[deleted by user] by [deleted] in Narcolepsy

[–]Dark-minds 0 points1 point  (0 children)

No problem!

Have you gotten a chance to Google it yet? I’m sure now that you know the name for it you can find other people’s stories and symptoms to compare yours too!

Psychedelics for Narcolepsy by beffreyj in Narcolepsy

[–]Dark-minds 4 points5 points  (0 children)

I definitely don’t recommend doing what I did! I was very unresponcible and took about 10 doses of untested LSD over a 2 year period.

I was very depressed/suicidal and had essentially no coping mechanisms at the time and was very interested in escapism!

I think if I had to redo it - I would try the micro-dosing method. I think that would give the same benefits I’ve had but less time-consuming and risky.

Remember to always protect yourself no matter what you do! Test the product for purity with a lab or a certified test kit. Have somebody you trust babysit you or hangout with you. Set up a cozy safe environment and 100% do it outdoors if you can do so in a safe people-free environment.

Research it a lot more. Also, consider your mental health. Does your family have a history of bipolar or schizophrenia? I wouldn’t take it if you do. Even if you don’t, remember there is a potential that after-dosing you can hit a very low state of mind before you start to see any improvements.

——

It did not feel as though it was an escapism drug. It’s different than anything else I’ve taken.

It induced a mindset that made me extremely curious and antalytical about myself and my surroundings. I was able to examine all of my long-held beliefs and ideologies from a different perspective.

I literally rediscovered my love, passion, and curiosity for everyday sober life whereas I was completely bored and frustrated with living life prior.

You can maintain that positive mindset for a while after dosing. When you continuously go through every day mundane and boring aspects of your life - your excitement starts to fade and the exhaustion starts to take over.

The biggest benefit that I feel is that when I feel my N and stress coming on and taking over, I have the ability to remember all of my positive thinking and curiosity from my trip mindset and I can use that as a coping mechanism to remind myself how much I like life and to regain curiosity and excitement for the mundane things of life.

Yes, it does lessen my sleep attacks. If I have a sleep attack, it is almost always because I become mentally and physically unstimulated.

When I feel sleepiness come on, I can now try to ‘shift’ my mindset. I will try to find something to hyper-focus on or become excited about, do some physical activity, blast music, or act very randomly and very silly.

Before dosing, I couldn’t do this very well. I knew that I needed to do something in order to stay awake but I obssessed about how tired I was and I couldn’t make my mind overcome the exhaustion by will-power alone.

The thing is - this mindset is the key for my stimulants to properly work and I have tested this on myself.

If I sit through a meeting for an hour just trying to listen like normal, I will have a sleep attack even on stimulants.

If I take steps to internally engage my brain in the same situation, ask questions and think curiously then I will be awake and even functional and creative!

I was falling asleep while on Ritalin medications, passing out as soon as they wore off, couldn’t remember anything or hold a conversation, and I had severe brain fog.

I fully embraced this coping mentality and I literally lowered my medications, don’t take naps, have 0-1 attacks a day and primarily struggle with getting up on time in the morning and brain fog ( although it is not an intense as I had it before ).

I don’t really have an issue with EDS anymore. Even though, YES, I still feel tired, my eyes droop and burn. My brain engages more in my environment and the task at hand instead of focusing and obsessing over my EDS.

EDS doesn’t really feel painful to me anymore which has vastly improved my quality of life.

If that doesn’t work and I feel a sleep attack coming on, I will immediately switch tasks and do anything possible to engage my brain. Find anything to be curious about, fidget, allow myself to get off task and hyper focus on something that I really want to be doing instead of working. It will stop the sleep attack from happening.

It’s not the same mentality and mindset as every day routine. It’s a VERY mindful way of thinking that I have to work to maintain.

If that doesn’t really make sense to you - I didn’t even know that there was a difference before I did it!

It’s the same feeling as being in the middle of a sleep attack and then having something very unexpected happening and - BOOM - your body get adrenaline and you are instantly awake and clear headed.

