What is Cataplexy?
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- čas přidán 4. 09. 2024
- Andy Berkowski, MD of ReLACS Health describes the unique symptom of cataplexy, the hallmark feature of narcolepsy type 1 (previously called narcolepsy with cataplexy, not coincidentally!). Cataplexy is poorly understood by medical clinicians and misidentification of symptoms often leads to misdiagnosis of this condition, in conjunction with the highly flawed MSLT to diagnose narcolepsy. It is crucial to know true cataplexy and investigate other causes of cataplexy mimics.
For more detailed information on sleep health and conditions like narcolepsy, read A ReLACSing Blog:
www.relacsheal...
These videos are for general information only, but for those who live in or near Michigan, Ohio, or Florida, you can hire @andyberkowskimd of ReLACS Health for consultation to assess whether you really have cataplexy or if you need a second opinion on the diagnosis of narcolepsy. This direct specialty care clinic takes a comprehensive approach to daytime drowsiness and can address any aspect of your sleep health that needs a little more time and expertise. Go to www.relacsheal... for more information.
Narcolepsy with cataplexy here. Triggered by any emotion; laughing, sadness, anger. My entire body is affected starting with my face. Collapse is usually inevitable. Feels like 10,000 volts are shooting thru me and i collapse like the world trade center, straight down. Eyes are closed and unable to move or speak, but i am aware of everything being said around me. Sometimes it lasts only 30 seconds, other times i go right into REM sleep for 15 or 20 minutes. If i hit a good golf shot, i collapse. If im fishing, my buddies usually have to reel in my fish because i collapse. Seems to me it has something to do with endorphins. Forced into early retirement and lost my drivers license. Anyone who thinks they might have cataplexy most likely dont. If you have it, you will know it. Effexor is my miracle drug for cataplexy. Since retired, i no longer need to fight the narcolepsy with xyrem and adderal, my body sleeps when it wants to, usually 4 or 5 short naps per day and night. Been 8 years now.
Thanks for describing your experience
I also take multiple naps a day to help stive off sleep attacks. I have not tried effexor yet, although my doctor mentioned it. Buproprion, Lexapro and Modafinil are the backbone of my regimen with some nootropics like n-acytyl-cystein and the herb Ashwaganda.
I have narcolepsy with cataplexy that is triggered with mostly happiness, laughter or something that is gratifying. I have fallen but for the most part try to steer clear of these things. I am currently being treated with medication for both. Thank you for a great explanation of what I have but so hard to explain.
Thanks for sharing, and sorry to hear about your symptoms but glad that you have found someone to treat you.
My triggers are when I feel assertive and feel as if I am speaking up for myself. Your def not alone
Do you take any medication that helps with the cataplexy, just curious because I do but just wondering if anything helps bc I worry more about the cataplexy than the narcolepsy?
thank you for this short, concise explanation that would stick with me forever
Great, happy to hear it was useful
No idea what I have then. Feels like an electric shock in my head, also get head spasms when people are looking in my eyes.
As mentioned in this video, cataplexy is temporary loss of muscle tone. There are no jolts, shocks, or muscle spasms, nothing painful. Generally, cataplexy is only seen in the rare condition narcolepsy type 1 and usually many other symptoms of narcolepsy will develop prior to or at the same time as cataplexy.
As a type 1 narcoleptic, this video does a very poor job characterizing cataplexy, especizlly while driving, standing, or mid setence. Some of us can go straight down for 3-5minutes with very low bp, hr, and electrical activity. I am a theraoist for young kids, they all get informed about my condition in the first session, including when to use and where is the panic button in my office.
Thats an accurate description. As a type 1 narcoleptic..cataplexy episodes differ majorly from sleep attacks aye. Cataplexy episodes are scary. Sleep attacks just disruptive. Thank you for spreading awareness 🙂 my sleep clinic doctor will see me in 30 weeks, and i hope they understand and support me well. Some stimulants would be nice, and pain management for after the cataplexy episodes. Although the muscles paralyse, i get some sort of emotional tension and some of my muscles get cramped up..and my head is buzzing. It's weird. I just want to be awake and functional 🥲
I had this but my dr didn’t hv a diagnosis. 😢 I would hv muscle twitches as well
Amazingly informative - a very accessible overview. I'm a physician and confess I've never really understand either disorder. It occurs to me only in watching your video that I have this.
