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Living with a narcoleptic
Narcolepsy - Living With It
No it isn't related to epilepsy though they sound similar. I hope to inform with this lens. I do appreciate your visit and please feel free to leave comments.
It was approximately 1983 when my husband, Bruce, found out he had narcolepsy. Neither of us knew much about the disorder. Before Bruce was diagnosed, he thought he was having a breakdown or acquired a tumor. He had to have a cat scan first to reassure that he wasn't. His doctor referred his case to a neurologist. The neurologist, after talking with Bruce about his symptoms, gave him a medical text book with a description regarding narcolepsy. Bruce indicated that was exactly what was happening to him. My husband had a "text book" case of it. As time went by, we found it he had a very severe case with all the, excuse the phrase, "bells and whistles". However, only after a sleep study was he diagnosed 100% that he had narcolepsy. With Bruce, along came the sleep apnea.
Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. Severe cases of narcolepsy may include the following: having 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. However, on the last point, the vivid hallucinations, through my husband's experience and my observation, it is not clear if these hallucinations were caused by the dreaming (or due to it), or by the medications taken to treat the narcolepsy.
Bruce needed the CPAP machine to treat his sleep apnea. This can be more severe than the narcolepsy as you can die from sleep apnea but not from narcolepsy itself. I have to say that he never got use to the machine and after awhile would not use it. They have better machines today; easier to wear and adapt to.
Not getting enough sleep can contribute to insomnia. You can't sleep or you need to stay awake. Taking your meds to late in the day throws everything off. Bruce was a night person and loved staying up and it was hard 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 would sleep through a good part of the weekend to, catch up.
Rapid eye movement (REM) and non-rapid eye movement (NREM) comes in to play. Take a moment here, and go over to Mayo Clinic for information on REM sleep.
There is no cure for narcolepsy and it still isn't real clear what causes it. It has been only recently that they suspect that those who have narcolepsy may be missing a chemical (hypocretin) that causes 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 he 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!
I would be interesting in hearing your story, especially if you have narcolepsy or know someone who does. What has 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 effect other family members) for over 25 years before my husband passed away with lung cancer, due to smoking.
Narcolepsy is a sleep disorder not a disease
If you suspect you have narcolepsy, please seek help. My husband could have easily had an 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. At that time, there were only about 200,000 people known to have it (USA).
Narcolepsy with cataplexy is estimated to affect about one in every 3,000 Americans (Narcolepsy Fact Sheet).
There are basically two things that can be done. Treat the quality of sleep and treat the conditions with medication, to help the person stay awake when they need to be awake.
Treatment can be given with CPAP equipment or 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 effects the breathing during inhalation and/or during exhalation.
Treating with medication, in Bruce's situation, was with Ritalin (Methylphenidate). There are other medications; even though Bruce tried others, he always came back to Ritali (known as a street drug). He did find, that over the years of using the same drug, that 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, always kept to his schedule. Only on the very onset of the disorder did he have trouble adjusting to the medication. Once he got the right dose, he was fine.
He may be asleep, but he could hear most of what you were saying
Cataplexy is a sudden loss of muscle tone 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 and can be missed. 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. REF: PubMed Health
Bruce got to the point that 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 because very good at, I would help with a pinch, if he didn't or his wasn't working. What triggered many occurrences would be strong emotion, possible anger, humor....which 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, the loss of muscle tone or the loss of ability to speak occurs. Trying to hand money to a clerk, in this condition, could be challenging to a narcoleptic.
Linking Along The Network Highway
This reference links are very important and I hope anyone who needs information regarding narcolepsy will check them out. I will try to update them when possible.
- Mayo Clinic
Gives you the symptoms, causes, coping with Narcolepsy.
- Narcolepsy Network
This is probably the best site on the Internet. You will find great resources, upcoming events that relate, including their 26 annual convention in October.
- Sleep Disorders
You will learn about cataplexy and more.
- Sleep Apnea
Some general information and what can be done about snoring and apnea.
The other well know drug that treats narcolepsy.
- New Patents, New Drugs
- 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, physicians/hea
Resources that will help you know about narcolepsy.
Helping You To Understand
Challenges Of Narcolepsy
Bruce loved to bowl but stopped as he hurt his finger while falling with the ball..
Falling in the shower.
Walking, telling a joke, and starting to fall.
I'm on a train, but there's no one at the helm
And there's a demon at my brain
Who starts to over whelm whelm whelm whelm whelm
And there it goes, my last chance for peace
You lay me down but I get no release
And I say I, I try to keep awake
I try to swim beneath
I try to keep awake
But, I can feel this narcolepsy slide