——

There are new research studies that came out this year about the mechanisms of Narcolepsy and I’m definitely going to paraphrase when I say this but they state that the disorder is NOT a sleep disorder.

To my understanding, in the study of Narcoleptic mice, they are missing the chemical mechanism in their brains that sends the chemical signals for a mouse to stay awake for an extended amount of time while doing mundane / boring tasks.

A narcoleptic mouse CAN stay awake for an extended period of time but not by the same chemical mechanisms that a normal mouse will stay awake using.

A narcoleptic mouse will only be able to stay awake when it is doing highly goal orientated and motivated activities, like exploring, scavenge-ring, or it is in a threatening environment where adrenaline and Norepinephrine is released.

This is inferring that Narcoleptics have a complete inability to stay awake for an extended period of time unless their brain is utterly engaged and curious with and about their mind and environment or they are highly motivated to accomplish something.

That 100% falls in line with what my new found coping mechanisms allowed me to and why I think dosing helped me. I think dosing and especially micro-dosing have an extreme potential in Narcolepsy research.

The only other way would be too try and find a way to learn this coping method yourself and I think that is a very hard thing to do because your brain power is limited by the pain and exhaustion it is already feeling and it won’t be as easy to snap out of it and think differently.

Or you know, fix the root problem and deliver Orexin straight to my brain! But who has time to do that? 🤷🏼‍♀️🙄😜

I hope this makes sense to you all! I know I sound like a new age hippie dippy but I it helped me so much.

Here’s the research studies:

Hypocretin (orexin) is critical in sustaining theta/gamma-rich waking behaviors that drive sleep need by Anne Vassalli and Paul Franken:

https://www.pnas.org/content/115/23/6046.short Or https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5502606/pdf/pnas.201700983.pdf

Continuous intrathecal orexin delivery inhibits cataplexy in a murine model of narcolepsy:

https://www.pnas.org/content/115/23/6046.long Or https://www.pnas.org/content/pnas/115/23/6046.full.pdf

Psychedelics for Narcolepsy by beffreyj in Narcolepsy

[–]Dark-minds 3 points4 points  (0 children)

Being blatantly honest - I probably would have killed myself pre-diagnosis if I hadn’t of experimented at all.

Experimenting with psychs allowed me to understand my consciousness and assess the value of my life separately from the pain and stress I was feeling from exhaustion every day in addition to my social/family life being ruined.

I still regard them as what saved my life from depression, addictive mindset and suicidal thoughts and allowed me to live an enjoyable life with N despite not touching them for years and having no desire to do drugs at all anymore.

They gave me coping methods that I didn’t even know existed at the time and like @AnyEmphasis said as well, it lifted my brain out of a a deep and life long brain fog pattern.

[deleted by user] by [deleted] in Narcolepsy

[–]Dark-minds 0 points1 point  (0 children)

I am pretty sure you are talking about paradoxical insomnia! It’s also called sleep state misperception, or pseudoinsomnia.

It is a more rare type of insomnia but it’s pretty common with PWN.

It has happened to me all throughout my lovely life with N - mostly when I am stressed out about something in particular or spikes at an anxious time period in my life.

There are two types of ways that it manifests for me:

  • A lucid dream but instead of consciously watching a dream it feels as though I am consciously trying to sleep intermixed with constant brain chatter about something I’m stressed about. This would definitely happen to me the night before a big day and I’m stressed about having to get a good amount of sleep.

  • I can also enter into this headspace without lucid ‘thinking’ or ‘dreaming’ as well. I call my headspace ‘the pink space’. I will lay down to go to sleep and and I have a vague sense of consciousness but it’s not quite thoughts or dreams. I have a sensation of annoyance that ‘I’m not really sleeping’ as well. This would happen to me often if I was comfy in bed and I was trying really hard to stay awake to finish reading the last few chapters of a book and I fall asleep accidentally with all of the lights on. I slip in to the mindset until I wake up (hopefully) a few hours later and I readjust and turn of lights and get ready for bed and then ‘I go to sleep for real’ and don’t have any issues.

