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Carol Bell
Carol Bell, 67, has a condition called cataplexy --it's a sleep disorder that causes temporary paralysis, and it's brought on by a particular emotion or feeling. In Bell's case, it's laughter.
It would probably be best for Carol Bell if you didn't say anything clever when speaking to her. Your sharp wit could temporarily paralyze her.
The 67-year-old has a sleep disorder called cataplexy, which is a symptom of narcolepsy. (In other words, if you have narcolepsy, you don't necessarily have cataplexy. But if you have cataplexy, you definitely have narcolepsy.) For people with this condition, feeling a particular emotion causes them to briefly lose control of their muscles. For a few minutes, they're unable to move, although they're still conscious.
“People always ask me what it feels like,” says Bell, who lives in Edina, Minn., a suburb of Minneapolis. “I finally came up with an analogy: It’s like I’m a marionette. When the strings are cut, the marionette falls to the stage. And that’s exactly what it feels like. You no longer have control over your voluntary muscles.”
During the REM stage of sleep, our muscles are essentially paralyzed. "That's a good thing -- we probably don't really want to act out our dreams," explains Dr. Michel Cramer Bornemann, a medical director at the Hennepin County Medical Center in Minneapolis, Minn. (Bornemann works at the sleep center where Bell is treated, although she is not a patient of his.) He explains that although the neurological mechanisms aren't totally understood, in patients with cataplexy, a particularly strong feeling appears to trigger that REM muscle paralysis when they're awake.
Bornemann asked me what I thought was the emotion most likely to trigger a "drop attack." I figured it would be something strong or even visceral, so I guessed anger. Nope. It's laughter -- specifically, laughter caused by telling your own joke.
For Bell, it's one-liners in conversations that do her in. When she first discovered she had cataplexy, she says, "I avoided social situations for a while. I was fearful of going places where I wasn't well known," Bell says. Now, her circle of friends is smaller than it once was, but they're all used to her occasional collapses. They'll sometimes continue their game of cards over her temporarily frozen figure. "The standard line is, 'Get a chair! She’s going down!'"
As she puts it, “You have to make a decision: Do you spend the rest of your life isolated, staying out of situations that might make you laugh and cause you to tip over?”
Bornemann has more stories of patients with cataplexy that are too fascinating to leave unshared:
- A septuagenarian who can't make it to the punch line of a joke without collapsing.
- A woman who is so overcome with emotion when holding her grandchild that her arms freeze. She’s come close to dropping the baby, but never has, and now that she and her family are aware of her condition, they're able to work around it.
- The same woman, when she opens her front door to find a door-to-door salesperson, almost instantly tips over.
- A man in his 60s who came face-to-face with a black bear in his backyard – the man fell over on his front porch, literally paralyzed by fear. (By the time he regained control of his body, the bear was gone. They do say to “play dead.”)
- A man who freezes when he catches a fish.
- A man who goes weak at the knees every time he sees a stray coin on the sidewalk.
Does anything make you go weak in the knees? Tell us in the comments.
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Thank you for this article! I have cataplexy and narcolepsy. Though laughter is not a trigger for my 'cat' attacks, I fully relate to Ms. Bell. Her positive attitude and the positive light of this article are fantastic! Even w/a strange and sometimes dangerous condition, you have to simply keep living (and laughing!)
As part of my training, my grandfather used to hit me with a twitcher's pole everytime I spilled the smallest amount of liquid on the carpet. Although he meant well, I realize now that his methods were harsh. Anyway, during performances, I used to become completely paralyzed. While this provided me with somewhat of an advantage, it started to become much too dangerous as I got older and my stamina decreased during the step-through. As you can imagine, I had to quit live performances, and I recently had to quit recorded performances as well. Through conseling I came to understand that my paralysis was due to the emotional torture inflicted on me from an early age.
