What are /r/Narcolepsy's favorite Products & Services?

From 3.5 billion Reddit comments

This will probably be really annoying, but this app makes you solve a short easy puzzle before you can turn it off. I used to use it before i moved my alarm. (Im sure there is an iphone equivalent) https://play.google.com/store/apps/details?id=com.wroclawstudio.puzzlealarmclock

Oops sorry for the late reply. I went in on it and bought the more expensive, but not the most expensive model. https://www.amazon.com/dp/B0093162RM/ref=cm_sw_r_cp_apa_7QvOBbZDSNWFZ)]

It was about $100 when I bought it, seems to be so now as well. I think the main difference in the prices is how bright they get

Back when I was still working I was able to nap twice a day for 15 min. I had my own office, which helped with this significantly. My desk chair just happened to be one that was able to recline deeply.

I'd close the blinds on my window turn all my lights out and pull up my second chair to put my legs on. I'd recline as far as I could with my feet up and I had a little blanket I kept on the back of that chair. I'd throw on a nice eye mask and I was out cold.

I always set my 15 minute alarm. I'd write on the white board outside by office "15 minute break, please do not disturb. Be back at: _____" and fill in the time that it would be over.

Thankfully my office door locked too. I mean, everyone had a key but it just made me feel better. That was my routine - 10am and 2pm.

If you find a place where you're able to sleep on your own you might want to invest in a folding antigravity chair. They fold up compactly and when you sit in it it's extremely comfortable. It makes it so you're able to lay down fully.
Best of luck.

https://www.amazon.com/AmazonBasics-Zero-Gravity-Chair-Black/dp/B071173FS8/ref=mp_s_a_1_1_sspa?dchild=1&keywords=anti+gravity+chair&qid=1622155060&sprefix=anti+&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExU0wzOUlSTD...

Tryptophan is probably more nuanced than you think. Not a myth, and there's a definite metabolic pathway leadkng to serotonin (and melatonin) which is why they warn for serotonin syndrome with medication interactions.

https://www.webmd.com/food-recipes/features/the-truth-about-tryptophan

About halfway, they discuss the food combos vs the total amount of tryptophan.

So as others have said it's not fully known what causes narcolepsy. Most scientists agree that it's probably caused by an autoimmune disease attacking the neurons that produce hypocretin/orexin in the brain. So it's not that the immune system attacks the hypocretin, it's that we produce less.

The problem with a nasal spray is like Mofupi said, crossing the blood brain barrier is a big problem medicine has yet to overcome. There has been some recent research that indicates that it may be possible to make the blood brain barrier reversibly permeable using ultrasound but don't expect that to become available for a while yet.

Narcolepsy is rare, non-life threatening and not particularly sexy. There's not much money going towards research and not many researchers are particularly interested. Hell I'm studying neuroscience and I don't think I want to research narcolepsy even though I have it.

I've found rhodiola rosea to help a lot with brain fog if you suffer with that. It doesn't do much for my fatigue but it's nice for days when I'm having a lot of cognitive problems from being tired and am feeling dissociative from the brain fog. This is the only medication I've had much success with thus far. If you live in the US this is the one that I've been using. I've found that I usually need 2 doses about 6 hours apart to make it through the day.

Otherwise, you can check out r/Nootropics for people discussing medications to help with cognition and wakefulness. You can also check out the phoenix rising forums for people discussing ways to cope with cfs. While it's not the same as narcolepsy, I've found it to be a useful place to find people experimenting with different options to help combat chronic fatigue.

Obviously you should take everything you read online with a grain of salt. the placebo effects is a very real thing so some people may claim benefits from some things that you may not experience. Everyone metabolizes substances differently too so just because you see a lot of people talking about success with one substance doesn't mean you will as well. Messing with this sort of stuff is sadly very hit or miss and you kinda have to be your own guinea pig since there's not a whole lot of research on most of these things and what is there isn't conclusive.

I hope some of these resources help!

This is something Jazz never really brings up, but if you read through r/narcolepsy or the Facebook support groups you'll see a TON of people with this problem.

> Like they're literally preventing me from giving into the Xywav drowsiness sometimes

It sounds like you might be waiting for Xywav to kick in before you go to sleep? I've found it really, really important to only take Xywav once I'm already in bed AND almost asleep. (I set an alarm for 30 minutes into the future in case I actually fall asleep before I can take it.)

If that doesn't help, try eating a small, fat-free snack before taking the Xywav. Yes, that might make the Xywav somewhat less effective, but that's a lot better than staying awake to eat afterwards and negating the whole dose. If this works for you, then gradually make the snack smaller and/or have it earlier in the evening until you find the right balance.

Also, if your living situation allows for it, look into refrigerator and pantry locks. If you live alone, consider locking up all of your food 2 hours before you take Xywav, and put the keys in a time delay safe that you can only open the next morning.

