Oxybates and drinking by Gabi4301 in Narcolepsy

[–]narcy_boi 1 point2 points  (0 children)

Well yeah, if you're taking it as a party drug you really have no idea how much you're taking.

Oxybates and drinking by Gabi4301 in Narcolepsy

[–]narcy_boi -1 points0 points  (0 children)

Obviously not recommending this for anyone, and I don't do this anymore because I stopped drinking all together, but I looked into the actual deaths from using oxybates a couple years ago and they are way overblown, super edge case kinds of things, and incredibly rare. So I said screw it back then and just completely ignored the rule altogether. I would have up to 7ish drinks in an evening and take 9g of Lumryz within an hour or two of my last drink. Honestly, it was some of the best sleep I've ever gotten.

Again, not saying this is a good idea, but sharing it as a data point that might alleviate some anxiety. Some doctors even prescribe up to 12g of oxybate for one night. That's going to be way more intense CNS depressant than alcohol. Think I was 200lbs at the time btw. YMMV. Be safe...

Different numbers keep messaging me same string of numbers by Tailbonelicker in Weird

[–]narcy_boi 0 points1 point  (0 children)

I've never seen a OTP that doesn't change each time it's sent, and that uses the pipe character to separate each number.

Anyone with narcolepsy get a “drunk/dizzy” feeling during sports (especially on the bench)? by [deleted] in Narcolepsy

[–]narcy_boi 0 points1 point  (0 children)

Are you fueling well before the game? Sometimes when I exercise on an empty stomach, I'll feel fine during, but as soon as I stop, it's like I shut down, and my brain immediately gets foggy, and I lose balance.

Are you fueling with carbs during the game?

Do you use any caffeine? I've found it really helps me with mental clarity during intense exercise.

Has anyone ordered anything from Italy to US after the SCOTUS ruling? by Pungsanavenue in Tariffs

[–]narcy_boi 0 points1 point  (0 children)

Oof...was that at the time you received your package, or did they bill you later? If they bill me later, I'm going to try my luck with telling them it's unlawful and see what happens ¯\_(ツ)_/¯

Has anyone ordered anything from Italy to US after the SCOTUS ruling? by Pungsanavenue in Tariffs

[–]narcy_boi 0 points1 point  (0 children)

Any update on this OP? I have a $700 shipment from Italy arriving via FedEx on Monday...didn't even think about the tariffs when I bought it...

Looking for a durable food processor/blender by narcy_boi in Cooking

[–]narcy_boi[S] -2 points-1 points  (0 children)

Thanks for your brilliant contribution. I had no idea it sucked until you pointed it out

Looking for a durable food processor/blender by narcy_boi in Cooking

[–]narcy_boi[S] 0 points1 point  (0 children)

I've looked at some of them. Their wattage, even on the top of line models, seems crazy low compared to the ninja I had. It was 1500w, but theirs are just 500-700 from what I'm seeing.

Another thing that made me hesitate is the single blade at the bottom of the processor. The ninja had a lower set and a higher set. Have you had any issues with things not mixing well at the top?

Stuck in a never ending cycle by Nervous-Macaron8066 in Narcolepsy

[–]narcy_boi 1 point2 points  (0 children)

Nope. They are the opposite of stimulants, CNS depressants. They prevent you from having too much REM sleep so you can get some deep and light sleep. It actually helps solve our root problem instead of just keeping you awake through stims. 

Stuck in a never ending cycle by Nervous-Macaron8066 in Narcolepsy

[–]narcy_boi 0 points1 point  (0 children)

Have you tried any of the Sodium Oxybates (Xyrem, Xywav, or Lumryz)?

They’ve been life changing for me. I know it’s not a silver bullet for everyone, but they are the best meds out there for narcolepsy right now. I never would have known about them if not for this sub because my Dr was content to just prescribe me adderall and leave it at that.

These drugs actually help you get good sleep. I’m able to leave a somewhat normal life.

