IAma Narcoleptic (have narcolepsy)

Where do you get the corpses?

Narcoleptic, not necrophiliac. Lol

Lol second question have you heard the song narcolepsy by third eye blind ?

Yes I have! I think it describes the feeling of being alone, battling against your body to be awake/alive, and how your entire day is consumed by such

What is a common misconception about someone with narcolepsy?

I think it goes 2 different ways. People assume if you have narcolepsy you're instantly/constantly just falling asleep (like they see in movies) But often times when I tell people I have narcolepsy, they assume it's not that bad. Try to explain it away that I need more sleep, vitamins etc.

So which on is the right one? Is it more aggressive and you fall asleep everywhere. Or can it, as you say, be controlled by vitamins and more sleep than normal. If so how much more sleep do you need?

Neither. I don't fall asleep randomly Other than sometimes as a passenger on a long road trip, my bed, or sometimes the couch. And there are far more symptoms than simply daytime sleepiness
It can't be controlled with vitamins and "more sleep" since we have excess of rem sleep. Less sleep, more sleep. Normal amount of sleep etc will all lack enough restorative deep sleep stages

So how does it affect you? Is it constant or does it come on in periods? Is there anything you can do to minimize it. Medicine, exercise or something?

Daytime sleepiness - constantly feeling exhausted. Disturbed sleep - constant waking or disrupted sleep. Brain fog - make conversation/reading comprehension difficult. Makes critical thinking difficult. Excessive rem - non restorative sleep in which your mind is active. Therefore even sleeping 10 hrs I can wake up feeling more exhausted than when I went to sleep.

Insomnia- often times getting 4-6 hrs of sleep Hallucinations- can be mentally disturbing and cause more stress. Or may just be frustrating to deal with. Mild cataplexy - slurring, dropping objects, tripping on nothing. I've fractured my foot this way. Not to mention broken cups, plates etc. Automatic behavior- not being conscious during mundane tasks. Lose things, break things. Etc not to mention they can cause a feeling of panic. Pains - often I wake up with sore muscles etc from disturbed or uncomfortable sleep. Sick - when I'll it takes a longer time to recover

The first 4 are everyday, the insomnia is very frequent. Varying degrees depending on stress levels of course. Being as healthy as possible of course helps to a degree. As obesity, poor diet, lack of movement etc exasperates any condition. Medicine helps to degree. But does not remove any symptoms. Mild narcolepsy is often compared, by doctors, to a normal person going 48-72 without any sleep

The first paragraph is almost me for the past few years. Should i go for a check, and if so, where/who should i start with?

Yes. I would pursue answers. There's also idiopathic hypersomnia which is strikingly similar to narcolepsy. And of course many other things that can create similar symptoms. If your insurance does not require referrals, either a psychiatrist, pulmonologist or neurologist specializing in sleep. If you need referrals start with your GP. Always advocate for yourself and don't allow doctors to brush you off

I am also narcoleptic. Cataplexy has been the bane of my life. It has made me so self conscious to talk to strangers. One side of my cheeks (sometimes both) would droop when I'm talking or twitch when I'm laughing. One time, I fell to the ground because I anxiously told a joke to one of my friend. I hate it so much.

What are you doing to suppress it? I've been prescribed some meds, but those side effects are even worse.

I'm sorry to hear that. My cataplexy is very minimum. Loosing grip of things in my hand, slight sticky tongue (slurring), tripping over nothing, when I really wear myself thin. I'm not taking anything to specifically address the cataplexy. I know ssri are commonly prescribed for cataplexy, and sometimes xyrem/xywav. I was previously on an ssri before being diagnosed and that was horrible. I'm sorry I don't have more advice

Sorry if this is forward, do you take any meds at all?

4 total. 2 in the day (sunosi 150mg, Adderal up to 40mg) 2 at night (baclofen 60mg, zaleplon 10mg)

Sometimes it’s like the movies though. I have a friend with Narcolepsy … I had no idea she had narcolepsy until one fateful evening of driving.