I have had a condition since I was little that whenever I told a joke or a one line zinger on/to my friends that we all laughed about, I would get really weak in the knees and my whole body feels like I have temporarily lost control of it. My groin area tingles like when you hand or foot goes to sleep also. It only lasts for a few seconds and I have never lost conciousness but am now wondering if it is similiar to or related to cataplexy. I am 41 now and it still happens several times a year but only with laughter. Very interesting.
I have a condition known as "vaso-vascular syncope" which mean the vagus nerve that runs down my center/core gets squeezed when I laugh or cough hard. This stops my heart momentarily and down I go. Probably from years of coughing type of asthma. So, I guess friends and loved ones need to know that "laughter can be the best medicine" or it can "take you out!"
The body is indeed an odd thing!
When I hear Darth Vader say "I am your father" in The Empire Strikes Back, I get weak in the knees and feel a chill up my spine.
When I was around 25 or so, we had a small fire start in the hot water heater in my house. As I had two small children, I immediately took them and went to run them across the street to my parents house so I could try to go back and help with the fire. As I reached the halfway point across my yard, I collapsed in my knees. I tried over and over to get up but couldn't for about three minutes. I just sat and held on to them. My husband came out before I could make it across the street and told me the flames were out. I am 53 now and I can say that I live in fear that it would happen to me again if I ever got that frightened.
I have narcolepsy. I didn't think I had cataplexy for many years, because I didn't lose control and fall over. I am on medicine now call Xyrem, which helps me sleep better at night. When I had to go off Xyrem due to insurance for a couple of weeks, I noticed that if I laughed or got scared, I felt goosefleshy tingly going from left to right through my body. So I guess I do have a very mild form of cat. I also had a nervous tic in my eyebrow for years. It went away when I went on Xyrem. It also came back when I had to go off of Xyrem for those two weeks.
This happened to my brother all through childhood. We never new what it was, but it happpened just like she describes, usually when he was trying to say something that HE thought was funny. He says that it can still happen to this day, he's now 54, but not as often, and that he can somewhat control it. We always worried about his safety when he became an adult and worked in construction. Over the years we read many articles that lead us to believe it was some form of narcolepsy. Nice to know there's a true name for it. Who knew?
I used to fall down when I got really upset. After years of being told it was all in my head or that I was faking and even being treated punitively for it, I was finally told by a neurologist that it was likely cataplexy.
My grandpa had a friend when he was a teenager who had this exactly. The boy's friends would purposely make him laugh, which he himself thought was hysterical. My grandpa told me that he would always try to tell jokes, but it took forever because they would have to wait for him to "wake up" several times as he would try to tell the joke. Apparently, had a great sense of humor and never let his condition stop him!
That rocks! I've always wondered what it'd be like to be have cataplexy a few generations back when people didn't know about it. Good for that guy!
Misdiagnosis as "unresponsive general depression" takes in a great number of despondent sufferers, who are judged by "normal" people's ignorance.
The parade of doctors, who can be very combative and accusatory because we dont seem to be trying hard enough; employers who are a blur as we spiral into life-long failure; the ruin of relationships and abandonment by loved ones whose care-giving and understanding are exhausted; and the helpless feeling that this just gets worse --
All contribute to the real deadly danger: suicide.
I wasn't diagnosed with narcolepsy till I was in my 40's! I just thought I was lazy. Surprise is what makes me go weak in the knees. Anything unexpected. I came home from work one day and my husband told me that he had replaced the furnace; something he had been promising for years. I hit the floor. Good news or bad, if its surprising, my knees give out on me.
I always wondered why, anytime I got really angry I would drop down on the floor with a complete lost of leg support as they would simple give out, I was told it was cat. from my neuro as well as having sleep attacks during the day, but not the one's you hear about so much like dropping fast asleep but more like the turning of a knob and with in so much time I would have to go to sleep, anywhere from 1 to 3 hours twice a day and everyone thought I was just lazy till my neuro dx me with narcolepsy.
If I ever had the occasion to drive someplace with this woman, I'd definitely be the one behind the wheel - that much is certain.
Some people with cataplexy drive or even fly planes. I sure don't 'cause I laugh too much and fear collapsing...
