Does Narcolepsy Type 2 Exist?
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- čas přidán 12. 09. 2024
- Dr. Berkowski addresses the origination of the diagnosis of narcolepsy type 2 (narcolepsy without cataplexy) and its relationship to narcolepsy type 1 (narcolepsy with cataplexy. He discusses that the condition is based on an abnormal test result rather than a known biological process and how the diagnosis is made through the multiple sleep latency test (MSLT). This diagnosis may mislead patients away from the actual and a more well-defined cause of their daytime sleepiness. For more information, read his blog post on this topic: www.relacsheal...
I’ll also add that having this disorder (call it whatever you want) is extremely debilitating. Prior to me having these issues I was a very active person and always on the go!! It’s so very frustrating to live life like this. I do the best I can but it isn’t easy and most people don’t have a clue how difficult it is.
I completely understand. This started for me 8yrs ago. I’m searching for a diagnosis and treatment with everything I have. I WANT MY LIFE BACK! This paired with my sickle cell disease has drastically reduced my happiness in life and I got so depressed and hopeless that I was suicidal which is the complete opposite to my normal optimistic and bubbly personality. ❤
@@kimberlyfcarlos so sorry to hear this, I hope you find the right treatment!! It’s so frustrating, I get it!!
And often misdiagnosed as Depression
Well, if narcolepsy type 2 doesn’t exist then can you explain what it is that I have? Or why I went into REM sleep in less than a min on 4/5 naps for the MSLT study? I don’t work night shift so it’s not that. However, I was put on xywav and stimulants and that greatly helped! It’s not perfect, I can still get sleepy sometimes but it’s a massive improvement from where I was!! Sooo 🤷🏻♀️
Why get triggered as he just insulted you maybe try to understand what he said instead. To question a diagnosis is not the same as saying you don’t suffer or you are just lazy. A lot of things can make us tired not only narcolepsy so yes it’s a good thing to question a diagnosis that might lack evidence right now as many diagnosis do. People of course need their diagnosis for insurance, medicine etc but to question and learn more about it just means they can help more people maybe even faster or/and more effective. So of course believe the patient and give them the care they need but to evolve we actually need to question things.👍
bummer, i thought i might be a type 2 narcoleptic and all my problems would be fixed if i got diagnosed. ever since i was a kid ive needed more sleep than other people. these days i naturally sleep for 12-15 hours and im extremely hard to to wake up. when i get less sleep i feel terrible, 4 hours, 6 hours, 8 hours, 10 hours, it doesnt matter. im tired all day and i feel most energized around 2am. on days i dont have anywhere to be i waste the whole day sleeping and stay up all night. i have never had any nightshift jobs, my labs have always come back normal (other than being a type 1 diabetic), i have never had a head injury, and not obese. my doctors always told me im "just a teenager" or that my "brain is still developing" but im in my mid 20s now and its never gone away. i am tired constantly, and often dont have the energy to do things i need to get done. how do i move forward? im very frustrated and dont know where to turn
Many of those diagnosed with narcolepsy type 2 can benefit from behavioral modifications in the same way that those with insomnia benefit from cognitive and behavioral therapy for insomnia (CBT-I). Many of the same clinicians who treat insomnia with CBT-I may be able to assist in working with those with narcolepsy type 2 to optimize their sleep. Here is one such website with sleep therapists:
cbti.directory/index.php/search-for-a-provider
Most sleep physicians in an insurance-based clinic do not have time for these treatments due to lack of insurance reimbursement, and focus on prescribing stimulant and wake-promoting medications, but psychologists, therapists, and a handful of MDs can work on behavioral interventions.
Differentiating N1 and N2 as physiologically distinct is good, but it would be a great disservice to N2 patients to direct them to behavioral therapies. Sodium Oxybate, and other N drugs, dramatically benefit most N2 patients
@@MrInvertible Yeah, this feels like more of a case of poor naming. It's a distinct disorder (as is IH) but doesn't share the same root cause. I thought I read a while ago they were thinking of renaming type 2.
I have had sleep paralysis since my late teens, and I've always needed a lot of sleep. However, it was during my second pregnancy at age 42 that I just became excessively tired. I hoped it was going to improve after the baby was born, but it didn't. After the birth I went back down to a size 12, but I felt no better. Over the next 7 years I rapidly gained weight and eventually was diagnosed with Sleep Apnea. At times it looks like the Apnea is controlled, but only for brief spells. There are more central episodes than there should be. I've been on CPAP for 3 years. But I'm exhausted. I HAVE TO sleep during the daytime at least 2 hours. I usually dream. It doesn't take long to fall asleep at all. I adapted to wearing a mask straight away because I am so tired it didn't keep me awake. No cataplexy.
