Understanding the Orexin System: Why it Matters

[@Narcoplexic]

This comment is really not in response to the video, I have mad respect for Dr. Scammell and the information he presents in the video. The following rant (which some may see it as) are things that have been on my mind recently, as I continue wanting to help others, but feeling limited by some of what I mention below; these are observations, realizations into certain matters that are very apparent and real, at least for the patients who aren't lucky enough to find benefits from the current medications. There's a real disconnect, a gap and/or division, out there to do with how patients are viewed, analyzed and treated. For many of us with the disease who have not benefited from the medications, who have had more troubles while trying them and been left only with lifestyle adjustments/adaptations to improving health and living with the disease, as best we can manage to; we are left in an extra harsh position, sometimes being threatened by docs who are solely focusing on medications based on clusters of symptoms, completely overlooking the patients system broadly speaking. Part of it is not just unique to Narcolepsy and a broad issue in medicine, 'treatments should be tailored to the individual's brain and system.' Also, Type 1 has been noted to be caused by an autoimmune process, damaging the orexin/hypocretin receptors in the hypothalamus, why does the disease remain a 'mental disorder' in regards to the diagnosis classification coming from the 'DSM -5 Diagnostic Statistical Manual of Mental Disorder, 5th Edition (2013).' Part of what is at play in the disconnect, is psychiatry being the backgrounds that so many sleep specialists as well as neurologist have (that's not to attack them though, it has to do with the approach mentioned already, a broad issue in medicine), there is a matter of confliction to do with assuming everything, especially including/towards Cataplexy (which hardly any doctors will be willing to discuss in any depth) is psychological. Once a patient has basically developed a sort of PTSD from having horrible experiences with doctors that are unwilling to be honest that they do not have the expertise, but rather present as though they do, it is really hard for that/those patient/s to have any desire to go back in and discuss the disease, with any doctor. This is a common experience and so is difficulty with the medications, that's not to say there aren't great doctors with actual expertise on the subject, nor to say that many are not being benefited by medications, but it is more common than the Narcolepsy foundations, organizations, institutions, doctors and researchers, dare to recognize. Wish there was an easy way to bridge that disconnect, gap, division, confliction, classification, etc... As someone with Type 1 who had very regular, frequent severe Cataplexy through my 20's, now in my 40's living super isolated, not able to interact and live like I was able to before the symptom/condition and disease impacted and altered my life, having not had any benefit but actual huge additional difficulties from the medications I've tried for the disease, and having what seems like PTSD from many of the doctors I've interacted with as a patient; well, I don't have the solutions, though I have many observations, realizations and questions that I can easily pose. Also, I have many breakdowns for every tetrad symptom, especially for Cataplexy, there is so much more at play in the disease, and you don't hear about how common it is for the tetrad symptoms to combine with one another. It feels like the only interest is on meds, rather than the patient, and a better understanding of what the patient goes through, how a patient can dissect the tetrad symptoms once they have a broad understanding into what the terminology actually means along with the research that has occurred in the past 23 years or so. The disease, the tetrad symptoms, are fascinating but so many are just uncomfortable with the topic, or hardly interested in hearing about it.

[@kz4319]

Yes those of us who are a bit older have had a life of being gaslit by doctors. I now have an aversion to doctors and the medical systems. Also it seems the side effects of the current medications in the (or at least my) older body outweigh any benefits. I can only tolerate micro doses if any. This goes for any type of medication, not just narcolepsy treatments. All that being said I find the science fascinating and super appreciate the researchers and advocacy foundations. I’m hopeful for the next generation. I’m also very interested in prevention which would mean finding exact causes which no one seems to be concerned with. There’s no money in that.

