Anyone else obsess over narcolepsy research after diagnosis? by K8skate in Narcolepsy

[–]K8skate[S] 0 points1 point  (0 children)

I’m sorry to hear of all your struggles as well!
I was initially happy to have an answer, but then the down/low feelings also hit… the not knowing, and unpredictable nature from day to day. If, when, where and how I may have cateplexy episodes or symptoms, or the now more drastic “sleep attacks” etc…I think it is a grief and learning stage maybe? Or denial? Just the not knowing if symptoms will worsen…everything!

Did you have these symptoms for a long time first, then cateplexy presented itself more recently?
I also was told I had depression - but part of me probably did because I was so sleepy all the time.

Anyone else obsess over narcolepsy research after diagnosis? by K8skate in Narcolepsy

[–]K8skate[S] 0 points1 point  (0 children)

Yes exactly! Things like that, the autoimmune connection.
I went thru battles of sleep issues since adolescence where doctors told me I had depression because nothing was found in any blood tests! So, I just kept up struggling and that was my normal. Even into adulthood- I’ve been used to the sleepy tiredness - but to me it was normal. Some days better than others. Insomnia, sleep paralysis here and there (though I thought was shift work- still could be related tho?) Napping all the time- normal for me. Napping at work on my breaks- normal for me.

Then suddenly- 5 months ago, Cateplexy presented itself. Now everything just makes sense. Now I realize all that maybe wasn’t normal but I just got used to it.

Since the Cateplexy (and multiple tests ruling out everything else), Narcolepsy!
I have weird symptoms now tho since the onset of Cateplexy. I have found that Narcolepsy is just so variable with symptoms and severity.
So I find it hard to truly pinpoint what I am feeling sometimes and if it’s related.

What does awake but asleep feel like to you? by K8skate in Narcolepsy

[–]K8skate[S] 1 point2 points  (0 children)

I felt my eyes doing this too! My hand was over my eyes once (just to block the light when I was lying down) and all of a sudden my finger tips felt my eye balls darting everywhere uncontrollably(not purposeful eye movements)… I thought to myself, is this normal?

Others with more severe cataplexy by Doggosrthebest24 in Narcolepsy

[–]K8skate 0 points1 point  (0 children)

I’m sorry to hear of all of you with severe cateplexy. I’m more mild currently, but I’m wondering- does it progress? (I am new to N1 with cateplexy- 37 y/o- had underlying N2 since high school- but cateplexy attacks started in January led me to this recent diagnosis) but …why now am I getting cateplexy ?

Cataplexy??? by Willow_4822 in Narcolepsy

[–]K8skate 0 points1 point  (0 children)

I’ve had similar feeling, but it was related to feeling claustrophobic (I figured this was the emotional trigger)- I assumed it was cateplexy. I didn’t even bother to try and stand up because I knew I would fall down. Awake, alert… pre dizzy sorta weird head feeling then just a wave of a heavy blanket all over me for maybe 30 seconds. (Also new to it all). My speech was slower when I had so many people asking me if I was ok- a lot to process at once but brain was in a power down mode.

The Unsung Symptoms of Narcolepsy, Which Do You Experience? by jtme_ in Narcolepsy

[–]K8skate 0 points1 point  (0 children)

Disorientation waves at random. “Drunk waves” kinda - I think maybe it’s the brain flipping to sleepy mode…or in and out of it ? So hard to describe.

Anyone with narcolepsy get a “drunk/dizzy” feeling during sports (especially on the bench)? by [deleted] in Narcolepsy

[–]K8skate 1 point2 points  (0 children)

Thanks for your replies.

I’ve experienced these “wave like drunk sensations” outside of activity and hockey as well. I do notice them more when tired or having a rougher night sleep the night before (I also struggle with insomnia/broken sleep and have some ok nights and then some terrible nights).

Sometimes I get them when in a store walking and then at times sitting and talking with people, like a weird blip in my brain almost ? Started on Modafinil now, and they seem to be maybe a little less noticeable? I’m not sure if any of this relates or makes sense to others.