There are a lot of other illnesses, I have autoimmune disease. So maybe it is to do with those. Unfortunately nobody seems to be able to find the cause, which for 7 years now has left me with no effective treatment and sleeping my life away.
So forgive me for saying your perspective is less than helpful.
I could care less what this is called, I just want some treatment that works and means I am not basically a zombie.
Sorry to hear about your experiences. The intent of the video is to educate those who have been given this label to be made aware that our field does not currently have biological basis for the diagnosis, which is not the case for narcolepsy type 1 (with cataplexy). It is highly likely that an individual diagnosed with narcolepsy type 2 has a known and treatable cause of sleepiness, but it has not been identified appropriately by the clinicians. The term is used like it is set in stone and patients should hear about the complete lack of understanding the field has about narcolepsy type 2 at this point. It is absolutely the case that there are rare conditions out there yet to be discovered, but given that so many patients have not had the basics of their sleep discussed with a doctor, this video is meant to make patients and medical providers aware that they should be looking more closely at patients to understand the treatable causes of daytime sleepiness.
@@andyberkowskimd Just seen my comment was left 2 months ago. Since then I have had 2 episodes of cataplexy. Hopefully my doctors will take that seriously but I doubt it. Right now the UK's NHS is in collapse. I had a 2nd sleep study and got a letter saying they will discuss the results in 6 months. 😑
I could easily die not knowing what the cause of this is, and never getting any treatment.
In general, for those who are being evaluated for narcolepsy type 1, I have just written two detailed blog posts about 15 causes to avoid that may lead to misdiagnosis of this condition:
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-i
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-ii
(or the shorter CZcams videos if you prefer)
czcams.com/video/0goD3Ncwvl0/video.html
czcams.com/video/jcpOEBVH7Mk/video.html
@@andyberkowskimd Sorry to say this, but I find your writing just isn't logical. In fact, it is quite patronising and insulting to someone seeking a diagnosis. To suggest such people are malingerers or have Munchausens. OMG. How nasty. I will tell you exactly what has happened in my life, I am educated to Masters degree level. I have chronic autoimmune issues. My psoriasis started age 7 and has been severe enough to be admitted into hospital age 9, for 6 weeks. They would have kept me in but I was miserable and it only made matters worse. I then developed psoriatic arthritis. After having my first child, I developed more problems including Lichen Sclerosis. I suspected what it was, but my biopsy was "inconclusive". 10 years later I finally have a diagnosis, but not longer have my labia minora. Every single time something new comes along, I know what it is but wait YEARS for a diagnosis. I'm 50 now. Will I be dead by the time I get my Narcolepsy diagnosis? With doctors like you around, more than likely. 👎
@@andyberkowskimdwow you really wrote that it’s possible that people are experiencing MUNCHAUSENS?!
You’re the reason why so many women are suffering greatly every day to no avail…because the doctors don’t know what it is then it must be the patient lying?!?!
Come on now… stop the BS. We are suffering and need help. It’s ok to admit you just don’t know… but stop gaslighting and putting the blame on patients.
Thank you for this video! I've just recently found out I might have Narcolepsy and I'm trying to gather as much information as possible, which is not super easy since the condition seems to be very rare. I'll be seeing sleep specialists in a month or so by my doctor's recommendation.
Until then, there's still questions I'm facing regarding Type 1 & 2. In my case, I do have some moments during days where I feel so sleepy I just stop everything to go take a nap. On top of that, since a year I'd say, I started doing Hypnopompic and Hypnagogic hallucinations (Which I just recently found out how to name them). Last week, I got my first episode of a sleep paralysis (That was one of the most terrifying experience in my life). I do have those symptoms, but I never ever had an episode of Cataplexy.
Is it a requierement for Narcolepsy Type 1 to have Cataplexy, or is it just a symptom that the vast majority of Type 1 Narcoleptic have?
And if it is a requierement and Type 2 doesn't seem to exist as you might suggest, what other conditions would you suggest me to look at which could be related to these symptoms?
Thank you for taking the time to share that kind of information, it's really instructive and appreciated.
