my daughter has cataolexy......she is 10....was 6 when diagnosed and has cataplexy attacks when laughing!! she has melatonin for her narcolepsy, but after reading a forum on facebook, I was told that melatonin can actually make cataplexy worse?????
I don't know if this helps but I think I've got a little of this myself. My body gets all like, spaghetti when I have strong, sudden feelings. Often when I laugh or when I get scarred.
Went to the Los Vegas conference .. It was a OMG experience..so many types of cataplexy ..The youngest 9 the oldest 92...To walk in to a room and feel at home and no one to judge you ...left a pm for you.. tho not to bug you to much ....
It does look like cataplexy. Try to not give her attention when it occurs (but do not berate her when it does). If it happens with strong emotion or when she is distracted that would be a strong sign of cataplexy
It does look like mild cataplexy, it may get progressively worse. You mentioned that your child is on Melatonin, is this due to inability to sleep well? Does she fall asleep quickly but wake many times in the night? If so, I would definately suspect Narcolepsy.
It does look like mild cataplexy, it may get progressively worse. You mentioned that your child is on Melatonin, is this due to inability to sleep well? Does she fall asleep quickly but wake many times in the night? If so, I would definately suspect Narcolepsy.
It looks like cataplexy. I have cataplexy and sometimes it isn't full body. Sometimes, if the attack isn't that bad, then it is just some parts of the body and not others.
i am sorry. i have watched the other videos you have posted and i see this has been going on a while. when i watched this video, it looked like a kid playing, maybe looking for attention from 'falling down". I say this because the first fall, she was still holding up her upper body and in all the falls, she was still moving. after watching them all, i would think something is most certainly going on, but i still do not think narcolepsy. good luck!
@tofootie cataplexy - one can have partails to full attacks-rangeing from a sec to minutes or longer--you can contine where you left off before the attack when you come to like nothing happened as you get older it kind of embaraing--during this time one can hear and feel and are aware of whats happening -but your stuck--- if you were to fall the a hot road and no one was there to help you/remove you to a safe place all you can do is scream silenly -burns are painful
JUST from looking at the video, I say attention seeking is possible. it is not total loss of muscle tone, she is still moving when she goes "cataplexic". i would be interested in what the sleep tests reveal.
Looks like Cataplexy to me- there are not any "classic" or "typical" signs of cataplexy- it can range from a droopy eyelid to a full body collapse. LOOK it UP and become EDUCATED
@sanyasagar cataplexy isn't necessarily losing all muscle tone. Cataplexy can range from mild to severe. It can be as simple as occasional spells where your knees give out and your jaw becomes slack (but not actually fainting), to having frequent episodes of becoming completely unconscious for up to a minute.
I have cataplexy, and I know that uh oh feeling. I didn't know light could trigger it, but I probably should have known. I'm very sensitive to light.
part 3: If light sensitivity is an issue: Always trim your fingernails before using squeeze method. Wear a baseball hat to keep sun or light out of your face. Wear sun glasses. Summers are the worst time of year for Cataplexy people. Sleep is VERY important. Meds for sleep: Xyrem (the date rape drug)knocks you out to get your sleep. Doctors prefer Provigil (Modafinil). Taken in the morning Provigil keeps you up like coffee then wears off at the end of the day and you want to lay down to sleep.
part 2: The UK blogger said make fists and keep squeezing your fists tighter until they are trembling. I've tried it and it works. Seems it's a sensory override and you pop out of Cataplexy feeling refreshed. It is a dark place like deep in a cave but the harder you squeeze the faster you come back. Once I was at a vision therapy session and I talked my therapist thru the process. I was unable to move. She cupped both her hands around mine and squeezed til I could start squeezing on my own.
@gavilan411 Thank you for that advise.I will try that with the hands. I know how importend sleep is for her, but it's not always that she will sleep, beeng a 4 yo with her own oppinion. She figths off the tieredness with hyperactivity. I hope she will be better to sleep naps when she matures.
You may have missed a trigger right in front of you. Light sensitivity. I discovered my worst trigger by accident while attending a Christmas program where the light wash from a very bright spot light instantly threw me into cataplexy. It was like Kryptonite. The ushers wanted to call an ambulance but I insisted I would be fine if left in the back auditorium to recover by myself. Yes, you are defenseless and can't move at times but I can talk for some reason. I found a secret from a UK blogger.