We were driving on a highway at night, and a big rig crossed the center divider onto our side of traffic. Big horns and big lights. I managed to get my ass over safely to the shoulder, at which point (after changing my pants so to speak) I learned that my passenger was unconscious.

I learned all about narcolepsy from her after she explained what happened.

Certainly can be. But it varies so greatly. And of course there are many more symptoms that accompany it

Is this something you have lived with all your life? If not, when did you approach a doctor and how difficult was it to be diagnosed? (ie Was it difficult to get a doctor to take you seriously, not misdiagnose etc)

I have had signs since I was little of sleep issues (insomnia, sleep paralysis, sleep walking, night terrors, daytime sleepiness)
It took about 3 years to get diagnosed. Originally I was diagnosed with adhd and depression. Doctors also considered bipolar and or Borderline, as at that age the narcolepsy greatly affected my mood/behavior. I went to many specialist, endocrinologist, internal med, psychologist, psychiatrist, many therapist, neurologist, and other specialties. Had many many blood panels, EEG, PSG, mslt, many psych screenings. I know for others it can take many more years to get diagnosed. Lots of doctors looked at me, and test results and said I just needed to stop acting out/making things up, take my anti depressants and get moving. Thankfully a neurologist finally said "she has narcolepsy I guarantee it" and ordered an mslt with a psg

It can be so hard to get doctors to pay attention to your symptoms and actually diagnose you with weird disorders like narcolepsy. Then again, I didn't get diagnosed with borderline until I was 32, so it's weird that they threw that one at you before they even considered narcolepsy.

It is strange. They basically said they couldn't diagnose me formally with bpd or bipolar due to my age (12-14) but I was having severe outbursts, risky behaviors. Its still thought that there maybe a psych or personality disorder with me. Unfortunately due to my past medical treatment (not believing me/writing me off) I've been fearful to go to doctors and be written off or be taken off my current meds.

Lack of quality sleep can definitely cause one to exhibit symptoms of mental illness. I'm sure that that also holds true for an illness like narcolepsy. When your ability to rest or feel fully awake is compromised, especially when you're an adolescent girl, it's easy to assume that you're just crazy and not super tired.

Exactly. The "worst behavior" was during puberty so 11-15/16 It caused my judgement to be skewed. On top of that the need to feel awake/alive, I was seeking out risky behaviors to get a bit of an adrenaline rush. I was very frustrated with the poor sleep and daytime sleepiness and just wanted to feel normal so bad

You don't want a personality disorder as those are not treatable. Personality disorders tend to be quite serious.

I'm fully aware. However there are behavior/emotion patterns throughout my life that psychiatrist have been concerned about

If he determines you have narcissistic personality disorder or antisocial personality disorder, he may terminate you as a patient...

Not how that works. And I never mentioned either of those.

Yeah, it does actually. Especially if you have anti-social personality disorder, there is no medication that will treat that. And counseling just makes them worse.

As I already said I know for a fact I do not have anti social personality disorder or narcissistic personality disorder. That has never ever been mentioned by a doctor, therapist, friend or family member. Solely bipolar and Borderline personality disorder. I already am being treated for my narcolepsy by a psychiatrist. So I will not be "dropped" by my doctor

Why is your AMA proof a picture of you awake instead of asleep? It's not really convincing, tbh.

Jokes aside, I do have a question. Are you allowed to have a driver's license? Or are there any activities you avoid / are forbidden to do?

Never had an issue with having a DL. Not really any activities I avoid. Maybe on certain days, but not as a whole

Are you on Modafinil?

I was for about 6 months. It did not help with the excessive day time sleepiness. Gave me severe migraines and nausea. Unfortunately it makes hormonal birth control less effective, so I got the copper iud. That was a nightmare alone.