Sorry to hear about your symptoms and best wishes on a speedy understanding of the causes and hopefully good treatment to come.
In general, NT1 has two important objective tests as I describe in another comment here for this video: HLA testing for narcolepsy and hypocretin (orexin) levels in the spinal fluid. In patients in which a clinician is unsure if they have NT1, these tests are paramount. A test showing no narcolepsy HLA allele essentially rules out the condition...probably close to all people with NT1 who have no hypocretin have cataplexy, though it could theoretically develop a few months after other symptoms of narcolepsy as the brain cells that make hypocretin in the hypothalamus are gradually destroyed by the body's immune system. NT1 is an auto-immune disease. A healthy person without narcolepsy can have severe drowsiness, sleep paralysis, REM sleep behavior disorder (acting out dreams, though this could be a sign of a different problem) and hypnagogic/hypnopompic hallucinations, but cataplexy is unique to NT1. I hope to address these symptoms in future videos.
The vast majority of people diagnosed with NT2 have inappropriate sleep-wake patterns. These should be identified through a test called actigraphy (medical grade sleep trackers), but insurance largely does not cover this relatively cheap form of testing so very few sleep centers bother administering this test, when it may be the most important test, sometimes giving more information than an overnight sleep study (polysomnogram). Other causes of an NT2 diagnosis are substance and medication effects (including withdrawal), administration of the test (MSLT) at the wrong time of day, and even human error in test interpretation to name a few.
Struggled with this since 2002! My insatiable need for sleep has wreak havoc on every area of my life.
Husband dx with narcolepsy repeatedly, has no cataplexy but has definite sleep attacks. It's been a hallmark struggle through his life; so hear it dismissed as "not really existing" is just rude. Acknowledge poorly understood pathology and that it may need to be recategorized -- but dont just dismiss peoples lived realities as not real. Very unhelpful.
Ironically i have had cataplexy all my life -- with no narcolepsy dx even after a sleep study.
He can't explain because it's incompetent in what he's talking about.
i am glad i found your video i was diagnosed with narcolepsy at 17yrs old and put back on riddelin(im also adhd) for it however in 2012 i went off cold turkey due to loss of my job and never went back on it.. i have never just fallen asleep for no reason i do have esd symptoms ive wanted to get retested for so long i also dont have the sleep paralysis either for the longest i felt i was misdiagnosed and just watching your video brought back some stuff i do hope in the soon future i can get retested ... i do remember feeling depressed back then but never expressed it (complicated reasons)
Thanks for sharing. Narcolepsy type 1 has an objective biological cause with objective biological testing available. Narcolepsy type 2 has no known biological cause or testing. It is a label given to a person who has MSLT results that look like someone with narcolepsy, but the doctor cannot figure out why. It is what we cause a "diagnosis of exclusion" in medicine. Doctors are supposed to look at all known causes and exclude them before reaching the diagnosis of an unknown. Unfortunately, this is not being done consistently due to misunderstanding of what the MSLT means, lack of understanding of sleep physiology, and lack of time spent with patients in the U.S. system. The difference between the two that share the same name is no more illustrated than in this study:
Ruoff C, Pizza F, Trotti LM, et al. The MSLT is Repeatable in Narcolepsy Type 1 But Not Narcolepsy Type 2: A Retrospective Patient Study. J Clin Sleep Med. 2018;14(01):65-74. doi:10.5664/jcsm.6882
Hi, I am diagnosed with narcolepsy, but i don't have cataplexy. I can remember that I had excessive daytime sleepyness since 8 years and bevor I went to a doctor last year i tried everything else. Like a good sleeping routine, sugar, when I started to feel tired, I good my blood tested if I maybe have too little iron or vitamin d, but nothing helped. So idk, maybe it's not narcolepsy, but i really don't know what else it should be. If you have an idea i would be really happy, because it effects many parts of my life right now.