@gavilan411 Oh yes, your are a brilliant observere. Caus' light is a trigger, and for a time I beliwed that she might have reflex-epilepsy as bright sunlight seamd to make her eyes roll and her face to twich. And she also often falls when she hit the light from a window...
Certainly looks like cataplexy to me! Classic! Emotions...laughter usually being the main trigger. I have cataplexy and my triggers are stress, fear and being startled.
I am very sorry for your child....I have some sort of undiagnosed sleep disorder myself..just awoke from one of the most frightening episodes ever. Does she ever mention dreaming that she is sleeping and trying to wake up?? This is what I go thru it doesn't happen all the time seems more with stress but it is terrifying as I will "dream" exactally where I am down to what I'm wearing but can not move or call out for help I have no idea how long I'm in this state if it happens as soon as I go to
@amberwavesrn I'm sorry for you to. It must be arwfull to have such "dreams" that mix up with reality. My daughter has not mention about dreaming while trying to wake up, but she often tells about things that only she can see. I hope that you to get some help and a dx.
Uhh I know that one to, I'm affread... It's called Münchausens by proxy or Medical abused children... And it really makes me cry just to think that one doctor had that in his mind :-((( I read a lot of medical information, but I really try to hide my knowldge when I talked to doc's. I have ADD by the way and caus' of that I have a hard time to say anything but the truth. It takes to much attention to lie. ;o)
sons problems started over 10+ years ago have a Dx 2010 for cats with out nar-hes now 25-hes lost the title of nuts- lazy- wanting attention-etc-Don't take no as an answer-you may be one of the lucky ones who have no problems with getting the answer you need-shes going to need all the support she can get-family friends strangers and her sister needs your support to- test eeg egk mri cats blood- all say theres nothing wrong with him--pt1 narcats
@klyfly1 Oh I'm really glad he's no longer being accused of seeking attention. The first time we had that accusation, was when my daughter was only 2 yo. Crazy as she often try very hard to hide her tirednes and falls. We also have lots of normal tests, mri and lots of EEG. But she has not have blood test for cataplexy or the spinaltap, but that migth be the next thing to do, if the tre day sleep test shows nothing or is inconclusive. But I pray that it will not be necessary.
Yes she has a lot of triggers, excitment and when she's angry. It often becomes worse when she's tierd. And don't worry I would never leve her alone i bath or pools.
In fact, she is seldom alone as she hates it, easely becomes scared of ghosts and such's things. She can also say strange things like, now you are all green mommy and I can also make you yellow. LOL I tell her that she has superpowers. ;-)
looks like cats to me and she having fun laughing(trigger) so when she comes to she still laughting where shes left off before her body went to sleep(rem)-eveyones different-my have to go Dr shopping before someone finly gets it-sons had 3 sleep studys all were normal-does she have other triggers happy- sad- crying- exciment- does she appear to sleep walk-or has she experence automic behaivors - is she worryed about monsters under the bed or in the cloest(not joking)-UCLA or Stanford-calif
Thank you for your reply, I'm really appreciative of that. I have seen a specialist in sleep disorders, she's got a copy of these film and some more. Right now we wait a 3-day sleep test in november. Hopefully that will give us the final answers.
I am narcoleptic and i have cataplexy and this does look like cataplexy....esp the last one were she seems to be stuck in a cataplexic attack.....you should carry on recording her in different situations and show a specialist....maybe write a diary of her day to day sleep and cataplexic attacks .... with cataplexy i usually become very tired after having 3 attacks one after the other....look out for this and also slurred speech....the specialist said to me that slurred speech is cataplexy
A very touching video, brang tears to my eyes. None of us are doctors, but all seem to agree that their is a high chance of it being Cataplaxy. It is possible to show stronger Cataplaxy symptoms than Narcolepsy. Im sure you do all you can to be supportive towards her. I truely hope that if this continues as she ages, that it doesnt put her off having fun.... She seems very happy and compliant, not fustrated with the episodes tho, which is a fantastic start....Best wishes to all of the family...