[removed]

I'm on both sunosi and Adderall

Talk about the hallucinationa and sleep paralysis

When you're asleep, specifically in REM state, you are dreaming, your mind is active. So to protect yourself your body is typically paralyzed, so you don't act out your dreams. The way best way it can be explained is by imaging you have switches, one for dreaming, one for sleep paralysis and one for REM. Those switches are only supposed to be flipped "on" when asleep. With narcolepsy those switches can get switched on at anytime. Often times switching on before being asleep, or not switching off upon waking. When you wake up and the paralysis switch never switches off, you wake up unable to move. It can last for a minute, sometimes longer. I've definitely had to just lay there and accept it for up to 20 minutes. If that switch get flipped on during the day (not when you're waking) but during normal activity then it is cataplexy. As for the dream switch. Sometimes it gets flipped on before you actually fall asleep, which is hypnagogic hallucinations, or if it doesn't turn off upon waking it is hypnopompic hallucinations. Often times your dreams continue into waking state.

That's so interesting! I feel like I've had the pre-sleep dreams on certain medications.

Yes. While I'm not certain if they are triggered by REM sleep. I've definitely had issues with otc cold medicine and Tamiflu. Interesting experience to say the least. I stopped the Tamiflu 2 days in because it was causing such vivid hallucinations pre bed time.

In people without narcolepsy, lack of sleep (being sick you need more sleep) can cause your mind to go into rem, and dream while awake.

Do the hallucinations tend to be positive or negative? I guess it would differ based on the person?

It differs from person to person, and their current situation. When I was undiagnosed and stressed, I would hear my name whispered, it would sound like people running outside my bedroom door, conversations I couldn't hear. I swore my house was haunted. One time before I was diagnosed, my parents thought I was on drugs. They woke me up, and I saw rabbits all around the room and was yelling at them about grabbing them and putting them out my room. That the rabbits were keeping me up all night. (So funny looking back on it) I've also had really bittersweet hallucinations. I've had close family members pass and was dreaming about them. Upon waking she was present in my room and telling me things were going to be OK. So it felt bittersweet, I felt like I got to see her one last time.

Nowadays it's usually sound. It often will sound like a TV or radio is on in the other room. Muffled musical notes or voices.

This actually occurs right before REM sleep. You are half awake, half dreaming.

Which does?

Causes you to believe you are still awake laying in your room, but you are not. This is why stories of aliens abducting people emerged. Or demons, etc.

You are not "half awake half asleep" right before REM.

Yes, you are. It happens as you are falling into or coming out of REM sleep. Your brain normally paralyzes your muscles -- so you don't thrash around. During sleep paralysis, the sleeper is awake, or half awake, and aware they cannot move.

Correct. Didn't understand you were referring to paralysis by your last post

Some people refer to this as "night terrors". I used to get these, and still do occasionally. What I experience is a sound of static, like when your old tv couldn't pick up a signal or when it rains extremely hard. Then I would usually see a shadow person wearing a fedora hat and red eyes standing in the corner of my room. I would then try to move, but as you know couldn't. I couldn't talk either.

What is so creepy about it is that it really seems like you are wide awake. And that weird feeling stays with you all day.

I have always found that these seem to happen the most often when you have unmanaged anxiety. When you have unresolved problems that you worry about, your brain will create problems that are not real and in a weird sense this is therapeutic. But now you're worrying about things that aren't real and this causes the fight or flight sensation when there is nothing to be afraid of. And this manifests itself as sleep paralysis sometimes.

Night terrors are not during paralysis. What you're experiencing is sleep paralysis.

Night terrors are when upon waking you are screaming, flailing, unable to calm down due to the dream you were having or are continuing to have and sometimes coupled with sleep walking. You may benefit from a sleep study and rem suppressant.

Hmm this is really making me want a sleep study done. Because I recognize a lot of these things in myself (not the cataplexy, but a lot of others)

If things resonate with you. I strongly encourage you to bring things up with doctors. Start a paper trail of your symptoms. It can sometimes take a while to finally pin point the root cause, not just with narcolepsy, but with sleep issues as a whole. If you have insurance, specifically that does not require referrals for specialist, find a psychiatrist, pulmonologist or neurologist specializing in sleep.

