My symptoms started in high school. However, I feel like I showed emotional and behavioral symptoms before my more serious symptoms began.
I was gaining weight from constantly trying to eat throughout my classes. When I wasn’t eating in class. I would try to focus and wake up at the end of class or the end of my test. It looked as though someone with mental health problems was writing in my notebooks and on my tests. My grades in all of my classes started to decline. I had a math teacher that noticed something was going on with me, and she moved my seat to be right next to her.
However, this did not make a difference. Concern was expressed to my mother. She took me to a primary care physician who referred me to a neurologist/sleep specialist. After meeting my new doctor at her office I was sent out for blood work, and a sleep study. My first sleep study included a daytime sleep study. I remember this occurring when the clocks went backwards. I was woken up every time a wire popped off, and when my “nap time” was done. I was frustrated with not being able to sleep how I normally would.
Towards the end of my Junior year in high school, I was prescribed medication after being diagnosed with hypersomnolence/narcolepsy. I then had to start experimenting with medication. I tried a few stimulants and was prescribed a very expensive medication in an attempt to regulate my night time sleep cycles. When this medication was prescribed, I was in college and I could not take it regularly due to sleeping through alarms for my second dose, or not taking it at all due to fearing being in a coma.
Even with medication, I would not be able to stay awake during some of my lectures. I also was unable to physically get out of bed and make it to my classes. The only times I have felt cataplexy was when waking in the morning. Usually, even if I had to slept on my hands, I felt as though there was no feeling and my hands couldn’t function. Sometimes my legs would feel heavy.
When it came time for my second sleep study I had to stop taking all of my medications three days before the study. By the time I had my sleep study, I was extremely irritable and exhausted. I tried to do the daytime sleep study but felt as though I was being tortured. I was emotionally unstable and unable to get the sleep I felt I was in desperate need of. I left the sleep study before completing the daytime portion of the study.
From what I know, there is no cure for my sleeping problems. Due to my narcolepsy possibly being caused by irregular sleep cycles, there is a chance my condition will progressively worsen. As a recent college graduate, and a young professional in the social work field; I am fearful of trying a new type of medication or participating in a clinical trial. After my last job, where I tried to be forthcoming with my disability, I was treated as a liability even though I was on medication and wasn’t allowed to go into the field for three months. I still try to see my neurologist from the previous state I live in because I am fearful of not being able to find a doctor that will treat me. Especially without doings sleep study. I cannot risk working a weening of my medications because it would be dangerous to drive clients.
My advice to others just is try everything possible to not be on stimulants/controlled substances for treatment. Also, ensure that you have a support system or others who can help you if you need to do a sleep study. Participate In support groups or find a way to communicate with others with the same diagnosis to see what things they do that work for them.