Narcolepsy & Brain Fog

On March 31, 2021 Project Sleep hosted the third Narcolepsy Nerd Alert broadcast to explore brain fog, automatic behavior, and micro-sleeps. Featured speakers, Dr. Kiran Maski and Shannon Burkoth, shared insights and strategies, and community members from all over joined the discussion to talk about their experiences with narcolepsy and brain fog.
Narcolepsy Nerd Alert is a monthly live broadcast diving deeper into specific topics related to narcolepsy. Hosted by an award-winning geek, Julie Flygare, each live event invites fellow #NarcolepsyNerds​ to explore unique aspects of the narcolepsy experience, contemplate bold questions, and learn from each other.
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[@dawnr7798]

I didn’t even understand I was having microsleeps until I heard patients with narcolepsy describe it. It’s kinda sad for us that we deal with this.

[@Jamal-nr7su]

Tips for managing start at 37:38

[@happyh0lly]

Hear you guys talking about the different things you have experienced with brain fog, micro sleeping, automatic behaviors is in a way validating to me as I struggle to express what I go through daily. The way I verbalize my brain fog is it feels like you are doing tasks intoxicated in a way. I feel like nobody really understands what this is like and the struggle caused by this disorder

[@badigalinkin6461]

I have had narcolepsy since i was a kid now i am 51. Narcolepsy with atypical cataplexy. My automatic behaviors have been while walking, doing dishess, cleaning. Always with no recall. I don’t drive. When i was working the problem came i was seen as lazy or I didn’t remember instructions or auto while doing work. The repeating thing frustrated bosses and i lost job because of it. Sleep paralysis is something I thought was normal but not. The vivid dreams are actually pretty cool. I take modafinil twice a day it helps but not bullet proof.

[@badhooch]

I believe the reason why brain fog isn't listed higher is because it's become the norm when you've lived with it for so long. For me it's definitely high on my list as I still get the odd day of mental clarity, then I strive each day to experience it again lol.

[@mayflower2158]

Yeah I didn't like how the doctor referred to sleepiness as not having the ability to stay awake. I don't feel that is what sleepiness refers to, especially for many narcolepsy sufferers. I agree that the language doctors use can be very dangerous in not getting undiagnosed sufferers to seek help. And then her words were picked up on & the concerns highlighted, she seemed to refer the ladies mention of fighting against sleep as fatigue. This is the huge issue when seeing doctors sadly, sufferers are not being clearly listened to. There is a difference between fatigue & sleepiness, and what the lady described to me was clearly sleepiness, & what I believe many people with narcolepsy are experiencing as a symptom. Falling asleep and sleepiness are infact different things in my opinion, but the way she said it was as if they had to go together in order for it to count. Also it was quite upsetting hearing her word falling asleep as being more if a concern, the way it was said felt invalidating against other narcolepsy sufferers, who don't all FALL ASLEEP! This representation needs to change! Any symptom should be of high concern, depending on the degree suffered, not just a specific symptom. Somebody who is for example constantly sleepy/drowsy, but not necessarily falling asleep, could be in just as high struggle and risk of serious harm and affect of quality of life as Somebody who happened to have fallen asleep during the episode. To me I don't see why one should sound to be placed above another. Which to me id what she did. I really do feel doctors need to be more educated on patients symptoms and word symptoms to the public correctly.

[@graciehoff56]

Its real Its not laziness

[@graciehoff56]

Love crafts organizing

[@graciehoff56]

Im from Arizona GraceHoffman .

[@kriscree8627]

First diagnosed with narcolepsy in Boston, MA then in Florida. I can relate to this good information. Having difficulty getting ongoing medical care for this problem though.

[@angelag2]

It’s 5 am and I haven’t been to sleep

[@tonynunez6539]

The more I learn about narcolepsy the more I understand why I've been going to doctors for help for over 30 years. Doctors never test or diagnose correctly.

[@sicilyny5375]

I'm a nerd in many ways, a book nerd, especially the classics and 1st editions, pen, marker nerd( as a writer I use them all and as a nurse I color coordinate daily) stats nerd, and abstract nerd, I read every health abstract I can and narcolepsy lately( all brain issues mostly, I'm a psych nurse)

[@anaskanhouch478]

I think symptoms are different from one to another. I like to sleep a lot like more than 12 hours, and if I sleep 6 hours, it feels like I didn't sleep at all. I could fight falling into sleep, but I can't resist in car and even micro-sleep happen alot tome while driving. After taking Prozac and changing my diet, I don't have micro-sleep anymore, but brain fog still really frustrating me. My brain fog symptoms increase due to my job, I work as software engineer and set in front of screen for 8 hours daily.