I'm grateful for an article that helps explain this unusual condition. My 9year old son has cataplexy, but contrary to the information in this article, he does NOT have narcolepsy. His attacks began happening when he was a toddler. He, too, collapses completely when he laughs. It is a sort of momentary paralysis that continues as long as he is laughing. He is being treated with a low dose of Fluxetine (Prozac), which keeps his "cat" attacks under control (unless he is very tired or very stressed). I look forward to the day when we know more about this condition.
Yep that sounds like cataplexy. Someone with narcolepsy has one or any combination of a set of symptoms. Even though your son only exhibits cataplexy, he probably still has narcolepsy. Some children manifest symptoms, some develop it in adolescence like myself, and some develop it later. Also, people can sometimes develop the another symptom years and years after the first one became apparent.
Cataplexy can be reduced with antidepressants, often. Xyrem, too, but that's probably more for adults.
More and more is being discovered about narcolepsy and cataplexy, actually. There's a resource online (http://www.facebook.com/pages/Cataplexy/127033218212?ref=ts) that's really quite helpful for info... links and all are posted there, too. If that address doesn't work, google "cataplexy facebook".
Best wishes to the little guy!
If your son has cataplexy, he also has narcolepsy! Cataplexy is only associated with narcolepsy, with one other exception, so unless your son is Jewish and has an even rarer disorder, he has narcolepsy. I don't know how old your son is, but the other symptoms of narcolepsy may present later in his teens. Young children do not always fall asleep during the onset of symptoms, they may just seem to day dream or have attention deficit's.
I am so glad that I know this is real. I do not have this to the extent that the woman in the article does, but I have always become extremely weak when overcome with laughter. When I was in elementary school, my friends and I were sitting on the jungle gym and laughing at something. I became so weak that I couldn't hold on and I fell from the very top. I can't hold anything in my hands when I am laughing or my grip becomes so weak I will drop whatever it is. I have always thought there was something wrong with me.
Indie&Bellas' description sounds like something I have dealt with all my life, I haven't dropped anything or fallen I just can't finish the task I start. I will try to open a jar or something using my hands and if I happen to be laughing heavily my hands and wrists get weak and I have no strength and can't finish what I am doing. Someone usually has to do it for me. It seems that I have assumed something right about it, it is an idiosyncracy I will have to live with and still laugh about when I can't open a jar and laugh even harder at myself because 'I' can't open that damn jar!!!!!!
I am really glad for this article and growing public awareness. We see that the huge majority of adults diagnosed with narcolepsy and cataplexy, are misdiagnosed, incorrectly medicated, overlooked and disbelieved until quite late in life. The norm for diagnosis (as of about 2004) was about 15 years.
Now with greater awareness, many more children and teens are being recognized early, and their rate of successful management, and their chances for success in life are much better.
maybe its just really bad jokes putting her to sleep. just saying.
Jokes are sometimes so bad that they induce cataplexy, it's true. Or if I feel bad that I'm not laughing at a joke I could fake a cataplectic attack. It's much easier than a fake laugh because they can't see my face. Haha :)
P.S. She doesn't fall asleep; she's conscious the whole time. Just to clear that up.
I have cataplexy/narcolepsy too. And positivity IS the best way to get through it... after all- it's from laughter that I fall- so my emotion was so great that it made me fall. When it's a negative emotion, it's different, but when I laugh, I just laugh differently than other folks. I agree- living and laughing helps immensely.
I've started a cataplexy support group on facebook. To my knowledge, it's the only cataplexy support group on the internet. I'm 17, and I think I'm the youngest person on the page with cataplexy. You can access it without having a facebook, you just can't post. This link should work:
http://www.facebook.com/pages/Cataplexy/127033218212?ref=ts
If not, google "cataplexy facebook" and you should get the link. It's helped exponentially to know I can relate to other people.
I'm really happy this article exists.
