Living with Sleep Disorders

My name is Kristen and this is my story. I was about 12 years old when I started suffering from daytime sleepiness. Upon yearly physicals with my doctor I was told time and time again that my excessive sleepiness was caused by puberty and was just a natural part of growing up.

I lived a VERY active lifestyle and throughout high school I was very involved in music and athletics. This was also the time my mother was diagnosed with hyperthyroidism. The summer after her diagnosis I was tested for the disease and the results were negative, but every year I became more and more tired and I began to think something was very wrong. While all of my friends were out until midnight and sometimes later, I was at home sleeping for 12 hours at night and another 5 during the day.

Summer after summer I poured my heart out to my doctor and explained my symptoms and that they weren’t any better. All I received were tests for hyperthyroidism and anemia… again. I began to give up hope, that I would always be this tired and I became very depressed. I went to college and was away from my family and my routine.

Everything went downhill when I found out I had mono in my first semester. After that semester I was told I could be suffering from mono still and that excess sleepiness was normal. I thought to myself, “How is sleeping 17 hours a day normal!?” I surged on and continued to struggle with my classes. I had no motivation, no focus or attention, and an inability to stay awake. Nothing was improving and I had lost all hope. I scheduled an appointment with a psychiatrist to discuss the possibility of therapy and depression treatments.

I went through many different drugs and one session of therapy which temporarily helped my mood, but I was still tired. Now I was motivated to do something and I pushed myself to stay awake, I worked out more, and I had a feeling things were bound to get better. During the spring of my junior year in college my mother, who happened to be working at the neurological department in the hospital in my hometown, discussed my frustrations and her concern with my excessive sleep and its effects on me to a doctor in the department.

He immediately recognized that I had serious symptoms. Thankfully, I was quickly scheduled for testing. I knew things were looking up and my depression subsided with the thoughts and hopes of finding a cure for this horrible problem. I received a sleep study and MSLT. The results were bittersweet. I received my test results at the end of that summer. Finally, someone recognized that my excessive sleepiness was a real problem! I was diagnosed with IDIOPATHIC HYPERSOMNOLENCE.

This basically meant that I had excessive daytime sleepiness and that the cause of this problem was unknown. No, it is not the same as narcolepsy. Yes, there is help!

I was prescribed stimulants to keep me awake during the day. This diagnosis couldn’t have come soon enough because unfortunately that summer I had many close calls in my car. I had been falling asleep in my car while driving and curb-checked several times that summer. After the medication I’m a whole new person! I can’t believe the difference it’s made in my life and I want everyone to know that when you think something is wrong, you’re probably right, so don’t give up! Be your own advocate when it comes to your health and never stop when you hit a dead end! For those of you suffering from this condition I sympathize and I wish you the best of luck with your treatment!