I warn you this is long but everything written is important to understand what happened to me and how awfully I was mistreated because of my so called fake seizures.
My seizures started 4 months ago at a time in my life when everything was going better than ever. For the past four months I have several episodes a day (3-8) in which I have convulsive movements mostly in left side of my body for about 1-2 minutes which exhaust me and give me awful headaches (I have also suffered from migraines for 2 years)
After one of my seizures got very intense (about 2 weeks after they started) and did not stop I was put in the hospital for 9 days followed by what I thought was an extremely amazing neurologist. (for that matter he was renouned nationally but a migraine specialist). I had already been seeing him for 3 months for my migraines.
During the hospital stay I had a VEEG in which multiple episodes were recorded and 2 epiliptaform waves were seen as well as post ictal slowing. Diagnosis: epilepsy complicated by a complex migraine disorder as well as a right frontal lobe AVM as well as some non epileptci seizures.
The problems started when I had to leave college and move home where the hospital did not know me. Once in a while I have cluster seizures in which I do not recover and after 30 minutes my parents are forced to call 911. I am usually given a lot of versed in the ambulance (does not calm down seizure) and then ativan in the ER, occasionally IV phenytoin. But sometimes doctors look at me with confusion. my seizures do not resemble classic seizures therefore: psychogenic, conversion disorder, non epileptic in other words not taken seriously. Oh I should also mention a bias I get every single time I see a doctor. from the ages of 12-15 I battled a serious eaiting disorder, depression and self mutilation which has left my arms scarred forever even though they are now clearly healed and very old. (I am19 now).
Most recently after an extremely hot day where I spent all day in the sun with friends at a country fair with a lot of stimulation I passed out, had a seizure which did not end. I was brought to the ER (hospital where I had been hospitalized previously). My memory from that day is fuzzy but I remember waking up in a gown on an ER bed, alone. My friends were nowhere in sight and neither was my purse or phone. I had no call button near me and no nurse was in sight.
I continued having seizures in which I remained conscious enough to hear hospital staff pass by and say: "see that, yeah she needs a psychiatrist." Eventually a nurse came in, looked at me and then left without a word. I was left there drooling on myself and seizing for 2 hours until I was able to make enough noise to get a nurse in my room.
I very rationally told her: "wether you think my seizures are psychosomatic or not, I still need to be treated and taken seriously as I can not control this." To which she very coldly responded: Oh we are taking you serisouly, the ER has just been very busy today. A lot of very serious emergencies, car crashes and heart attacks. the doctor will be in when he can.
When the doctor finally came in, the very first thing he said was: I see you have a problem with cutting.
I was flabergasted! My scars are white, it is clear they are not recent and that is what I told him. He then told me than my seizures were not real and therefore no medecine would help me. He got up and left. At this point I could not take it anymore. I very angrily pulled off my heart monitors and discharged myself. I was informed my mother was in the lobby. (she had driven 2 hours to come get me and had not been let in to see me or given any information). I had to walk myself out of the ER still stumbling and not walking straight, extremely weak. At the end of the hall I passed out, hit my head and had another seizure. When I woke up nurses were yelling at me to get up. I heard one say: NO! no one help her up, no one is going to hurt her back for this girl. She'll get up when she wants to.
I managed very slowly to get myself up under the discussed looks of the personel and was wheeled back into my room dispight my distcharge. My mother was finally brought in not understanding what was happening. When she finally got it, she was horrified and demanded I be given something to make it through the 2 hour car ride home to which, in my mothers presence they were very happy to give me.
So that is it. This experience was truly traumatizing and my parents and I are at a loss for what to do and how to be taken srisouly. Even if my seizures are non epileptic, they are still out of my control and we just don't know what to do...