I just look at your picture, you're so young! What does a typical day look like for you dealing with narcolepsy?

Hi. I am 24, I was diagnosed at 14.

I typically wake up tired. Have to get up and immediately take my first daytime medication (sunosi 150mg)
I get ready for the day, and attend class or work, sometimes both in the day. I deal with brain fog, daytime sleepiness, automatic behavior, sometimes minor cataplexy. Throughout the day I take additional daytime medication (Adderall, up to 40 mg a day)
I have to stay hydrated and eat to prevent side effects of my day time medications. I use my health app to track eating and water intake. Often times I even forget to eat or drink. By about 2-4p I usually am exhausted, yawning and having extreme difficulty focusing. When I finish my day off, I usually get home and take my night time meds immediately (baclofen 60 mg and Zaleplon 10mg) and have to rush to eat and shower, finish up things for the day. Unfortunately I have severe insomnia as a side effect. So even with nighttime meds I don't fall asleep quickly. Usually I start doing automatic tasks (cleaning, watching tv) a bit out of it. And often times have hallucinations (surfaces moving, patterned) as my mind is trying to fall asleep but my body is not ready. Usually ending up with 4-6 hours of sleep. About once a month or every other month I have a weekend or a few days in a row with no school or work and sleep thru those days as a "reset"

Often during the day I need stimulation, to be alert. I keep myself extremely busy. When I'm home I often listen to videos/podcasts, get up and walk around when doing homework or similar tasks. I find with work I do best in "high stress" jobs or positions as well

Have you seen the narcoleptic portrayed on The Sopranos and if so... how accurate is it?

It is the only example I have seen on tv.

I actually haven't seen it.

I know there are very few times it's portrayed in tv/movie/books and often times it's briefly and simply as someone falling asleep at inconvenient times constantly.

Since I was little I have struggled with sleep. I was always the last one up while my siblings were up with sun id sleep till 1pm if left alone. I’ve had nightmares my whole life as well. I struggled so much with alarm clocks that after my babies were past the toddler age I lost the mothering instinct and slept through anything. I could not get up in time for school/work or anything. I’ve had occasions where if I’m sitting at an appointment or even in line I get bone tired and have falling asleep at doctors. One occasion where I nodded off at a red light. I can sleep 6, 8, 12 hrs and still feel the same when I wake up. Like I never slept at all. My entire life I’ve woken up exhausted. I use to joke about being narcoleptic to laugh off my struggles. I’ve learned years ago it’s not like I’m the movies. I keep thinking I’ll grown into my internal clock as I get older but at 36 it’s not happening. I also struggle with severe anxiety and diagnosed with adhd, ptsd (car wreck), specific phobia, and have constant memory loss. Unrelated but I had Covid back in the fall and since my mental and physical well being have struggled even more. I had to drop my classes due to the brain fog and finally sought treatment. I am on adderall and currently trying pristique. The latter being the best match genetically as everything I’ve tried before caused severe depression or severe fatigue from meds that usually cause others to be more energetic. I can’t even take pm cold meds because it knocks me out so bad that I wake up absolutely weak and exhausted. My therapist said I share similarities with one of her patients who is narcoleptic and using Prozac for treatment which I can’t take. I never mentioned narcolepsy to her. My psychiatrist has not mentioned it nor have I for fear of being judged. I have major anxiety about even seeking help and being treated like I’m chasing down pills. I also have a thing about rules. I cannot break them. Like literally I will not even go through a door or stand in certain places unless I absolutely know I can. I can’t try pot for my issues because it’s not legal and many other things. However since being in adderall I have done so much better with my sleep. When I do get exhausted it’s the same. I’m bone tired and will fall asleep if I sit. But it only happens by night fall. In the beginning I woke much easier though that is becoming a bit difficult again. Still manageable. I’m afraid to up my dose per my diva recommendations cause I know the meds are not permanent or healthy. Plus risk of withdrawal/addiction for many. So I’m trying to wait it out until it’s almost no longer effective.

