does anyone have some insight on why all of a sudden they are getting more frequent? Thank you for your time... these things terrify me!!

Hello everyone, My name is Sam and I’m new to the group. I also suffer from epilepsy and nothing seems to help.

Hi, @sammierene81 - welcome to Mayo Clinic Connect. I moved your post here to this discussion so you could talk to others dealing with uncontrolled epilepsy/epilepsy where nothing seems to help:

-Why this uncontrolled epilepsy? https://connect.mayoclinic.org/discussion/zdc/

Hoping you can connect with other members such as @closetmonster93 @kb2014 @jakedduck1 @zachareycovert and others to hear about their experiences and how they dealt with epilepsy when trying to find an effective treatment for themselves or a loved one.

@sammierene81 we are so glad you joined the Mayo Connect experience. You will find this community to be insightful, supportive, and ready to help. You are part of a wonderful family with @lisalucier at the helm.

Thank you

@sammierene81 - very glad you met @dannoyes. I'd also like for you to meet @santosha. She also may have ideas about dealing with epilepsy where nothing seems to help.

Confirming when you said that nothing seems to help, sammierene81, that you mean seizures? Or other emotional/sensory symptoms?

@sammierene81 @lisalucier brings up a good point. When the meds don't help, I would also explore FND seizure disorder. FND seizure disorder is real and isn't "all in your head" like some neurologist will insinuate. It is a biological/physical issue that happens in your brain where you have symptoms that look just like epileptic seizures, but they aren't. This doesn't mean they aren't real; they are just different. In my case, I have both FND seizures and epileptic seizures. FND seizures are distinctive in that they don't show up on an EEG as producing the same electrical stimuli as an epileptic seizure. They are very challenging to manage, especially if you have both types of seizures.

So the obvious question is, what do you do? If you can get into the Mayo family, they may recommend that you do an EMU study. This is where they dig deep into your medications, possibly removing all your medications (they did this for me) to study your seizure activity in-depth. The insights are invaluable. Through this process, they may adjust or remove certain medications to give you a whole new foundation that they can use to help manage your situation. Having uncontrollable epileptic seizures is highly challenging and also dangerous. Just remember that you have to be the champion of your health. The Mayo team is unlike anything I've ever experienced and I'd do everything possible to get into their system.

Lastly, here is an extremely helpful video about FND seizures:

@zachareycovert Hello. I have had seizures my entire life. I have had over a dozen neurologists/eliptologists, over the span of my lifetime. I will say that it is a process that is never ending, and a search that I continue everyday of my life. The longest period of time I went without a seizure, was approximately 30 years, however, that was on medication(depakote). However, during this time, I was brutally attacked and suffered brain trauma, this I believe severely impacted the epilepsy. Therefore meaning, starting completely over. The Depakote no longer worked, and this meant that the seizures were rampant and uncontrolled. Like many people, I had very severe tonic clonic seizures, that could not be controlled by any medication. I am what they call medication resistant. Most times the medication does not work for my seizures. It is very difficult and it is proved very difficult to find something that works. After years of seizures almost killing me, and at the end of the road for trying medication’s, I had to start completely over. This meant going through a whole new seizure study, brain trauma study, brain mapping, and genetic studies. Doctors always thought that my seizures were caused by a predispose genetic factor. This was not the case for me. I found after extensive brain mapping, seizure studies, and genetic studies, mine is due to brain trauma, while young, as well as an adult. I realize everybody’s story is different, and I have had to look at alternative ways to try and treat and grasp this situation. I currently am on Keppra. I have taken a very unorthodox measure of trying to look at alternative treatments. For me this includes; a lot of of lifestyle changes, also acupuncture, exercise, meditation, eating whole foods, supplementation with vitamins that my body is lacking, and water therapy. All these lifestyle changes, and activities are all made aware and discussed with my eliptologist of current. I realize that not everybody is receptive to the same things. Our body chemistries are all very different, some of us are medicine resistant, sometimes the seizures do not affect the same parts of the brain, there are all kinds of extenuating factors that are different for each and every one of us, however, these are all conversations that you can have with your doctor, partner, family, whatever to look at options that work best for your situation. These are options that have helped my situation a lot. I am currently a year plus seizure free. That doesn’t mean that it’s necessarily a fix, things can change things can happen, however, I don’t necessarily look at it as the end of the world if I were to have one. Nobody likes to have a seizure, but I take that day by day month by month and year to year. I am very aware of what I put in my body what I do to my body. I am of an age now where I don't want to battle it. It is part of me, and I embrace it, not fight it. I am always looking for what I can do at a conscious level. Staying positive is huge. Rest is huge. Where I can make changes, I do, with input of doctor, and we tweak accordingly. It is a life lesson I continue to learn from. This group has great input, suggestions, and I am thankful for that.

@sammierene81
Hi Sam,
Welcome to our group, which has been of great support in my epilepsy treatment journey.
I know how the treatment of epilepsy can hit us hard, especially at the beginning. I started my treatment for temporal lobe epilepsy in 2019, first with neurologists and psychiatrists. Nothing seemed to be of much help until I was referred to an epileptologist and started an individualized treatment, which improved a lot. Each body is unique, as my current doctor says.
As @dannoyes has already suggested, it might be interesting to have an investigation at an Epilepsy Center, preferably one at level 4, so that you can have a better understanding of your epilepsy.
Educating myself on epilepsy and getting the support of my neuropsychologist were also extremely helpful in this journey, stopping to fight against it and embracing it more, like @closetmonster93 has well said.
Would you mind sharing more information on your epilepsy journey with us?
Here, for sure, you will not feel alone in your journey!
My best wishes!
Chris (@santosha)

@dannoyes
Don’t you believe functional episodes, and any physical issues are psychologically induced?
If not how are they associated with or considered to be seizures?
Take care,
Jake