Emmanuel Mignot wins Breakthrough Prize for discovering cause of narcolepsy
med.stanford.edu
med.stanford.edu
I enter a vivid dream state within seconds of closing my eyes when sleeping. Sleep paralysis almost every day multiple times a night. Pure utter terrifying demonic nightmares and hallucinations to the point where at its worst I was too afraid to even try and sleep.
I've basically been chronically sleep deprived for about the last 10 to 15 years but was only recently diagnosed a couple years ago.
It's very debilitating at 33 years old and there is only one real drug that actually addresses the issue. Xyrem, really GHB, which just forces your brain to get deep sleep. It isn't a cure, but it's the closest thing we got right now.
The disease has basically ruined my life but Im thankful to be where Im at. A lot of others with the disease aren't so lucky. Especially if you have no access to any real medicine.
Your brain will just continue to fry itself without the needed restorative sleep.
It seems like such a cruel disease. I hope there will be better remedies ahead.
So it can definitely be a barrier for certain career choices. Luckily working in software remotely has afforded me a lot of accomodations. I truly don't know what other field I could be in that would simultaneously be flexible enough to accomodate my disability and also lucrative. Im glad I live now! I would have probably ended up Homeless if I was born 60 years ago.
I'm medicated now so a lot of my symptoms are not as bad as they used to be. I am able to drive and no longer suffer from "sleep attacks" but there was a point before my diagnosis when I was so tired I could fall asleep while driving and not even notice. Very dangerous and a very scary experience. Most days I had to take naps every 90 minutes or so and self medicated with approximately 1g of caffeine a day.
Unironically for a lot of narcoleptics we can suffer from delayed circadian rhythm disorders as well so interestingly my brain is more awake at say 11pm than 11am.
I hope that this discovery will help eventually find ways to mitigate your symptoms.
As a complementary, I would take glycine 3gramm 5 night per week, which has very low tolerance building and if you watch the studies is extremely potent at increasing sleep efficiency. I would also consider Agomelatine. Also I would take potent antioxidants with long half life in order to reduce sleep deprivation toxicity (e.g. ALCAR 2g) and NAC. Note that alcar can compensate many neuroreceptors downregulations. Although antioxidants unlike above recommandations are for chronic health and won't likely help your perceived acute sleep. Finally I would take a potent synaptotrophic in order to reverse large amounts of past neurotoxicity. Taking magnesium l threonate reverse IQ-age by 9.6 years.
BTW is baclofen as effective as GHB? If so then do it as GHB is neurotoxic through paradoxal excitotoxicity, a byproduct of agonizing GHB receptors. Although it's possible that this toxicity can be reduced by taking glutamate antagonists such as memantine
Oh and since you say you have too much REM sleep.. You have to understand that this excess relative to most humans might be needed for you as a way to compensate for other biological deficits, although maybe not. If you wanna try an original approach, there are drugs that specifically decrease REM, for example IIRC the benign antidepressant moclobemide reduce REM sleep by 1 hour. Although it improve other patterns of sleep (such as probability to wake up) https://pubmed.ncbi.nlm.nih.gov/2148341/
Oh and now that I think about it, you mention highly vivid dreams: Highly vivid dreams can be caused notably by two things: 1) a too high amount of choline. It is well known (and every lucid dreamer try it) that taking e.g. Huperzine A, which increase choline levels by decreasing its catabolism, induce vivid dreams. It's possible that your metabolism produce too much choline or catabolise it too slowly. However be very careful experimenting with choline blockers/catabolisers as choline is necessary for cognition (a nootropic) and is a very important neuroprotectant especially for myelin. Therefore ideally try to measure your choline levels (via urine tests?) Choline antagonists exists but dose can easily become toxic, as usual everything is poison, nothing is poison, it's the dose imbalance that makes the poison.
The second main cause of vivid dreams is: Special sleep phases (called ~hypnoagogic) there is one when we enter sleep and one when we exit sleep. At those transitory levels can be experienced extremely vivid dreams because the brain is in too high wake up state. I have personally experienced 3 times those special dreams while waking up, I was mind blown by the realism of the hallucination.