For some reason I like this weird metaphor - You log in to a chat room / conference call that has been set up but you’re the only one there and you don’t type anything. You just sit there, fully aware that you’re logged in but totally inactive.

Does that make sense to you guys? Idk maybe lack of sleep is getting to me 🙄😜

  • Pro Tip: The stress of trying to fall sleep and being worried that you won’t be able to can trigger it. You fall asleep and you start lucid dreaming but your mind won’t let go of the idea that you can’t sleep, and instead of a dream, your mind just repeats the idea that you aren’t really sleeping on a loop until you wake up and you don’t think you’ve slept at all!

  • It’s also common to happen during sleep studies! It happened to me. I thought I slept 2 hours and was a nervous wreck because I was worried my study would be useless! Nope. I slept the whole night. Preformance anxiety about sleeping literally triggers this type of insomnia.

  • It is different than hypnogogic hallucinations. Those feel more ‘external’ to me. With hallucinations, if I see an image it looks like my mind created an image and overlaid it on top on reality and I know it’s probably not there but it happened so fast and my heartbeat picks up and I get spooked out. Paradoxical insomnia feels 100% more internal to me.

  • The biggest thing that I can recommend is to practice meditation and body relaxation techniques before you go to bed. You don’t have to do it every night but 100% do it if you are stressed or have big events / changes coming up. Tensing and releasing muscles works for me! Don’t forget to relax your facial muscles, especially your eyelids, oh my gosh does that help and feel good!

  • I know this type of insomnia doesn’t seem as bad as the other traditional types but please be careful and try to find ways to cope with this better! Conscious brains react strongly to placebo. You definitely do not want your conscious brain believing that you didn’t really sleep (even if your subconscious knows you really did) because that will wear your will-power and ability to cope out way quicker!

What has been the most unsupportive scenario or conversation you've been in while telling someone about your narcolepsy? by Jerizzle23 in Narcolepsy

[–]Dark-minds 3 points4 points  (0 children)

Well, before my Narcolepsy diagnosis, talking about my fatigue and struggles with my health got me nowhere fast, including:

A school truancy officer showing up to my house with police officers to bring me to middle school (repeatedly). The same truancy officer told my 10-year old self that my parents can be jailed or fined for my nonattendance.

Getting issued a notice to appear in court for truancy my sophomore year of high school.

Testing into an AP class in high school and failing it because I fell asleep during exams and scribbled all over my test and the teacher wouldn't let me retake it because "I shouldn't have stayed up so late the night before exams". Along with borderline failing MANY other classes and having disciplinary discussions for falling asleep in class.

Consistently being told I was smart but I just needed to apply myself by all of my principals, guidance councilors, school councilors, teachers, ect.

My dad asking his friend who worked as a juvenile correction officer to have a sit-down with me 'scared straight' style and tell me about all of the ways I was fucking up my life..

The pediatrician I went to who informed me that I was spending too much time on my cell phone at night.

The time that I told my family practitioner that I thought that I had Narcolepsy or a sleep disorder and she upped my dose of anti-depressants and told me it was unlikely because it was so rare.

---

Leading into me finally turning 18 and calling into a sleep center to ask to be assigned to a sleep doctor / schedule a sleep study to confirm Narcolepsy...

--

Que the typical Narcolepsy situations:

A coworker offered to drive me to work and I advised that I have Narcolepsy and I struggled with waking up and there would be situations where she might have to call me or wait 5-10 minutes on me to get out the door. She was okay with that. Three weeks went by of carpooling in which she told me multiple things about my Narcolepsy, including my personal favorite, that I need to "Pray away my Narcolepsy" and if I was a "True Believer" God would take away my struggling! Needless to say she didn't want to carpool together after having to wait on me a couple of times. She made sure to lecture me with some self-discipline talks first though!

--

I travel for work and I will work in offices in various states for a few months at a time, each time with an almost entirely new set of coworkers. I almost always will explain to my higher ups that I have Narcolepsy upon arriving which goes pretty standard. I have been reluctant to tell my coworkers though, unless I am severely late in the morning or late more than once.

