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Understanding IH
By Laurie | June 20, 2008
Aside from putting on some extra weight, a frequent furrow in my brow caused by headaches and looking a little tired, I don’t look like sick. Heck we all have our own cross to bear and as Gilda Radner used to say, “It’s always something.” I don’t like to identify myself as being sickly or to confess illness into my life, but the fact remains I have Idiopathic Hypersomnia (IH).
Most people don’t understand it and as a rule I am treated like I’m just a lazy person because I’m always tired. Well meaning friends who encourage me to get up and go for a walk or just do something simply don’t understand. “We’re all tired” is the common response. Yes, but unless you’re living with IH, you cannot possibly understand what it means to be this tired, all the time.
And yes for literally decades I have seen specialists and tried treatments and supplements and medications and this and that and that and this and no thanks for offering but your expensive vitamins will not help this. I’ve tried it all. I was actually grateful with the medical tests came back to reveal that I indeed did have a sleep disorder and that I was not crazy and lazy!
IH is a neurological condition, diagnosed with a series of medical tests, which causes excessive sleepiness, not generally due to insufficient sleep at night. Generally the person with IH will feel the need to nap several times during the day, and may feel sleepy throughout the day. Prolonged IH can cause confusion, memory loss, a decrease in energy, and anxiety that extra naps are not providing relief from. Social, family and work life can all be affected by the condition, and people with a lengthy case of IH may lose jobs and have strained relationships with family and friends. (Those of you who know me… does this sound familiar?)
This is challenging because IH is not the fault of the person and is in fact an illness. People with IH cannot simply “snap out of it” by drinking additional cups of coffee or getting more sleep. In fact using caffeine may worsen the condition.
IH is difficult to treat because there is no cure. It may be treated with stimulants to help the person stay awake during the day, however people with IH do not typically respond well to the medication. The side effects are great – including horrible headaches, jittery feeling, excessive mood swings and irritation and in some cases, patients continue to remain sleepy in addition to the side effects.
I have never fallen asleep while driving and I am fully capable of taking care of my children. I have good days and I have bad days. I’m not looking for sympathy, pity or even allowances. The point is merely to give you a better understanding of idiopathic hypersomnia.
Lastly, if you know any mom who is living with a chronic illness, I encourage you to read Lisa Copen’s article: “8 Ways to Encourage a Chronically Ill Mom” http://www.americanchronicle.com/articles/49033
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