Note a lower priority atypical sleep promoter is oleamide.
Essentially though I would consider taking eugeroics during the day such as armodafinil or Vyvanse.
Note: everytime you try polypharmacy (combining multiple drugs) titrate doses very slowly, especially the ones that have similar action mechanisms, e.g glycine is a downer like ghb hence slow titration is very important.
BTW I'm sure you did it but diagnose for sleep apnea.
I have narcolepsy.
As my neurologist would say, self-reporting of sleep quality is magic and voodoo until the sleep study shows there is no deep sleep.
There is nothing else like Xyrem in terms of what makes a life-changing difference.
Should be great for narcolepsy
I hope you manage to get better treatment in the future.
If you are still suffering from nightmares, lucid dreaming[1] can be practiced and learned. I doubt mastering lucid dreaming is easy, but even without nightmares, it is its own incentive.
[1] https://en.wikipedia.org/wiki/Lucid_dream#Suggested_applicat...
Not everyone has vivid dreaming, but hallucinations of vision and sound while not sleeping are also possible. Life with narcolepsy and no medication is a life of great difficulty, as it's essentially sleep deprivation. You can't just sleep it off.
Diagnosis often coincides with having been sick, but it's not the virus that is the problem. It's the immune system. It really is an invisible problem to others. My own family had a hard time accepting it.
Most people would be surprised to learn I have it, but medication helps a lot. I also still take at least one nap a day. The medication administered for daytime use is stimulant class drugs, and this causes being tired as well with higher heart rates. But it's better than no medication. I am super thankful for medication that helps. Xyrem is such a simple drug and I frown on Jazz pharma squeezing every $$ they can from it. But from a treatment standpoint, I have a life again.
TIL
Or, I wonder what other diseases are autoimmune in nature? But autoimmune diseases that attack the brain or nervous system (Parkinsons?) seem like a very interesting avenue of research.
Sort of three layers of how it presents, the brain differences that directly cause the presentation, and the underlying mechanistic causes of those differences.
What got me on this path was my own son. From the time he was only a few weeks, he wouldn’t sleep for more than a few hours on his back but on his belly would sleep the whole night. The nurses in the NICU put all the babies on their tummies to get them to sleep. We threw out the doctor’s advice and tummy slept him with good air circulation and were far better off than many friends who thought their baby would die if tummy slept. Everyone before 1994 was tummy slept. What convinced me to try it was watching the nurses, reading a study on air circulation and SIDS, and that he slept great on top of me tummy down.
I agree that good sleep is more critical than people realize.
So in this study, a fan reduced SIDS as much as forced back sleeping. Again, the point is they don’t know why backsleeping reduces SIDS. One theory is it puts the baby’s face higher up. The fan seems to support this.
I’d be curious to interview parents of kids with autism and see how militant they were about back sleep and if their kid slept well. Some kids seeming don’t mind backsleeping but others hate it. And you can tell by simply letting them tummy sleep for a night or two and seeing if they sleep longer.
If this hypothesis does pan out, it’s not unlike doctors advice to avoid peanuts leading to a huge increase in peanut allergies. Only for them to later say, whoops.
[1] https://www.premierhealth.com/your-health/articles/healthnow...
> While scientists continue their research, Dr. Belcastro recommends that you and caregivers for your baby faithfully follow safe sleep guidelines to minimize the risk of SIDS. These precautions are especially important from ages one to six months, when babies cannot roll themselves over:
> Place your baby on his back to sleep – not on his side or stomach.
how do you make it work “on top of the parent”? e.g. how can the parent ensure not to roll over and suffocate the child?
Babies sleep a lot more than adults, so they can sleep on a parent/guardian who is awake.
This would make it very difficult to target a specific gene to edit without having a wide blast radius.
Viral particles can not only be picked up as antigen, but they can also serve as adjuvant to aid the immune system in learning the wrong thing.
