Narcolepsy: New Answers to this Mysterious Disease - Dr. Jim Stocks

Awake when you're supposed to be asleep. Asleep when you're supposed to be awake. An inability to benefit from proper sleep. It may not be insomnia. It could be a neurological disorder called narcolepsy. In the latest post to HealthConnection.TV, Dr. Jim Stocks offers new insights on this mysterious disease.

[@EdenAnarchy]

I was diagnosed with narcolepsy in 2010. It’s a crazy disease to live with. My sleep specialist said I’ve had it since early elementary school. I’ve never been able to drive or anything like that because of it. I’ve been on autoimmune protocol diet to help, and so far, it’s helping me a lot.

[@quanmack6332]

Can you please tell me more about the diet ?

[@natalieleonard5876]

Misdiagnosed with depression and figured out at 23. Get a sleep study.

[@happygilmore6719]

Ain’t it the same treatment?

[@MrKago1]

@@happygilmore6719 no. modafinil is typically prescribed to treat the excessive daytime sleepiness which is a stimulant. its the constant state of being overly tired that causes depression. once the sleepiness is gone, the depression goes pretty quick too. source: me, once I stopped feeling like I just did a night shift every single day, it wasn't long before I came back to life.

[@heidimsw]

I disagree with what the doctor says in the beginning of this vid - that poor quality sleep doesn't contribute to daytime sleepiness in Narcoleptics. That is INDEED a factor in our exhaustion! Studies have shown that Narcoleptics achieve much less Delta Wave (slow wave) sleep than others. Delta Wave sleep is a deep level of sleep and is essential to restoring body systems and making poeple feel "rested". In addition, Narcoleptics enter REM stage (dream stage) sleep much earlier than non-Narcoleptics. Most people enter REM after about 70 to 90 minutes of sleep. Narcoleptics may enter REM after being asleep for just a few minutes. Narcoleptics often spend too much time in REM while asleep and may experience hypnogogic hallucinations. The bottom line is that Narcoleptics don't get QUALITY sleep, and that is definitely a contributing factor to the EDS (excessive daytime sleepiness) that we experience.

[@amandajenkins5880]

What he was saying wasnt that it didnt contribute to it he was saying that it wasn't the cause.

[@gdamitjanet]

I agree. This doctor doesn't really know what he is talking about.

[@reneharris1441]

I'm 66 years old and this Doctor I agree has NO idea about The Narc. Crew Sleep Rem: Can be so much! Tired to Be Tired still trying to Wake up! Slept mostly all day today! I 've Found out at this age it's going a different way Also Cataplexy Which went haywire and my Friend had to call 911 ! I thank God at Least there's more talk about it BUT it take 1 to Know 1 to Understand 1 ! watching the utube different people it effects different ways when it comes to situation in life. 1 young Lady reminded me So much of myself ! The Scribbling at the end! Not the End But the End of Eyes 👀 open Gotta a lot of those ! Being a little Humerus So funny But yet Not Funny TO MUCH LAUGHTER OR CRYING CAUSES AN EPISODE CRAZY! An When U LOOK To Someone Sound asleep U can Hear The Whole HAM CONVERSATION! lol Never Told Them Till They Asked but By Then My Work Performance was What Spoke for Me! WALKING across the street fallen But just Got up Not Knowing what JUST happened! Arm Black and blue pinched so many Times Cold Splash of Water in the Face That'll Shockingly Wake Yah! Feet Shocked Cold water as much as I could take Wake Ya up Quickly! lol Slapped in the Face by Grandmother Could hear say Wake up By this time Trying to come OUT of that Realm Hearing the Water Running Thinking She Was Gonna Throw Water in my Face NOPE ! Water Turns off She SLAPPED me Across my face so Hard I Could Hear it But NEVER felt it ! My Sweet Grandmother It Scared her More than Me Shocked the Sleep OUT of me! She jumps Back an Says I just Wanted U To Go In The Room an Lie Down so Sweetly. She Passed at 91.Yes She Was a Narc: too! Work in a Sewing Factory SO Did She! Fell Asleep wake Up Again Sewing Like She Had Not Stopped SO DID I! Taking the Good With The Bad You Learn How to Deal with the Sleep In order to Sleep But U Learn How to Deal with People who don't know how to Deal with the Sleep. Even in Coma's Never talk Negatively Never send one's they don't like or dislikes them Emotions they feel Still They can Make it With Prayer an Love an Care. Last Sometimes Some Don't want to Wake up! No Apple Bitten No Prince Coming But I Will Survive Good Dreams Do Come True! GOD Favor U !