TL;DR:

• It's better to miss a dose of Xywav because you fell asleep than to be in the habit of taking it and not falling asleep right away.
• It's better to eat right before Xywav than to go hungry, if going hungry means you'll give into the munchies after taking Xywav.

It took me a while to figure all of this out, but I've come to realize that my routine and choices in the 3-4 hours before taking Xywav are the most critical component of my entire narcolepsy treatment plan.

Yup. I also find that in the evenings the back of my neck is tight and my lymph nodes at the jaw swell up. I have found that NSAID cream (voltaren), lidocaine gel, and this heating pad help

You want one that is very bright, very big, and angles downward. Like this.

Most of the sun lamps/SAD therapy lamps you can find are "conveniently" tiny and, as a result, ineffective.

Yeah, maybe you should get one then! LoL... Ask for it as a Christmas present! 😊 I got mine on Amazon for $39 and it has a USB drive so you can put as much info as you want on it. This specific one has gone up in price, but that might give you an idea of what to look for? :) Waterproof ELITE PLUS USB medical ID bracelet, 2 GB USB, 10 lines engraving - (Black) https://www.amazon.com/dp/B00NE6YEN6/ref=cm_sw_r_cp_api_DwwaCbJ6VWZXS

You have got to be the most considerate neighbor ever.

https://www.amazon.com/Sonic-Alert-SBB500SS-Extra-Loud-Flashing/dp/B000OOWZUK/ref=mp_s_a_1_3?dchild=1&keywords=sonic+bomb+alarm+clock&qid=1600152649&sprefix=sonic+bomb+

That was a pretty good alarm. Wasn't perfect as I'd unplug it in my sleep without remembering it, but that's my fault. When I did remember it, the vibration was extremely strong. Worth a try if you need a silent alarm. It

I have been struggling for over 20 years with my fatigue and used modiodal/modafinil for two years. I have just been using the information from this book https://www.amazon.com/Cu-RE-Your-Fatigue-Root-Cause/dp/1662910282 And it has completely changed my life. I can skip naps during the day and feel much more energetic. Not sure if it helps you but it drastically helped me. Hope this works for you as well.

noise canceling

They weren’t this exact brand but something similar. He uses an app to connect to the Bluetooth that has ambient noises and stuff.

The call a friend (or relative) part is super useful though I have them call me and they also know that I will lie and say I'm up so they keep me on the line and make me do things like describe what's out my front window. The reason I stopped this routine is it's a pain to have to rely on people and also I work from home now so I just let myself sleep basically.

​

I'm going to try the barcode scanner alarm at some time https://lifehacker.com/barcode-alarm-clock-forces-you-to-get-the-day-started-1748009067 also I should make an app that's like scavenger hunt alarm or something haha.

It's amazing and the only thing that works to get me up. bed shaker alarm There's a lot of different kinds, this is probably the cheapest and it works great for me. I don't even have the sound on. I just have the shaker under my pillow that goes off first and I keep my phone across the room that I have a song go off a minute after the shaker alarm and so I have to get out of bed to turn that one off. it's been a game changer.

Online advice won’t really help either of them, as if they are pwn they will need proper treatment. As others have said, seeing a sleep doctor from sleep clinic is the best path if available.

I would also recommend reading the book ‘Waking Mathilda’ to see how other parents of pwn dealt with their child’s sleeping disorder.(https://www.amazon.ca/Waking-Mathilda-Memoir-Childhood-Narcolepsy/dp/0998694029/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1662126595&sr=8-1)

Good call--I've included that edit in my revision.

Thank you. That paragraph was the first thing I wrote, almost word for word, one morning after I had dreamed my sister died.

The one is use is this. It Does have lions mane in it and a few more that helps with mental function and mood, there are capsules if you prefer those, I just take enough pills so I get gummy whenever I can.

I've had a sun lamp as part of my routine for a while. I think it helps a bit? It's hard to say for sure, but it's a relatively small inconvenience so I keep using it. It might improve my wakefulness a bit, but it's probably also helping to regulate my circadian rhythm which is harder to judge since the effects are delayed and cumulative.

The key is to get a LARGE, adjustable sun lamp -- not one of the cheap, small, LED ones. Angle it downward toward your face, and keep it within 1-2 feet of your head, to get that 10,000 lux that's recommended. Use it for 15-30 minutes in the morning, and maybe again in the early afternoon if you aren't able to spend time in the sun.

Here's a newer model of the version I have. Mine has lasted about a decade so it's well worth the price. (Just make sure to read the directions -- position it closer to your head than what they show in the online photos.)

My cateplexy is always stronger on one side so I got one of these to help me get to a safe spot.

https://www.amazon.com/dp/B00RW3LNWC/ref=cm_sw_r_apan_i_YW0YP776JTG8DV26VPJK?_encoding=UTF8&psc=1

Thank you, I appreciate that!
You might like this book, btw: https://www.amazon.com/Expressions-own-Narcolepsy-Cataplexy-coaster/dp/0989991970/

I also agree that most research papers I have read generally mention an increase in libido, pleasure, and general euphoria ('recreation' and medical use doses can be the same, as I have read); but I feel none of that. My overall libido was higher than my SO, but lower while on xywav, so it isn't solid experience for all patients.

