The Diagnosis...

As I mentioned before, the diagnosis sometimes provides relief for a person. It is hard for healthy people to understand this, and it can sometimes be misinterpreted. When you have IH, the disease lets you know that things are not normal. You come to realize that you are way more sleepy than the people around you. Over the course of time, you come to understand that normal remedies that work for healthy people don't work for you. The reasons to which you attribute your sleepiness resolve themselves, but you remain abnormally sleepy. You often wake after hours and hours of sleep feeling worse than before you went to sleep. You begin the conversations with doctors and the testing---oh, the testing we undergo. For many of us with IH, the testing continues for years until one finally ends up in a sleep clinic.

The testing usually consists of ways to rule out any illness that causes fatigue. I need to make sure that I draw a distinction here because there is a common misunderstanding that happens, even among medical professionals. Fatigue is a general feeling that one doesn't have the energy to complete certain tasks. The causes of fatigue are limitless. Sleepiness, on the other hand, is the degree to which a person is inclined to achieve a sleep state as measured by brain activity and nervous system responses. Although a person who is fatigued may also be sleepy at times, the fatigue should not be misinterpreted as sleepiness.

Not realizing the difference, they test for arthritis (RA), lupus, multiple sclerosis, cardiac problems, chronic fatigue syndrome, diabetes, thyroid, parathyroid, Cushing's, Sjogren's, hormones/menopause, infections, depression, allergies....sometimes repeatedly before they consider a sleep disorder.

Luckily, somewhere in my testing (about three years in), I ended up in the sleep center undergoing an MSLT. During an MSLT, the patient's brain, breathing, and nervous responses are monitored to determine the length of time it takes for a patient to achieve a sleep state. This is measured over the course of several hours during which the patient is asked to fall asleep and awake when prompted. During my MSLT, I was asked to sleep seven times within a period of ten hours. I achieved a sleep state in less than 10 minutes during each section of the test (mean SL of <> is also critical for determining whether or not the sleepiness is caused by Narcolepsy or IH. If a patient has a rapid REM onset during these short naps, they likely suffer from Narcolepsy rather than one of the other hypersomnias.

When you are first diagnosed with IH, you feel relieved because it feels like the long road of trying to figure out what is wrong is over. You might assume that a diagnosis will lead to treatment, and you will feel better soon. You feel like celebrating, even. However, as you continue down the road with IH, you learn that having a name for the disease does not mean that there is a cure. You learn that people who are unfamiliar with the disease are no more tolerant than they were before you knew you were sick.

This period of time is frustrating for us. I felt angry, and I began to question whether or not the doctor was wrong. I learned that the medicines available were sometimes ineffective, almost always carried side effects, and often were annoyingly inconvenient to pick up from the pharmacy. The more I studied, the more I realized that IH is so rare, it is not likely to be the subject of well-funded research. I looked and looked, and as rare as Narcolepsy is, the literature about it was far more accessible than anything about the disease I have. IH is usually an aside in articles about Narcolepsy. I most desperately wanted to have something else during this time. I saw my life without hope as I began to realize that I would likely struggle with this illness for the rest of my life. I realized my potential was limited now that I knew I was sick. Likely I would not go to law school now...

As I scoured the net, I came across a couple of support forums for sleep disorders. Initially, I just read what people had to say, but eventually I dove in. If you are out there and feeling like I did, please find a forum. It might sound like something you would normally not consider doing, but it is amazingly helpful to talk to others with IH. It has helped me incredibly to talk with people who understand how challenging IH can be. It has helped me to communicate about my illness with my friends and family, and it has helped me to provide supportive words and compassion with others who are out there struggling with IH.