Intractable autoimmune generalized epilepsy

   It’s interesting. If I see a person smiling, or a person who looks healthy, my brain automatically becomes jealous. I wish I were them, I wish I smiled like that, I wish I was healthy like that. Then I realize, there are people who probably think the same thing about me. I’ve had many people tell me how healthy I look, or how great my smile is. How happy I look, how well I must be doing and how proud they are of me. I smile when they tell me, I say thank you, I nod. The occasional times I’ve told people how I really was, all I received in return was, “wow, you’re so strong.” I wish I could convey the fear and hopelessness behind my smile.

 I have  intractable generalized epilepsy. My  seizures are most likely being caused by an autoimmune condition based on positive blood tests, a SPECT scan that showed abnormal blood flow in my brain, and increasingly frequent seizures. So far  I have not responded to any therapies. I am currently on five medications for seizures: Zorontin, Klonopin, Lamictal, Onfi, and Briviact-and still having frequent tonic clonic seizures, myoclonic seizures, and absent seizures despite the medications. I take Ilaris and immune globulin infusions that also have shown no promise in addressing the autoimmune issues. I have tried Depakote, Keppra, Topomax, Trokendi, Vimpat, Zonisamide, the Ketogenic diet and the Modified Atkins diet. Each medication comes with it's own never-ending list of side effects. They all contain a black box warning for severe psychiatric events including and not limited to suicidal ideation, irritability, anxiety, nervousness, aggression, anger, mood swings, apathy, and insomnia. Unfortunately, I have each side effect, which I have tried to counteract with antidepressants unsuccessfully.

Epileptics have a higher rate of depression than the general public. I still can’t accept the depression. I still feel guilty, like it’s all my fault. And because I am able to go to school, and do work,  then I assume that the depression isn’t real. 




The majority of people really do not understand the impact of refractory epilepsy or autoimmune issues on daily life. The drugs used to treat both conditions can have horrible side effects... sometimes worse than the condition itself. I struggle daily to simply get out of bed. I lost all of my hair to either my autoimmune issues, or the drugs used to treat my epilepsy. I am in pain on a daily basis, feeling like I have the flu. I'm exhausted, I don't sleep well due to the fear and high probability of having a seizure in my sleep. 

I have been told by one of the top epileptologists that I am currently having so many seizures I am at a high risk for SUDEP ( sudden unexpected death in epilepsy). Imagine hearing that when you're only twenty one. I have seen the doctor that first linked autoimmune issues with neurological issues, and was unable to tolerate the treatment suggested.

  At nighttime, I sit with two bottles of Midazolam spray to stop seizures next to me. And then I lay there. I lay there knowing that I might not be here in the morning, no matter how small the possibility is, it’s there. I lay there too scared to close my eyes. I lay there crying for hours, searching the internet for an answer.


The combination of severe seizures, severe autoimmune issues, and severe depression-has lead us to start seeking alternative treatments that are not covered by insurance.  

Epilepsy can be an invisible disease, until a seizure. People don't always appear sick from epilepsy, and I want people to understand that just because it can be invisible does not make it any less serious than visible medical conditions. Epilepsy cannot be cured, it's a lifelong journey. I have spent weeks in the hospital hooked up to 24 wires monitoring my brain waves. This is a yearly experience for me. My longest hospital stay consisted of me being at Lennox Hill hospital for over two weeks, receiving intravenous immune globulin. I was getting three shots of heparin (blood thinner) every day, I was unable to do anything. I had a terrible reaction to the intravenous treatment, which is why I started subQ, which did not help me.




It is extremely difficult for me to ask for help and something I never thought I would have to do, but I am at a point where I do not really have an option. I am a full-time student in college going into my second semester as a sophomore. I have maintained a 4.00 GPA, as well as been a learning assistant and tutor for psychology despite everything I have spoken about. I love going to school and learning and I want to continue to be able to. My mom drives me and stays at college with me each day and has given up much of her work to do this. 

The alternative treatments I am asking for help with are weekly acupuncture sessions and CBD oil, which insurance does not even touch. There is evidence that acupuncture can help to re set and re balance the immune system. 

If you do not want to donate to  my specific fund raiser , please consider donating to either www.epilepsy.com or The American Epilepsy Society www.AESNET.ORG

Thank you to everyone who took the time to read this, and thank you to the amazing people I have in my life who have gone above and beyond to get me to where I am now.