When sleep becomes a dream: my struggle with narcolepsy

When I came to my senses, I saw myself driving on the wrong side of the road that ran along the beach, heading straight for me. Surprised, I pulled the wheel back to the right lane but still lined myself up with a telephone pole. My brain tried so hard to fix what was going on that I knew the boxes wouldn’t save me. The quick shots of my mom, my dad, my dog ​​- and then a ball of fire imagined from close range – ran through my head. When I tied the pole, the airbag was opened, but luckily, there were no bullets. Trembling, I fell out of the car, sat on the rock, and wondered if I should stop driving forever.

During the fall, I had a variety of sleep deprivations during the day, attacks ranging from short nod-offs to full sleep, for about 2 years. This isn’t my first car crash, but it’s the most horrible one.

Two weeks later, I went out of town for a walk with my friend CJ, a doctor (don’t worry, he was driving). He demanded that I see a sleep specialist, stat. I pushed back. I went to my primary care doctor, I explained, and he thought I was going to work hard. My doctor suggested other things – Epstein -Barr, sadly – but he said I might have to go to bed first.

I told CJ that if my doctor wasn’t scared, I shouldn’t, despite other evidence. The next thing I remember is CJ calling my name. I looked and he shook his head. “You see the irony, don’t you?” he asked. “You slept from narcolepsy and told me you didn’t have narcolepsy.”

Education about sleep

The next week, I went to a sleep clinic and rested at night with electrodes attached to my head and a heart rate attached to my chest, performing a test called a polysomnogram (PSM). ), which measured my critical symptoms, brain waves, and movements. . This was followed, after breakfast, by the Obstetrics and Gynecology test (MSLT), when I fell asleep every 2 hours of the day and the same information was recorded.

After these trials, my new doctor gave me the disease that CJ had predicted and, in fact, I doubted and resisted: narcolepsy. I was one of 250,000 cases reported in the US, about 1 in 2,000 people. Some experts, counting underreporting and underdiagnosis, estimate the actual number to be close to 500,000.

“Some doctors aren’t educated about how they should be,” said Emmanuel Mignot, MD, PhD, director of the Stanford Center for Narcolepsy. “But it’s not just doctors who are missing the symptoms. It’s also the patient who isn’t telling.

Narcolepsy can be fun, as I wrote to a friend. “dandifies ino s. aha! flight 1pm. tbkuhht of Margery. ” But when you send bad language to people – especially to co -workers – it’s not a joke. Narcolepsy can be embarrassing, like the two times I nodded in days, or the time I slept on the playground at the gym. I missed a lot of episodes of movies and a lot of train stations. My sleep patterns are not comfortable at all. They cause dizziness, discombobulation, and fatigue.

Although I was the advocate for the patient’s denial, I had a physical fear of nodding at work. To avoid the best possible microsleep, I bite my finger hard, sometimes breaking the skin. When every minute of every day is disturbed by the fear that you might embarrass yourself, hurt your business, or hurt yourself or someone else, you begin to think of becoming a relaxing. And bullying people with narcolepsy to be lazy, or not staying up all night, doesn’t help.

Narcolepsy’s Nasty Companion

If left untreated, narcolepsy can put you down socially and professionally, not to mention damaging your mental health. In my case, narcolepsy exacerbated a preexisting condition: anxiety. Ever since I woke up, I had been sick of falling asleep at the wrong times. I increased my strength and brain throughout the day, watching myself for symptoms of sleep disturbances. I always experienced high alertness, and I was mentally and physically exhausted.

Anxiety became a bad partner for narcolepsy, part of the First World War. I often fell early in the morning, fell asleep after the heavy sun and demanded four breaths to wake up. My days with me began with fog and trembling. I’m not surprised that people who have had the disease for years have had lower incomes and lower living standards than the general population. It cannot be continued.

As sleep took over, so did its nature. Many people develop narcolepsy in their younger years or 20s. I was diagnosed when I was 40, and the cause, at least in my case, is unknown, according to the Mayo Clinic. Researchers like Mignot think they may have broken the code, suggesting a link between narcolepsy and low levels of hypocretin, which helps regulate alertness. Hypocretin deficiency may be due to an autoimmune effect, but it can be the cause of predisposition in our genes. Narcolepsy can be triggered by an illness, other illness, or inflammation, but in most cases, doctors are unable to pinpoint the exact cause.

While there is no cure for narcolepsy, many medications – including stimulants such as amphetamines, which have been used for nearly 100 years, as well as the new armodafinil (Nuvigil) and modafinil (Provigil) – are possible. reducing its symptoms. Amphetamines can stimulate the brain, and new ones are beneficial.

Hope on the Horizon

Even without a coin toss, there is a sense of well -being for the growth of knowledge of nature. For starters, Mignot knows how to improve the disease. “Over the next 5 to 10 years, it will be possible to keep people at home to see if they have narcolepsy,” he says, “and to keep track of brain activity in the day to see if people have this kind of microsleep. and see what their cognition is. “

On the medical side, a stream of drugs that act on cell receptors is being built over time. The best but difficult result is to replace the hypocretin that is depleted in the formula. To study this, the researchers are using local “pumps” in the mice. Mignot also sees the potential of using stem cells to fight inflammation.

Now, I think myself lucky. My medication, armodafinil, is working, even though my insurance is not fully covered. Sometimes, I take medication, flying one day on the weekend, or during long -term flights, to take care of myself. I put out another pill while I was driving and I haven’t faced a phone pole in years. On my doctor’s advice, I set my “locked up” hours, slept well from 10:30 pm to 6pm and woke up to rest. While I get lapses sometimes when I nod on the phone, send an incomprehensible text, or sit down and wake up 15 minutes later, I’m open about it. them. My way of saying that one should not live under the stigma of a disease, much less an ignorance like narcolepsy.

A lot has changed since that life -changing car with CJ soon after I rode with a phone pole. I am thankful that he pushed me away before I refused and was ashamed of my position and turned me to see a professional. And I appreciate Uber too.

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