[@Teracuda]

I agree with you. He should've clarified and/or qualified his statement by saying poor quality sleep (the lack of deep restorative sleep) and DNS (Disruptive Nightime Sleep) compounds the issue of EDS caused by the inability of the brain to regulate sleep cycles. It's a triple whammy, not just one thing, that causes EDS. Which actually makes a PWN (Person with Narcolepsy) have a more severe type of EDS. Also, it's not just that EDS is dangerous because you might fall asleep at the wheel. Living with a constant sleep debt leads to other serious health issues that can be potentially deadly. Narcolepsy is very serious indeed.

[@beauty00MD]

I have to share a strong testimonial. I was too excited yesterday. God previously cured my bipolar, I had another chronic condition which is narcolepsy, I can fall asleep in 1 minute and has previously need like 10 hour sleep to feel like normal people Yesterday I sincerely prayed God to also cure my narcolepsy, so I could have more energy to do his calling for an intensive medical program, from yesterday to today with no medication, I didn't feel any sleepiness the whole day. I have never felt this in my whole life.

[@juliechaffins2766]

I will pray, need God's medicine. Narcolepsy affecting my life. Afraid all the time.

[@kailakruger7685]

We discovered mine because I went from a great student to falling asleep in class. If I sit for too long I fall asleep wether I want to or not. They used Modiful. They used Rititalin on mine had to take it up to 3 times a day.

[@PRISSIEBURTN1212]

Me too since I was in 2nd grade and now I hear about the meds for it.

[@dfpguitar]

If narcolepsy has been identified as a deficit in a specific neurochemical, then why isn't treatment based on replacing that chemical? If narcolepsy is an auto immune disease, then why isn't it tested for through blood samples etc.. rather than a sleep latency test?

[@heidimsw]

At Stanford, scientists tried "replacing" the orexin in lab rats after they'd first removed the chemical from the rats (thus causing them to become narcoleptic). Because of the brain/blood barrier issue, the orexin "leaked" and didn't stay in the spine where it is supposed to be. That was my understanding after reading the scientific documents published by Stanford. It was considered a setback in better treatment for narcolepsy.The assumption is that orexin "replacement" will not work in humans, based upon the tests they did with the rats. My dumbed-down explanation of the study here sounds like that of a kid. I realize that. I just don't have the correct scientific verbiage to use so I have to explain in on the low-level I do know. Lol. As for your second question: Not ALL narcoleptics are actually "missing" the orexin, so even if a person HAS correct orexin levels, it doesn't mean that he/she doesn't have narcolepsy. That is what I have read. Narcolepsy is an autoimmune disease; that much we know. BUt it's not always about missing orexin (the wakefulness-promoting chemical). It also has to do with lack of Delta-Wave (deep) sleep stages. Narcoleptics spend too much time in REM (dream state sleep) and aren't able to achieve as much restorative deep sleep which is needed for people to feel rested. Also, there is a spinal tap test that can be done to test orexin levels. It's available in limited medical facilities. Again, Stanford (a leader in narcolepsy studies) is one place that the spinal test can be conducted. As I said, though, one can have intact decent levels of orexin but still have narcolepsy.

[@Donna777]

And WHY isn't narcolepsy listed on the Social Security's list of recognized diseases/disorders??? Narcolepsy is just as disabling - if not more disabling - than other disorders on the SS disability list!! Makes me so upset.

[@marshaabrady5191]

You posted this two years ago, but this is so on point. Narcolepsy is such a disabling disorder, I don’t understand why it’s not tested for in routine blood tests

[@amandajenkins5880]

Donna doesnt mean you cant get disability for it

[@gmsgms3638]

dfpguitar because then big pharma wouldnt make out on it.

