squirrel!

Only Symptom Is Eds? Anyone Else?

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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!

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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.

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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.

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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.

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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?

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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

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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.

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Sounds like cataplexy.

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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!

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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!

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depression is an issue for me, and most with N from what I understand, but anti-depressants made my symptoms WORSE.  Paxil had me hallucinating at night, and non-stop false awakenings and pre-lucid dreams.  citolopram had me passing out at my desk even with ritalin in the mornings.  My depression isn't "boohoo my life sucks", it's "I don't want to get out of bed to play video games today" or "I really don't feel like hooking up with my old GF tonight". 

 

I'll post what happens on Friday, since our symptoms seem similar.

 

How's your weight, and appetite?

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Ha! That was a great analogy.

I'm super healthy other than being dog tired all the time. I'm 5"8, 135. Kind of a health nut, except for migraines. Actully migraine meds is what landed me in the sleep center really... I couldn't take them AT ALL. If I took them, my legs weighed a thousand pounds and I was so sleepy, foggy and out of it. same with antidepressants, I tried 3.

Also, worth mentioning, was diagnosed ADD at age 22. mainly because I was so sleepy and overwhelmed. Took adderall for a bit, helped alot. Not sure if all of this is related.

I'm at the MSLT now, just did my 4th nap... They want me to stay for the 5th. Hoping that means they see SOMETHING.

Keep me posted!

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adderoll's often given out for N to deal with the EDS

 

UGH!  I was on wellbutrin for a month and threw it out.  I couldn't sleep on it.  I would be up for 3 days straight, pass out thursday night after work until friday morning, then come home friday night and sleep till monday.  I'd be falling asleep during work on thursdays as well, around 2-3, it was awful. 

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Idiopathic Hypersomnia said, "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."

And Ferret something to the effect of "cataplexy in its early stages."  

 

I'm not reading in any literature or any websites that cataplexy is progressive.  Can either of you tell me where you have gotten this information?  

 

I do not experience any of the jaw or head or mouth symptoms.  If I do have cataplexy, it is limited to muscle weakness in arms and legs when angry or afraid.  Like if I am angry at someone who has power over me (my boss, for example), my anger will be in combination with anxiety during confrontation. That combination gives me muscle weakness.  I only started falling once and was able to stand again when I was halfway down.

 

Ironhands said that "rolling on the floor laughing" is an expression, and so is "weak in the knees."  That's why I thought muscle weakness in my legs was normal.

 

Otherwise, I don't experience HH as far as I know, or sleep paralysis as far as I know.  EDS is my main symptom.

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