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Cataplexy: How Do You Deal?

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#1 sleepingmonkey

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Posted 20 May 2013 - 10:38 AM

Hi, all!

 

I've been having cataplexy (rag doll episodes) episodes for the past 10 years, or so. I'm going to be 30 next month. I asked my doctor about it once many years ago, and we attributed it to lack of oxygen when laughing; I never associated it with muscle loss, but instead light-headedness.

 

Recently it has been happening A LOT more. I'm happier, laughing more etc. So I made another appointment with my primary physician, and we decided on cataplexy. I mean, it's obvious really, once I read all of the symptoms online and spoke to my doctor. I have my first appointment with a neurologist/sleep specialist Thursday of this week, and I'm hoping to get more answers (and do a sleep study).

 

I do not randomly fall asleep, however I hit REM cycle immediately, sleep a lot, nap at least once daily, cannot be in a vehicle (or comfy position) without almost immediately falling asleep etc. I will not be surprised if/when the doctor tells me I'm narcoleptic.

 

Just some random observations & symptoms, to better understand...

collapse with laughter (sometimes I'm barely laughing & I fall down, other times I'm laughing like crazy and nothing happens!)

collapse includes muscle loss in legs, but also in face

my eyes have been fluttering more with episodes, and sometimes my face still feels weird afterwards for a few minutes

very vivid dreams, lucid dreams, sleep paralysis (less frequent), hallucinations before sleep

I hit REM sleep immediately...if I nap for 10 minutes, I dream for 10 minutes

muscle loss in face with orgasm (sometimes - it does appear to depend on the strength of the orgasm. this is embarrassing!!)

I can usually manage to get a hand over my mouth while it's happening to cover the goofy looks that follow

regular episodes include things like: hitting my head on the keyboard (gently - it isn't so abrupt that I can't usually catch myself with a hand/arm) while at the office, laughing while walking and collapsing to hands and knees

I'm QUITE moody when I'm woke, and will often times say very cruel things, though that is not part of my regular, waking personality. I've been known to throw elbows and threaten beatings haha

low blood sugar and lack of sleep seem to trigger it

 

But my question(s) is, for those of you that have cataplexy...do you notice that lack of sleep and low blood sugar seem to trigger more frequent episodes? Also, I go through stages (months at a time) where I don't remember ANY of my dreams, followed by period (also months) where I remember ALL of them. It appears that when I am remembering my dreams, I am having MORE frequent cataplexy episodes. I don't know if there is any correlation there, but it's just an observation. Also...can having a glass of wine/beer in the evening exasperate anything? I haven't seen an research on this.

 

My episodes are triggered by laughter mostly, and occasionally orgasm. It's embarrassing. If I'm standing near a table, chair, railing etc. I can grab onto something and kinda lower myself to the floor, but that isn't always the case. Lately it seems that I'm dropping to my hands and knees more frequently. If I'm sitting or lying down, my shoulders, arms, neck and facial muscles are affected. It's happening at least once a day, every day. Whereas, before, it seemed to a 1-2x per month occurrence.

 

I'm in a new relationship and I think my boyfriend thinks I'm a weirdo. I also think that he's concerned about what this means going forward: will it get worse? will it harm me in any way (separate of me falling and hitting my head as a result of an episode)? will future children have it? I have a son and he doesn't not appear to have it.

 

A distant cousin on my mom's side has narcolepsy and cataplexy; her father has narcolepsy without cataplexy. We are the only people in our family that have it to my knowledge. 

 

Also...anything you can think of that I should specifically ask of my neurologist at our first meeting? I've been keeping a log of my eating habits, sleep habits and frequency of occurrences, so I'm hoping that will be a useful tool. Anything else?

 

Thank you!! I look forward - with mixed emotions - to being a part of this community & getting to know you all ;)

 

-Katie



#2 DeathRabbit

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Posted 20 May 2013 - 11:04 AM

I wouldn't worry about your son getting it at his age. There are some childhood cases of Narcolepsy on this board, but as rare as Narcolepsy is, childhood Narcolepsy is way, way rare. Usually, it will manifest as it did with you once your brain reaches maturity (late teens, early 20s) as do most auto-immune disorders. Most Narcoleptics don't fall asleep randomly, a la Rat Race style, it's more just that we are just severely fatigued, so we are prone to accidental sleep the same way a normal person would be if they were incredibly sleep deprived. I used to have more problems with nodding off and microsleeps, but I've developed an iron willpower to resistign sleep luckily, so accidental sleep hasn't happened to me in a long, long time. Good luck with the appointment!



#3 sleepingmonkey

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Posted 20 May 2013 - 11:32 AM

What are the chances that he gets it when he's older? I have read mixed research on genetics...