[@hannahgraingerify]

Its the stimulants that we have to take everyday that worries me, the effects they will have on the heart in the future, but guess that's the price we have to pay for having narcolepsy :/

[@heidimsw]

You're so right. I had to do early retirement myself because of narcolepsy. (My retirement stipend is paltry as a result). I had to take so much Adderall XR in order to function well at my job, it began to affect my heart and my adrenal glands (and thus my thyroid). It put my body into a constant state of "fight or flight". I was no longer able to function at work and expect to live very long. I had to make a difficult choice. I chose my health and my heart and I retired.

[@Donna777]

Not only that, but the stress they create on the adrenal glands, which can cause them to be overstimulated, become fatigued and crash...which makes you even more exhausted.

[@BeeBopGaming]

heidimsw have you ever tried the medication called “Xyrem”? I’ve been on it for over a year now. It helps some, but not enough. I need a stimulant, but I can’t take them because they cause me to have intense migraines which I suffer from already. Only one that didn’t was, nuvigil, but my insurance will only approve the generic version and it causes me to be so dizzy I can’t drive and fall into walls. So I’m on disability and I’m just fighting for energy everyday. Xyrem helps, but to a extent.

[@Data_-xw7yw]

Matthew Madruga i suffer from narcolepsy and by luck discovered grass it’s the best solution. It repairs your tired mind and body so you feel more energetic

[@DWSPRODUCTIONS]

@@Data_-xw7yw no....no it doesnt...lol

[@HeleneLouise]

The autoimmune aspect is extremely intriguing

[@sarahbuchwald6874]

Did he really just say “driving a car with your eyes closed”?? And the inability to sleep at night had nothing to do with anything? ... and then to say “that’ll sleeps all the time”...!can’t sleep when I want to”... I can’t

[@myahouston20]

That is true ! You can’t stay sleep!

[@blupassion74]

Hi all! I was diagnosed about a month before this video was posted but didn't know I was living with it since 2008. I don't have cataplexy but rather the sleep paralysis & hallucinations. The first treatment I tried was Modafinil, had it only for a month, and it didn't work. Now I'm on Methylphenidate aka Ritalin ( lol they say Concerta) and although I'm only a few weeks in, this crap isn't working either! Although I do get a 20- 30min nap in during my day, when at my 2nd job (for a total of 3hrs) I will fall asleep at least 2-3 times. Right now I'm trying to fight SSDI to get some type of help because not working a 40hr job is killing me!!! I wish us all the best with this debilitating neurological disease

[@heidimsw]

+blupassion74 I tried Provigil, Nuvigil, and Ritalin with no luck. Adderall XR is the only thing that has worked for me. Also, SSDI is difficult to get because Narcolepsy isn't on the "list of disabilities". It helps to have other documented illnesses. I have signed numerous petitions that are trying to get Narcolepsy onto the list of recognized disabilities.

[@heartmomma6460]

heidimsw I have tried them all over 8 years. Some used to work and now, nothing works that great. Enough to know I can actually get out of bed, but nothing for energy anymore. What a bummer. Even after taking a holiday from each of the meds, I go back on and it is nothing like the beginning of this disease. I am desperate to find something. I have 2 young kids and need my life back. Anyone have a suggestion? Or something not listed on this comment above?

[@Diana-Artemis09]

heidimsw It is now a disease that you can claim benefits under Social Security.

[@heidimsw]

Woo-hoo! Way to go; they're finally in the 21st century. 😣

[@nancywilkerson2022]

I thought that with it not being on the List of approved disabilities, it's a hard sell, and sometimes never approved!!

[@tkozman58]

Thank you for this discussion! The more we increase awareness of narcolepsy, the more we facilitate early diagnosis and allow patients access to treatment, greatly improving quality of life. However, there is much, much more to narcolepsy than sleepiness - first of all, over half of all people with this neurological disorder - besides the symptoms of excessive daytime sleepiness and fragmented nighttime sleep - suffer from the symptom 'cataplexy,' characterized as a sudden loss of muscle tone brought on by strong emotion, especially laughter. The paralysis can be as subtle as sagging of the head and neck, or as dramatic as full body fall resulting in injuries. Furthermore, the chemical missing in the brain of people with narcolepsy regulates homeostasis, thermoregulation, and the neuroendocrine system among other physiologic functions.

