By Diana Kimmel, as told to Stephanie Booth
I have idiopathic hypersomnia (IH), which means "sleepy for no reason." But that name is frustrating. It doesn't capture how this condition makes me feel and how it affects every aspect of my life.
Years of Exhaustion
Starting in 1993, at the age of 23, I was just exhausted all the time. I would go to sleep at night, wake up in the morning, and feel like I was walking through glue all day long. I had absolutely zero energy.
I talked to my doctor about it from time to time, but they kept saying the same things – like, "You're not getting enough rest" or "Lose weight and exercise more." I got to the point where I stopped talking about it.
At some point, I thought maybe it was attention deficit hyperactivity disorder (ADHD) because it wasn't just being tired. I couldn't stay focused. My word recall was not there. I couldn't stay on task, and I really wasn't putting it all together.
I never thought it was a sleep issue, because I was going to bed normally at night and waking up.
There was probably over 15 years of me telling my doctors, "Something's off, something's not right." From time to time they would find that maybe my B12 levels were a little low or something like that. But overall, I felt pushed off and pushed off.
A Scary Accident
One day in 2010, I'd been to the doctor twice in one week and had blood taken. Everything was within normal range. I remember asking if I could travel the next week, and my doctor was like, "You're fine. There's no reason not to."
Meanwhile, I could barely hold my head up because I was so exhausted. I was driving my kid home from soccer practice, and somewhere along the line, exhaustion won out. My son, who was 11 at the time, was in the front seat, and he grabbed the wheel and got us off the road instead of into oncoming traffic.
I remember coming to and seeing him walking outside the car. At first, I couldn't figure out what happened. I was yelling, "You need to get back in the car!" because I thought I was driving. The car was totaled, but it was another lucky break where we hit a pole, which saved us from going over an embankment.
Looking back, there were other times before this where I left someplace and got home and didn't remember getting there. It was just automatic behavior. I was doing things but not awake enough to remember them.
More Doctors, No Answers
After the car accident, doctors kept me in the hospital for a couple of days and tried every test under the sun. They got to the point where they didn't know what was going on and sent me to a neural neurologist.
As soon as this doctor looked at my records and did some tests, he fit me into the box that he was comfortable with. That was, "Well, you must have had an epileptic seizure."
I didn't think so, but I went on medicine. Then, I had another experience where I was so exhausted that people were talking to me one minute and I was sleeping the next. They saw that I wasn't having seizures.
I went through more sleep studies, because then my doctor thought it was sleep apnea. It wasn't. I had no snoring issues. Next, a four-day EEG was ordered. They glued sensors to my head and sent me home. After looking at my test results, my doctor accused me of abusing drugs and alcohol.
I can tell you that I was not taking any drugs or alcohol. My partner was with me and she had the wherewithal to say, "I need you to do a drug screening right now." Otherwise, that [accusation of drug abuse] would have gone into my medical record.
Finally, the Right Diagnosis
I don't know how much longer these tests and studies would have gone on had I not lucked into meeting a doctor in a sleep lab in 2011 who was doing clinical trials on people with idiopathic hypersomnia.
It was such a coincidence. I really was just at the right place at the right time.
After a spinal tap to rule out narcolepsy and a multiple sleep latency test (MSLT), the doctor told me I had idiopathic hypersomnia. "Don't look it up on the internet. There's nothing out there," he told me. "There's no information."
So I basically received an invisible diagnosis for an invisible disease. With little information about IH, those around me didn't take it seriously.
Living With Idiopathic Hypersomnia
Even now that I take an FDA-approved medication for IH, I'm not fully awake when I should be. It certainly is not a cure.
When you have idiopathic hypersomnia, it affects every single thing in your day. It makes you kind of beat up on yourself and feel like you're not doing enough. And on top of it, I don't feel like I'm doing enough because I'm sleepy and I'm tired. Then there's embarrassment. Being sleepy or tired translates into "lazy" for most of the world.
Anything out of my routine can throw me off. I can't always do things the exact time they need to be done, which gives me anxiety. I have to plan ahead and prepare for everything.
I did get to a point where talk therapy was definitely needed to not beat up on myself. Over the years, I've had the pleasure of meeting other people with idiopathic hypersomnia, and it definitely helped to talk to somebody who gets it and understands it.
I started some support groups in the Atlanta area, where I live, and that really was a big help for me.
Today, I'm really involved in the Hypersomnia Foundation, which makes me feel like I'm a part of something positive – getting education and awareness out there. Even though there are times when I'm too tired to get something done, there can't be a more supportive group to volunteer with. It's almost like a second family.
Today, I see myself as a sleep advocate. That's probably what I'm most proud about.
