5 ms·

I am diagnosed with Narcolepsy, N1. It's a complete nightmare honestly. The main issue is I get TOO much REM sleep and basically almost zero NREM 3 sleep. I en

I am diagnosed with Narcolepsy, N1. It's a complete nightmare honestly. The main issue is I get TOO much REM sleep and basically almost zero NREM 3 sleep. 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.

noneeeed 4y ago
Thanks for sharing that. It’s one of those conditions, like Tourette’s or OCD that has an almost comic reputation in popular portrayals. More people need to understand what it really is. I hope you manage to get better treatment in the future.
simonebrunozzi 4y ago
Thanks for sharing this with us. Honestly, I had no idea that your condition could be so debilitating and present so many issues with living a normal life. Eye opening, to me at least. I hope that this discovery will help eventually find ways to mitigate your symptoms.
hi_herbert 4y ago
Xyrem is not the only treatment. If I were you I would look into the following peptides: https://en.m.wikipedia.org/wiki/Delta-sleep-inducing_peptide https://en.m.wikipedia.org/wiki/Delta-sleep-inducing_peptide And most importantly https://en.m.wikipedia.org/wiki/Epitalon https://en.m.wikipedia.org/wiki/Epitalon 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/ 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.
- gboone 4y ago
  It is my understanding that narcolepsy is a diagnosis of a sleep disorder, and not as a result of symptoms. Sleep studies are required and they rule out things like 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.
mongol 4y ago
What does it mean for your life in terms of doing things that require durable concentration? For example, driving a car? Can you do that without risking falling asleep? It seems like such a cruel disease. I hope there will be better remedies ahead.
- bulkprotocol 4y ago
  It really makes everything 100x more difficult. Especially in a cognitively intensive field. Completely killed my aspirations of being a Lawyer. I simply just could not keep up. Graduated with a terrible undergrad GPA. I was just so tired I couldn't really use my brain. Then basically limped over the finish line even though before my symptoms started I could crush reading materials. 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.
  - M5x7wI3CmbEem10 4y ago
    what kinds of accommodations? I’m surprised SWE was more flexible considering the cognitive demands
    - gboone 4y ago
      Like naps when you need them. Remote jobs are maybe more likely with SWE.
    - bulkprotocol 4y ago
      Generally I have to split up my work hours. Very hard for me to wake up in the morning and be productive by a 9 to 10am stand-up. I mostly cant start work until 2 or 3pm most days. Also naps. Scheduled and on my calendar as busy time that I cannot be contacted. When it comes to prod support I make it clear that if there are days Im struggling harder than normal, I may need a backup 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.
kowlo 4y ago
Sleep paralysis multiple times a night too https://news.ycombinator.com/item?id=30435267 https://news.ycombinator.com/item?id=30435267
jokowueu 4y ago
Currently we are looking into group buying Danavorexto on a small server I belong to . Should be great for narcolepsy
Maursault 4y ago
> Pure utter terrifying demonic nightmares and hallucinations to the point where at its worst I was too afraid to even try and sleep. 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_applications https://en.wikipedia.org/wiki/Lucid_dream#Suggested_applicat...
gboone 4y ago
As a top comment I want to throw in additional info to help balance what it is like. I also have narcolepsy. Not everyone who has narcolepsy has cataplexy, which is the sudden paralysis or sleeping in response to emotional stimuli. But, everyone with narcolepsy has a sleep cycle where deep sleep is entirely or mostly missing. 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.

noneeeed 4y ago

Thanks for sharing that. It’s one of those conditions, like Tourette’s or OCD that has an almost comic reputation in popular portrayals. More people need to understand what it really is. I hope you manage to get better treatment in the future.

simonebrunozzi 4y ago

Thanks for sharing this with us. Honestly, I had no idea that your condition could be so debilitating and present so many issues with living a normal life. Eye opening, to me at least. I hope that this discovery will help eventually find ways to mitigate your symptoms.

hi_herbert 4y ago

Xyrem is not the only treatment. If I were you I would look into the following peptides: https://en.m.wikipedia.org/wiki/Delta-sleep-inducing_peptide https://en.m.wikipedia.org/wiki/Delta-sleep-inducing_peptide And most importantly https://en.m.wikipedia.org/wiki/Epitalon https://en.m.wikipedia.org/wiki/Epitalon 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/ 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.

gboone 4y ago
It is my understanding that narcolepsy is a diagnosis of a sleep disorder, and not as a result of symptoms. Sleep studies are required and they rule out things like 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.

mongol 4y ago

What does it mean for your life in terms of doing things that require durable concentration? For example, driving a car? Can you do that without risking falling asleep? It seems like such a cruel disease. I hope there will be better remedies ahead.

bulkprotocol 4y ago
It really makes everything 100x more difficult. Especially in a cognitively intensive field. Completely killed my aspirations of being a Lawyer. I simply just could not keep up. Graduated with a terrible undergrad GPA. I was just so tired I couldn't really use my brain. Then basically limped over the finish line even though before my symptoms started I could crush reading materials. 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.
- M5x7wI3CmbEem10 4y ago
  what kinds of accommodations? I’m surprised SWE was more flexible considering the cognitive demands
  - gboone 4y ago
    Like naps when you need them. Remote jobs are maybe more likely with SWE.
  - bulkprotocol 4y ago
    Generally I have to split up my work hours. Very hard for me to wake up in the morning and be productive by a 9 to 10am stand-up. I mostly cant start work until 2 or 3pm most days. Also naps. Scheduled and on my calendar as busy time that I cannot be contacted. When it comes to prod support I make it clear that if there are days Im struggling harder than normal, I may need a backup 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.

kowlo 4y ago

Sleep paralysis multiple times a night too https://news.ycombinator.com/item?id=30435267 https://news.ycombinator.com/item?id=30435267

jokowueu 4y ago

Currently we are looking into group buying Danavorexto on a small server I belong to . Should be great for narcolepsy

Maursault 4y ago

> Pure utter terrifying demonic nightmares and hallucinations to the point where at its worst I was too afraid to even try and sleep. 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_applications https://en.wikipedia.org/wiki/Lucid_dream#Suggested_applicat...

gboone 4y ago

As a top comment I want to throw in additional info to help balance what it is like. I also have narcolepsy. Not everyone who has narcolepsy has cataplexy, which is the sudden paralysis or sleeping in response to emotional stimuli. But, everyone with narcolepsy has a sleep cycle where deep sleep is entirely or mostly missing. 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.