Experiencing Narcolepsy

PWNs experience NC in many different ways with various symptoms.  I have been to many Dr appts where I was asleep most of the time I was there.  It might have looked like I was drunk because I was staggering around, slurring my speech and having problems concentrating.  It's especially worse.  Now I make sure I take something warm because cold temperatures will make me go to sleep.  Warm temperatures keep me awake.  Sometimes I will open my bedroom window when it's 30 degrees outside because I'm too warm.

What do I do?  I have to record my appt before my appt - describe my symptoms, what I need help with, etc - because it might not be comprehended from my speech while I'm there.  You might say - take an advocate.  That works well if the person I take is familiar with my condition.  The best advocate I had has Hoshimotos.  She knows what it's like to not be able to think, have memory problems and being dead tired and sleepy.  She could understand my problems


Below is how another PWN experiences narcolepsy:

Ok so when I have one of my worst days these are things I experience I want to know what some of you go thru I get everybody is different in every case but a lot of us feel that with narcolepsy the surface is merely being scratched so I'm gonna post a normal daily list also
On a bad day:
Irritability, struggle with using my hands to do things, I struggle speaking, i.e.. shuddering finding the words to talk pauses in speaking, losing my thoughts,
Memory, my legs don't work, extreme weakness, muscles move like jello
I get that dead numb empty feeling in my parts, almost collapsing I feel as if I'm shaking though I'm perfectly still, I feel extremely exhausted more then normal, to weak to move on my own, emotional, headaches, dizzy, blurred vision, hotter then usually to where I sit in a cold shower or open the Windows, "it's winter in Wisconsin pretty cold teens and lower"
Normal day: normal tired, ok strength, typically warm body temperature, tolerable RLS, IBS, numbness due to taking glutamate along with slower speech & motor skills, always losing things,forgetting stuff constantly,
Uncontrolled muscle twitching, and dipping when walking or standing I use a cane so I usually don't fall
"A week ago I was with my boyfriend he started to slow.dance with me n my legs kept dipping as I made my way to the couch got really tired I felt as if checked out for about 5 or 10 mins and then I was fine" I think it was an attack but I'm really not sure as it doesn't happen much I just get weak knees n dip a few times and that was the worst I remember???
All I can remember right now as yesterday was a bad day but I'd like to hear what some of you others go through as this is still kind of new for me