[@Narcoplexic]

@@kz4319 I'm fully with you, haven't benefited what so ever from any of the current medications. I have some hope and want to be optimistic of the upcoming Orexin Agonists medications, though what is wild is how much money there may be in them which is very much, why there's been a very big rush to such medications. The Hypocretin/Orexin discovery in Narcolepsy in the late 90's, has been said to be the largest discovery in sleep medicine since that of Rapid Eye Movement (which happened way before sleep medicine ever became a thing, and it did, only because of the annual $5-$7 Billion industry that is Positive Airway Pressure devices for sleep apnea). Because the Orexin Agonist medications, if safe and effective, will be likely also use-able (in time) for weight loss, addiction recovery, and depression which each of are massive blockbu$ter drug avenues, much more than what Narcolepsy or Hypersomnia Disorders will ever bring them, alone. And, in that, my observation from being interacting regularly, having attended over a dozen different Narcolepsy events/conferences, and being deeply immersed in that science which is very helpful in understanding 'the why and the how;' while my observation is that in such a rush for such medications, which the science is directed towards, there's been a growing disconnect, a gap, and a complete skipping over of 'the what' being 'the living experience.' Personally, I try to dive deeply into 'the what' and as I haven't benefited from a med, I don't go into them aside from mentioning that they do not work for everyone which is far from how things are presented on the regular within the realm 'of medicine.' What I try to do and think is super important, is offering what are actual 'insight/s and clarity' towards living with the disease and the difficult symptoms of it, there's a need for more than medications, a need for helping people to adapt to living with it. It literally pains me, each time I go to these events and have interactions where people are so convinced the meds will work for everyone, and it's just a matter of finding the right one; while if you try an actually discuss most especially the symptom Cataplexy, well the conversation will be very very shallow and limited. Yes, the symptom/condition is touchy, it is difficultly complex and talking about emotion is taboo, so rather than dive into it, there is a run away from it sort of response, or touch on it in the most shallow manners. While quite literally, the most common terminology used to discuss, ask about, or talk about Cataplexy, is 'muscle weakness' which is profoundly off-base with how Cataplexy feels as well as how it effects a person. And, just replacing 'muscle weakness' with 'physical muscle interference/s' along with what are 'distinct inner sensations' (which can be very hard to tune into, because of just how deeply rooted the symptom/condition is, within a persons persona, character, traits, mannerisms, feelings, and even mindset) could literally improve so much of the misunderstanding and rampant confusion out there. 'Muscle weakness' is exactly the same feeling one experiences during 'sleep attacks' which is part of Excessive Daytime Sleepiness, so all that happens when the common terms are used and in every dictionary definition of the term Cataplexy, well literally (IMHO) largely exacerbates that vast misunderstanding and confusion out there around the symptom, by all parties. I've self published various books at this point, to document my perspective, to try an potentially reach and offer some insight/s and clarity from a person living it, and for there to be something out there that can be helpful towards adapting to life with the disease and symptoms of it, especially severe Cataplexy. =[]

[@evelynhawley2518]

I was diagnosed with Narcolepsy/Catsplexy 34 years ago. I was given Ritalin and Tofranil. When I started having children I stopped taking medications at all. About 15 years into things I started talking Provigil and there was a huge shift-- it was like the storm clouds lifted that I didn't even realize I was living in. But my sleepiness and cataplexy symptoms were still very debilitating. Another 10 years of not much change. Then, I started school to become a licensed massage therapist and bodyworker, and was introduced to many healing modalities. In the last 10 years, my symptoms are significantly better, and they continue to improve every year. Examples of the degree of change: At the time I started schooling for massage therapy I rarely drove outside of my own town. Now I can drive for several hours without becoming drowsy. I used to have cataplexy episodes multiple times a day. Now, they are very rare. I still take a nap every day, though I CAN go most of a day without a nap if I am active. I just know it is best if I don't. However, When something emotional happens, I will become drowsy. If I let myself sleep at that time, I will wake up again shortly and feel much better. After a bodywork session, or acupuncture, I will need to sleep. I wake up after just a short time feeling great. It seems to me that the sleep is actually therapeutic. And the more I allow this process, the less significant my symptoms become. Is there any research being done in any areas that would be related to these issues?

[@evelynhawley2518]

I participated in a dance class (Femme) that allows the expression of emotion, yelling, crying, laughing... it was very difficult but very moving. It was the next day that I was telling my children the story of a practical joke I participated in as a youth. I was fully laughing as I explained what happened. As I continued, my children stopped laughing and were staring at me because they hadn't ever seen me laugh like that without falling down. According to my 30 years of symptoms, I would never have been able to finish that story.