I had a sleep study once and during the next day's MSLT, didn't fall asleep once. I thought it must be a kind of post- "first-night effect" given that I typically fall asleep whenever & wherever I want!
Near the end of the day, I asked if I could leave early, since the test was clearly negative. I was surprised when they told me I'd briefly fallen asleep with each attempt.
In all I'm reading on cataplexy, I don't see any mention of driving restrictions. I'm personally aware of when episodes occur (that I know of!) and haven't experienced one while driving or walking; only when sitting quietly. I just thought it was a quick moment of "dropping-off."
How does one navigate driving w. this diagnosis? And are there theories as to the etiology of it? I do have a connective tissue disease; do you see an increased incidence in those w. autoimmune disorders?
Cheers, and thx for this. It is kind of fascinating as disorders go!
Driving restrictions vary by state. The best rule of thumb is for no one to drive if they feel drowsy or impaired, regardless of whether they have a condition or not. It is a very common cause of car accidents. There are many with narcolepsy who can drive safely if their condition is addressed properly.
I was diagnosed with cataplexy but I don’t fall asleep randomly. I have access I’ve sleepiness sometimes. Cataplexy happens with me when I’m laughing or worse when tickled.
Same here, i Have so many cataplexy attack, but because mslt was normal, they didnt Have me diagnose for narcolepsy, we are waiting for hypocretin result, they wrote diagnose open..
Thanks for sharing your experiences. I have written two recent and very detailed blog posts on the diagnostic errors of NT1 to help guide patients and providers:
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-i
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-ii
(or the shorter CZcams videos if you prefer)
czcams.com/video/0goD3Ncwvl0/video.html
czcams.com/video/jcpOEBVH7Mk/video.html
Okay so I have adhd. Smoked weed. When I don’t smoke for a while my symptoms go away. I’m not sure if it’s cataplexy, it’s like my anxiety triggers this but my whole body just starts to twitch. I sometimes do fall to the ground or sometimes I just take it and get all stiff standing up.
That can be interacting with other medications you may be on, particularly antidepressants etc, it is obvious that it isn’t manifesting a hidden symptom of a disease, but rather causing a negative reaction. There are things like serotonin syndrome and much more I’m sure you could be inducing
I have these fits where if i laugh hard enough i lose muscles control and i feel my body tingle would this be comsider that
Like the 1st Comment ... Cataplexy is triggered by ANY high emotion for me. The collapse ... in my 50s Emotional disagreements of and intensity invite strong sleep attacks that I cannot overcome. I have to succumb to it because if 8 do y, I can't really DO anything with focus. Just fighting the need to sleep?
It is do much more than the literature shows. As an identical Twin, we have solved the Cataplexy with XyWave for the most part, but a loves one can simply push a button by being emotionally draining. They DON'T believe it. Just believe it's trying to avoid dealing with it.
In fact I'm here now n ready to sleep bcs GF jack'd on me abt something we had firmly scheduled for tomorrow ... why I couldn't just do it now. It's torture for all concerned ... I will write a Book.
I thought That I understood cataplexy. So I told my doctor that. And then I was experiencing droopy eyes, for a while. Or as I explain it, it felt like my eyes were like sentience or as if they're going into rem while I was awake. And I had no control over keeping them open. And if I am driving I would have to stop driving because my eyes would cross and everything. Basically just no control over my muscles. They're just doing willy-nilly. I explained that to my neurologist and she's like yeah cataplexy can present like that. I was like oh maybe I do have cataplexy then. But its very hard go find explinations or others experiencing catsplexy in this manner.
There are numerous forms of muscle weakness such as myasthenia gravis that can often be confused with cataplexy. Cataplexy is not weakness. It is a temporary loss of muscle tone and rarely lasts more than a few split-seconds, often triggered by emotions such as humor or surprise.
This sounds like MG. If you put ice to your eyes when they feel droopy (ptosis) do they get better? You might want to see a neuro with experience in diagnosing MG.
