Відео

Thank You

Thank you for the video! My cataplexy would prevent me from doing something like this. So for those that would not be able to it’s good to hear someone talk about it and explain it first hand

Thank You ❤️

Thank You. You are very sweet helpful ❤ the cataplexy exhausting

Monster Java has been my best friend for years now

Jumping jacks, push ups, or running in place works really good for me. Do you have a hard time getting motivated?

Thank you! I’ve been taking Vyvanse for the past 2 years and before that was taking adderall. My doctor is trying to switch me to provigil and it’s just not doing it. It’s kinda throwing me into a panic because I have things to do and I’m falling asleep by noon! The doctors don’t listen either! Ughhh! About to watch your other videos now too!

Omg I totally do the peppermint just like you are saying. It burns but that’s exactly why it helps me, specially when driving.

I can relate so much! I have had an alarm set up that had a daylight alarm, then music, then a space heater and a very sudden bright light. Decades of trying to figure out what alarm works... that combo is pretty good but I'll still sleep through it sometimes. It's real good for the winter though, sweating helps me wake up.

I used to have to hide my alarm clock each night before bed, because I never remembered getting up and turning it off. Lol Buda lemonbalm tea, or olly "goodbye stress" in the evening helps a lot. Over the years I've done simular things you mention here, Thank you for your video💗

I was told not to mix caffeine with my medication. Was anyone else told that? I’ve never done it but if it doesn’t have that much of a negative effect maybe I’ll try it out.

Even though I was diagnosed with/narcolepsy as a teenager I’ve told friends, family, & the doctors that I can drive as long as I get a good night’s rest & I get some caffeine in my system. I’m able to function throughout the whole day just fine that way. If I can prove that I can function just fine by either by myself or with someone riding w/me, I don’t see what the big deal is. It’s just been my experience that pharmaceutical meds they either, too strong, not strong enough, they wear off at a certain time during the day or they present too many symptoms/side effects…..

I would suggest taking digestive enzymes with your food.

Bluetooth headband- ahha! thanks! Didn't know those existed. I'm looking to use binaural beats to attempt to trigger myself into Delta. My sleep study showed I never enter slow-wave (N3,N4) sleep...

I think this has been happening to me the last 6-8 months. I will be de-stressing from the day in the shower, maybe listening to music or a podcast. I’ll be going thru the motions of washing my hair, conditioning, etc--my whole routine. I feel like I “space out” because next thing I know is that I’m questioning whether I conditioned my hair already, or did I rinse out the conditioner and forget? Other times I seem to be forgetting where I put things, and I’m not a forgetful person. It feels like I get “lost in my head” and then I have to backtrack to see where i may have put the “lost object. “ I have narcolepsy with cataplexy but wasn’t diagnosed until 45, but I’ve had this diagnosis my whole life I just didn’t know I wasn’t “normal.” It’s helpful to hear other people’s experiences because they vary from person to person and we don’t always fit textbook definitions. Thank you for sharing your experience!

❤ hey, thanks for sharing your experience… I just found out the wierd thing that happens to me is cataplexy… I thought it was an overkill of bliss in the body that shuts down my nerveous system..

I would love to know how much your quality of life improved on the medications % wise

This was extremely helpful thank you for posting this.

I’m 32 and just now learning i have narcolepsy 🥲

Thank you so much for this information! I am definitely going to mention some of this to my doctor. Also, your hair is beautiful!!!

My husband has narcolepsy and it’s so severe he can’t drive or do anything… if anyone can help plz message me

Just wanted to say you are so beautiful , I hope your significant other is cognizant how much a catch you are! You are intelligent, sexy, emotionally aware, and have empathy. A woman like that is rare these days, given the chance in a galaxy far away, had I found a girl like you I figure we would literally do nothing but sleep in bed all day =/.

Thank u for this information video! ❤

If I play music that helps me get up . Not sure why. I also have narcolepsy 2:13

My ex broke that clock it was my saving grace ugh

Thank you for sharing your experience. I’ve been living with narcolepsy for 14 years and have struggled with it for most of those years. Not a lot of people understand narcolepsy and it was hard for me to accept it as well.

Try low dose naltrexone

Thank you for this video. I'm literally just finding out I may have this..and my narcolepsy was triggered cause of a car accident injury cervical herniated disc which is pressing on my brain stem affecting my nerves I'm in phase of recovering however, the insomnia is terrifying because I am going IMMIDIATELY into REM upon sleep with vivid lucid dreams or and nightmares and waking up only after , like 2 hours of sleep. Baclofen is a no go because of the long term side effects, if one googled can see what they are