I don’t have cataplexy or any symptoms that I can think would qualify. Though I have either a very weak muscle in one eyebrow or tight one in the other. It’s not always but definitely when I’m on video or take pictures. Not when I look in the mirror. It’s weird and has become more obvious the past few years and random muscle twitches that I feel is probably common.

I also talk in my sleep and will do so when woken sometimes. Like sending my kid to get a grocery bag and get coming back to hand me it and I have no recollection of asking. Very video dreams as well.

But I guess my point is how do I ask about this? I’ve always been told I’m just lazy. I feel like I slept my 20’s away as a SAHM while kids were in school. I even failed a grade due to absences because I’d leave just to go home and go to sleep. I love classes and learning. I just can’t get up early, or stay awake in class. I have always felt like my body was just not getting the proper nutrients/care but fatigue made that so hard to even work on. I’ve felt like a horrible mother, wife, and just human for not doing more in my life. I lived off of caffeine that my anxiety was always triggered. But at the same time I feel like my symptoms are not enough to warrant a diagnosis. I really wish my doctor would recognize this and mention it. Do you have to do a sleep study? My meds help me so maybe I should leave it be. But if I am narcoleptic I feel like I can convince myself to not feel as guilt for being in the meds. Or maybe there are more effective ones that are less harmful. Maybe my adhd isn’t adhd at all but symptoms of narcolepsy? Especially since it was diagnosed as inattentive form. Idk any advice would be much appreciated and sorry for the rambling long post.

I am dx as adhd inattentive form as well. I think the adhd inattentive diagnosis IS accurate. It can be mistaken for narcolepsy sometimes, but often it is comorbid.

A sleep specialist typically orders a sleep study (psg with mslt). Some countries use a spinal tap to measure orexin levels, but this is only accurate for type one narcolepsy. A psg is done (over night sleep study), if no sleep apnea is detected then during the following day the mslt portion is done. You are required to be off of any rem suppressing meds for the 2 weeks leading up to the study (typically this is antidepressants and a few other classes) and avoid stimulants, nicotine, caffeine immediately prior to and during the study.

I was originally diagnosed by a neurologist specializing in sleep, and now see a psychiatrist specializing in sleep. Sometimes pulmonologist specializing in sleep diagnose narcolepsy as well (often times patients with apnea visit these specialists) . I would bring up sleep issues with your GP in order to get a referral. If your insurance does not require referrals, simply find a sleep specialist doctor to bring up your concerns with. There is the chance you have apnea, idiopathic hypersomnia, narcolepsy, rem disorder or a few other sleep issues that overlap some in symptoms. Best of luck. I truly think getting a diagnosis helps immensely. There are also narcolepsy specific medications that help, other than off label/stimulants

Have you ever been put in immediate danger due to your symptoms?

Is there anything that is particularly difficult for you that people might not expect?

I wouldn't say I've been put in serious danger due to any symptoms. But they can definitely be alarming, especially when changing meds/trying new meds. I've tripped and fractured my foot before. Sometimes symptoms aren't dangerous but just startling. Automatic behavior can be scary sometimes when you come to and forget where you are or what you're doing. It can trigger a panic attack.

Just getting thru the day can be rather difficult. I'm battling my mind and body a lot of times. Brain fog makes things hard to remember or understand. Automatic behavior can make you forget what you're doing or make you poorly complete a task.

Edit: to add to things that are difficult. I think when people see my mess (my house, unorganized paperwork etc) or see me in a messy presence (which is truly rare) they assume I'm lazy or similar. When in reality for me to be present and taking care of myself (work, bills, keep myself alive essentially) can take up so much effort and energy that everything else is secondary.

What are you studying for and are you worried about finding job that will be there and work with you?

