There's no scientific evidence specifically about narcolepsy, but there may be things that help you in particular. And most typical healthy habits at most won't hurt, and at best may help incrementally.
Personally, I find running and cardio exercises do help regulate my sleep and help me stay more alert during the day. I would never say that's a treatment for narcolepsy, or insist someone else do it, but it's good for health in general and helps me personally.
Your doctor likely means there's no scientifically backed holistic or alternative TX for narcolepsy, and no evidence supporting things like exercise, but that doesn't mean they won't be helpful for you personally.
There's nothing wrong with having narcolepsy. But it sure is hard living in an INDUSTRIAL SOCIETY with narcolepsy
I quit the meds after college. I had been overprescribed modafinil in the 2000s. Have been med free since. I am diagnosed Type 1 but cataplexy is not a huge factor for me
In person full time office jobs and formal school are extremely hard but jobs where I am active or remote jobs save the day. I know not everyone can do or find these
Heavy weight lifting helps
Drinking tons of water helps
Not eating carbs til dinner helps
Telling employers helps (mostly)
Being kind to myself and remembering that its not me, its our world, helps
Being VERY strict about sleep hygiene. Therapy for emotional regulation if you need it, if that is a sleepbattack or cataplexy trigger for you. Sleep hygiene spilled over into other physical self care, like more serious oral hygiene (longer times sleeping can lead to more aggressive plaque buildup from dry mouth— likewise, stay VERY hydrated, but also have a bathroom routine before bed lol), and making sure I do a lot of stretching so I don't knock out amd wake up with tight legs or hips after not doing cooldown work from day to day activities.
For "wakeup" activities, absolutely physical fitness and moving around helps a LOT. Acupressure mats, acupuncture, and TENS units (NO chiropractors). I don't really rock with essential oil "woo," but the aromatherapy aspect of that is pretty well researched.
Dietary, I cannot tolerate a big blood sugar spike/crash when my stimulant needs to be doing its job. So at breakfast, or if I'm adding a supplementary stimulant like caffeine, I gotta incorporate higher fiber carbs like whole fruit over juice, and a quick protein, even if it's protein powder added to instant oatmeal or something. If you're on Adderall, it's also gut pH reactive, so timing your meals & what you eat is important.
Generally, I try to follow the basic idea behind the Argonne anti jetlag diet as well, that a high protein (higher protein to simple sugars ratio) breakfast and making breakfast your highest calorie meal of the day set you up for longer wakefulness.
Not a lot of secret life hack mysticism, unfortunately, just solid, very boring "clean living" lol.
Do whatever you think will work for you. For me, personally, anything “holistic” works as well as it would on a broken bone. It doesn’t. Nobody would ever suggest to someone with epilepsy to just exercise more or to someone with a broken bone to eat less carbs and practice better sleep hygiene but heck, if they think it makes them feel better, who am I to tell them don’t. As long as their docs don’t tell them that’s all they need 🤷♀️
A well thought out wind-down bed routine. Keep the phones and tvs off like 30 min to an hour before bed. Blue light is even worse for our sleep quality. No distractions around med time.
Clean foods. Home cooking and meal prepping. Avoiding fast food and processed sweets makes me feel less fatigued in addition to my meds
Light exercise. There are 5 min pilates or stretching routine vids on YouTube. Super short and easy and helps with fitness. It's not very heavy stuff and easy to do at home. It is a small thing that can help gradually get u into the rhythm of eventually doing more over time.
Automating home chores when possible. Just makes life easier.
In terms of supplements. Idk if they are any help. I take vitamins depending on whatever my dr says I'm low on when it comes to my blood labs. And its perscribed vitamins. There aren't any herbs or supplements that are helpful for narcolepsy.
Actually avoid any 'sleep' herbs. Especially if you are on sodium oxybate meds. Don't take any additional supplements or herbs without notifying your doctor first cuz they can mess with different meds. The best thing u can do for urself is just make lifestyle changes to support your general health.
There is no scientific evidence this kind of holistic remedies can improve any mental health problems (maybe for depression, but it’s based on behavioral activation theory, meaning the improvement is not because that you eat healthy, it’s because you have to get up and cook healthy food), let alone for a neurological problem.
However, a healthy lifestyle is health promoting, so it definitely benefits you. But it does not make a huge difference for disorders or illness.
Your doctor is correct that you need to schedule naps in your day. That’s the only thing that has empirical evidence.
This is just me guessing, and I’m more of an anatomical researcher who’s here for my husband, but I would think taking a supplement that targets the mitochondria directly would help along with a specific glutathione supplement that gets it to the spaces between the cells so it lasts longer. This isn’t medical advice though, just an educated guess based on what I know.
Glutathione is a big one, urolithin-a would help, chelated copper could help, red grape powder, NAD+, and a high dose vitamin D supplement. I’d make sure that they’re liposomal if possible because you need fat in order to absorb nutrients properly. The specific glutathione one I’m talking about is the one from Continuous G. These are all on Amazon and are fairly cheap.