[@heartmomma6460]

Well said Tam Kozman - I completely agree with you that we need to get awareness of early diagnosis. I do feel the longer it is mis-diagnosed or not diagnosed at all, the more the brain is damaged. Therefore causing even more co-morbid conditions. Just how can we do this? The Doctors I talk to over and over each visit I attend act like I am so boring - talking to the air. Not one has ever put out any of the flyers I have given them. I have given them information on conferences they should consider attending, again not a single Dr has gone to any or made mention of attending any sleep disorder seminar during their mandatory annual education/training. Have given them literature and research I found on the internet....and lots more. What am I doing wrong? I want be an advocate in any way possible. This has ruined my life completely. I want to help others so they do not have to suffer as much, beg for medication, pray for a diagnosis, feel like they are crazy, able to get the help/accomodations or support

[@asrielgaming3097]

This makes so much sense to me with my conditions and the struggles with treatment, especially all other abnormal symptoms that I get now that puzzle the doctors. Thank you so much for sharing

[@arioneafterdark]

Sinano, I hope you are right that you completely recovered. I also have narcolepsy and at one point, for many years, went into "remission". Now it's back and as bad as when I was going through being diagnosed.

[@bugzyy_P]

Im 21 years old and i firgued out through watching several videos like these and research that i have Narcolepsy with the Cataplexy. Seems that the Cataplexy didnt it start until after highschool. Feeling weak to where i have to catch myself from falling when laughing or getting excited. This is beginning to effect my life more and more as I begin to get older and time seems to fly by faster. I sleep at least 10 hours every night but miss out on a few hours due to the restless sleep. Seems like a 5 min nap does me better than a full nights sleep. So i take several of those a day to try avoid falling asleep at the wrong time. I often do fall asleep at the wrong times like in class , while driving, and even working. Wish i could go throughout my day without falling asleep. Im now in college and falling asleep in every class. It’s affecting my grades like it has my whole early years & i miss out on alot because of it.

[@23gregorius]

try Modafinil, small doses. I managed my life somehow and my family understood my difficulties. When flying I ask my neighbor at the gate to wake me up when the gate is open. In a bus I never sit; I stand in order to get out at the right stop. I will now try whether and how cannabis can help. I am now 78 and got cataplexy and narcolepsy when 9 years old. Important that you tell anybody, family and employer/clients and all will understand today.

[@kemboiz]

Hi my name is kip from Kenya.I totally connect with your experience and it's like your experience is a reflection of me.am now 31 and diagonised 8yrs ago .Fragmented and restless sleep characterise my long nights that is full of nightmares (hallucinations).Daytime frequent and irresistible naps is what has made me a laughing stock among peers.I have escaped 2 accidents while driving.My career is stagnating,my productivity needles to say getting lower, fatigue after 5min nap 😴 is alarming,atimes I get suicidal tendencies, cataplexy nowadays reduced but trying hard not to get excited in a company otherwise may laugh and fall...

[@trishtipton9428]

I just want to throw this out there. We sought alternative medicine for my daughters narcolepsy which had been diagnosed when she was 8. We were told by naturapothy and homeopathic professional that she had heavy metal buildup at the base of the brain stem. Interestingly the medical professionals said that for some reason the brain wasn't getting the message to sleep deep and they didn't know why. So I found a doctor, actually a dentist, that treated her by removing heavy metals from her body. Over a period of 3 months she had improved by more than 50%. She was actually able to stay awake while riding in a car or while watching tv. I stopped treatment because of the expense, about $500 a month and not covered by insurance. She resumed treatment at the age of 30 with the same doctor and is able to work without medication. Scheduled naps is about all she needs and her nights seem to be closer to normal sleep. Dr. Colpitts in Tulsa OK is who we went to. Her current battle is that her employer and the employees have yet to understand her condition and a need for a scheduled nap. She is currently dealing with an attorney because the harassment by HR and bullying by fellow employees is unbelievable. If anyone has a suggestion for how to deal with this aspect of narcolepsy please let me know. Thanks!

[@honestlycanadian]

Trish Tipton how did you remove the metals? Can you email me? [e-mail]

[@gettingalongeveryone.873]

Trish, Most work you get a break or time to rest/eat , she should be able to take a nap on these occasions. Some occupations it's impossible to even get a break. I don't know what your daughter does. But I see this question was asked 2 years ago I hope a resolution has taken place. I don't know if she can become self employed. I hope all is well.