[@blessing6096]

How do you cope with this and fight back to stay awake

[@blauwzakjecrack]

i`ve developed (some sort of) narcolepsy by a sudden change of daily exercise at age 18. I used to commute on bicycle 30 km everyday (as fast as possible) when i relocated is did not bicycle anymore. then in about 3 months time i developed a sleep disorder, i could not possible wake up from sleep + i could sleep (easily) for more than 12 hours straight and still feel tired. When this developed i also experienced a complete lack of motivation to do anything, i remember sitting on a chain onfron of a television not really paying attention to the t.v. then my girlfriend came over being really sweet and caring and trying to make the best of it (without knowinbg what was happening,i did not know why and what) was happening) and me not responding to this at all.Needlessly to say that we broke up some months later. Exercise did use to decrease the sleep disorder strongly in the first couple of years, but this effect got weaker over the years to such extent that it is not effective at all anymore. I can (basically) sleep anytime,everywhere, within minuets. With some small sugar intake i could sleep for 36 hours straight ( i experimented during lock downs) and stopped the experiment because its a waste of time,i feel that i could sleep for weeks for as long i just intake a little bit of sugar (50 grams orso?)every 8 hours. I can avoid (most of the time) to fall asleep when absolutely necessary (example driving a car) ( idont have cataplexy) i cant always avoid wakening up from sleep (in 2008 i had a couple (5) of strong sleep paralysis experiences,feeling like a demon is forcing my body against the bed feeling/being absoluty paralysed but somewhat awake ) I got rid of this by allowing this to happen instead of fighting against it. Like,ah mister demon,you`re going to hold me down again huh, oke, do what you need to.Really interesting but absolutely weird. I did not know this was a thing after the fact,and surprised to learn that alot of people experience this exact same paranormal phenomena. i cant always avoid wakening up from sleep I never caught the flu in my life until i was 33 (just once), i caught covid (35)and was symptom free within 3 hours. I noticed that diet can severely amplify my narcolepsy,especially sugars and long-carbohydrates such as potato`s and wholegrain bread. I am athletically build and slightly more muscular than average whilst not doing any exercise,people compliment me on my physic and assume i work out whilst i dont (generaly) , i easily and quickly develop muscle growth when exercising. I care less about cold,but i often feel hot when having minimal exercise like walking, i quickly sweat,exceptionally on my head, but i do have long hair and a beard. Hope this information is usefull for someone.

[@GhostbrainFX]

This most helpful info I've came across ever based this narcolepsy thing. Thank you

[@biblebasher9364]

Do you think a person experiencing these loss-of-time episodes or daydreams can find inspiration in them? I can drift off in thought, seeing a clear way through a problem or issue or crisis, while working or walking, and come out feeling inspired, refreshed,(especially since I don't remember the physical activity itself) and gifted....am I the only person experiencing this? I have to let myself drift off mentally multiple times a day, staring at the wall works just as much as staring at the stars, as I drift through these thoughts solving problems....is this the same thing? Because these things make me feel better. As if I need to do that as if I'm taking a restful nap....I could just have brain damage haha

[@biblebasher9364]

Watching from the Gateway to the Redwoods. I experience daydreaming while actively working. I can be doing excruciating work, but drift off mentally into a speech I am giving to people as if I am a motivational speaker! It motivates me and then suddenly I realize that I'm done washing dishes or pulled ALL the weeds from the garden or finished 2 times more firewood than I expected.....thats pretty freakin' awesome if you ask me! I'm a recovering meth addict, 8 years off the needle this month of 2022, thank you very much, but began experiencing sleep paralysis once getting off the dope. I figured it was damage to my brain from partying sooooooo hard my early life. I haven't received medication for this, but imagine my surprise when I discovered amphetamines were used to treat narcolepsy! haha ehhhhhhhh a piece of me still wonders if drug use can be a factor in development of symptoms. What about a tear in the meninges? Spinal fluid leaking into your body....can that eventually lead to development of such symptoms? Your brain sags lower than normal and who knows what it might cause, right ladies? I just Love that you are ladies.....ok im done....

[@graciehoff56]

I always worked in medical field but sure not able to do it anymore. Walking and sleeping at same time jumping back into my body. Ended up losing my job

[@tonynunez6539]

Brain fog is a nightmare. What was the question again?

[@graciehoff56]

My Bills started suffering couldnt focus

[@graciehoff56]

Cant drive after getting into accident. Very deppressing. Brain fog Bad

[@tabithahowsmon330]

Shasta county CA

[@tonynunez6539]

I didn't know I had a sleep specialist or narcolepsy specialist. Can I get his/her name/number, please?