I agree there is a lot of interlocking stress and frustration in the subject. Bringing up the topic too often, or mentioning frequency, might lead to a 'pressure' on the other person which decreases the spark to try. 'we did Y already Y times, what is enough?'

Sometimes, there can be some negotiation, 'If you are not up to full sex, can you do these alternatives? Can I touch or look at you while I do things, myself?' Sometimes getting to bed earlier can give a little extra time for one partner to feel relaxed enough to be in a better mood.

One book that helped in our relationship was "The two step." (ABE books has used copies, but I've given an Amazon link) The idea being sometimes in a relationship, there are people who 'seek' (want more), and some people are being 'sought' (want, but less often). Sometimes in the run together the catching part is fun for both; but if the 'seeker' gets too enthusiastic, the 'sought' creates distance. If that distance stays for too long, the seeker stops seeking, which isn't good for either side. A good balance is when the seeker knows when to give some space, and when the sought turns around and becomes the seeker for a bit.

https://www.amazon.com/Two-Step-Dance-Towards-Intimacy/dp/0802130321

A couples councilor might be a step in the future as well; but that's a book recommended to us during a session. I wish you both the best of health in body and mind. I've struggled with a similar situation.

I learned through this sub that temperature regulation issues are common in people with N, which made sense to me. Ways I have managed my temp at night include a TempurPedic mattress and a cooling gel mat in the summer. (This is the one I got: https://www.amazon.ca/dp/B071SH9MHF?ref=ppx_pop_mob_ap_share it doesn’t leak or make the bed wet and it lasts all night if I put it under the pillow.

When I was on xyrem I had a terrible problem with feeling hot and sweating after the second dose. My doc prescribed tryptophan pills really helped with those issues! He said he knew it was sometimes used to help ease menopause symptoms, too.

I hope you find some helpful ideas!

A resting 100 beats/min isn't normal or healthy. Its called tachycardia or 'fast heart'. There is an association with higher morbidity/mortality rates associated with it.

https://www.webmd.com/heart/news/20151123/high-resting-heart-rate-tied-to-higher-odds-of-early-death

There are other studies that are easily googleable.

I personally work out before taking my am stim or late afternoon/evening when I know it's wearing off. I also take a beta blocker to keep my heart rate down. I use the heart rate sensor on my Samsung phone. I compared it to the heart rate sensor and pulse oximeter at the hospital, and they were both spot on. I was pleasantly surprised, it wasn't useless after all :)

I also have IH and florid vivid dreams even in short naps. I hallucinated and dreamed during my MSLT but did not reach REM, which I find fascinating and which nobody has been able to explain to me beyond 'sometimes people dream outside REM' (yeah, but every single time they fall asleep?). The techs told me I was imagining it. Which from an epistemological perspective is a pretty interesting statement because what are dreams if we're not imagining them?!

I'm a member of an IH group on Facebook and dozens of other people there report exactly the same thing - there's also a 1996 study which finds sleep paralysis, hallucinations etc. equally common in people with IH and narcolepsy. It's super, super weird and I'd absolutely love to know what's actually going on to facilitate it.

(For what it's worth my money is on Tore Nielsen's theory of covert REM, which suggests the stages of sleep overlap more than we currently consider them to, and that people dreaming outside of REM may be experiencing intrusions of REMlike sleep into non-REM sleep which aren't measurable by current standards. If he's right I guess it would fuck up the MSLT as a diagnostic tool pretty bad though.)

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

Thank you so much! We would love to show you the current state of the app and get some more feedback from you. If you would be interested, feel free to book a slot with us here: https://calendly.com/narcolepsy-app/testing/

When you took the blood test, did that include a hormone panel, and what was your doctor's standards for "normal"? Because being a woman at 40 pretty much guarantees things are going to slow down and get harder for you. And I find most doctors will hand waive women's issues when it comes to those matters. You should try and sit down with your doctor and have him go through the blood work and explain what each marker means and what changes as you get older. If they are not willing to do that, find one that will.

Honestly your control on your diet and exercise seems extremely reasonable. And while you could continue to double down and go full fitness mom, I don't think that would make you happy long term even if you managed to keep it up long enough to drop the weight.

Personally, I would really suggest looking into some sort of hrt. That will help balance things out so you have the same metabolism and hormones you did in your 20s. But I'm super biased towards that kind of thing and it can definitely be complicated in terms of finding a good clinic that is affordable so I would definitely do plenty of research on your own.

this is a pretty good podcast on the matter. Granted, the first half is about sobriety and it has a lot of preachy type fluff in it so you might need to skip around but the women described very similar to you about how she didn't feel comfortable in her body anymore and how this helped her.