Im quite confused. My grandmother is diagnosed with catyplexy and my doctor thinks thats what i have but none of what i find online matches my experience or what i see happen in my grandmother. Everyone in my family calls it grandma loosing her legs and it lasts for hours where she can't move her legs or her legs start uncontrollably kicking. Ive never had an episode that bad but to me it feels like im touching a live wire and getting shocked but its mostly around my spine. I loose my ballance and it is quite painful to move but i can still move. I started having this happen in early 2020 and over time have figured out it happens less if i have a good noght sleep between 9:30pm and 7am. I just want to know what it is because it is currently happening and started yesterday. I have things to do but it hurts to move
Cataplexy is so rare that most doctors, even sleep specialists have never really seen it or mistake it for other symptoms, so it is always good to get a second opinion from someone with experience with cataplexy evaluation.
@@andyberkowskimd I have now found out the electric feeling was severe muscle spasms.
Dr. B can this diagnose be similar to conversion disorder / FND?
Biologically-caused cataplexy is almost always caused by the process that leads to narcolepsy type 1. Like most neurological symptoms, there definitely can be cataplexy symptoms due to a functional neurological/conversion/somatoform disorder and can also lead one down the path to a mis-diagnosis of narcolepsy type 1. Many clinicians do not a clear understanding of the mechanics of cataplexy so even symptoms that are mimics can be incorrectly thought of as cataplexy. This blog on the diagnosis of narcolepsy type 1 provides even more detail:
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-i
Can cataplexy happen as “jerks/twitches” in the neck/jaw/head? It’s always with some type of emotion and it’s completely uncontrollable. I also have experienced fully body paralysis, have had my knees give out but it’s usually just the “jerks”. I do have narcolepsy but the doctor didn’t see that as cataplexy, I feel like it is though.
Yes. Exactly that's how mine comes about and the the weakness in my kneed but I definitely have no control of my head in these situations. We all need to do like a video chat support group.
Generally cataplexy affects some muscle groups and in rare cases it can be many at the same time. Most of the time it is a momentary lapse in muscle tone in just a few muscles, like a head bob or shoulder droop and not the entire body being unable to move.
Im not going to self diagnose myself but it sounds very likely that i have that. My mother also has these symptoms so its possible its genetic?
Cataplexy is almost exclusively related to narcolepsy type 1. There are many mimics and it takes an experienced clinician to distinguish between cataplexy and other movements or forms of weakness.
Is it known why cataplexy is caused by strong positive emotions specifically? Rather than by all strong emotion?
I am sure there is some ongoing research into this, but I am not aware of why certain, usually positive emotions, are triggers but quite fascinating nonetheless. Many with NT1 learn to selective regulate or avoid these emotions to avoid cataplectic events.
Dear Dr. Berkowski, is it possible that Cataplexy is existing like a sickness alone? I mean without being a part of Narcolepsy? The reason for my question is that I am falling down suddenly on the street from time to time when I get a quite sad or emotional message (last time I fell on my head and was heavy injured) and that for quite a long period of time already at least 10 - 20 times a day things are just falling suddenly out of my hands without any obvious reason. Moreover I am waking up very often at night and can not sleep anymore and also having heavy dreams. During day time I am very tired then - nearly every day. I would be very thankful for your advice and especially please let me kindly know please which kind of doctor I could ask for help. Kindest regards and thanks a lot in advance
I am not aware of cataplexy occurring outside of narcolepsy type 1 or very unusual forms of brain damage, but this is a good question and I have not searched the literature for reports. Most with excessive daytime sleepiness and symptoms of cataplexy or cataplexy-like symptoms can be assessed by a sleep specialist.
Can you have cataplexy without narcolepsy?
That's a great question and I am not aware of another cause but I suppose there could be rare cases. There may be some rare forms of brain damage from a stroke or other injury theoretically, but from my understanding the cataplexy is due to the disruption of the brain's regulation of sleep stages from the destruction of hypocretin-producing brain cells in the center of the brain called the hypothalamus. If hypocretin is lost then all the other symptoms of narcolepsy would be there too, with cataplexy along for the ride. It is usually that cataplexy without narcolepsy is not actually cataplexy, but something that mimics cataplexy.
Actually yes. pubmed.ncbi.nlm.nih.gov/27323320/
i have type 12 cataplexy i accidentally spilled hot coffee while laughing on a midget and he screamed and punched me in the balls
you arent a doctor. John butler is better than you. this is making me laugh so im losing controlllllllllll of mygttyy hansadfgad.