take her to a neurologist and have a sleep study done. that's how I was diagnosed with narcolepsy and cataplexy. i was diagnosed at 17 but had strange spells as a kid when my knees would give out and my doctors just dismissed it. my symptoms got significantly worse (even with meds) until i couldn't even hold a normal conversation. i have been on all kinds of meds for both disorders but the one that has worked wonders is xyrem. a neurologist that specializes in sleeping disorders would know of it
Looks like it to me to. Falls on her face, knees look like they buckle, she doesn't seem to be looking for a reaction, just trying to get out of it. Sometimes she stays "stuck" for a bit longer than just falling, which is common. Hope you find the help she needs!
It looks like cataplexy to me. She seems stuck in some of them. And I don't know anyone that goes down face first for attention! The swing could trigger some startle reflex and the fact that she's happy/excited could do it too. Plus, she doesn't seem to be looking for a reaction while she does it. And what Katapea says... docs don't recognize it oftenmes :(
I hope your little girl gets the help she needs!
Second comment: Hubby says it's tricky but looks too familiar not to be explored!
It looks like cataplexy to me. She seems stuck in some of them. And I don't know anyone that goes down face first for attention! The swing could trigger some startle reflex and the fact that she's happy/excited could do it too. Plus, she doesn't seem to be looking for a reaction while she does it. And what Katapea says... docs don't recognize it oftenmes :(
I hope your little girl gets the help she needs!
Second comment: Hubby says it's tricky but looks too familiar not to be explored!
Thank you for input. She do seam tired most of the day. Very hyper active and easily irritable. But she never sleeps in strange places. She only gets one daytime nap, beside her nightime sleep.
@TrinaDK Looks like it to me to. Falls on her face, knees look like they buckle, she doesn't seem to be looking for a reaction, just trying to get out of it. Sometimes she stays "stuck" for a bit longer than just falling, which is common. Hope you find the help she needs!
my daughter has cataolexy......she is 10....was 6 when diagnosed and has cataplexy attacks when laughing!! she has melatonin for her narcolepsy, but after reading a forum on facebook, I was told that melatonin can actually make cataplexy worse?????
Elliecute10 1 week ago
It just makes me happy she is happy! I love her laugh!
nannetta 1 month ago in playlist More videos from TrinaDK
My 8 yr old grandson has episodes just like this & the Neurologist is treating him for Cataplectic Episodes. He is still having tests done.
country1800361 1 month ago
I don't know if this helps but I think I've got a little of this myself. My body gets all like, spaghetti when I have strong, sudden feelings. Often when I laugh or when I get scarred.
ImNatTheTwat 3 months ago
Went to the Los Vegas conference .. It was a OMG experience..so many types of cataplexy ..The youngest 9 the oldest 92...To walk in to a room and feel at home and no one to judge you ...left a pm for you.. tho not to bug you to much ....
klyfly1 3 months ago
What a gorgeous child! I love that little laugh. :) It does look like a light case of cataplexy. I seriously doubt she's acting.
sglpaul 4 months ago
It does look like cataplexy. Try to not give her attention when it occurs (but do not berate her when it does). If it happens with strong emotion or when she is distracted that would be a strong sign of cataplexy
ACURachaelH 6 months ago
she is cute my friends suffers from this wut ever you do dnt let her go down stairs my friend fell
echo0622 6 months ago
It looks like it BUT sleep narcolepsy is very similar !!
I've had cataplexy my whole life, it def, looks like sleep narcolepsy. I would check in with a doctor
JuiceBoxLoveX 7 months ago
Looks suspiciously like cataplexy. My daughter and I both have it. Mine is mild, hers is severe.
narcolepticmama 9 months ago
It does look like mild cataplexy, it may get progressively worse. You mentioned that your child is on Melatonin, is this due to inability to sleep well? Does she fall asleep quickly but wake many times in the night? If so, I would definately suspect Narcolepsy.
kiewijm 10 months ago
It does look like mild cataplexy, it may get progressively worse. You mentioned that your child is on Melatonin, is this due to inability to sleep well? Does she fall asleep quickly but wake many times in the night? If so, I would definately suspect Narcolepsy.
kiewijm 10 months ago
It looks like cataplexy. I have cataplexy and sometimes it isn't full body. Sometimes, if the attack isn't that bad, then it is just some parts of the body and not others.