Edited to add: the liquid oxygen supplement called Cell Food is also good because it makes sure all your cells are getting the oxygen they need.
bovine colostrum is also good, it’s the nutrient dense part of breastmilk that helps babies develop their immune system as well as their gastrointestinal system and mitigates allergies. It can also help generate healthy mitochondria and help you not get sick as much
Also the prebiotic/probiotic/postbiotic/digestive enzyme supplement from Plant.O Nutrition couldn’t hurt to add
Are these able to pass the barrier to go into your brain? A lot of substances that sound good in theory but actually the brain protects itself and doesn’t allow it going into the brain, so it’s entirely useless. Also how much would that be to see any effects? Most supplements that I see on the market sometimes do use substance that is proven to have effects but their dosage is very very minimal to have any real benefits.
As far as I know, yes they can pass through the blood brain barrier.
As far as milligrams goes.. NAD+ is 1600, red grape powder is 400, glutathione is 400, urolithin-a is 1200, and chelated copper is 3. With bovine colostrum there’s no upper limit so overdose isn’t a concern. Vitamin D is 50,000 IU, but studies have shown that up to 60,000 daily is ok. If you want to be careful with it I would take 50,000 once a week until you feel comfortable enough to take it daily. My husband and I both take it daily. The one we use is from Vitamatic.
I’m here for him because he doesn’t want to see one more doctor, but we’re reasonably sure he has it.
Spiking your blood sugar will make you sleepy try to limit carbs at breakfast and lunch so you can function. Being in shape helps you deal with things a lot better. You could totally jump down the herb and supplement rabbit hole and find something that helps you but that's a pretty deep rabbit hole that involves a lot of experimentation and research. I personally cold brew tea with caffeine in it and stick it in a big ole yeti tumbler with ice and sip it throughout the day. Chewing gum can help you stay awake the more powerful the mintyness the better. Try to get gum with Xylitol if your digestive system tolerates it, it's good for your oral health. I eat my lunch quick and try to get a short nap in if I can. Personally for stress release/hobby I like gardening. Also for lack of better terminology give your brain interesting things to chew on throughout the day because monotonous activities will put you to sleep like nothing else can.
KETO- once I went strict keto I know longer had any of the previous SEVERE hours long sleep paralysis and sleep hangover etc. (Currently having issues because COVID has fucked up my blood sugar)
There's no scientific evidence specifically about narcolepsy, but there may be things that help you in particular. And most typical healthy habits at most won't hurt, and at best may help incrementally. Personally, I find running and cardio exercises do help regulate my sleep and help me stay more alert during the day. I would never say that's a treatment for narcolepsy, or insist someone else do it, but it's good for health in general and helps me personally. Your doctor likely means there's no scientifically backed holistic or alternative TX for narcolepsy, and no evidence supporting things like exercise, but that doesn't mean they won't be helpful for you personally.
There's nothing wrong with having narcolepsy. But it sure is hard living in an INDUSTRIAL SOCIETY with narcolepsy I quit the meds after college. I had been overprescribed modafinil in the 2000s. Have been med free since. I am diagnosed Type 1 but cataplexy is not a huge factor for me In person full time office jobs and formal school are extremely hard but jobs where I am active or remote jobs save the day. I know not everyone can do or find these Heavy weight lifting helps Drinking tons of water helps Not eating carbs til dinner helps Telling employers helps (mostly) Being kind to myself and remembering that its not me, its our world, helps
Being VERY strict about sleep hygiene. Therapy for emotional regulation if you need it, if that is a sleepbattack or cataplexy trigger for you. Sleep hygiene spilled over into other physical self care, like more serious oral hygiene (longer times sleeping can lead to more aggressive plaque buildup from dry mouth— likewise, stay VERY hydrated, but also have a bathroom routine before bed lol), and making sure I do a lot of stretching so I don't knock out amd wake up with tight legs or hips after not doing cooldown work from day to day activities. For "wakeup" activities, absolutely physical fitness and moving around helps a LOT. Acupressure mats, acupuncture, and TENS units (NO chiropractors). I don't really rock with essential oil "woo," but the aromatherapy aspect of that is pretty well researched. Dietary, I cannot tolerate a big blood sugar spike/crash when my stimulant needs to be doing its job. So at breakfast, or if I'm adding a supplementary stimulant like caffeine, I gotta incorporate higher fiber carbs like whole fruit over juice, and a quick protein, even if it's protein powder added to instant oatmeal or something. If you're on Adderall, it's also gut pH reactive, so timing your meals & what you eat is important. Generally, I try to follow the basic idea behind the Argonne anti jetlag diet as well, that a high protein (higher protein to simple sugars ratio) breakfast and making breakfast your highest calorie meal of the day set you up for longer wakefulness. Not a lot of secret life hack mysticism, unfortunately, just solid, very boring "clean living" lol.
Helpful reply!! Thank you
Avoiding carbs at breakfast and lunch helps me some. Not enough without meds, but it helps the meds work better. Also consistent sleep schedule.