 

Thanks! I'm just trying to piece this all together. I can't believe that I didn't piece it together sooner, what with the frequency, duration and the internet at my disposal!



#4 sk8aplexy

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Posted 20 May 2013 - 04:44 PM

Wish I could answer your questions.  Hopefully what I say here will not be harming or unpleasant.

 

I do think that there is such complexity to the disease and symptoms, especially with Cataplexy, that it can be tricky to even begin to figure it out, and maybe should I also say to note it.

Perhaps that is better though, as I think there can be sharp edges on either side, knowing / noting vs. not knowing / not noting.

The symptoms, until they're at an extreme, are so 'normal/average/typical/standard/ordinary' that it is very difficult to combine them and recognize them without specific understanding of the disease.

Cataplexy has to get to the point that the person is effected by it, or perhaps the parent is frightened by noting it.  I say that only because I can definitely remember not being able to lift my arms as a kid while being tickled but collapsing only began around age 20, I was 28 when I first discovered the word Cataplexy and 30 before confirming it all.  There was so much, to it all (the symptoms), that just seemed like things we all experience, or things that could so easily be considered ordinary to everyone else.  The alarm that it caused (not being able to lift my arms) to me, didn't ring in a major effecting manner and no one heard nor perhaps believed me (I was laughing, rolling from side to side, just had no muscles in my arms; while being tickled saying "I can't lift my arms, quit it").  That is to say, I'd learned to live with it and have always adjusted to it, I'm stubborn but for perhaps obvious reasons, being there are not always answers. 

 

I've not found treatment which has helped me, however I've taken a lot of measures to do with lifestyle adjustments, which have helped me; yet the symptoms vary and continue, as they do and likely always will.  It's a juggling act and there's a lot to it.  I've posted many times on the forums going into what I have found to help me out.

For Cataplexy specifically, stresses/anxieties/energy levels are all huge.  Minimizing the stress and anxieties and getting as best of rest as I possibly can, play directly into minimizing Cataplexy occurrences.  To answer your direct question; yes, lack of sleep influences Cataplexy occurring more, and I'm not sure regarding the blood sugar levels effect.  Also, personally I've not noted a relation to remembering dreams and being more susceptible to Cataplexy; however, this disease, as does the symptoms along with it, does/do seem to vary from person to person and there are many times, it has for me, takes reading anothers experiences with it before actually noting aspects of it in my own experience.  I don't ever drink, too many allergy responses, immediate headaches...

These forums have helped me a lot though.  Understanding and recognition have been hugely valuable, in the battle of juggling it all.

 

It seems like genetics are only an aspect and don't predict.  Environmental things seem to play into it all as much, if not more so.

A combination of the two is what it comes down to, and that is no simple answer or predictable matter.

 

The best of luck.



#5 sleepingmonkey

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Posted 04 June 2013 - 12:22 PM

Well, I'm off to my sleep study this evening and the MSLT tomorrow during the day. How lovely to spend my 30th birthday taking naps and being monitored?!

I was tested for the narcolepsy gene and expected the results already, so I'm hoping to have them at some point this afternoon. 

 

 

Well...wish me luck! Thanks, all!



#6 Hank

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Posted 04 June 2013 - 12:43 PM

Happy Birthday. It will be like spending your birthday at a hotel- with overly attentive room service. Cheers to your next decade.

#7 sleepingmonkey

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Posted 04 June 2013 - 01:52 PM

Thanks, Hank!

 

Just got the results. I have the HLA haplo type gene associated with N. No surprise there...



#8 sleepingmonkey

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Posted 05 June 2013 - 01:53 PM

So, more info! I have the HLA-DR15 and HLA-DQ6.

Did overnight study and they said I got a decent amount of sleep. The MSLT showed N though doctor has to read tests. But basically all four naps I fell asleep in 3-4 minutes and hit REM all times. The tech couldn't say for sure because he's not allowed to, but did say they only require two naps with the above criteria being met for a N diagnosis.

#9 Hank

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Posted 05 June 2013 - 02:08 PM

Welcome to the club- not what you were expecting for a birthday present.

I am glad to you that the diagnosis is firm and clean. I hope you feel relieved to have the answer. Now, you can start overcoming this, rather than living under it. I found trying to figure it all out worse than the illness itself.

Congratulations

#10 sleepingmonkey

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Posted 06 June 2013 - 02:39 PM

haha thanks, Hank!

 

I don't really know what there is to overcome at this point. Same thing I've always had, just a new name for it. I do find myself feeling a little down in the dumps about it though. I don't know why because it's really nothing new. Maybe it's just the knowledge of knowing it has a name.