TheBlahblahkathy 10 months ago
Yeah that looks exactly like cataplexy, when they start to feel strong emotions they entre REM sleep and just fall to the ground
kathryn0angle 1 year ago
Thank you for your comment. No we still don't know anything about what's going on...
TrinaDK 1 year ago
look like very possible cataplexy to me this loks very similiar to my own. Did you ever find out what was going on?
23Sleepingbeauty 1 year ago
It's ok. I just wonder what partial cataplexia might be and look like?
TrinaDK 1 year ago
i am sorry. i have watched the other videos you have posted and i see this has been going on a while. when i watched this video, it looked like a kid playing, maybe looking for attention from 'falling down". I say this because the first fall, she was still holding up her upper body and in all the falls, she was still moving. after watching them all, i would think something is most certainly going on, but i still do not think narcolepsy. good luck!
tofootie 1 year ago
@tofootie cataplexy - one can have partails to full attacks-rangeing from a sec to minutes or longer--you can contine where you left off before the attack when you come to like nothing happened as you get older it kind of embaraing--during this time one can hear and feel and are aware of whats happening -but your stuck--- if you were to fall the a hot road and no one was there to help you/remove you to a safe place all you can do is scream silenly -burns are painful
klyfly1 1 year ago
JUST from looking at the video, I say attention seeking is possible. it is not total loss of muscle tone, she is still moving when she goes "cataplexic". i would be interested in what the sleep tests reveal.
tofootie 1 year ago
Hi klyfly1 and welcome. :o)
TrinaDK 1 year ago
thought I check in
klyfly1 1 year ago
Jeez don't ask youtube for medical advice see a doctor!
wilburtrex 1 year ago
Looks like Cataplexy to me- there are not any "classic" or "typical" signs of cataplexy- it can range from a droopy eyelid to a full body collapse. LOOK it UP and become EDUCATED
danielmeek 1 year ago
@MrSuperiority No, she does not know anyone with cataplexy or seizure...
Do you also think she act that time she fell and broke her collar-bone? Not to mention the many injurrys in her face, head and body?
TrinaDK 1 year ago
hi! I don't think this is cataplexy. she does not show the classic signs of losing all muscle tone in response to intense emotion.
sanyasagar 1 year ago
@sanyasagar cataplexy isn't necessarily losing all muscle tone. Cataplexy can range from mild to severe. It can be as simple as occasional spells where your knees give out and your jaw becomes slack (but not actually fainting), to having frequent episodes of becoming completely unconscious for up to a minute.
gracenotes55555 1 year ago
It looks like cataplexy
I have cataplexy, and I know that uh oh feeling. I didn't know light could trigger it, but I probably should have known. I'm very sensitive to light.
GerwynT 1 year ago
Here is my email address if you want a more confidential setting or care to chat in depth:
egberts3@yahoo.com
gavilan411 1 year ago
part 3: If light sensitivity is an issue: Always trim your fingernails before using squeeze method. Wear a baseball hat to keep sun or light out of your face. Wear sun glasses. Summers are the worst time of year for Cataplexy people. Sleep is VERY important. Meds for sleep: Xyrem (the date rape drug)knocks you out to get your sleep. Doctors prefer Provigil (Modafinil). Taken in the morning Provigil keeps you up like coffee then wears off at the end of the day and you want to lay down to sleep.
gavilan411 1 year ago
@gavilan411 The only medicin she's on is meletonin. She has a sleep study in nowember and the we must she what her doctor say?
TrinaDK 1 year ago
part 2: The UK blogger said make fists and keep squeezing your fists tighter until they are trembling. I've tried it and it works. Seems it's a sensory override and you pop out of Cataplexy feeling refreshed. It is a dark place like deep in a cave but the harder you squeeze the faster you come back. Once I was at a vision therapy session and I talked my therapist thru the process. I was unable to move. She cupped both her hands around mine and squeezed til I could start squeezing on my own.
gavilan411 1 year ago
@gavilan411 Thank you for that advise.I will try that with the hands. I know how importend sleep is for her, but it's not always that she will sleep, beeng a 4 yo with her own oppinion. She figths off the tieredness with hyperactivity. I hope she will be better to sleep naps when she matures.
