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Only Symptom Is Eds? Anyone Else?


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#1 squirrel!

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Posted 16 August 2013 - 10:45 PM

Hi guys.

I'm new. Still waiting for official diagnosis. I am unsure whether it could be narcolepsy because my main symptom is EDS. It's been going on for years and all other possible causes have been ruled out.

I may have some cataplexy going on, but am unsure about that too. But, no hallucinations, etc.

Also rarely just fall asleep, although I do need frequent naps and have "sleep attacks".

just curious how man of you have EDS as your main/only symptom?

Thanks!

#2 IdiopathicHypersomniac

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Posted 16 August 2013 - 11:21 PM

Describe your cataplexy.  Is it mild weakness of any muscle group when you experience an emotion?  It can be very slight and hardly noticeable in its early stages.  It may be in just your hands, or your knees, etc.



#3 squirrel!

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Posted 17 August 2013 - 08:34 PM

I am unsure about the cataplexy because I have weak legs often. I have several disk problems in my back and weakness in my legs is something I experience on and off. I have been known to fall down when I laugh, but I thought everyone did that? Also, on three occasions I have noticed this strange numb mouth, chin thing... It was brought on when was nervous about something, I assumed it was just anxiety?
So for me, no cataplexy symptoms have been very obvious, but possible. I do have extreme daytime fatigue for no known reason, which prompted the sleep study follow up.

#4 squirrel!

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Posted 17 August 2013 - 08:36 PM

I should add that I am a 31 year old female, 5'8, 140 lbs and very healthy otherwise. My polysomnogrM showed many spontaneous arousals and so now I am doing to mslt on Tuesday.

#5 Ferret

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Posted 17 August 2013 - 09:28 PM

The majority of people do not fall down when they laugh.
"Strange numb mouth, chin thing".....like your jaw drops open? can't shut it? can't talk?

#6 squirrel!

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Posted 17 August 2013 - 09:57 PM

I feel like it sounds crazy if I say it, but what the heck. ... No, my mouth didn't drop open, but it felt like it was open. Only for a few second, just like I couldn't move it properly. I thought to myself, I wonder if my friends can see this? But no one said anything. Again, I was nervous and extremely tired that day as well. It lasted maybe 3-4 seconds. 3 separate occasions.


So, about he EDS- are people diagnosed only having that as their symptoms. (. Realize other systems can show up later)

Thanks for responding

#7 squirrel!

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Posted 17 August 2013 - 09:59 PM

And I know not everyone falls down when they laugh, but when they really really laugh? It happens, right? Lol. I pretty much always do. Never really thought much of it until recently.

#8 IdiopathicHypersomniac

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Posted 17 August 2013 - 10:05 PM

Sounds like cataplexy.



#9 Ferret

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Posted 17 August 2013 - 11:13 PM

Sounds like early symptoms of cataplexy to me too.
I know this is gonna be tough but I would like you to ask those friends (or any friend or S.O.)if they will be honest with you and tell you if they noticed anything then (or any other time). Their backup, as witnesses, may be important to your being diagnosed correctly.
Best of luck to you!

#10 squirrel!

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Posted 18 August 2013 - 08:18 AM

Good idea ferret!

#11 DeathRabbit

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Posted 19 August 2013 - 11:06 AM

I get a weird face/jaw thing sometimes. Usually when I am both stressed and extremely brain foggy/headachey. I think it may be related to cataplexy. Although, I've wondered if perhaps I am suffering from Bruxism.



#12 ironhands

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Posted 19 August 2013 - 11:24 AM

Everyone falls when they laugh?  I often laugh when other people fall, but I don't think that counts :P

 

Though, rolling on the floor laughing is a common expression.  My whole body feels week about 1-2 times a week around 5pm, but it's not to the point that I fall down.  I'd always thought cataplexy required a complete loss of strength, that's only happened to me once, in the shower, no emotional trigger, and may not have even been an attack.

 

EDS is my only really strong symptom, other than a very low REM onset latency.  occassional aural hallucinations before I sleep, I'm very mild comparataively.



#13 Ferret

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Posted 19 August 2013 - 01:34 PM

There is usually an emotional trigger for cataplexy. For me, it's usually laughter and mirth but I have also experienced it during anger and observing injustice, frustration, fear, extreme overwhelming sadness when crying (for the loss of a loved one) and as a startle response (like to a loud unexpected noise or someone sneaking up on me).
I have a hard time coming out of it on my own but if someone grabs my hand or gives me a hug then it's easier. I like to think of them as "grounding" me...perhaps it's just the security of knowing that I'm not as likely to hit the deck like a sack of potatoes.

#14 Beckylaine

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Posted 19 August 2013 - 04:03 PM

EDS is my main symptom. I've been falling asleep behind the wheel since i was 18(now 31), ive tried to ignore it for the past 9 Years. But Im tired of "living" this way. I'm going to get a copy of my sleep study results next week when I see MD.

#15 DeathRabbit

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Posted 19 August 2013 - 04:39 PM

Cataplexy isn't an all or nothing thing. In fact, they're coming to believe it's possible to experience cataplexy solely with the cognitive and mood symptoms with no loss of muscle tone at all. It would certainly explain how when I get stressed or angry, I get hit with a wave of brain fog so bad I can barely remember my name.



#16 Phoenix

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Posted 19 August 2013 - 09:06 PM

I was just diagnosed with narcolepsy three days ago. My main symptom is EDS. I fall asleep while driving and at work if I'm sitting down. Not so much falling in a deep sleep but nodding off. I've also had a few episodes of sleep paralysis and almost always dream when I nap. And I never sleep all the way through the night.

#17 ironhands

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Posted 20 August 2013 - 11:09 AM

I've been wondering more about my "hunger attacks" and whether they could be related to cataplexy or N in general, due to the connection between orexin and ghrelin.  I get hungry and feel weak.  Jaw tenses, salivate a lot, and I can't focus.  Blood sugar remains normal - thought it was hypoglycemia.



#18 squirrel!

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Posted 20 August 2013 - 12:01 PM

This is so fascinating to me. I totally agree with you death rabbit, especially about the stress/ mood brain fog thing. I can totally relate to that.

And iron hands, I have been diagnosed with hypoglycemia as well, but I always felt that wasn't the right diagnosis. I remember one time having an "episode" and feeling shaky, can't focus, sleepy, etc. I had my sugar tested and it was fine!

It's all a big puzzle isn't it?


Thank you guys for your comments!

#19 ironhands

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Posted 20 August 2013 - 12:19 PM

Same with me.  When I was self-testing, I was getting around 3.6, maybe the odd 3.4, but recently, after not being on any sugary foods, I test around a 4.  All of this does seem to tie to one central chemica, orexin. 

 

The brain fog/stress thing can be attributed to stress/depression, again, possibly related to orexin.  Not sure if it can be related to cataplexy, but deathrabbit knows a hell of a lot more about this than I do, but, it certainly sounds very plausible.  Instead of triggering the musculature response, it's triggering a different sort of reflex, based on the same basic mechanic.  There's still so much unknown about N, and orexin in general. 

 

Hell, until a week ago I thought narcolepsy required complete cataplexy/falling asleep in your soup.

 

I haven't been diagnosed yet, still not sure if I will be, as my symptoms are very very mild compared to others, but I do seem to have a lot of the symptoms; and hopefully they acknowledge that it isn't just severe depression.  I don't want another round of anti-depressants.



#20 squirrel!

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Posted 20 August 2013 - 12:27 PM

Good for you fo standing p for yourself.... I've done the depression dance too, knowing that wasn't my issue. Best wishes to you!