The Face of Narcolepsy

What are the Symptoms?

Excessive daytime sleepiness

EDS, the symptom most consistently experienced by almost all patients, is usually the first to become clinically apparent. Generally, EDS interferes with normal activities on a daily basis, whether or not patients have sufficient sleep at night. People with EDS describe it as a persistent sense of mental cloudiness, a lack of energy, a depressed mood, or extreme exhaustion. Many find that they have great difficulty maintaining their concentration while at school or work. Some experience memory lapses. Many find it nearly impossible to stay alert in passive situations, as when listening to lectures or watching television. People tend to awaken from such unavoidable sleeps feeling refreshed and finding that their feelings of drowsiness and fatigue subside for an hour or two.

You can find a lot more information here.


The part that I have highlighted is my husband to a tee! In December 2006 Mike had a sleep test done because we thought for sure he was suffering from sleep apnea. I have two brother-in-law's that have sleep apnea and both, in separate conversations, urged Mike to have the test done out of their concern for him. The test indicated that he showed with narcoleptic tendencies in one out of the four tests. He also had a blood test done because now they can diagnosis narcolepsy through genetic testing. His results came back confirming what we already knew. Just as with any other disease or disorder there are varying levels and degrees. I am sure there are many who suffer much more than Mike. But even in a "milder" case, he struggles so very much.

I do not think too many people really understand how much he truly suffers. Mike would/will come home from work and fall asleep on the couch before changing his clothes or even eating dinner (which 9 times out of 10 is already ready when he gets home). The above pictures were taking this past week when, again, he came home and crashed. This tends to happen in cycles without any reason. There is no rhyme or reason to these cycles. He will do good for a few weeks and then really suffer for a few weeks. I worry about him. He falls asleep so easily. He has told me stories of falling asleep on the riding mower at work and how he woke up only after hitting a headstone. Or falling asleep while waiting to work a funeral service. Or telling me about when we were dating and he was driving home, he woke up on Mahoning Ave. just before slamming right into a motorcycle that was stopped at a red light. Yea. It's scary. But we are doing our best to find him help. Unfortunatly there is no cure all drug that he can take to make it better. There is one FDA approved drug but even with our insurance it's pretty expensive, enough so that we can not afford it right now. We are trying every natural outlet possible. Today he received vitamins that he was able to customize to his needs, included both narcolepsy and OCD. I hope that it helps, but I'm unsure. Researched as told both of us that even with natural help it's does not completely take away the fatigue.

Prayer. Lots of prayer from this wife! Every morning I am praying that God's protection be over him. I pray for healing so that he no longer feels as though he has no time because it is all eaten up by sleep and/or fatigue. Prayer that he can feel as though he is fulfilled. I love my husband more than words could ever express and I long for the day he is "himself" again.