[@amyrunz1851]

It's a DISORDER not DISEASE!!!!!!!! That always bugs the hell out of me!

[@ebaarm1]

Really good and easy to understand.

[@bethferguson8803]

Thank you for sharing.

[@purplepassionfreedom1352]

The doctor looks absolutely exhausted.

[@blessedsurvivor]

My husband still driving..

[@snoopyrule]

I'm a person with narcolepsy and I hate that term "excessive daytime sleepiness" because it doesn't come anywhere near the ballpark in describing the exhaustion. Try "fighting off a coma" for more accuracy.

[@6812Angela]

Im new to knowing any of this I went to do sleep study an they said I had narcolepsy but I remembering having this tru my younger days I woke up mite.I say in daytime woke up yes behind the wheel of car at Kroger an dont remember how I got there was very scared

[@PurpleHairOMG04]

Found it interesting that there was a heightened number of people with narcolepsy with people who got the certain H1N1 vaccine. Wonder if there's been any further research on that correlation.

[@carlosboot7116]

The gouvernement of Finland have something to say about the vaccination and narcolepsy. appart of that ; I think there are even similar "attacks"( narco-cataplexy) if you look at the "Mad cow" dissease wich plagued europe some decade ago, maybe anti- virus testing or bio warfare testing . Finland gov said "by injecting our people with anti-virus they are prone to narco-cata".

[@ShantayRenee]

I had the H1N1 flu vaccine on a Navy base. There was a big outbreak and Navy personal and their families were urged to get it. That was the 1st time I ever got a flu shot.

[@postables857]

Yeah, would be nice to hear more about this, and be compensated for loss of income, and oh... idk...our entire life practically!

[@misssmoove2767]

@@nevergiveup5418 perfect wording

[@brandyallison3643]

I have narcolepsy with cataplexy both are under control with medication. I have had since about 6th grade I don't even remember most of my teenage years bc of it, the bell at school would ring to switch classes I'd switch go to next class be asleep in like 7 minute s I honestly don't know how I graduated bc from 6 or7 all the way through highschool I just slept. These stories are really helpful to understand what is going on.

[@charlessmith263]

The new theory is that the immune system attacks your body's hypocretin cells, which is your good cells in your brain. Hypocretin is very important for maintaining your circadian cycle of wakefulness and sleep. When they are destroyed, leaving few or no hypocretin cells in the brain, this lack of cells are most likely that main contributors for almost all of the attacks of not only narcolepsy, but also cataplexy (narcolepsy's cousin, which is a deep sleep attack during the day in a way that you perceive that the person may have passed out).

[@23gregorius]

very interesting. It is logic that there must be some sort of a clockwork in the brain at a special place where the balance of being awake during the day and sleeping during the night is situated. When something in this clockwork does not function because some of the important cells are gone for whatever reason then the balance function is earnestly damaged. What about taking the functioning clock part from a person having had his last breath and get it inserted, just as it is done with other organs (heart etc.) ?

[@weirdscience8341]

Lol cretin

[@Frank020]

Holy crap..when I said Bud you said it all.

[@ceecee9209]

My father has narcolepsy and my mother smoked while pregnant. Stanford said I fit in a specific Category of Narcolepsy . After knee surgery in my 20’s, I reacted heavily to The Anesthesia . I was hospitalized two weeks longer due to paralyzing my ability use the bathroom. It was this surgery that triggered sever narcolepsy and the onset of cataplexy.Anesthesia scares me. I have demanded not to have it and stay awake instead. Not that that’s a thrill to experience but loosing memory , ability to use the restroom and worsening my Narcolepsy, it just has to be. Anyone else notice a profound narcolepsy effect from anesthesia?

[@klistakiriclarey4068]

Yes, anaesthesia scares the heck out of me. My blood pressure drops drastically and I don’t wake from it for hours. I’m scared my next hospital appointment I may not wake at all.

[@melaniatrump2166]

y not synthesize that chemical (people with narcolepsy can't produce) and have them inject/consume it?

[@juliechaffins2766]

Melania?

[@Frank020]

Hypocretin is in the brain. Like he said researcher w millions in funding w find out in 5-10 yrs.