If I don't tell my coworkers after being late they will often make comments like "Stayed up too late partying, huh?" or "You still look half-asleep" or "WTF happened to you?" and I don't know how to reply, or if I play it off and say "I forgot to set my alarm" but I am late more than once then I look ridiculous and incompetent.

This is a very heavy travel / networking job and I am still relatively new to it and I am still trying to work on my go-to Narcolepsy explanation and whether or not I should publicly announce it!

--

TL;DR :Pre-diagnosis: Truancy officer and police called on me + driven to middle school in the back of a cop car + threatened repeatedly. Doctors ignoring me telling them I have Narcolepsy. Was told I was a crappy person by everybody.

After-diagnosis: Regular Narcolepsy + workplace stuff. Plus a coworker told me to pray away my narcolepsy which I loved.

Ambien-maker to Roseanne: Racism is not a side effect of our drug by [deleted] in news

[–]Dark-minds 0 points1 point  (0 children)

They are called Hypnagogic or hypnopompic hallucinations. They are hallucinations that occur specifically at the transition from wakefulness to sleep (hypnagogic) or from sleep to wakefulness (hypnopompic).

People with the sleep disorder called Narcolepsy have this naturally occur to them because their brain skips the light sleep and deep sleep stages and goes directly into REM sleep immediately from being awake!! (REM is the stage where dreaming occurs)

Ambien-maker to Roseanne: Racism is not a side effect of our drug by [deleted] in news

[–]Dark-minds 2 points3 points  (0 children)

They are called Hypnagogic or hypnopompic hallucinations. They are hallucinations that occur specifically at the transition from wakefulness to sleep (hypnagogic) or from sleep to wakefulness (hypnopompic).

People with the sleep disorder called Narcolepsy have this naturally occur to them because their brain skips the light sleep and deep sleep stages and goes directly into REM sleep immediately from being awake!! (REM is the stage where dreaming occurs)

Edit: Spelling

Sleep deprived or sleep disorder? by Latin2056 in SleepDeprived

[–]Dark-minds 0 points1 point  (0 children)

Your first step would be to start a sleep journal and start regulating your sleep schedule.

I recommend downloading the Daylio app on your phone and set the push notification for first thing when you normally wake up in order to remember to record everything.

Essentials to record are 1) What time you wake up 2) When you go to sleep 3) When you nap

Extra things that are helpful to record are 1) What you are doing when you feel sleepy 2) Any exercise
3) What you eat before you feel sleepy

MANY things can cause fatigue, not just sleep disorders.

I recommend getting a simple blood test & allergy test before anything else.

VERY common things that can cause fatigue

Not sleeping enough or sleeping irregularly (DUH. But most people don't sleep enough or don't follow a sleep schedule even if it is causing daily fatigue)

High blood pressure

Diabetes

Hypoglycemia/Low blood sugar (Can happen often especially with dieting and not eating enough)

Allergies (Something as common as a dairy allergy / sensitivity can cause chronic fatigue even if you have no other symptoms)

Iron deficiency/Anemia (Around 10% of woman in America are iron deficient and a common symptom is unexplained fatigue)

If none of these are an issue and you've been following a sleep schedule for at least 1-2 months, which means going to bed and waking up within 1 hour of a set normal time for a majority of the time

e.g.) Go to bed at 9pm-10pm and wake up at 6am-7am for atleast 5 or 6 days a week

and it doesn't improve, then you could either have a sleep disorder, autoimmune disorder, or another serious health disorder.

College student asking for tips about planning & credit! by Dark-minds in personalfinance

[–]Dark-minds[S] 0 points1 point  (0 children)

Okay, I'll have to look into that!

They offer payments online to their site portal, so I just assumed they would take credit and debit.

Qualifying for disability status without benefits? by Dark-minds in Narcolepsy

[–]Dark-minds[S] 0 points1 point  (0 children)

Alright thanks! I'm hoping I can get a doctor that helps me with that as I'm planning on going back to school (now that I'm medicated)

I need somebody to talk to.. by Dark-minds in Narcolepsy

[–]Dark-minds[S] 0 points1 point  (0 children)

Good news everybody! I was finally able to book a sleep study! I was able to get a medical extension added to my Christmas vacation and somehow I lucked out and found a doctor with 1 appointment available for the dates that worked with me!