I am studying medical laboratory science. Currently I do not have any work accommodations. As back up I have an online business. Just incase working ever becomes an issue. And hopefully it will have grown enough

How do you know you have excessive REM sleep? Does it mean you dream often or that your dreams last very long?

I suppose you have tried to have a good sleep hygiene (no screens and no eating before bed, dedicate your bed to sleep only, etc.) Has any of them worked?

I had some of your sx, tho not nearly as much and i didnt have to get meds, but my sleep has dramatically improved when i got my first child because i was always up, always active (both night and day). I was so tired that i would fall asleep very quickly (minutes instead of hours).

Wish you the best in the future.

Mslt and psg are 2 types of sleep studies which measure oxygen levels and brain waves (which determine which sleep stage you are in) For narcolepsy the mslt is done, taking 15 min naps 2 hours apart during the day. You have to fall asleep for x amount of naps within a certain time frame and go into rem for x amount of naps within a certain time frame. On average I went into rem with 6 minutes for 4 naps. Typical latency for rem is 90+ minutes

I dream very often, vividly and can remember many if them in great detail. Sleep hygiene, general health hygiene of course prevent from exasperating symptoms but don't improve them for me.

And thank you

I'm 99% sure I have this as well. I woke up the other day hallucinating and when I googled it, it's a symptom, so naturally I check the others and I have them all.

Is it worth being "diagnosed" or is it just something better to just deal with? I've always had a lack of sleep at night and I'm super tired throughout the day and at this point I'm used to it and i can deal with it.

I don't know if it would be worth telling my GP about it and maybe getting help?

I think at minimum it would be good to have your symptoms documented. Having a diagnosis is beneficial as well. Even if you don't feel you need medications at the moment because you can manage the symptoms alone. I feel it has worsened with age. Although it's not considered progressive and some doctors with deny it's even possible to have gotten any worse.
I believe knowing the cause of things helps me emotionally and mentally as well. Some days I feel guilty doing nothing or less than what I see others do on a "day off", but knowing there's a reason makes me be a bit nicer to myself.

Have you been vaccinated?

If you mean in general, yes. If you mean covid, yes (minus booster), both times I had to take off work and barely could even take care of myself. I feel since then (it's been nearly a yr) that my symptoms have worsened

I did mean in general, including covid. I remember when the swine flu was a thing, a famous person’s daughter in my country developed narcolepsy after taking that vaccine.

(Linking Swedish news article in case someone is interested/doubting: https://www.aftonbladet.se/nojesbladet/a/Adja5z/sofia-wistams-dotter-fick-narkolepsi-efter-vaccinet)

I've heard about that and H1N1 vaccine that was available in Europe as well. But none of those were vaccines that I've ever had (not even sure if they were available in the USA) Edit to add: I believe I was genetically predisposed to narcolepsy and strep triggered it. I had strep throat semi frequently as a kid. And could not take common treatments for it: penicillin, Zithromax, cephlasporins as I'm allergic. I believe I would take clindamycin instead, but I remember each time it taking longer and longer to get better.

Do you use or avoid caffeine?

I don't really use it, but not becausei need to avoid it. I hate coffee to begin with. But I drink iced tea sometimes.

Interesting. A friend of mine claims she has narcolepsy (after visiting many doctors, she finally convinced one to give her a narcolepsy diagnosis) and she drinks Mountain Dew all day, and then wonders why she can’t sleep at night. That’s not how it works, right?

At one point in time I was taking caffeine pills because I was unmedicated. I was taking 300-400mg plus drinking red bull, bang, etc. I'd say it might contribute. But there's a good chance the insomnia may be part of the narcolepsy itself

What's the best nap you've had?

Probably as a kid, going on family road trips for vacation. Sun beaming in the window, a/c blasting, pillow and blanket with me. After getting up early to finish packing/load up the car. Driving for hours then stopping to eat. Afterwards feeling sleepy and waking up at the destination.