Living With a Narcoleptic
It was approximately 1983 when my husband, Bruce, found out he had narcolepsy. Neither of us knew much about the disorder. Before being diagnosed, he thought he was having a breakdown or dealing with a tumor.
He had to have a CT scan first to reassure him it was not a tumor. His doctor then referred his case to a neurologist. The neurologist, after talking with Bruce about his symptoms, gave him a medical textbook that included a description of narcolepsy. Bruce indicated that this was exactly what was happening to him. My husband had a "textbook" case of it. As time went on, we found out that he had a very severe case with all the, excuse the phrase, "bells and whistles." However, only after a sleep study was he officially diagnosed with narcolepsy. He also had sleep apnea.
What Is Narcolepsy?
Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. Severe cases of narcolepsy may include the following:
- an extreme physical reaction to emotions (anger, humor)
- sleep paralysis
- sleep apnea
- cataplexy or loss of muscle tonus (the steady reflex contraction that resides in the muscles concerned in maintaining erect posture)
- excessive daytime sleepiness (EDS)
- extreme dreaming and/or vivid hallucinations.
Based on my husband's experience and my observation, it was not clear if his hallucinations were caused by dreaming (or due to it) or by the medications taken to treat the disorder
Not getting enough sleep can contribute to insomnia. Taking your medication too late in the day throws everything off. Bruce was a night person and loved staying up. It was hard for him to unwind. Sometimes he would take a "drug" holiday. If he wasn't going to be doing much on a weekend, he would stop Friday and sleep through a good part of the weekend to catch up.
Rapid eye movement (REM) and non-rapid eye movement (NREM) comes into play. The Mayo Clinic offers some great information on REM sleep and its importance.
Is There a Cure?
There is no cure for narcolepsy, and it still isn't really clear what causes it. It has been only recently that researchers suspect that those who have narcolepsy may be missing a chemical hypocretin, which can cause an autoimmune disorder within the brain.
Many people who acquire it, do so at an early age, usually within their teens. Bruce was about 46 when he first acquired the symptoms. The very onset of problems was trying to stay awake while driving. It got to the point that he needed black coffee while driving, the window down or he mentioned, a couple of occasions he would slap his leg to stay awake. He thought it was just being overly tired or possibly stress. '
He also had episodes of light patterns in front of his eyes. What finally sent him to the doctor was this: He was driving to a job around the mid part of the day and by the time he got there, pulled into the parking lot and parked the car, he woke ten minutes later with his hand on the ignition key. He had got to the driveway, parked and fallen asleep. We thanked the Lord he did not have an accident!
If you suspect you have narcolepsy, please seek help. My husband could have easily had a car accident before he got help. It can be treated, and you can lead a productive life. Health professionals know a lot more today than they did when Bruce acquired it in the mid-eighties. Narcolepsy with cataplexy is estimated to affect about one in every 3,000 Americans (Narcolepsy Fact Sheet).
How Do You Treat Narcolepsy?
There are basically two things that can be done. Treat the quality of sleep and treat the condition with medication, to help the person stay awake when they need to be awake.
When it came to medication, Bruce was prescribed Ritalin (Methylphenidate). There are other medications and even though Bruce tried others, he always came back to Ritalin (known as a street drug). He did find that over the years of using the same drug, the level of effectiveness was falling away. He eventually had to keep increasing the dosage to get the same effect or the same lasting time span from the medication.
I was always thankful that Bruce was very careful with his meds. He never abused them and always kept to his schedule. Only at the very onset of the disorder did he have trouble adjusting to the medication. Once he got the right dose, he was fine.
Using a CPAP to His Treat Sleep Apnea
Bruce needed the CPAP machine to treat his sleep apnea. This can be more severe than narcolepsy as you can die from sleep apnea but not from narcolepsy itself. Treatment can be given with a continuous positive airway pressure (CPAP). The machine helps provide ventilation (breathing) therapy. You may have seen similar equipment in hospitals while giving oxygen treatments. However, Bruce's machine did not give out oxygen but provided pressure, which affects breathing during inhalation and/or during exhalation.
I have to say that he never got used to the machine and after a while, he would not use it. He mentioned that he felt like he was drowning when using it. They have better machines today; easier to wear and adapt to.
What Is Cataplexy?
Cataplexy is a sudden loss of muscle weakness while awake, resulting in the inability to move. Strong emotions, such as laughter or anger, will often bring on cataplexy. Most attacks last for less than 30 seconds. Your head will suddenly fall forward, your jaw will become slack, and your knees will buckle. In severe cases, a person may fall and stay paralyzed for as long as several minutes. (PubMed Health)
Bruce got to the point where he could feel one of these episodes coming on. If he was out, say at a public place, he would pinch himself on the arm to break the cycle. If I saw it occurring, which I became very aware of, I would help with a pinch, if he didn't get to it first.
What triggered many occurrences would be a strong emotion that could have been caused by Bruce or someone else. It usually would pass within a minute, but sometimes Bruce needed help letting a clerk know that he was alright and not having a heart attack or that he wasn't drunk. People, for the most part, were patient. But occasionally you would get someone who thought Bruce was drunk or being a smart ass (sometimes he was, and it would get him in trouble) and could not handle it very well. Remember, muscle weakness or the loss of ability to speak occurs. Trying to hand money to a clerk, in this condition, could be challenging to a narcoleptic.
How to Support Someone Who Has Narcolepsy
- I read as much as possible to be sure I understood the condition.
- I was always supportive, and we agreed that if he ever felt like he was going under, especially in public, I would slightly pinch his arm to break the sleepiness— mostly so he would not fall down. His case was so bad that he would lose muscle tonus (not everyone experiences this).
- I would suggest that if there is a support group in your area, you (and your spouse, if interested) should check it out.
- Mayo Clinic
Here is more information on symptoms, causes, and coping with narcolepsy.
- Narcolepsy Network
This is probably the best site on the Internet. You will find great resources and events.
- Sleep Disorders
Here is where you can learn more about cataplexy.
- American Sleep Association
The American Sleep Association (ASA) is a national organization focused on improving public awareness about sleep disorders and sleep health, promoting sleep medicine research, and providing a portal for communication between patients and physicians.
Did you know that dogs can have narcolepsy. I have added this video to give you a taste of it. With dogs, it appears that it can come on very quickly, especially given the high activity as shown in the video below.
Did You Know?
Dogs can have narcolepsy too. It appears that it can come on very quickly, especially when engaged in high activity.
What Is Your Experience With Narcolepsy?
I would be interested in hearing your story, especially if you have narcolepsy or know someone who does. What have been your experiences? If I can help anyone with any questions, I will be glad to do so. I am not a nurse or doctor, but I lived with this condition (it does affect other family members) for over 25 years before my husband passed away with lung cancer, due to smoking.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2011 Sandy Davison