Anyone who thinks they have Narcolepsy with or without Cataplexy should go to the Narcolepsy Network website as well as getting ahold of your doctor and getting tested for Narcolepsy with an MSLT daytime sleep study. The Narcolepsy Network has an annual conference: each year in a different place. around the U.S. This year was Arlington, VA, just outside of Washington D.C. Next year will be Las Vegas, NV. The leading doctors and research is presented as well as other necessary support. You will find the support you need from the only people that understand what is happening. Nothing is more powerful than proper information as well as acceptance and support. I am currently still in Washington D.C. after this year's conference just ended yesterday. It is extremely important to join the proper group that will make sure you all are not receiving misleading information. Narcolepsy/Cataplexy is hard enough without being misinformed by those who mean well. Not all people have the same exact symptoms, nor do they respond the same to identical treatments. I urge you to not try to diagnose yourself, seek professional help, but also know your own body and advocate for your health as some neurologists are not well-versed on this condition.
Sometimes when I tell a joke, one of my knees would feel as if it was going to buckle under me. I never even thought about why it happened. It was when I delivered the punch line and people started to laugh. I also feel weak for a split second when this happens. Who knew?
Having Narcolepsy is not easy. Having cataplexy is like hanging 50# around your neck, falling in the water 100 yards from shore, and you can't swim.
Comments by people who do not know what they are talking about, adds to the suffering. With the research available now, cute comments like bs detector are not appropriate, and are showing ignorance.
I'm a 61 year old narcoleptic with cataplexy. It is not an easy disorder to live with and our normalcy is far from those that live without narcolepsy. Every part of our day has to be planned, depending on how we feel for that day. Naps are a basic necessity. Making decisions regarding education, particularly what time of day are your classes, do I drive or not, do I dare socialize in groups, because falling asleep in public or having a cataplexy attack to the ground can be embarrassing.
I'm just greatful that articles like this brings awareness to the public domain. My mission has been to educate school nurses and counselors, family and friends about this disorder. My diagnosis came some thirty years after the onset of symptoms. Young children need to be diagnosed early to help them in school and social situations before they become reclusive and lack self esteam. Regular primary care physicians need to become familiar with the symptoms, so that misdiagnosis doesn't add to the stress of this disorder.
"so unless your son is Jewish and has an even rarer disorder, he has narcolepsy."
I know nothing about any of these conditions but just out of curiosity what does being Jewish have to do with anything? Can you have a condition that is ONLY related to your religion? Not trying to be a smart a** but it makes no sense to me that it could be something else IF he is Jewish.
I know of one disorder that mainly affects ethnic Jewish people; it has nothing to do with religion but is genetic. (Tay Sach's sp?)
I don't know the specific genetic cause for the condition mentioned above, but I can speak to the concept they are referring to. Being Jewish is more than just a religious affiliation. There are several specific genetic disorders that are more common in the Jewish population primarily because the Jewish community has for hundreds of generations been a fairly closed community -- people tend to marry within the group. When this happens, certain genetic conditions can become more prevalent due to the closed genetic pool. Tay-Sachs is a much more commonly known disorder that is more common in Jewish populations. It does not ONLY exist among Eastern European Jews, but it is much, much more common. This phenomenon is not limited to Jewish populations, by the way. Any time a group has limited marriage partners, they run the risk of increased frequency of genetic disorders. Look at the European Royal families of the 18 and 19 centuries. There is a reason that so many of the royals across the continent suffered from genetic disorders like hemophilia. There are also increased incidents of dwarfism in Amish communities. And just to clarify, this should not necessarily be confused with an accusation of in-breeding. We are talking about decent sized populations interacting over hundreds of years. Marrying a distant or even close relative does not "cause" genetic mutations and you certainly do not have to marry a culturally defined relative (within a known degree of generational separation) to both carry a recessive gene that can be passed on to children. But when the overall gene pool is reduced due to selective marriage practices, the incidents of such genetic disorders will increase, if those genes are a part of that gene pool to begin with. Hence, it is certainly possible that there might be a disorder with similar symptoms present more commonly in Jewish populations, as asserted above.
Where's the video? This ought to be funny!