No. Semantics is not a putdown and doesn't mean what you think in this context.

This is a community of people dealing with narcolepsy. You are, whether you realise it or not. Delusions are a real part of narcolepsy so be as accurate as possible.

This, for example, describes how delusions are present in narcolepsy: https://www.semanticscholar.org/paper/Delusional-confusion-of-dreaming-and-reality-in-Wamsley-Donjacour/4dbd99b37c1c891c490b9a88488ce3fe5c797647

> tired would be like you had a long day at work or went for a long hike, yeah your feeling pretty tired BUT thats just cause your at low energy levels, you can still do stuff and function correctly with out brain fog etc. > Sleepy would then be the next step after tired, sleepy is the feeling that you are so tired that your actually beyond tired where now your body is screaming for sleep and so starts shutting down, brain fog, minute sleeps, etc.

I can mostly agree with this assessment of sleepiness and tiredness, but I think there is more to tiredness than physical exhaustion after a long day. Maybe it is just improper word/thought choice, but when I wake up and think "I am still tired," even after a full nights sleep, and that is more than just having low energy levels. I guess it could also be from actually having low energy levels from not getting restorative sleep.

I do disagree with your point that you can "still do stuff and function correctly without brain fog when being tired." Tiredness IMO often comes with significant cognitive effects including difficulty focusing and/or feeling "out of it." Mental exhaustion (tiredness) can occur just as physical exhaustion or tiredness can. Programs like Lumosity or other brain exercises surely can leave you feeling mentally tired upon completion, which makes it very, very difficult to function (temporarily). I think most people get mentally tired from fighting sleepiness as well, so they really do go hand in hand.

Thanks for your reply!

Other stuff that has helped me, no wheat, that stuff knocks me out, maybe try a week without wheat and see if it helps. And monolaurin supplement, it's a kind of fat, but ramp up on it slowly, it changes gut bacteria and gradual is they way to on that. YOu can get it here: https://www.amazon.com/dp/B004I8SMOQ?psc=1&ref=ppx_yo2_dt_b_product_details I feel more energy and clear headedness with that plus less sugar cravings. It kills candida and other infestations that may have taken hold in the gut. I let it run out once and really felt the difference, just go slow starting out until the gut can adapt. Every little bit helps.

Worth it! I put a link for the one I use- which is no longer available…but maybe it’ll help you search. I use blackout curtains so mornings can be extra tough(especially in the winter)- but this helps tremendously. I still use alarms on my phone & watch. The combination of light + the watch vibrations really help me to wake up gently. It starts like 20min before your alarm goes off, so by the time I need to wake up, I feel sorta ready. It’s definitely not a cure-all, but it’s a heck of a lot easier than being ripped awake by a horrible noise in a dark room, falling immediately back to sleep after hitting snooze, then getting ripped awake again repeatedly until I either wake up or accidentally shut it off entirely.

IPEAK Sunrise Alarm Clock, Wake Up Light Radio Alarm Clock, Nature Night Light with 7 Colors, Nature Sounds, FM Radio, Touch Control, Atmosphere Lamp, Bedside Lamp https://smile.amazon.com/dp/B01M02Q38W/ref=cm_sw_r_cp_api_glt_fabc_MQ80Q0ESB91472158255?_encoding=UTF8&psc=1

I have added a vitamin to help

EZ Melts Energy Memory & Mood... https://www.amazon.com/dp/B00VVKVMCI?ref=ppx_pop_mob_ap_share

Its worked well for me so far, I also take prescription medication but I checked my pharmacist and they said it wouldnt negatively impact my current medications. I take ritalin to stay awake and with this I feel like my dosage could be lowered.

Yep. I get migraine headaches from it. It’s the imperceptible flickering and blue light wave output, and, in some cases, the sheer brightness of it. I had my last set of prescription glasses treated with a blue light protective coating, which helped a ton. And also bought clip-on FL-41 and generic tinted lenses for when I need more protection but can’t wear a brimmed head cover indoors and where polarized sunglasses are a hindrance. Haven’t had fluorescent light induced migraines in over two years.

This is what I use and it includes what they call a bed shaker you can put under a pillow. You can also set multiple alarm times. The bed shaker is more than vibration, it practically jumps off the bed.

Sonic Alarm Clock

Only two things I’ve found effective for myself: IV fluids and putting electrolyte tablets into my water (otherwise it goes straight out and none lingers, it seems).

I like these ones; they actually taste good and no funky aftertaste: nuun

Hey, just a thought (since you’re so young and canes aren’t particularly stylish): have you considered using trekking poles (aka hiking poles or hiking sticks) instead?

Also, you could buy a compact camping stool for when you absolutely must sit down and there’s nowhere to do so. They’re small enough and light enough to carry easily, and don’t scream “medical equipment”.

I've not tried it much since my sleep study only recently was conducted but I didn't noticed much from it. I may just need to increase the dose or something but I'm not sure. If you don't have a history of bad allergies it could be something to look into regardless.