 

If I could find a way to stay awake during the day, separate of medication, that would be ideal. So I'm going to do some research on foods I can consume and herbal alternatives.



#11 sleepingmonkey

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Posted 11 June 2013 - 03:54 PM

So, got the "official" diagnosis. N & C. duh! Abnormal finding from MSLT. N and pathologic degree of hypersomnia (same thing?!). My average sleep time during the MSLT was 2 minutes and 23 seconds, ha!

 

Question though...I do NOT feel like I fell asleep that quickly. In fact, I feel like it was at least 5-7 minutes, and that even though I was awake, I was dreaming. Do any of you find yourself in a dream state, but find that you're awake. This happens daily/nightly to me. I'm awake, dreaming and then next thing I know I'm waking up in the morning, and it's almost like I just completely blacked out. The sleep tech wonders if I'm describing hypnagogic hallucinations. Do any of you have experience with this?



#12 DeathRabbit

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Posted 11 June 2013 - 07:38 PM

I think sometimes we're asleep but don't realize it.



#13 AnnieJoy

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Posted 30 June 2013 - 03:21 PM

Cataplexy can present itself in slurring of speech, yes? Can it stop talking all together. With certain emotions, but especially stress under confrontation or panic, I can't formulate responses. My mind goes a million different directions. I feel blood rush to my head, and I imagine it is what it feels like to be high--all of this and I just can't speak. I am very tired here but can't always go to sleep. I become hyperaware. Noticing things I typically don't. For instance if I am in a car, I will see the exact angles to which the telephone poles are leaning; my eyes dart all over and my chest feels tight and heavy. I see things and hear things but it's like I'm stuck on input and can't release anything. No words. No output. It's like part of me is asleep. 

Typically I have to sleep within 30 minutes of an episode or I feel like I'm floating for the rest of the day. 

 

 

Is this just cataplexy with the slurrs or could it also be microsleeping? 



#14 sk8aplexy

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Posted 30 June 2013 - 04:39 PM

Speaking from my own experience and understanding of how my Cataplexy is, I'll attempt responding to your questions.

 

Yes, Cataplexy can effect speech and it can definitely stop talking all together.  For it to definitely be Cataplexy in regards to speech, it would most likely only be in some sort of response, involving certain emotions, or perhaps during some exhausting activity.

Cataplexy is much 'more likely to occur' anytime you are under stress, are extra anxious, are in some unexpected/unanticipated confrontation, are panic'd, are perhaps in some silly moment, are perhaps extra nervous/frustrated/angry, are not well rested (I know that's most the time, but perhaps sometimes and/or some days are worse than others)...

Typically, it is easier for more Cataplexy attacks/episodes to occur after one has already occurred.

Sometimes, Cataplexy will cause me to basically, literally, freeze up.  While, knowing that if I attempt to fight it, it will hit harder and I'll collapse intensely, but I remain standing frozen mid-speech. In my head I'm analyzing the odd sensations that I feel when the Cataplexy occurs [muscle flickering, I describe it as] gauging, as to whether I should just make my way down to the ground immediately [to be safe and let it dissipate on the ground] or whether perhaps it will, or is, dissipating on its own.  Whenever I feel the sensations oncoming, I begin gauging my surroundings (positioning, which direction is safest to lean towards, for collapse) and my body (how intense is this one, will it escalate if I remain standing).  At times, there's no time to gauge and I'm down.

 

Again, this is all speaking from my own experience of how Cataplexy effects me; there is no rule/text book to it, and we each experience different degrees of variations of it, as well as the other symptoms of Narcolepsy.

 

I would say slurring of words can occur, but mumbling (being entirely unable to say any word properly, for a more extended period of time - still only really within seconds of when the Cataplexy attack/episode began and dissipated) I would say is a more definitive Cataplexy occurrence.  When it effects my speech, I am able to feel the muscles flickering and the head drooping, my words become a mumble and/or completely broken, not so much of a slur like a drunken person speaks...

 

Some of what you describe does perhaps sound more like microsleeping, being sort of in between awake and dreaming, perhaps your body is also and for that reason words are slurred.

I've experienced a lot of that, with the slurring and also being hyperaware; when I am nodding off in my chair and could so easily nap, at times, just the getting up and moving over to the bed only a few feet away, somehow when I get into the bed I'm unable to fall asleep and my mind just goes in and out of odd/random places/dreams.

 

Not sure I've helped you out at all there?  The best of luck with it all. to you.

Understanding and recognition of the condition/disorder/disease, along with much hindsight over the many years of not knowing why or what was behind so much, I'm now able to juggle things better and especially grasp them better.