Having a Shitastic narcolepsy day and desperately searching for natural remedies at the moment. Everything you talked about (daylight alarm clock, peppermint oil, ASMR, etc.) is everything I have been doing/trying. I have only ever met one other person with Narcolepsy so it’s refreshing to listen to someone who understands the disorder. And now there is a National shortage of the medicine prescribed to me so my pharmacy is struggling to get it for me….and I’m out of pills. One thing that sort of helps is that I make my own capsules filled with essential oils that can be ingested. I use Rosemary in a capsule (also found this helps if I apply to the base of my skull because essential oils can cross the blood/brain barrier much quicker than meds traveling through the system). I’ve even had my reiki master tell me to connect with my ancestors and “return” the narcolepsy to whoever passed it on to me. Yeah…haven’t been successful with that one. It feels extremely debilitating at times and it is getting increasingly worse now that I’m in my 40’s. No one in my life understands this and I can read it all over their faces when I talk about it. My partner snores so I had to move to a different bedroom. He was rather disappointed by this, but I wanted to murder him. Once I am asleep, I cannot be woken or my brain says, “oh, cool. You’re awake. Let’s get started.” But it’s 3am. So I lie there and eventually fall asleep, but my alarm is set daily for 5:00am. When my alarm goes off, my brain says, “Oooo, sorry. You only slept for an hour last night. Good luck with that today.” Which is where I’m currently at. My 40’s have thrown me some curve balls with sleep cycles so that’s been special. I physically feel ill and drugged with horrific brain fog all day. Trying to explain this to others sounds totally crazy. And if you talk about circadian rhythm, even with the people you have lived with for years, you can totally tell they’re not buying it. I’m eager to watch your video on vegan diet. Thanks for creating your channel. It’s good to know there are others out there riding the same struggle bus.

I smoked weed about everyday for 10 years and never knew I had narcolepsy. It wasn’t until I quit weed thinking it wasn’t doing be any good but of course months later I started to experience extreme narcoleptic symptoms. Come to find out I have narcolepsy. I never knew I had it bc I smoked 247 and never had issues going to sleep bc of it. Now I smoke at night no problems. I suggest smoking a few hours before bed.. I guarantee you will get sleep

My husband and his dad and sister have it and he took on a new job that’s an hour drive. Any suggestions?? Medication??

The ones that hit you out of nowhere are scary though. I’ll finish up a job, sit down in the truck to fill out work orders and invoices, next thing I know, I’m slumped over and it’s been almost 2 hours. 😂 Truck idling and I’m concerned the home owner caught me snoozing. Walmart parking lots too. It’s almost a guarantee that I’ll at least nod a few times anytime I sit down.

Hello, nice video, I have asked for baclofen to my doctor two months ago, and she approved, and it's working out really well. Thank you for that. I mean EDS seemed like impossible to get rid of, probably the sleep quality is the most important thing, that's why baclofen ( my dosage 20mg but recently 30mg) helps. I have scanned the Narcolepsy Support Group a lot, but you really touch the essence of the problem(I studied philosophy). Sleep quality, med breaks, ritalin(also works for me I also use modiwake, also have ADHD). Couldn't work for some time just because of EDS. But I believe I still need time. I have used Xyrem, I can say it is giving you a good sleep and you wake up and say, "I am alive again." I strongly suggest you try it, I gave up the med because no appetite, nausea, feeling bad( sth like headache and you're unhappy), anxiety and worrying too much. 6gr was working well, but too many side effects made me lower it down to 4,5gr, also ran into a bad batch(probably pharmacy kept it in a fridge or sth). I recommend it because life is hard, and with EDS, you can't do your best, I need to work for example but I can't, and if xyrem was working, I would also be, my xyrem experience is bad but I recommend trying.

Some of my automatic behaviors have been cooking. The other day I was walking and don’t remember anything. Fortunately my wife was with me

Sometimes I think I hear music when I have my hallucinations, I agree the hallucinations are scary as heck Sometimes!

i love this video, the automatic behavior i experience the most when sitting is my hand continuing to draw when i'm making art in my journal. its the same for me with an increase of microsleep when i'm already getting tired. one thing that happens to me is i'll be in conversation and my speech suddenly slows and can be entirely incoherent. i've been considering talking about these things as you are, i think we all need awareness to increase on these things.

Hallucinations can be very confusing. Some are very obvious, but some can even happen in the middle of the day and when talking to other students about 'why would the teacher say this, i think it was kind of rude.' , the person that became unwell when seeing the kidney dialysis procedure, after i heard her saying that 'as a dietician you should be ok with watching this', she was very upset when i told her and two other students told me they didn't hear her say such a thing.

Narcoleptic sister here 💞 I remember one night not being able to sleep due to trying a new prescribed medication and made a HUGE sandwich to make me fall asleep. Worked. But the next day learned that just eating turkey lunch meat would have been enough to trigger a small response and make me tired. Ah! Was writing this while still watching the video, Vegans don't eat turkey! Well it was the L-Tryptophan in it that did it. So I stay away from any foods with that in it during the day. Excite I found your channel!

Are you experiencing any angry issues?

I eat :( I get up after sleeping and I raid my fridge.

I've started using a carb blocker called sugarbreak, it's helped me so much with not getting sleepy after eating a meal

Heyy I need to talk to you because I have that sleeping disorder that mess up my life big time

Good video, I have narcolepsy also

Did the shock watch work.

Did the shock watch work?

wow- our stories are so so similar

high herb ratio edibles. but you have to test it. also if I go over it can trigger my anxiety. but focus can occur after 2pm. You are looking nicely in shape btw.

Ugh why is it so expensive to even get medical help and I feel like half the time they think your just trying to get on drugs! I was on adderall in high school for a little while my parents had tried to get me help with my sleep issues and always falling asleep in school but then I was set on joining the navy after high school and my recruiter made me get off the meds.. I was fcked in boot camp, got in so much trouble for always falling asleep but I somehow made it through and ended up doing 8yrs active duty.. now that I’m a civilian I’m trying to actually get some fcking help so sick of always sleeping and needing naps.. ugh

You explained it perfectly. I’ve had Cataplexy my whole life but didn’t know that’s why it was until I was well in my 40s Now I know, I’m like that explains everything

If you eat a food trigger while on these meds, you still get sleep attacks?