[@joevarga6313]

I appreciate the time taken for this interview, and the presentation of it here for educational purposes. I am a little puzzled at his comment that head injuries present "Narcolepsy Like Symptoms", which seem to imply that head injuries cannot result in Narcolepsy. I personally had no symptoms of Narcolepsy before my car accident, and I have been diagnosed with Narcolepsy, presenting almost every symptom consistent with Narcolepsy, although my cataplexy is only minor with just drooping of my eyelid and knee weakness. In my MSLT, I had 5 incidents of REM sleep. Is it possible that I do not have Narcolepsy and that I suffer from almost every symptom because of a placebo effect? There doesn't seem to be a lot of information on "Secondary Narcolepsy", so what are you thoughts?

[@Frank020]

OMG I thought there were new treatments.

[@blauwzakjecrack]

i solved 80% of my day time urge to sleep by avoiding all sugars and hydrocarbon in my diet.

[@blauwzakjecrack]

I also feel that it is a autoimmune effect, i am immune for flue/influeanza, in my 35years i have litterly been sick 2 days with a specfic stress situation as the instigate. My teeth are perfect, never had a cavity.

[@blauwzakjecrack]

I started having problem,s waking up in the morning after a a sudden change in exercise. I used to bycyle to work 2x30 5days a week from age 12 till 16 min .I rode my bike a hard as i could, so it was a prety heafty 30 Minuits. since i stopped bycycling i could not wake up,i tried evrything,but nothing workeed, the force to keep me in bed was insane,as i where super drunk for example.

[@taylorman4080]

For my narcolepsy/cataplexy I take 3.75g×2-doses every night along with 1 or two amphetamine salts depending on if I get a nap in... I would also recommend taking a low dose of anti depressant if playing sports. but not daily for an inactive person.

[@taylorman4080]

3.75 of Xyrem

[@marichristian1072]

What about catalepsy?

[@Teracuda]

This was a brief overview of Narcolepsy and some of what the Doctor says is lacking in clarity or misleading. The take away is that they know more definitively now that Narcolepsy IS an Auto Immune Disorder rather than only suspecting that it is. I've believed that was the cause ever since I was diagnosed with it and did research for my own edification. I don't have a PhD or even a college degree and I'm not a scientist. However, I am a PWN (Person With Narcolepsy) with Cataplexy. I actually figured out on my own that I had Narcolepsy because I learned about Cataplexy first. I had it but didn't know what was wrong with me. It took randomly seeing a story on TV about a young girl who couldn't laugh who had Cataplexy. Her symptoms mirrored my own. I read up on Cataplexy and learned it's only found in Narcoleptics. I also had a lot of EDS and never made the connection until then. I learned at the time that one "theory" was that it was an auto immune disorder. I believed my case proved that theory because I was able to trace all my symptoms back to my childhood about the time not long after a serious bought of pneumonia where my fever spiked above 104° causing me to go unconscious. I was rushed to the hospital where they were able to bring my fever down. I have no recollection of the trip to the hospital. I deduced that that episode was the auto immune trigger for my narcolepsy. I don't fully believe it's hereditary, but will concede that genetic predisposition is plausible. Classifying it as a Neurological Disorder is not wrong either as it is a disorder of the brain. I do appreciate that the Doctor does refer to it as a brain injury. I don't really like the term "disease" that some use. All in all, I appreciate that they are continuing to learn more about it. After years of symptoms believing it was Narcolepsy, I was later finally officially diagnosed after tests, confirming what I had already known. I do feel the cause of EDS should be clarified. It is multiple factors not just the lack of sleep regulation. Also, I do not agree with the characterization that PWNs sleep a lot. That isn't true. We're constantly tired and do get sleepy at inconvenient times, but on average we don't really sleep all the time. It may appear that we sleep more because we fall asleep at times that are not normal for sleep. Some do have more severe symptoms than others and may experience excessive sleep attacks, but not all PWNs have the same degree of severity, which he did note. I would basically describe it as "the brain tells you to sleep when you want to be awake and tells you to wake when you want to sleep". I may fall sleep during an activity and then decide to go to bed only to lay there awake waiting to be sleepy again. Through it all, however, is the tiredness and fog. PWNs live in a constant state of sleep deprivation, contrary to what the doc would have you believe here. That is the problem with trying to understand Narcolepsy. The scientific and medical communities are rarely in agreement, and rampant misdiagnosis and misinformation permeate the field.