Me too:( all doctors do is a small routine blood test and tells me everything is ok and gives me stimulants. I just want to know why I have type 2
Sorry to hear about some of the troubles you have shared. I hope to do more videos addressing causes of sleepiness in the future. In general, the most common causes that mimic narcolepsy is an irregular or non-physiologic sleep pattern (i.e. one that is not compatible with how the human body should function like taking multiple naps per day), circadian rhythm disruption (biological clock pattern not compatible with one's daytime schedule), medications and substances, poor sleep quality from other conditions like anxiety and depression, and don't forget that the diagnosis is based on the MSLT, which is a very imprecise and non-specific test. The test is often poorly administered and has a lot subjectivity in interpretation that can lead to false positive diagnoses. Here are two research articles that highlight how lousy this test is:
pubmed.ncbi.nlm.nih.gov/29198301/
pubmed.ncbi.nlm.nih.gov/23946709/
Part of the point of the video is to caution those clinicians who diagnose NT2 and those who have been diagnosed with it. There is no current biological basis, and the diagnosis is based on results from an imprecise, non-specific test. One should not assume this diagnosis is set in stone. More will be revealed in future years as more research is done.
Conditions that do not have a known biological basis including NT2 and idiopathic hypersomnia (IH) are treated symptomatically, meaning there is no direct treatment to stop or reverse the condition, but treatments are meant to help with symptoms from the condition. Some treatments like stimulants will make a person more alert regardless of whether they have a condition or not. For a lot of conditions in medicine, treating symptoms is the best that can be done as there is no way to reverse the cause, even when the cause is known. In narcolepsy type 1 (NT1/narcolepsy with cataplexy), there are specific medications that reduce cataplexy, but these do not reverse the condition, which is permanent damage to a portion of the brain, but they can certainly help with symptoms. Those with NT1 may also take wake-promoting medications or stimulants to help counteract symptoms of sleepiness.
First , sorry for my English as it is not my first language
I truely suffering from too much sleeping along the day
When i wake up i feel tired and want to sleep again
I feel tired all day and almost can't resist falling a sleep more than 1 or 2 hour
Can you please tell me what may be my diagnosis
Is it narcolepsy type 2 as i don't suffer from paralysis
Sorry for troubling you but my life is such a disaster😢
Sorry to hear about your symptoms. Perhaps you can find a doctor near you who specializes in treating sleep symptoms as there can be so many causes of poor sleep quality and being too sleepy during the day.
@@andyberkowskimdif poor sleep quality then wouldn’t polysomnography detect it???????????
I was diagnosed with type 2 not only on my MSLT, but my REM sleep is also consistent with narcolepsy (30 min to first REM cycle, more REM than average). Vivid dreaming was my first clue. However, no other type 1 symptoms. I didnt know that diagnosis was that lax, but i think there's something to the symptom pattern. I've calles it "narcolepsy that isnt really narcolepsy", somethint that mimicks the sleep pattern but not the root cause.
Many people can be in situations that can mimic narcolepsy, particularly the results of the MSLT, which is why the results are "non-specific" to a condition and must be made in the context of the individual after thorough health assessment.
This is 5 minutes of my life I can't get back. What a waste of my time.
I have the sleep paralysis, hallucinations, not just visually but auditory and I can feel it touching me. I was exhausted, constantly sleeping upto 16 hours a day before I was put on meds. Basically all the symptoms apart from cataplexy.Also I go in to rem sleep within seconds x
Most symptoms of narcolepsy except cataplexy can occur in healthy individuals without narcolepsy. We call these "non-specific" symptoms. Very severe biological clock and sleep disruption can lead to sleep paralysis, hallucinations, sleepiness, and entering REM sleep maturely. This can be induced with shift work or a completely erratic sleep-wake schedule.
Do you know of any studies connecting Type 2 Narcolepsy to OCD or other ruminating disorders? Could ruminating be exhausting a person to the point that they develop excessive daytime sleepiness?
This is an excellent question. Some posit that excessive brain activity, such as due to intense stress or anxiety can manifest as a shutting down of the energy and alertness of the brain, leading to symptoms of these mysterious diagnoses like narcolepsy type 2 and idiopathic hypersomnia (IH) or even conditions not specifically related to sleep, like chronic fatigue syndrome (now called systemic exertional intolerance disease). We have to develop better ways of characterizing sleepiness and fatigue at a biological level as well as objective measures to help understand what may be causing these symptoms and effects.
I have had 4 MSLT all say narcolepsy but no cateplexy. No substance use or withdrawal. At the time there was no such thing as the type 2 category but my sleep behavior at night and day was apparently "classic". They could only say narcolepsy and assume i would start getting cataplexy. Maybe i will but it has been over 20 years.
