Out of work due to refractory epilepsy

Hello, my name is Skylar Carson. I am 24 years old and I am currently dealing with a new diagnosis of refractory epilepsy. Refractory epilepsy means my epilepsy is not responding to antiepileptic medicine. I have currently tried 3 medicines, and I am still having weekly seizures. I have been out of work since May 28 because of the following. On May 7, my amazing boyfriend woke up to me having a tonic clonic (grand mal) seizure in my sleep. He handled it so well, and I was rushed to the ED by ambulance. At that point, the doctors knew I had a seizure but were confused as to what happened and did not put me on any medicine. We were hoping that this would be an isolated event as I had never had a seizure before, so I attempted to return to normal life. I started working at Sebago Brewing Company in April, and am loving the job and all of my coworkers. I had returned to work as normal, and on May 28th at Sebago brewing co., a coworker found me having another tonic clonic seizure. Ambulance was called, I became conscious, and once I got into the ambulance I fell back into another seizure. This time the ED had a better idea of what was happening and they put me on an anticonvulsant. Because of this I am not allowed to drive until further notice, or do a lot of things I love. After May 28 I was hesitant to return back to work. I had medicine to adjust to and I had no idea what was triggering my seizures. I spent about 3 weeks at home trying to adjust to my medicine before the side effects got way too intense to deal with. Another ER visit to change medicine. I needed to try to return to work. I have been able to very do low stress low energy things without any big problems, most of the time. July 10, I attempted to work a PT (15 hr) week. I am struggling financially as I have made no money since May 28, and I thought I was feeling good enough to give it a try. I was feeling great, and it was liberating to be able to be at work. Around 4.5 hours into the shift I felt a seizure aura come over me. My coworker came back to where I was and asked me a question (which I do not recall), and went into the bathroom. By the time she came out, I was having my 4th tonic clonic seizure. I was taken to the ED by ambulance again and now we are waiting for some test results. I am so bummed out. I thought I was doing better, but as soon as I returned to work the cycle repeated. Throughout my life I have had some really strange experiences that we think have been “petit mal” seizures. It is an awake seizure, which is a really scary feeling. I remember these back to my childhood, but of course I did not know what was happening. I am still struggling with these currently. A petit mal seems to be very similar to my seizure aura, or what I feel before a grand mal seizure. It is hard to feel confident or safe in public when I randomly have these events, especially knowing it could lead to a full grand mal seizure. I have them fairly often lately, as well as in my sleep. We are currently in the process of attempting to adjust my medicine again to see if we have any positive reaction. During my 72 hour EEG 7/31-8/3 I had 2 seizures in my sleep as well as a petit mal. This is going on 2.5 months of me not being able to work, and who knows how long until I can return to work. We are working on some sort of benefits but it is so difficult. I have been living off of my savings account, which is not massive. Because of the fact that I had just started working at Sebago brewing company, I do not qualify for benefits or any help from work yet. The uncertainty of my safety has been so hard to deal with, as these seizures have been very random. I am terrified of putting anyone in public in a position where they have to see someone seize, so I have been staying home during this period. Having had two seizures at work within less than two months has led me to believe it is safer to be home during this time until I know I am seizure free, and that is going to be even more difficult than we thought. Adjusting to anticonvulsant medicine has been a lot to deal with. Seizures are terrifying to go through, and learning to live with them is hard. If medicine does not work- we could have to lean towards surgery. In reality I am out of work indefinitely right now. Anything that anyone would consider doing to help during this time would be so amazing. It is not easy to ask, and this whole thing makes me very anxious. Thank you for reading ❤️❤️