[@trinathigapanich7792]

What are your thoughts on an upcoming once nightly sodium oxybate?

[@Sinan97082]

Does someone know how to contact them??? I have suffered under narcolepsy for 6 years and than I completely recovered. Just by meeting a doctor (which I didn´t knew back then) ... I would like to join for research of let me test me maybe they could find something useful

[@UTHealthNortheast]

Dr. Stocks practices at UT Health Northeast in Tyler, Texas. You can learn more about sleep medicine and Dr. Stocks: www.uthealth.org/patient-care/specialties/sleep-medicine

[@VyNguyen-np5th]

Sinano how did you recovered?

[@Jenny-bf4ss]

My neurologist is absolutely amazing he and I agree that my MS caused narcolepsy due to the location of a lesion in my brainstem, which controls and regulates your sleep cycles.

[@Why19501]

Can it happen after a concussion?

[@ratworks89]

How do you verify that the viruses didn't destroy the cells, that's kind of what viruses do, and the body is just doing its best to fight the viruses, that have invaded those cells?

[@heidimsw]

Viruses don't destroy cells. They invade them and use them as hosts.

[@duanehicks9572]

Some of his descriptions and observations are incorrect. Generally speaking, he is close.

[@donfields5790]

will people with narcolepsy with treatment be able to have normal lives? or be able to be pilots or truck drivers?

[@dfpguitar]

Which chemical is being referred to as "keeping us awake" ? , also, if in the case of these vaccinations, an auto-immune reaction caused damage to this neurochemical production, how does that mean that all Narcolepsy is auto-immune related? Many people have narcolepsy since birth

[@crystalkeelin5806]

+dfpguitar actually narcolepsy from birth is extremely rare, if not unheard of. Narcolepsy usually develops somewhere around age 20.

[@heidimsw]

The neurochemical responsible for keeping us awake is called "orexin" or "hypocretin". Some (not all) narcoleptics are lacking in enough orexin, thus causing daytime fatigue. Some narcoleptics have enough orexin, but they are unable to reach enough Delta Wave (slow wave) sleep at night. Narcoleptics oten spend too much time in REM (dream state) sleep which is not as deep or restorative as Delta Wave sleep. Delta Wave is necessary for people to feel fully refreshed. It's also responsible for the body systems to be properly restored. Lack of Delta Wave sleep creates daytime exhaustion, lowered immunity, and difficulty staying alseep (since being in early/shallow stages of sleep causes poeple to wake more easily with the slightest sound). An autoimmine disorder is classified a disorder where the immune system is attacking itself. The CAUSES of the immune system attacking itself can be different, however. The CAUSES that have been identified in Narcolepsy are the following: 1) many multiple chronic strep throat infections in childhood 2) those certain batches of H1N1 vaccines (mostly in Europe) 3) severe trauma to the person (either emotional/PTSD or physical, as in a terrible car accident). There are other suspected causes of narcolepsy. People very rarely show any signs of narcolepsy as infants, even when there seems to be a genetic reason (a close relative is narcoleptic). The symptoms of narcolepsy generally appear in the teen years or young adulthood.

[@Donna777]

My narcolepsy developed at age 14-15 after I was assaulted and punched in the head.

[@myfavoriteplanet3247]

It's hell

[@sonjawade8454]

Yes it is. Causes major depression. Having a difficult time. Thanks

[@insanemeddic]

paul you are a sound alike Dr. Phil

[@chadwest4353]

I suffered from narcolepsy for a long time. At first they thought it was just depression or insomnia but a sleep study revealed it was narcolepsy. Now I take modafinil which helps but gives me slight aniexty.

[@TheMickey0718]

+Chad West We are 16 times more likely to develop anxiety than a normal person. It may not be the meds

[@chadwest4353]

Your right I think the aniexty comes from being tired and your body making extra adrenaline to keep you awake.

[@chadwest4353]

Jamison Reid​ Your right I think the aniexty comes from being tired and your body making extra adrenaline to keep you awake. 

[@chadwest4353]

Or something like that.

[@TheMickey0718]

Interesting.. Hm. I have really bad headaches too. But no cataplexy or sleep attacks, which is interesting. I've never really fallen asleep during the day while doing something. When I'm occupied I'm fine. But if I get bored, all I think about is sleep.

