I have seen a lot of posts regarding questions about cataplexy; what it is, what it isn't, could I have it, etc.
So my goal in this topic is to help those with these questions. I am not a doctor, and I can only speak of my experiences and give resources i have personally encountered. So I would love if others would add to this thread so that we can help others who may have questions about it.
So, what is Cataplexy?
"Cataplexy is an abrupt but temporary loss of muscle tone or strength that results in the inability to move and always occurs during wakefulness. Symptoms of excessive daytime sleepiness may be present for years before symptoms of cataplexy develop. About two thirds of patients with Narcolepsy have Cataplexy. The following events may be triggers for cataplexy:
- Sudden intense emotion, such as laughter or anger (most common trigger - and most commonly defined trigger)
- A heavy meal
During severe cataplexy attacks, muscle reflexes are completely absent during a cataplectic attack." Note: A person may appear to be asleep during these severe attacks, especially if the attack is prolonged. "Cataplectic attacks can be very minimal and appear as passing weakness or affecting only the eyelids and face." Note: Minimal attacks can affect any small group of muscles, neck, face, arms, legs, knees, etc. "They may, on the other hand, be so severe that they weaken the whole body. In the most secvere form of cataplexy, attacks can recur repeatedly for hours, or even days." Note: My interpretation of this, is not that they are saying persons with cataplexy may have a loss of muscle tone for days, but that attacks can repeatedly occur, severely or minimally, over the course of days. "Abrupt withdrawal from certain drugs used to treat narcolepsy, notably clomipramine, can trigger these severe symptoms.
Cataplexy may have the following characteristics:
- Most attacks last fewer than 30 seconds and can be missed by even skilled observers. However, in severe cases, a person may fall and remain paralyzed for as long as several minutes.
- Typically the patient's head will suddenly fall forward, the jaw becomes slack, and the knees will buckle. Note: Again, this may not be the case for everyone. Personally, my head never abruptly falls forward, rather it kind of bobs, or slowly falls toward my chest.
- Speech may become suddenly loud or broken and stutter-like. Note: Many on the forums here have mentioned slurring of the words as well. These may not always be attributed to cataplexy though, they can also be attributed to EDS, when a person is very tired and sleep deprived (as many with N are).
What it isn't
Cataplexy is not a disorder in itself. There may be rare cases of it, where it is not attributed to Narcolepsy. However, the majority of people who experience Cataplexy, have Narcolepsy. It is one of those rare symptoms that can only be attributed to one thing: Narcolepsy. This may be because of the pathophysiology. Cataplexy, like most N symptoms, is the body's inability to regulate sleep-wake cycles properly. When you are in REM sleep, your body 'paralyzes' your muscles so that you cannot move (some believe it is so you don't act our your dreams.) During cataplexy, the body is getting signals mixed up and mistakes wakefulness for REM, thus paralyzing the muscles temporarily.
Cataplexy is not a person abruptly falling asleep. I think this is where the media got mixed up. Movies or book often portray PWNs as falling asleep without warning, doing everyday activities like talking or walking. As PWNs know, this is not usually the case. We have some warning, and EDS generally comes on strongest during periods of inactivity. But, Cataplexy, does appear, in it's typical or severe form, to be a person suddenly falling asleep. They can be talking and bam, they're on the ground, eyes shut and unable to respond. But, they are not asleep. They are completely conscious and can hear and feel their surroundings, but their muscles are not responding.
Things to Consider
Could you have cataplexy? Sometimes, the answer is obvious, while other times, people are not so sure. Doctors are sometimes wary of giving the diagnosis of N w/C because there is no way to know unless it is seen. They cannot take a blood sample and tell you that yes, the results say you have cataplexy. Other Doctors only know the textbook definition. If you don't fit it, well obviously you can't have it. It's important to be your own advocate here, and to ask as many questions as possible. If your Doctor doesn't listen, you have a problem.
Medications. This is something I only thought of recently, when wondering why I don't remember Cataplexy up until a few years ago. I have a mild case, I have only ever fallen once, and the attacks don't last very long. I have never experienced full body paralysis from Cataplexy. But, I do experience weakness in my neck, face, arms, and knees. I have also have the repeatedly occuring cataplexy over a few days. Though, they were mild cases, eventually they led up to my falling down some stairs (my knee buckled, I fell on my butt). But, I was diagnosed with Depression when I was 13. They put be on antidepressants, which I took on and off. I took them consistently for about 4 years though (from age 15-18). I never noticed cataplexy until I was about 20. But then I did some research, and anti-depressants are a common treatment for Cataplexy. Whether I may have had it and was unknowingly treating it, is impossible to know. But it is an interesting idea.
It's important to remember that many with Narcolepsy go years before diagnosis, and through that time many are misdiagnosed with various illnesses. Those without cataplexy, or milder cases of it, are often diagnosed with illnesses that relate to fatigue or chronic tiredness, like depression, chronic fatigue, anemia, etc. While those who have severe cataplexy, or experience hypnagogic hallucinations often, may be misdiagnosed with schizophrenia, epilepsy, or other seizure disorders.
Medications for all of these may interfere with the presence of cataplexy, but especially SSRI's. Which may be prescribed for any number of things like depression, anxiety or mood disorders.
How emotional are you? Since strong, intense emotions are often the main trigger for cataplectic attacks, those who are emotionally distant or do not experience emotion often, may not notice cataplexy. I think that to some degree, this might be me. I wouldn't say I'm completely unemotional, but I do reserve freedom of emotional expression for times when I feel comfortable. I was in an especially happy and goofy mood those few days when I experienced repeated occurances of cataplexy.
So, that is what I've got. I hope that some might find it helpful, and I encourage others to share information, or correct me if I made a mistake. Again, I can only work from my own perspective here! So please help me to create a place where others can find information regarding cataplexy and what it entails. There is a specific forum for cataplexy times here on the message boards, so if you haven't, check it out too! I put this here as I have noticed an influx in questions. Not that I am discouraging anyone from posting their own questions, but that this is here for anyone who might want to look around before asking.