The only medication I've taken that I've experienced noticeable positive effects from is rhodiola rosea. It helps me with brain fog sometimes but that's about it. This is the product I use https://smile.amazon.com/dp/B0751HBW2F/ref=cm_sw_r_cp_apa_glt_fabc_AP39WK8FSBM5JCM6KDQV?_encoding=UTF8&psc=1

I am with you there. 5% may not seem.worth it if you are running at 85%

But when you are so depleted scraping up.any jumps can be worth it...

Hence my listening to binaural music at night, and someone posted some interesting stuff about Thiamin and here I am.20+ years into living with this after failing all meds.

If Yak pee had some good legit research behinds it, I'd give ggsf a shot too.

I'm really hopeful.about some orexin replacement med trials...as "tgat* could be a silver bullet.

I recommend this in coffee, cico or chai. https://smile.amazon.com/dp/B01BK871DE/ref=cm_sw_r_cp_apa_glt_fabc_QXHZEHZCSCHFQMF676D0?_encoding=UTF8&psc=1

And KOS does some good blends like their red reishi or mushroom blend pills.

Any of this may help with fig and four body handle the stress of lack of sleep better, but I don't think you will find a alerting effect.

Stress does make symptoms worse, for sure. For me though, I get quickly diminishing returns from trying to reduce stress in my life.

If there are obvious stressors that you can eliminate like toxic relationships or an unhealthy diet, then of course do what you can to eliminate those stressors. But for me, the worst part is the meta-stress. That is, if I judge stress as bad, then the presence of stress itself becomes a source of stress. And if I judge exhaustion as bad, then that too becomes a source of stress, which leads to more exhaustion, which leads to more stress, and so on.

The antidote, I think, is to accept that it's ok to feel stressed and it's ok to feel exhausted. That may be easier said than done, but it is possible. So, yes, I still feel tired most of the time, and some days I feel really tired. But if I can catch myself before I start judging those experiences as bad, then the intensity of those experiences will dissipate relatively quickly. The exhaustion doesn't go away, it just doesn't bother me as much.

I'm not sure if I'm explaining this very well. I learned this idea from a book called The Happiness Trap by Russ Harris, which I strongly recommend. The premise of the book is that the expectation of happiness actually leads to greater misery, and the book provides some useful strategies for noticing when you fall into this trap and for getting yourself out of it.

A similar book that I've also found helpful is The Mindful Self-Compassion Workbook by Kristin Neff and Christopher Germer.

i don't know if you are experiencing sleep paralysis or effects of something else, but here is my advice to fall asleep easier:

i only have sleep paralysis and hard twitching tw:>!(episodes like yours, but it's an incubus assaulting me)!< when i don't use ASMR to fall asleep.

i have a sweet light blocking set of headphones and i listen to one video of ASMR on low low volume with my phone face down (because i dont pay for youtube red so the screen stays on) to fall asleep. i usually sleep through the night and if i wake up i just start the video over again.

i don't take meds or supplements to sleep. i only use modafinil to drive and on days i do use it my sleep is poor but same results if i use asmr.

before ASMR i dreaded going to sleep and i would do yoga and meditate before bed to get myself ready but would still fall asleep too abruptly/without relaxing, which ended up in sleep paralysis.

The Jarrow is a melt/chew (I'm pretty sure). I have methylation issues so I try to get pre methylated with those three.

I just found some tabled that are 50 mg thiamin sublingual melts (the bar &ez melts and liquid were much lower in active vitamins).

I'll give it a shot and see how it works. I can't use any of the normal N stuff, or even caffeine.

Thanks for your very detailed description I f how you use.

Jarrow's https://smile.amazon.com/dp/B01IJR5VM2/ref=cm_sw_r_cp_apa_glt_fabc_5AAFST24NDXAKK6DTVC6?_encoding=UTF8&amp;psc=1

Tell me about it! Stem made me vomit and I have an adrenal issue which can make limiting deadly.

I've tried xyrem a few times but not Xywav (spelling). It is a low sodium version of xyrem and a user suggested that perhaps it was the high sodium causing vomiting.

I'm going to talk with my sleep Dr about it.

I tend to process a lot of meds used in narcolepsy poorly. I had a drug gene test done from Genelex (insurance paid). Stimulants do me very wrong too.

I had to go on disability back in 2002. It's pretty much melatonin and nap therapy for me. I'm not sure melatonin is doing squat, and I am trying

https://www.amazon.com/dp/B08GFBSTB3/ref=cm_sw_r_cp_apa_glt_fabc_VS30RQE2G0KGRFKH273E?_encoding=UTF8&amp;psc=1

After researching the ingredients.

I sleep for 60-120 min at a time, so I basically have no life between n and a bunch of other medical.

I feel ya🌷

OP, you should give this a try. I used to require over a gram of caffeine a day to function and withdrawal was hell on earth. This made quitting caffeine pretty easy.