[@liamluzmarina9913]

What about building a genetic database of people who suffer from narcolepsy before and after onset to identify which genes flip so a gene therapy can be designed to turn those genes back. Additionally, researchers have managed to reprogram certain brain cells to produce Orexin so combining these two things could potentially cure the disease

[@darbymcbride41]

Imagine having narcolepsy, like I do, and watching this and being forced to realize that you have NO CONTROL over your quality of life because your mind is destroyed. It's honestly amazingly heartbreaking

[@fishbrainCTRL]

The plus side is, the discovery of lack of OREXIN has led to breakthroughs in treatments. Orexin Agonists are in the works. Some have been in use in France for decades on a compassionate basis. Treats the root at the Orexin center in the brain, rather than current medication which tackles symptoms.

[@fishbrainCTRL]

Also, you got special dream powers so make the most of them.

[@alorcay106]

I have Type 1 Narcolepsy ocd, adhd, was also treated for ptsd due to childhood trauma,RA, RLS, Hashimoto’s (over 1300) cognitive issues, aphasia, dyslexia, pcos, ocular headaches with oras. I know Orexin receptors are found in other areas of your body. Btw I am on both ritalin and modafinil. I know it may seem like my life is possibly a hot mess, but lol with some bio hacking I have learned a high protein ( carnivore diet) and over loading my body with activities seem to Help me the most but has the most social downfalls. If guess do you have any knowledge of natural ways to increase orexic.

[@parthiaharris655]

That's the greatest thing I'm feeling normal but what is normal when it comes down to narcolepsy cataplexy when you they say you're not supposed to laugh or supposed to cry I've done both deep down inside you're not supposed to hold anything inside so now they give you something weather cataplexy which I find best thing is to just let it go I've been falling lately when I too long but thank God at least I know that I'm going to fall I have an Innovative mind and if you ask my doctor about me and narcolepsy he explained to me every narcoleptic is different so everybody doesn't have a loose native dreams but some of the medications they give you causes hallucinations I took wakix about 3 weeks and I was seeing men walking over my head no wonder where that came from he put me on that and gave me sunosi everything you're talkin about describes sunosi but seeing that he retired I had to find another doctor because it's not really keeping me awake but I am enjoying and getting from you information that is well-needed I don't understand why they use rats rodent dogs have narcolepsy even though they both are two different type of species a mouse and a dog I could never understand that then they give the medication to a human anyway is this is a good topic and I appreciate your teaching

[@parthiaharris655]

I have narcolepsy cataplexy I hate taking medication the effect of it is so light I'm listening to what you're saying sometimes I'm wondering why I'm taking the medication because I'm still sleeping innovative ideas but to share them is one thing to tell about it is another and to know about it is just what I know but who to share it with

[@darbymcbride41]

I was found violently and given a felony for falling asleep driving and admitting I wasn't taking the medication. The meds are awful. I was a completely different person and I couldn't weigh the loss of personality and character for the inherent anxiety and overwhelm I was granted by stimulants. I effective lost my right to do better for myself EVER again because of a dog and pony show in the judicial system. Shame on anyone for trying to do their best. You knowm

[@DitchTheMess]

Why is Xyrem still classified as an orphan drug? The cost is overly extreme and prohibitive.

[@liamluzmarina9913]

How much evidence is there that for type 2 Narcolepsy the molecules of Orexin are targeted and if so could an immunosuppressant perhaps be 1. and effective treatment and 2. a diagnosis measure to determine who has type 1 or type 2?

[@liamluzmarina9913]

The brand new research showing a way to treat autoimmune diseases by attaching a carbohydrate molecule to the molecule you want the immune system to ignore and administering that intravenously has been shown to turn off that part of the immune system because it goes through the liver. Could this be possibly used to treat type 2 narcolepsy by turning off the immune system?

[@parthiaharris655]

Okay why can't they use something that's already out didn't make it by a pharmaceutical company it was on Shark Tank and I was trying to get the man's name anything that goes in your nose goes quickly to the system and that's what he had invented I wish you could look them up