[@DCFunBud]

I got narcolepsy from the swine flu vaccine in 1976. My sleep doctor says I have sleep apnea and nothing else. I am becoming desperate. My CPAP machine helps, but it doesn't keep me from falling asleep every day.

[@heidimsw]

Try to find a NEUROLOGIST who is certified in sleep medicine. Pulmonary specialists have tunnel vision about apnea. To them, it seems like the whole world has apnea! Lol! Neurologists will focus on the NEUROLOGICAL manifestations of narcolepsy. He/She will be able to work with you to use a combination of meds that will assist you with wakefulness. Good luck!

[@lisadee0276]

How do you know if you have narcolepsy if you haven’t been diagnosed?

[@LauraLye61]

Elle Deedee because she lives with it just like I have for years!!!! Some of us know without being tested like ME!!!! After years with know one understanding, bam they eventually listened to me!!!! We know, we live it!!!

[@LauraLye61]

Press on and don’t stop!! I look back years upon years ago! They want to ignore it!! Finally, I seen two of the best doctors in the world! Keep going Please keep going.....

[@mwamussa]

This is not a disorder. It will take at least a century before science realizes what's happening. Poor souls. I have won different lotteries 10 TIMES in 12 days thanks to my "narcolepsy". Listen to your intuition...is my last word. Good luck everyone.

[@proudscorpio46]

Musa Issa care to explain in more depth?

[@InsideTheJoshMind]

Musa Issa if it’s not a disorder then how can we get it under control. I have some psychic style capabilities. But I’ve been struggling with sleep issues for 15 years. Finally diagnosed with apnea earlier this year. Hallucinations while falling asleep. Hypnic jerks, and sleep paralysis from time to time complete with seeing shadow people from time to time. So a little expansion would be greatly appreciated. Especially how to get it under control so that sleep can come! Thanks for any help you can give.

[@jadetaylor2443]

Can Narcolepsy be caused by psychological trauma?

[@alaricbuckell5467]

I am 14 years old and have narcolepsy I have seen a few videos of others having this condition and I am able to withstand it for many hours such as 10 before i fall asleep Is it because I am young?

[@risalockwood1978]

i don't know if age is a factor

[@emileegrace3989]

Age isn't a factor, but you could be sleeping and not know it. That's possible too. I'm 16 and have it as well and I also (I think) can stay awake for hours on end, but I'm dragging by the end of the day.

[@truckerguy28]

So shouldn't this be government compensation because my wife didn't have it until after h1n1. And it's changed her whole life

[@isceaakajessicaogradach9359]

I have narcolepsy.

[@lisanoto1222]

My doctor told me my narcolepsy and cataplexy was not genetic or hereditary...

[@Jason-sc8gc]

It's linked to certain genetic risk factors but genetic narcolepsy is incredibly rare. 30% of the population has the predisposition but only a tiny fraction develop narcolepsy.

[@doppetheelf5861]

Is there medicine people can take.

[@doppetheelf5861]

If so, what is the medicine called?

[@donnahill4625]

has a person that's has narcolepsy he said one reason of getting it is hereditary I disagree I'm the only one in my family that has it I've had narcolepsy since i was 16

[@lisadee0276]

Donna Hill one way. Not the ONLY way.

[@taylorman4080]

depressants made me fat

[@nancywilkerson2022]

ME TOO!!!

[@Why19501]

I bet it does

[@patriciomark4337]

i am driving a motorbike for almost 2 and a half year and i don`t remember a day without sleeping >.< there is one time when i don`t even remember how the fuck i reach my destination . if anyone reading this comment of mine please i really need your help . i have this shit for almost 18 years . here is my real name patrick mark v baring please anyone

[@TacoBaco]

This guy is throwing out huge generalizations which are factually inaccurate. Given the lack of information readily available regarding this disease, I feel his lack of appropriate terminology is especially inappropriate, and generally offensive to those of us that are actually coping with this disease. The exceptional ignorance that surrounds narcolepsy, directly (and negatively) affects our way of life.

[@martikocian888]

Why your vids so old surely much knewer and have new treatments stem cell replacement histamine uptake all this information old!!! all most specialist still only give amphetamines very bad long term effects

[@staceyleeellis9160]

So don’t have the COVID vaccine !