LINK

Super late but YESS to the 40oz Coleman auto seal!!

I started with the plastic Contigo autoseal because my mom got a bulk pack at Sam’s/Costco for the whole family, and I fell in love with that free flow, chuggable mouthpiece, but hated how much they sweat. My mom then bough specialty coozies for them haha. Then I found that they made metal insulated Contigo versions, and I bought everyone in the fam one for Christmas. They were still like 24 oz though, and I realized it still didn’t hold enough water as I wanted, but I was IN LOVE with that mouth piece. It’s so easy to open up one handed, you can actually chug water instead of sucking at a straw mouthpiece, and it automatically closes for less leaks.

So I looked up the autoseal mouthpiece and saw that AVEX had a 40oz, stainless steel bottle and that’s been my go-to ever since. I even bought a special cup holder to go into my car’s cup holder so I could set it in securely.

I was sad when I learned AVEX went out of business so I couldn’t buy an extra, but AVEX was at least then bought by Coleman! I’ve purchased two additional Coleman 40oz bottles to be able to keep one at work and one at home just in case I leave my AVEX somewhere. They all work the same, really it’s just that wonderful autoseal mouth piece I’m obsessed with (I’m just partial to my stainless steel AVEX because I like the way it looks and because it was my first bb).

And seriously if you don’t have it yet, you should buy the cup holder. I’m not affiliated so there might be cheaper ones out there (someone could prob 3D print it cheap) but it’s so helpful! Before I just had to set it on my passenger seat because it didn’t fit in my cup holder. It became a projectile issue when I braked, and impossible to deal with when having a passenger. Now my bottle is always by my side!

I can't help with the sleep walking, but I just bought some of these for my fridge & pantry:

Refrigerator Door Lock with Padlock

Hoping it works, because when I wake up in the middle of the night on Xyrem I cant help myself from binging.

These behind the ear holders, helps them stay on my face.
My face resting on the ground with glasses between is another matter.

https://www.amazon.com/gp/product/B07VMLYPZC/

I wasn’t sure if this would work for me so I bought a cheaper one first off of Amazon

Philips Wake-Up Light Alarm Clock with Sunrise Simulation, White (HF3500/60) https://www.amazon.com.au/dp/B00F0W1RIW/ref=cm_sw_r_cp_api_i_8F7PDbP3DEY00

I got it when it was about Au$65 and yes it definitively helps but isn’t perfect. I am planning on upgrading to a more expensive one but am glad I got a cheaper one first so that I don’t feel guilty dropping a couple hundred on a better one, my husband is planning on putting the cheaper one on his side of the bed when we get a better/brighter one.

SAME! I wish my doctor warned me how dry mouth would lead to cavities. I drink a lot of water so didn’t realize the dry mouth until I went from zero to seven cavities in less than a year. My dentist told me to chew ACT gum or buy the lozenges, but I also sleep with two OraCoat XyliMOraCoat XyliMelts every night.

Congratulations! With a diagnosis you can move on to treatment options. There's a lot of things to try and it may take a while, but be patient and things can improve so much.

I take Xyrem which is a life-changing drug. If it works, it gives you back the sleep that Narcolepsy fucks with so much. Sleeping more like a normal human being has SUCH a huge improvement on my wakefulness and fatigue. People with narcolepsy have so much built-up sleep deprivation that it can take weeks of Xyrem before that real sleep starts to offset the years of pool sleep.

There are some newer drugs out there, namely Wakix and Sunosi, intended for daytime use that aren't "stimulants" so they can be a lot less harsh than drugs like Ritalin. Your doctor might not have much experience prescribing them since they're so new, but I'd highly recommend giving one or both a try before going all-in on a methamphetamine-based stimulant.

Finally, check out Julie Flygare's memoir of narcolepsy, Wide Awake and Dreaming. She communicates her experiences so well, I've given it to all my family members. It's free on Kindle Unlimited if you have that.

I get them on Amazon or at Walmart.

I haven’t tried other brands, but I went with the first one I could buy in person that has goBHB in it. Takes the guesswork out of how much ketones are in it, and most of the companies that use goBHB actually cost the same per gram of ketones once you factor out the fillers and flavors.

This is the light box I use. The legs are annoying but it's so cheap so I bought 4. If you buy a light therapy box, definitely go with a trusted brand like the ones you find at your sleep center. I'm very happy with carex as a company. I had an issue with one of the lamps and they promptly sent me a replacement, despite it being past the warranty. They even followed up with me to make sure I got it.

I have it set up on a Wemo plug, but any smart plug will do. I would wait until black friday, all of my smart plugs were free-$5 on Amazon during a promotion, and I bet Amazon will have something for black friday.

This is one of the bulbs that is tunable. I have a few around the house now, I can't remember which is which, and I'm currently out of town. Bulbs also go on sale during black friday and prime day and all that jazz.