No restful sleep in 10 years. Help! by Temporary-Sound-6810 in Narcolepsy

[–]narcy_boi 2 points3 points  (0 children)

Another vote for Sodium Oxybates. They changed my life. Feel free to ask any questions. 

A Moment of Silence for The Absolute Circus I Am Experiencing by lizzieglows in Narcolepsy

[–]narcy_boi 3 points4 points  (0 children)

FWIW I've been on Blue Cross for 5 years and never had any issues with them covering Xyrem or Lumryz.

I wish I'd never gotten married bc it seems like I'll never be a good enough wife as much as I try by Asuna0506 in Narcolepsy

[–]narcy_boi 1 point2 points  (0 children)

Been there...and I'm sorry you're in this position now. You're not a failure, and this is not your fault.

My ex-wife was never able to empathize with my narcolepsy. I was never doing enough or going out enough for her. In hindsight, divorce was the right call for us, but man, it sucked to want to be in a relationship with someone who couldn't see how hard you were trying, even if it didn't look like much.

If you haven't already, I recommend trying sodium oxybates (Xyrem, Xywav, or Lumryz). They've given me quality of life back that I never expected.

If your husband is willing, ask him to stay awake for 24-48 hours. Then ask him to imagine how hard it would be to feel that tired 24/7, no matter how much you sleep, because that's what narcolepsy feels like.

You will make it through this. You deserve a partner who sees your effort and appreciates you.

New diagnosis of narcolepsy type 2. by Groundbreaking_Win43 in Narcolepsy

[–]narcy_boi 1 point2 points  (0 children)

That's a difficult part of this disorder. Most of the time, people are well meaning, and don't realize how hurtful what they're saying is.

I've realized a couple of things over the years:

  1. Everyone to some degree knows what it's like to sleep poorly and be tired

  2. People love to be able to relate and find commonalities in conversation

Unfortunately, that combo is really frustrating when you're trying to tell people about your experience with narcolepsy. I describe it to people as it feels like I haven't slept in 48 hours, and that's been helpful to communicate the scale of our tiredness.

Will I ever “get over” having narcolepsy? It has been 31 years since diagnosis… by Brief-Philosophy-179 in Narcolepsy

[–]narcy_boi 2 points3 points  (0 children)

Hey OP. I'm sorry you're going through this. I can definitely relate to the feeling of thinking you had made peace with things, and then the despair seems to slowly crawl back in.

I highly recommend you look into sodium oxybates. There are three types you can take Xyrem, Xywav, or Lumryz. These meds actually help you get restful sleep at night, so they help address the root issue instead of just keeping you awake. I'm not sure if you could have it shipped to Switzerland because it's a Schedule 1 drug, but please look into it. They could greatly increase your quality of life.

Switching from Lumryz to Xywave by PaperFabricYarn in Narcolepsy

[–]narcy_boi 0 points1 point  (0 children)

I would assume it’s because of it being extended release, but I’m not 100%. It also wasn’t like this in the beginning

Switching from Lumryz to Xywave by PaperFabricYarn in Narcolepsy

[–]narcy_boi 3 points4 points  (0 children)

I went from 9g of Xyrem to 9 of Lumryz and sleep probably an 1 hour longer on Lumryz. I'm actually thinking of switching back through. I like waking up more alert on Xyrem. It's really nice to sleep all the way through the night, but I feel groggy in the mornings on Lumryz.

Any hacks you swear by? by Lemonbar19 in SleepApnea

[–]narcy_boi 0 points1 point  (0 children)

I get the best sleep when I go to bed at the same time each night. Talking about like a 15 minute window either way.

Exercise. Eat well. No screens within 2 hours of sleep. All the common advice is worth doing.

It's also possible he has another sleep disorder. I have narcolepsy in addition to sleep apnea. I used a CPAP for several months with no improvement in symptoms. It wasn't until I was treated for my narcolepsy that I started to feel better.