TrinaDK 1 year ago
You may have missed a trigger right in front of you. Light sensitivity. I discovered my worst trigger by accident while attending a Christmas program where the light wash from a very bright spot light instantly threw me into cataplexy. It was like Kryptonite. The ushers wanted to call an ambulance but I insisted I would be fine if left in the back auditorium to recover by myself. Yes, you are defenseless and can't move at times but I can talk for some reason. I found a secret from a UK blogger.
gavilan411 1 year ago
@gavilan411 Oh yes, your are a brilliant observere. Caus' light is a trigger, and for a time I beliwed that she might have reflex-epilepsy as bright sunlight seamd to make her eyes roll and her face to twich. And she also often falls when she hit the light from a window...
TrinaDK 1 year ago
Thank you, I really appreciate all comment. An answer will proberly come in nowember after sleep test...
TrinaDK 1 year ago
These episodes are caused by excitment, anger, or sadness
10mcguire1 1 year ago
Certainly looks like cataplexy to me! Classic! Emotions...laughter usually being the main trigger. I have cataplexy and my triggers are stress, fear and being startled.
Hope you find the answers you are looking for...
xiola23 1 year ago
I am very sorry for your child....I have some sort of undiagnosed sleep disorder myself..just awoke from one of the most frightening episodes ever. Does she ever mention dreaming that she is sleeping and trying to wake up?? This is what I go thru it doesn't happen all the time seems more with stress but it is terrifying as I will "dream" exactally where I am down to what I'm wearing but can not move or call out for help I have no idea how long I'm in this state if it happens as soon as I go to
amberwavesrn 1 year ago
@amberwavesrn I'm sorry for you to. It must be arwfull to have such "dreams" that mix up with reality. My daughter has not mention about dreaming while trying to wake up, but she often tells about things that only she can see. I hope that you to get some help and a dx.
TrinaDK 1 year ago
Uhh I know that one to, I'm affread... It's called Münchausens by proxy or Medical abused children... And it really makes me cry just to think that one doctor had that in his mind :-((( I read a lot of medical information, but I really try to hide my knowldge when I talked to doc's. I have ADD by the way and caus' of that I have a hard time to say anything but the truth. It takes to much attention to lie. ;o)
TrinaDK 1 year ago
theres another thing to watch out for- its being accused of making your daughter sick--it starts with an M do not know how to spell it----
klyfly1 1 year ago
sons problems started over 10+ years ago have a Dx 2010 for cats with out nar-hes now 25-hes lost the title of nuts- lazy- wanting attention-etc-Don't take no as an answer-you may be one of the lucky ones who have no problems with getting the answer you need-shes going to need all the support she can get-family friends strangers and her sister needs your support to- test eeg egk mri cats blood- all say theres nothing wrong with him--pt1 narcats
klyfly1 1 year ago
@klyfly1 Oh I'm really glad he's no longer being accused of seeking attention. The first time we had that accusation, was when my daughter was only 2 yo. Crazy as she often try very hard to hide her tirednes and falls. We also have lots of normal tests, mri and lots of EEG. But she has not have blood test for cataplexy or the spinaltap, but that migth be the next thing to do, if the tre day sleep test shows nothing or is inconclusive. But I pray that it will not be necessary.
TrinaDK 1 year ago
Hi Klyfly
Thank's for all the comment. ;-)
Yes she has a lot of triggers, excitment and when she's angry. It often becomes worse when she's tierd. And don't worry I would never leve her alone i bath or pools.