Good luck and happy sleeping!

You're very welcome! So something that has helped me a lot throughout the day is a new watch. Unfortunately, it's not a smart watch, but Casio makes a series of watches (g-force for men, baby-g for women) that has an hourly chime. All it does is every hour, on the hour, it gives a quick double beep. They're loud enough for me to hear, but not loud, so it doesn't draw anyone elses attention. It's just enough to draw my attention to the time. Works WONDERS!

Here's an Amazon link to one of them. They're a bit pricy as far as non-smart watches go (at least for what I was used to), but very much worth it.

-I use skincare from Drunk Elephant. They sell a good sampler kit and with purchase it comes with a sample of their new retinol treatment which is ammmazing), its seriously like magic. If you use all of the things in the kit as instructed, you'll see such a fabulous improvement in the look/feel of your skin.

-Drink a lot of water, take a high quality multi-vitamin (i use Bluebonnet brand), take a good amount of omega-3s every day.

-I use pillows to elevate my head/neck/shoulders to prevent blood/fluid from pooling around the eyes making them look puffy ("The horizontal sleep position, both prone and supine, allows for fluid drainage into the lower eyelid. This interstitial fluid then pools and presents as swelling"). I just use a few soft pillows to achieve this but there are also pillows designed specifically for this purpose

Well, TBH, it was my friend who told me how he had read up on lucid dreaming online and was able to control some of his dreams. And I really wanted to have a sex dream with Channing Tatum! LoL �� So I was willing to spend $30 for a sleep mask that helps induce "lucid dreaming", although my friend said that you can train your brain to do it by itself without the mask... So the sleep mask dimly flashes every 20 minutes while you sleep so you can see the flashes (with your eyes closed) and realize that you're in that middle state where you're not awake and not asleep, and continue to be cognizant while your brain begins to dream. Here is the sleep mask that I bought:

Remee Lucid Dream Mask https://www.amazon.com/dp/B077XSDZL6/ref=cm_sw_r_cp_api_i_qlhDCbT85RZ75

So I generally think self-help books are nonsense, but this book changed my life and views towards my illnesses (N w/ C and Ehlers-Danlos Syndrome). It examines the pursuit of happiness in the face of the realities of life and our propensity as humans to rarely be satisfied with our lives. The author used to teach a course (based on the book) at Harvard that was the most popular course at the university.

yes! the clock I have resets to the correct time every time I plug it in, it’s amazing. and then I just set the alarm to whatever time I need. here’s a link: https://www.amazon.com/dp/B074M5BV36/ref=cm_sw_r_cp_awdb_t1_TEqqCb4EC2YQT

I also have narcolepsy and sleep apnea. There are sleep doctors that are either dentists or have a dentist that can fashion a device for you that positions your jaw in such a way that keeps your airway open. Make sure they give you the thing that you bite on after you take it out, though, to prevent jaw problems. A lot of insurance companies will not cover it, but, it is worth it. If this does not sound like a desirable option to you, there are also devices that you can put in your nose that cost about $10 on Amazon. I will put a link below. I have not used this because my nostrils are too small for it, but, my dad also has sleep apnea and refuses to wear the mask, so he uses it and it works wonders.

Edit: $15

https://www.amazon.com/dp/B078T7NRWM/ref=cm_sw_r_cp_apa_IA25Bb9WVQ6G4

I've got an Android alarm app called Sleep, where you can set it up so that you have to scan a QR code before the alarm shuts off. Generate a random code online, print it off, and tape it to your door (I put mine in my apartment bathroom) https://play.google.com/store/apps/details?id=com.urbandroid.sleep

There's an amazing app I've been using for a couple years called Alarmy (https://play.google.com/store/apps/details?id=droom.sleepIfUCan).

You can ask it to make you solve some math in order to turn it off, or scanning a code bar (like your toothpaste/shampoo/something that's always in the fridge). The code bar is awesome, you really have to get up to turn it off!

Check out Howard Leigh ear plugs. Super comfortable and squishy, blocks out most sounds (including snoring partners). Couldn’t sleep at home or travel without them. I usually get a week or so out of each pair.

Keto diet. While I’m coming to learn it doesn’t do much (or anything) for cataplexy, it does help astronomically with the daytime sleepiness. You really don’t need to go crazy strict keto and actually produce ketones. I use a more modified approach with more carbs in the evening with as little if none in the first half of the day. I think I saw your bf is vegetarian. You need to be careful with legumes. They’re very high in a type of carb that goes straight to sugar in your system. This diet seriously changed my life. I was diagnosed with Crohns before anything and I could never figure out what my trigger foods where for putting me into what was basically a food coma - it’s carbs. Simple, processed carbs are the worst. There’s an incredible article somewhere with the research behind it. Message me if you want it and I’ll actually look for it. It explains how blood sugar acts on orexin cells in our brain. For those with N, our orexin cells have been severely damaged. It seems like it wouldn’t be too hard of a transition if he already has the discipline to be a vegetarian. This is the best book I’ve found so far: https://www.amazon.com/Keto-Diet-Complete-Delectable-Confidence-ebook/dp/B06XKKPXM4 . It really goes into the details of the different options for those who aren’t looking to the diet to specifically lose weight. And just general amazing information. I don’t actually calculate anything so I wouldn’t say let that intimidate you. No carbs/very little carbs first half of the day and then recipes with some carbs the second half. Stir fry is my best friend. This is also good for a lot of other health issues too. Most people with N have other chronic diseases as well.