#15 Ferret

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Posted 30 June 2013 - 10:05 PM

 

Sk8aplexy wrote:

Whenever I feel the sensations oncoming, I begin gauging my surroundings (positioning, which direction is safest to lean towards, for collapse) and my body (how intense is this one, will it escalate if I remain standing). At times, there's no time to gauge and I'm down.

 

What you describe is someone who has lived with Cataplexy for a while. It's a learned behaviour for your own protection and I do exactly the same thing. Unfortunately it only comes with lots of practice :(

AnnieJoy, of all the things that help me, a RIGID sleep schedule is THE most important and you practically have to train yourself to do it. For me, it's a nap from 2 p.m. to 5 p.m. and night sleep from 11 p.m. to 6 a.m.. You will have to experiment with what will work for you...sleep wise, med wise and lifestyle wise.

This morning I was wakened at 4 a.m....small disaster with my pooch...by 11:30 a.m. I had had two small episodes of cataplexy...and was back in bed at noon. If my schedule gets screwed up, then so do I.

Everyone is so very different but I have no doubt that you will find what works for you.



#16 SleepingWithSirens

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Posted 05 October 2013 - 09:12 PM

So, got the "official" diagnosis. N & C. duh! Abnormal finding from MSLT. N and pathologic degree of hypersomnia (same thing?!). My average sleep time during the MSLT was 2 minutes and 23 seconds, ha!

 

Question though...I do NOT feel like I fell asleep that quickly. In fact, I feel like it was at least 5-7 minutes, and that even though I was awake, I was dreaming. Do any of you find yourself in a dream state, but find that you're awake. This happens daily/nightly to me. I'm awake, dreaming and then next thing I know I'm waking up in the morning, and it's almost like I just completely blacked out. The sleep tech wonders if I'm describing hypnagogic hallucinations. Do any of you have experience with this?

So here's what I know, I'm 15 and a sophomore. I got diagnosed with Narcolepsy w/ Cataplexy no less than 3 moths ago.

With being a teenager in school I often find myself going into a state where I can hear everything around me, but I've dosed into a light sleep. but the thing is my mind creates this "dream" that makes me think I'm still awake taking notes or whatever. Although this only happens for a few minutes or so I find myself snapping back to reality and realizing I wasn't awake at all. Over time I noticed that when I dose off it feels like I blink then I'm out. and maybe that's due to the fact that my average time it takes for me to fall asleep is 1 minute flat. I've also had these "minor" hallucinations (either your hallucinating or you aren't) in which I see things in the back of a room or out of the corner of my eye that obviously shouldn't be there. I don't know if this helps at all but I hope for the best.

 

P.S. On a side note. My Doctor told me that the chances of a child (10-15) having Narcolepsy w/ Cataplexy is 1 in 2000 people



#17 wannasleep

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Posted 17 October 2013 - 12:28 AM

Hi, I am new here and I wanted to ask a question if it is ok. I have not been diagnosed but after reading some of the experiences I think I may have Narcolepsy. I have been having something weird happening and I don't know if it is cataplexy or not. It usually happens when I am having one of my sudden sleepy spells but I have had it a few times when I am just a little sleepy. All of a sudden my shoulders, arms and neck feel very weak. Then my head will drop forward or backward and then my eyesight will start jumping. After that my eyelids will start fluttering and I cannot control it. This usually only goes on for 2 to 5 minutes. Does this sound like it could be cataplexy?

Thanks for any help you can give me.

#18 Ferret

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Posted 17 October 2013 - 01:17 PM

Sounds like a microsleep to me.



#19 Potato

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Posted 17 October 2013 - 08:48 PM

Hi, I am new here and I wanted to ask a question if it is ok. I have not been diagnosed but after reading some of the experiences I think I may have Narcolepsy. I have been having something weird happening and I don't know if it is cataplexy or not. It usually happens when I am having one of my sudden sleepy spells but I have had it a few times when I am just a little sleepy. All of a sudden my shoulders, arms and neck feel very weak. Then my head will drop forward or backward and then my eyesight will start jumping. After that my eyelids will start fluttering and I cannot control it. This usually only goes on for 2 to 5 minutes. Does this sound like it could be cataplexy?

Thanks for any help you can give me.

 

It could be cataplexy, but it could just as easily be a seizure. e.g. An absence or atonic seizure. You should absolutely be seeing a physician and getting a proper diagnosis. Without having a sleep study and/or other testing like EEG/MRI, there's not enough information to say what's going on.



#20 Ferret

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Posted 17 October 2013 - 09:38 PM

For sure you should get it checked out as Chemist says. I can tell you that the same thing happens to me if I'm desperately fighting a microsleep. All of my cataplectic attacks have definite emotional triggers involved.







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