Narcolepsy type 1 (with cataplexy) has a known biological process with objective biological tests. There is no longer reason for anyone to be in doubt about narcolepsy type 1. The details can be read in these blogs:
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-i
www.relacshealth.com/blog/15-reasons-narcolepsy-type-1-is-over-diagnosed-part-ii
My mslt was "normal" without REM, i take pills, i have huge cataplexy, then also hla gene was negative, but hypocritin test was positive, i mean my neurologist says it is rare, but that is why she Takes everything that she can make diagnose offical..interesting :)
A spinal fluid test that shows no hypocretin is definitive narcolepsy type 1. It is exceedingly rare for anyone to have no hypocretin without also having the narcolepsy gene variant HLA-DQB1*06:02:
Han F, Lin L, Schormair B, et al. HLA DQB1*06:02 Negative Narcolepsy with Hypocretin/Orexin Deficiency. Sleep. 2014;37(10):1601-1608. doi:10.5665/sleep.4066
Great question. Never heard anybody talk about this in proper detail, but I always explained Narcolepsy type 1 as REAL narcolepsy. Especially after seeing type 2 narcoleptics in interviews describe it as their excuse to leave work early lol.
Narcolepsy used to be a catch all term before it was properly defined, so I imagine as other sleep issues become better defined, we won't have type 2 anymore.
Exactly, narcolepsy type 1 (NT1) has a very well studied biology at this point and even objective testing that unfortunately is rarely done. HLA-DQB1*06:02 allele is found in virtually 100% of Caucasians and 90% of other ethnic groups who have NT1 (necessary but not sufficient). If a person is tested and they do not have this gene, then they cannot have NT1. If they do have this allele, then a lumbar puncture/spinal tap can be done to test cerebrospinal fluid for levels of hypocretin (aka orexin). If there are normal levels of hypocretin, then NT1 is objectively excluded. If there is no hypocretin, then NT1 is confirmed.
NT2 is diagnosed via the multiple sleep latency test (MSLT), which is a wildly inaccurate and non-specific test. In theory, any person's sleep pattern can be manipulated to create results meeting criteria for narcolepsy type 2 on the MSLT (most of the time of course this is accidental but the cause of the results are not identified by the clinician). There is no biological basis or biological tests known for this condition, but as you suggest, as research progresses we may find rare conditions that look a lot like the so-called narcolepsy type 2, but most people who are assigned this term now have a wide variety of other (usually well-established but not identified) causes for their symptoms.
@@andyberkowskimd okay, so here's my situation. I aced the latency test (they didn't even do a 5th sleep test because I was going directly into REM within a minute or so each time). But I've had Cataplexy since my early teens, which is 15+ years ago. I feel like the lumbar puncture is unnecessary for ME because I know Cataplexy is a type 1 condition, and there don't seem to be any cases of Cataplexy without type 1. But I know my doctors are going to need definitive proof etc.
So, would you say this is accurate, that the sleep latency test + Cataplexy is a dead cert for type 1? Which is currently what I was diagnosed for with high likelihood, but they still want me to have a lumbar puncture.
@@andyberkowskimd also very interesting to know that 100% of Caucasians possess this gene, that changes how I thought about this completely.
To clarify, nearly 100% of people who have NT1, have this HLA allele, not 100% of Caucasians. Something in direction of 1/3 of Caucasians in the US have the HLA but it is necessary to be in the 30% who have the HLA to have NT1. If someone is in the other 70%, they cannot have NT1. Thus, this is a very inexpensive test that is very helpful if someone does not have the HLA, because it can definitively rule out NT1.
Obviously N with cataplexy is more severe and more debilitating, but as someone who has suffered from N without cataplexy for most of my life, I can say with complete confidence that my disorder is very real, and cannot be explained away as apathy- even if it might present that way to others often enough! Sure, those people might have joked about leaving work early, and if they have jobs where that is a real accommodation, good for them- but in my experience, very few employers would be willing to accommodate my excessive daytime sleepiness, and as a freelancer it's even more difficult to make money. I have extraordinary difficulty focusing for most hours of the day, and only experience spikes of productivity around my medication times. I often need naps, feel weak, have terrible short term memory, and move very slowly for portions of the day. I used to feel bashful about talking about my N because I consider those with cataplexy to have it much worse and didn't want to appear melodramatic- but I've seen how it's negatively affected my life over time, and the idea that medical professionals would completely dismiss my disorder is incredibly disheartening. People with T2N without cataplexy (whatever you want to call it) exist, and just because it presents in different ways doesn't mean we don't deserve to have advocacy too.