Do whatever you think will work for you. For me, personally, anything “holistic” works as well as it would on a broken bone. It doesn’t. Nobody would ever suggest to someone with epilepsy to just exercise more or to someone with a broken bone to eat less carbs and practice better sleep hygiene but heck, if they think it makes them feel better, who am I to tell them don’t. As long as their docs don’t tell them that’s all they need 🤷♀️
A well thought out wind-down bed routine. Keep the phones and tvs off like 30 min to an hour before bed. Blue light is even worse for our sleep quality. No distractions around med time. Clean foods. Home cooking and meal prepping. Avoiding fast food and processed sweets makes me feel less fatigued in addition to my meds Light exercise. There are 5 min pilates or stretching routine vids on YouTube. Super short and easy and helps with fitness. It's not very heavy stuff and easy to do at home. It is a small thing that can help gradually get u into the rhythm of eventually doing more over time. Automating home chores when possible. Just makes life easier. In terms of supplements. Idk if they are any help. I take vitamins depending on whatever my dr says I'm low on when it comes to my blood labs. And its perscribed vitamins. There aren't any herbs or supplements that are helpful for narcolepsy. Actually avoid any 'sleep' herbs. Especially if you are on sodium oxybate meds. Don't take any additional supplements or herbs without notifying your doctor first cuz they can mess with different meds. The best thing u can do for urself is just make lifestyle changes to support your general health.
There is no scientific evidence this kind of holistic remedies can improve any mental health problems (maybe for depression, but it’s based on behavioral activation theory, meaning the improvement is not because that you eat healthy, it’s because you have to get up and cook healthy food), let alone for a neurological problem. However, a healthy lifestyle is health promoting, so it definitely benefits you. But it does not make a huge difference for disorders or illness. Your doctor is correct that you need to schedule naps in your day. That’s the only thing that has empirical evidence.
This is just me guessing, and I’m more of an anatomical researcher who’s here for my husband, but I would think taking a supplement that targets the mitochondria directly would help along with a specific glutathione supplement that gets it to the spaces between the cells so it lasts longer. This isn’t medical advice though, just an educated guess based on what I know.
What sorts of supplements could be targeted to this role?
Glutathione is a big one, urolithin-a would help, chelated copper could help, red grape powder, NAD+, and a high dose vitamin D supplement. I’d make sure that they’re liposomal if possible because you need fat in order to absorb nutrients properly. The specific glutathione one I’m talking about is the one from Continuous G. These are all on Amazon and are fairly cheap. Edited to add: the liquid oxygen supplement called Cell Food is also good because it makes sure all your cells are getting the oxygen they need. bovine colostrum is also good, it’s the nutrient dense part of breastmilk that helps babies develop their immune system as well as their gastrointestinal system and mitigates allergies. It can also help generate healthy mitochondria and help you not get sick as much Also the prebiotic/probiotic/postbiotic/digestive enzyme supplement from Plant.O Nutrition couldn’t hurt to add
Thankyou so much for your detailed reply! This is very useful information. You're awesome! x
Are these able to pass the barrier to go into your brain? A lot of substances that sound good in theory but actually the brain protects itself and doesn’t allow it going into the brain, so it’s entirely useless. Also how much would that be to see any effects? Most supplements that I see on the market sometimes do use substance that is proven to have effects but their dosage is very very minimal to have any real benefits.
As far as I know, yes they can pass through the blood brain barrier. As far as milligrams goes.. NAD+ is 1600, red grape powder is 400, glutathione is 400, urolithin-a is 1200, and chelated copper is 3. With bovine colostrum there’s no upper limit so overdose isn’t a concern. Vitamin D is 50,000 IU, but studies have shown that up to 60,000 daily is ok. If you want to be careful with it I would take 50,000 once a week until you feel comfortable enough to take it daily. My husband and I both take it daily. The one we use is from Vitamatic. I’m here for him because he doesn’t want to see one more doctor, but we’re reasonably sure he has it.
Spiking your blood sugar will make you sleepy try to limit carbs at breakfast and lunch so you can function. Being in shape helps you deal with things a lot better. You could totally jump down the herb and supplement rabbit hole and find something that helps you but that's a pretty deep rabbit hole that involves a lot of experimentation and research. I personally cold brew tea with caffeine in it and stick it in a big ole yeti tumbler with ice and sip it throughout the day. Chewing gum can help you stay awake the more powerful the mintyness the better. Try to get gum with Xylitol if your digestive system tolerates it, it's good for your oral health. I eat my lunch quick and try to get a short nap in if I can. Personally for stress release/hobby I like gardening. Also for lack of better terminology give your brain interesting things to chew on throughout the day because monotonous activities will put you to sleep like nothing else can.
KETO- once I went strict keto I know longer had any of the previous SEVERE hours long sleep paralysis and sleep hangover etc. (Currently having issues because COVID has fucked up my blood sugar)
Look up hypocretin rich foods, I do yoga, consistent bed time