KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Narcolepsy can be an embarrassing disease – like the time I fell asleep at work while talking to a vendor – I then started talking to the vendor about what was happening in my dream. As the vendors’ confusion became apparent I woke in a panic and tried to cover it up by pretending I was speaking to someone else.
Narcoleptics don’t go through the normal stages of sleep and instead go immediately into stage 3 or REM sleep and they completely miss, or get very little of the stage 4 or deep sleep needed to feel rested. When you go from awake to stage 3 sleep it is called a hypnagogic hallucination like the one I describe above – the dream state happens immediately upon falling asleep. This also results in extreme exhaustion. I once heard it described that if you want to know what it is like to live with narcolepsy, go 3 days without sleep and then try to function. Try to read a book, or pay attention in school or get to work on time. Because even though you are sleeping all night the narcoleptic is missing the deep sleep one needs in order to feel completely rested. Narcolepsy is also a very misunderstood disease. The person who has it looks fine, so most undiagnosed narcoleptics will be thought of as lazy. Since there is a huge lag time between the onset of the disease and official diagnosis most narcoleptics have a low self esteem. It started for me as a teenager. Yes, it’s normal for a teenager to fall asleep in class, right? I did it all the time and nobody thought anything of it; certainly not me. I had a really hard time getting up in the morning, too. As I progressed into my twenties or thirties though, it was not so amusing to fall asleep at work, be late for work and have to pull over on the side of the highway to nap for a few minutes. I had three alarm clocks placed around the room set to go off in five minute intervals. I would constantly berate myself for not being able to get up or stay awake. I viewed it as a personal weakness.
Narcolepsy takes it toll on personal relationships because we all know what it is like to be tired and everyone routinely sucks it up and gets through their day. But the absolute bone weariness and mind fog of narcolepsy can not be explained. It mimics depression. I spent six years trying antidepressants and they never worked and it’s because I wasn’t depressed, I was exhausted. It’s very difficult to be happy or to look on the bright side when you’re tired all the time. Partners don’t understand – it was difficult for me to understand before I was diagnosed. It didn’t matter if I slept 6 hours, 8 hours, or 12 hours, I was still tired. Some narcoleptics have cataplexy, which is a sudden loss of muscle tone usually brought on by a strong emotion. I do not have cataplexy, although if I did it probably wouldn’t have taken so long to get diagnosed. I went for a sleep study in 1998, but they said I didn’t fall asleep fast enough on my naps the next day to get a diagnosis of narcolepsy. They did diagnose me with severe restless legs syndrome; gave me some anti-seizure medication and sent me on my way.
Side note to my diary on narcolepsy – in 2003, at the age of 32, I suffered a stroke. Most likely it was brought on by the use of birth control pills, smoking and having a family history of protein c or s disorder. These proteins help prevent blood clots, so when you have a lack of them it can be dangerous. I won’t turn this into what happened with my stroke as that is a whole different diary, but it was the neurologist I saw after the stroke who finally diagnosed the narcolepsy and changed my life. One year after the stroke Dr. M. did a 24 hour eeg and from the results of that was able to give me definitive diagnosis of narcolepsy. Dr. M. then told me about Xyrem and wanted me to try it. Xyrem is sodium oxybate or another name for it is GHB; the street drug, so it is highly regulated. It took months to get to the right dosage of Xyrem, but once I got there it was a whole new life for me. I wake in the morning and have energy, I can go all day without taking a nap, I can drive long distances without having to pull over and I can focus, concentrate, read a book again. It was a miracle for me. I went back to school and finished my bachelor’s degree; improved at work and weight just started falling off. There seems to be a correlation between narcolepsy and weight gain. Narcolepsy is an auto-immune disorder because at some point the body attacked the hypocretin cells of the brain – this section of the brain also regulates food intake and body temperature. Plus, when you are tired you tend to self-medicate with food – your body thinks it needs energy when it really just needs deep sleep.
The cost of Xyrem is astronomical – about $3500 per month. I was lucky I worked for a great company and had top of the line insurance when I was first diagnosed, so it was not a problem. Now that I’m unemployed and without insurance it’s been more difficult. I want to ask the Republicans how I’m supposed to buy private insurance when I have narcolepsy and had a stroke. There is not one for profit insurance company that will ever voluntarily insure me. The makers of Xyrem do have a program called patient assistance where they will send you medication for free if you can’t afford it. I am very grateful for this program.
In 2009 my 15 year old son had all of the symptoms I did, so I took him to a sleep lab where he also received a diagnosis of narcolepsy. I cried. They were sad tears because he has the same awful disease I do and they were happy tears because my son didn’t have to go through years and years of thinking he was lazy, unmotivated, etc., like I did.
Within the last two years I discovered that a gluten free diet helps with the narcolepsy and has completely stopped my restless legs. My son, who is not on any medication (long story) said the gluten free diet helped him also, but he was unable to stick with it.
Narcolepsy can be a debilitating disease, but with the right medication a manageable one.