Honestly, lifestyle adjustments/changes have been the biggest thing that has benefited me, some of is quite easy and obvious, while some of is very hard and not so obvious.

I'll recommend this book that I self published it (I am only posting the link since you are asking, and it goes deeper than I can begin to go here):

https://www.amazon.com/dp/0989991911

And, if you really want to know what specific medication helps me, I'll tell you there are none* that I can recommend from personal experience, besides eating healthy food which is definitely the best medicine.

*I've had negative side effects that outweigh positive effects, I have a lot of allergies and sensitivities that relate. Many people do find benefits from certain medicines, but know there is a trade off that one has to be willing to make and/or anticipate when going down that route. Each of us are different and there are some similarities but remember we each have to figure out what works for ourselves.

Thanks - I've been thinking of just doing the first dose and not the second as well. I'm starting to think that my sleep isn't as disrupted as others with narcolepsy so maybe the Xyrem load is counteracting to some degree. It's really hard to find any non-biased literature on this stuff other than this book: https://www.amazon.com/GHB-Natural-Enhancer-Ward-Dean/dp/0962741868/

Up until earlier this year, I had been taking 3mg of meletonin for about 6months and it didn't really seem to be doing much. My sleep specialist then told me to drop down to 300mcg (0.3mg) as new research has shown that less can be more. I did a bit more research and it seemed to back her up, though I didn't look into it too much.

Supposedly, 0.3mg is the amount that the body naturally produces to signal sleep. That does was restricted to a specific prescription brand due to patenting, and people tend to believe that "more is better" with supplements, thus the really high doses you can get. After switching to the lower dose, my mood improved a bit during the day and it feels as if my sleep is a bit more regulated (I also have non-24, so nothing really helps everything). Doses greater than 1mg are reported to increase daytime drowsiness and depression, though they will often knock some people right out.

Do your research, and it's a supplement so regulation isn't the greatest. I take this

I use this Phillips Wake-Up Light to help me get up and it's been great. The light starts gradually turning on half an hour before the alarm goes off at which point it is on full brightness. It is supposed to simulate waking up with the sun, and I think my mind does register it and begin waking up even if I'm not consciously aware of it. However, I have to remind myself to sleep facing the light for the last few hours before waking up (I'm often partially conscious throughout the night so I am able to remind myself, it's disruptive but helpful in this situation). Here's the link to the one I have, although there are other more sophisticated ones.

Philips HF3500/60 Wake-Up Light https://www.amazon.ca/dp/B00F0W1RIW/ref=cm_sw_r_oth_api_xwiPyb4D4A733

The Philips Wake Up light with dawn simulator alarm clock is nice. The light doesn't really wake me up but my husband loves it. It might work for you.

There's many models but here are some links: https://www.amazon.com/Philips-Wake-Up-Sunrise-Simulation-HF3505/dp/B00E91EGDS

https://www.amazon.com/Philips-Morning-Wake-Up-Simulation-HF3520/dp/B0093162RM

http://www.amazon.com/Control-Disinfectant-Germicide-Cntrl3-Concntr/dp/B007AZ37VC/ref=sr_1_2?ie=UTF8&amp;qid=1455721323&amp;sr=8-2&amp;keywords=Control+germicide

I use that. Only takes a few drops. Dilute the hell out of it.

I wish I could plan on weaning off stimulants, but I gots nasty narcolepsy. They will be forever for me. CPAP sure helps though. I couldn't even get tested for N until the apnea was dealt with.

Orange tinted glasses make a huge difference for me. I put them on around 7 or 8 and go to bed at midnight.

I use these after someone else here linked them: http://www.amazon.com/Uvex-S1933X-Eyewear-SCT-Orange-Anti-Fog/dp/B000USRG90

So you could actually get those happy lights for like $35 and combine it with a Christmas tree light timer and get the same function and save $90

http://www.amazon.com/15076-24-Hour-Plug--Mechanical-Timer/dp/B002HEY300/ref=sr_1_4?ie=UTF8&amp;qid=1440424465&amp;sr=8-4&amp;keywords=christmas+tree+timer

http://www.amazon.com/Verilux-VT15WW1-HappyLight-Liberty-Energy/dp/B00EUF67DU/ref=sr_1_2?rps=1&amp;ie=UTF8&amp;qid=1440424589&amp;sr=8-2&amp;keywords=happy+light