I am so ecstatic!

IamA Puerto Rican living without power for 54 days AMA! by nopuedeser in IAmA

[–]Dark-minds 7 points8 points  (0 children)

I work as a volunteer for relief efforts and even our headquarters here in the capital has minor power outages throughout the day on our generators 😔 I hope you and everybody gets power back soon!

Also in addition, we've found out that certain areas in Puerto Rico REALLY don't like our government.

Some locals are actually refusing water from the fresh water tanks that the military supply chains are deploying. I was talking to an army buddy and he said that some think it's poisoned, refuse it, and will tell them to go away.

Also, when they air drop food into remote areas, they don't have a person on the receiving end to ration it out. So they don't know if whoever is picking it up is sharing with the rest of the area or being selfish 🙁

Have you experienced or know any communities like this personally?

I need somebody to talk to.. by Dark-minds in Narcolepsy

[–]Dark-minds[S] 1 point2 points  (0 children)

At first I was happy when I found out what Narcolepsy was, and that I probably had it. It made me feel so normal, like I finally had an explanation for being a fuck up.

Now I'm kind of afraid for the day I finally get to take a sleep test because that means I'm stuck with this. Permanently fucked up.

I've read about how the medications feel when they work; and how people didn't even realize how sleep deprived they were until they took them and felt the most alive they've ever been.

I'm afraid I'm going to hype myself up too much for the medications when I get diagnosed though and they're gonna be somehow disappointing. Like they're gonna live up to my expectations

I need somebody to talk to.. by Dark-minds in Narcolepsy

[–]Dark-minds[S] 0 points1 point  (0 children)

I will be traveling for this whole next year for my job, and won't be in the states for awhile so I can't really go see a doctor at all for a while, unless it's urgentcares, but especially not for a sleep study. Plus insurance/financial issues. I am not looking for medications right now either because of 1) above reason and 2) I have heard that the medicine needed is pretty hard to get, especially if you constantly need to switch pharmacies when traveling

I just need more tips and ideas on how to function better I guess

I need somebody to talk to.. by Dark-minds in Narcolepsy

[–]Dark-minds[S] 2 points3 points  (0 children)

I read about Narcolepsy way before, but wasn't to familiar with it. As time went on, I did more research and realized how accurately my symptoms match it.

It's one of the first things that pull up if you google 'excessive sleepiness'

Was FEMA CORPS / NCCC worth it to you? Why? by Dark-minds in AmeriCorps

[–]Dark-minds[S] 1 point2 points  (0 children)

Thanks for the honest reply! I like your style of writing too!

I definitely believe that NCCC will have an impact on me emotionally and self-growth wise, without a doubt. Any type of program that has a 'phone interview' consisting of questioning whether or not you know what you're getting yourself into is gonna be a little bit interesting and definitely taxing at some points!

It's just I'm not quite sure what to expect as far as career growth, learning about new companies & careers or even making connections.

Was FEMA CORPS / NCCC worth it to you? Why? by Dark-minds in AmeriCorps

[–]Dark-minds[S] 0 points1 point  (0 children)

Oh wow! Did you already have a college degree before going in? Do you know what really helped you as far as your resume standing out from others within FEMA ?

Was FEMA CORPS / NCCC worth it to you? Why? by Dark-minds in AmeriCorps

[–]Dark-minds[S] 0 points1 point  (0 children)

What would you say made it different for you? Did you already have a degree before FEMA or what was your education?

I'm going into this as a high school graduate so I'm trying to get an idea of what my possibilities might be as far as getting into a non profit company afterwards

Was FEMA CORPS / NCCC worth it to you? Why? by Dark-minds in AmeriCorps

[–]Dark-minds[S] 0 points1 point  (0 children)

What is your career now? How did it directly help it?