Idiopathic Hypersomnia: Journey to a Diagnosis

I had been a school bus driver for the past 7 years. On Friday, I was informed by my boss and human resources that I was to resign my position due to my recent diagnosis of Idiopathic Hypersomnia (IH) and my admitting to symptoms that could be dangerous; mainly the excessive daytime sleepiness. I was shocked and devastated. I knew my time as a bus driver was coming to an end, I needed more steady/stable hours, and the long days were really taxing on me. It was a daily struggle.  That day I was devastated. I had lost my job. Due to the reasons I had to resign my other bus driving job at the local city bus company. My DOT medical card was no longer valid without my neurologist signing off. I spent a lot of time thinking, and talking to my wonderful, supportive boyfriend, and came to the decision that maybe this wasn't such a bad thing to happen. I could not have lived with myself if I had ever hurt someone else because I was too sleepy to be driving a bus.

So what is this condition that ruined my career? Idiopathic Hypersomnia. Two big words that basically mean no matter how much sleep I get overnight, I do not feel rested or refreshed, and I can be insanely sleepy during the day. As far back as I can remember, I have been a tired person. This past summer, things really started to deteriorate. I was falling asleep as a passenger on a motorcycle. Not a good situation. It was time to dig into why I am 29 years old and completely exhausted all the time no matter how much sleep I got at night.

I went to my primary care doctor. They tested my blood, they tested my brain, they tested just about everything there is to test non-invasively. I had low Vitamin D levels. Even after a supplement and recheck, there was no change in my symptoms. I was finally referred to a sleep neurologist who ordered an overnight sleep study. All those wires later and an uncomfortable night in a comfortable Sleep Number bed (totally check those out, I would get one if I didn't have my awesome memory foam bed!) I got more normal test results. At this point when I hear "Everything came back normal" I want to cry. Something had to be causing my exhaustion. I had even tried going to a endocrinologist. She was awesome, she did in depth thyroid testing, adrenal and pituitary testing as well. Normal. I think I did cry after those results.

The sleep neurologist decided to redo my sleep study and follow it with a Multiple Sleep Latency Test (MSLT). More strange medical words. The MSLT follows an overnight sleep study so they can make sure you get a decent amount of sleep the night before. You are then left in a room all day (I had wifi and cable TV), given a nap opportunity every 2 hours for a total of 5 naps. The time it takes you to fall asleep and the level of sleep you reach in the timeframe is what helps determine your diagnosis. I fell asleep in all of the naps in an average of 6 minutes, after a "normal" night's sleep. See, I am not actually crazy, well at least in that aspect, I am THAT tired. Could you sleep a full night then fall sleep 5x during the day?

Eventually, I got my diagnosis of Idiopathic Hypersomnia because they ruled out basically everything else that could cause me to be so tired and unrefreshed. I did not have sleep apnea, I did not have narcolepsy. I did not have any "common" sleep disorders. I am just plain exhausted for no reason the doctor can find. There is no cure and no FDA approved medications. There are medications that I can be prescribed to promote daytime wakefulness. I am now trying a second one as the first one did not work and actually made me feel worse than just sleepy.

Now I am a state of limbo. I have applied for nearly 20 jobs and the only thing I ever hear is someone else was selected. I'm waiting to find out if I get unemployment, which I hate to do, but I have to have something for income, I have bills. Everyday now I sit home, filling with anxiety about those bills and not having the income or the savings to pay for them. I have decent credit, I don't want to ruin it. I am so lost, so hopeless. Right now it feels like I am completely and permanently screwed. When I apply to jobs I have to put down why I left my previous job, if I put down financial gain, why would I quit before I had anything else? If I put down medical, they will automatically think I am sick all the time and miss work (which I don't do).

Idiopathic Hypersomnia sucks.