Auto-immune reactions are pretty rare. Central and peripheral tolerance are supposed to delete any cells that are close enough to matching against self. Developing allergies (eg. pollen, dog, etc.) can happen this way [1], and there is less mechanism to prevent it.
And, assuming that some of them did have a talent for it and computing wasn't an option, it's not likely they'd be interested in it anyway. I was pretty great at badminton yet don't play it with any frequency.
The type of person who works at a FAANG or an investment firm isn't going to suddenly seek a career that requires more work for less money if data harvesting type jobs stop existing. They'll pivot to the next plausibly profitable gig.
For structural reasons, careers that attract those types necessarily have to be in sectors of the economy are flush with cash. Governmental investment is not sufficient to create massive salaries if there isn't raw money-making capacity there to begin with. Of course, medical research has its winners but it's not nearly in the same league of certainty of opportunity than tech or finance. There should still be investment to make these jobs attractive anyway, but you are not going to have the massive shift in our common fortunes you are envisioning here.
It's a bit similar to those arguments implying that without religion we'd have teleportation by now or something along those lines. It completely ignores the structural nature of the problem and how the identified 'negative' sector actually works in tandem with the rest of the society in question. It's a flawed view of how incentives really work.
The workers didn't get to those roles promptly either. They saw an opportunity and took degree programs that would get them there.
> The type of person who works at a FAANG or an investment firm...
This is a generalisation that perhaps doesn't hold true for everyone. But what if adtech was banned and the Faang job didn't exist?
> Governmental investment is not sufficient to create massive salaries
a) change it then. b) I am sure there are plenty of very smart hn types who would have chosen academia without a faang salary, if they felt a research rules was a feasible way to make a decent living. There is middle ground here.
Ideally, we want to maximize the number of such persons working in high S careers. The rest is just incidental from a societal perspective. Our problem is that high S careers also tend to be lower in M and higher in D, because they involve painstaking long-term research where profit occurs much later. On the other hand, they also tend to be higher in I but it's not guaranteed. Let's assume that everyone wants low D, since it will logically be the case for high M and for high S and high I the D will not be seen as D in a sense.
If we start from the basis that we should increase governmental investment in the sciences anyway, we don't have to worry about people who seek high S and/or high I. Either we'll be able to meet their correspondingly low-to-medium M requirement or they will naturally seek out the 'right' career without any input. We can forget about high I low S because we can't really offer them something that will motivate a career change towards the topics we want.
The problem with the middle ground is that in a sophisticated capitalistic economy, the opportunity cost for M can rise to incredible heights. The alternatives open to a smart person in our world are enormously high-M, and the definition of a decent living has to take this into account. For the government to convert a medium or high M, low S, low I person into a high S high D career, you'd better add enormous amounts of M over the long period of time needed for research, which is not something that the public sector can justify even if they do technically have the resources for it somewhere. The I can help balance this but working in low-S sectors can also have plenty of competing I on its own, and I is not guaranteed in the high-S world to begin with.
We can start thinking about hypothetical ad-less FAANG-less financebro-less worlds to try to get rid of that M opportunity cost, but it is a fairly contrived exercise and doesn't guarantee that other very high M careers might not pop up in their absence.
Googling, I see only dire reviews of orexin tablets, usually due to the other ingredients. What gives?
I have episodes of dire fatigue, and a way out of that mess would be very welcome.
You could just take modafinil if you wanted to stay awake.
Ask a doctor to help you figure this out. Wild guess, as a random layperson on the internet with no formal qualification: Could be lack of vitamins (E, D3, B5 or B6) or a melatonin insufficiency or a irregular sleep schedule or due to psychological causes. Alcohol and other drugs have quite the impact (especially in sleep quality). Or a combination or something completely different; it's like asking "My program is slow, what can I do?" ;-)
As someone with serious sleep issues, I dream of the opposite - take a pill (or shot, or whatever) and fall into 8 hours of blissful REM sleep.