I am 13, I suffer with Migraines, I am not crazy!
I am writing this article on behalf of my 13 yo daughter. She lost her long term memory on 9/27/11. She has no recollection of her life prior to that date. She was 12 yo when she lost her memory. She was complaining of mid epi gastric pains. I took her to the ER. Normally she would argue and tell me that she did not want to go to the doctors because she always tells me “the doctors are not going to do anything for me.” That day she did not argue so I knew she needed to go. I dropped her off by the ER door and went to go park my car. By the time I got back to the ER, the ER staff had taken her in. She had her eyes closed and was shaking. Her eyes were rolling in the back of her head. I told the nurses that that was not normal behavior for her.
We got into the ER room and her face was not uniform, one side of her face was drooping. She was talking to me and her words were garbled and she was crying.
When I told her to stop crying, she told me “I am not crying.” The ER doctor came in the room and told me that my daughter had had extensive tests and that he did not see anything wrong with her. I told the doctor I don’t care what the tests showed, my daughter was not acting right.
By the time her dad was able to meet us in the ER it was about three hours later. When my husband walked into the room, Cass looked at me and asked me “mommy who is that man?” I said baby that man is your daddy. Cass said “that man is my daddy?” I told her again yes baby that man is your daddy. Because I refused to take Cass home they agreed to admit her.
When we were upstairs in her room, her famiy came to visit her: her sister, aunt, uncles and cousin. She did not recognize any of her family. She was talking on the phone with her grandma and told her grandma “I am in a room full of strangers.”
Since that date Cass was hospitalized for six days in December for DHE treatment for severe migraines. We were able to send Cass back to Hawaii to see if anything would trigger her memory. Nothing did.
Cass was out of school for about six months. Cass got well enough to return to school. She did well for the short time that was left in the school year.
Cass had an EEG in the neurologists doctors office. My husband was in the room with her. The tech told Cass if she was ok. Cass nodded. Last thing the tech told Cass was to not say anything and to keep still. Fifteen minutes went by and the tech returned to check on Cass. When he tried to tap her Cass did not respond. The doctor was called in, ambulance was called and the doctor tried to give Cass anti seizure medication. My husband later told me that Cass was going through her seizure episodes but he thought that this was being elicited by the test. By the time I got to the doctors office (at this point I had no idea what was going on, my husband texted me to meet him at the doctor office) I rushed to the back and my daughter was already on the stretcher. The hospital was right across the street. I answered questions for the paramedics, and jumped in the ambulance. We got to the ER and my daughter was given several medications. The medications wore off. Cass was crying and slurring her words. Cass was displaying the same behavior like back in September when she lost her memory. My poor daughter was thrashing around, we could not even console her because her head was hurting so bad. They gave her medicines but the medicines were not helping. I watched my daughter thrash aroung for over two hours because she was in so much pain. The ER doctor finally gave her a medicine that let her sleep for 45 minutes. When Cass awoke she was right back to the same intense pain. The neurologist finally ordered DHE and when administered helped Cass’s migraine. The ER doctor kept asking me if Cass was stressed. What triggered this migraine? Hello people the EEG test triggered her migraine. Cass was admitted overnight for observation.
Because we figured out that light is a major trigger, we decided to get Cass a pair of transition glasses to help Cass’s eyes. The tech was fitting Cass for her glasses. I told the tech I hope that there was no flash because Cass was sensitive to light. Well flash Cass dropped back with her eyes blinking, blinking. I told the tech she is sensitive to light in other words she can not have light. The tech apoloqized miscommunication I guess. This sent Cass in a spiral of seizure like episode and migraines. I had her Cafergot. She had two doses and when we got her home she had to take Cambia.
It seems like when we take two steps forward we take three steps back. Cass has also been diagnosed with fibromylgia. It is so frustrating because my daughter is a bright, funny, smart girl. To watch her suffer is beyond anything a parent wants to see happen to their child. If anyone has any tips, suggestions, we would gladly appreciate it.