In fact, she is seldom alone as she hates it, easely becomes scared of ghosts and such's things. She can also say strange things like, now you are all green mommy and I can also make you yellow. LOL I tell her that she has superpowers. ;-)
TrinaDK 1 year ago
think I hit span on lawropiak85 --Sorry
klyfly1 1 year ago
P.S.---- 1 problem a health threat is water- swimming pool- bath tub-- left unsupervised one could drown---careful
klyfly1 1 year ago
Comment removed
klyfly1 1 year ago
looks like cats to me and she having fun laughing(trigger) so when she comes to she still laughting where shes left off before her body went to sleep(rem)-eveyones different-my have to go Dr shopping before someone finly gets it-sons had 3 sleep studys all were normal-does she have other triggers happy- sad- crying- exciment- does she appear to sleep walk-or has she experence automic behaivors - is she worryed about monsters under the bed or in the cloest(not joking)-UCLA or Stanford-calif
klyfly1 1 year ago
@klyfly1
I'm sorry your son had tree sleep test, how old was he when he finally got a dx?
TrinaDK 1 year ago
Thank you for your reply, I'm really appreciative of that. I have seen a specialist in sleep disorders, she's got a copy of these film and some more. Right now we wait a 3-day sleep test in november. Hopefully that will give us the final answers.
TrinaDK 1 year ago
I am narcoleptic and i have cataplexy and this does look like cataplexy....esp the last one were she seems to be stuck in a cataplexic attack.....you should carry on recording her in different situations and show a specialist....maybe write a diary of her day to day sleep and cataplexic attacks .... with cataplexy i usually become very tired after having 3 attacks one after the other....look out for this and also slurred speech....the specialist said to me that slurred speech is cataplexy
undercoverlova 1 year ago
A very touching video, brang tears to my eyes. None of us are doctors, but all seem to agree that their is a high chance of it being Cataplaxy. It is possible to show stronger Cataplaxy symptoms than Narcolepsy. Im sure you do all you can to be supportive towards her. I truely hope that if this continues as she ages, that it doesnt put her off having fun.... She seems very happy and compliant, not fustrated with the episodes tho, which is a fantastic start....Best wishes to all of the family...
mikeschase 1 year ago
take her to a neurologist and have a sleep study done. that's how I was diagnosed with narcolepsy and cataplexy. i was diagnosed at 17 but had strange spells as a kid when my knees would give out and my doctors just dismissed it. my symptoms got significantly worse (even with meds) until i couldn't even hold a normal conversation. i have been on all kinds of meds for both disorders but the one that has worked wonders is xyrem. a neurologist that specializes in sleeping disorders would know of it
extremedusk 1 year ago
Looks like it to me to. Falls on her face, knees look like they buckle, she doesn't seem to be looking for a reaction, just trying to get out of it. Sometimes she stays "stuck" for a bit longer than just falling, which is common. Hope you find the help she needs!
lawropiak85 1 year ago
@lawropiak85
Thank you for your thoroughly look at my film. I'm sure with time, I will find the right help for her.
TrinaDK 1 year ago
This has been flagged as spam show
It looks like cataplexy to me. She seems stuck in some of them. And I don't know anyone that goes down face first for attention! The swing could trigger some startle reflex and the fact that she's happy/excited could do it too. Plus, she doesn't seem to be looking for a reaction while she does it. And what Katapea says... docs don't recognize it oftenmes :(
I hope your little girl gets the help she needs!
Second comment: Hubby says it's tricky but looks too familiar not to be explored!
lawropiak85 1 year ago
It looks like cataplexy to me. She seems stuck in some of them. And I don't know anyone that goes down face first for attention! The swing could trigger some startle reflex and the fact that she's happy/excited could do it too. Plus, she doesn't seem to be looking for a reaction while she does it. And what Katapea says... docs don't recognize it oftenmes :(
I hope your little girl gets the help she needs!
Second comment: Hubby says it's tricky but looks too familiar not to be explored!
lawropiak85 1 year ago
Thank you for input. She do seam tired most of the day. Very hyper active and easily irritable. But she never sleeps in strange places. She only gets one daytime nap, beside her nightime sleep.
TrinaDK 1 year ago
This has been flagged as spam show
@TrinaDK Looks like it to me to. Falls on her face, knees look like they buckle, she doesn't seem to be looking for a reaction, just trying to get out of it. Sometimes she stays "stuck" for a bit longer than just falling, which is common. Hope you find the help she needs!
lawropiak85 1 year ago
to me it does look like cataplexy.....cause she snaps out of the spells laughing
katapea 1 year ago
@katapea
unfortunately, a lot of doctors surprisingly don't recognize cataplexy....
katapea 1 year ago