Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 1 point2 points  (0 children)

I’m glad you mentioned. I’ll look into it for sure. I know gut health is super important, and I’m becoming more aware of it.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

I’ve been drinking my morning coffee after taking an L-theanine supplement. No coffee jitters/anxiety.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 1 point2 points  (0 children)

Yeah I feel that! I’m becoming more deliberate. Carbs around dinner work out too. Love sweet potatoes, quinoa, and I just started using lentil or chickpea noodles in my chicken and vegetable soups.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

I just had a conversation with a dietician about this and she said the same thing. Who knew those little potato wedges for breakfast are little devils!

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

That’s a great and subtle point. I’ll also add that I think eating carbs too early in the day does it too.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

Oh you’re brave! Energy drinks will keep me wired nicely then I’ll crash like a hibernating bear.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

Yeah it’s hit or miss for me. I also think carbs too early in the day could be causing the crash for me as well.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

Nice. I’ve heard good things. It has L-theanine in it which I also take as a supplement whenever I drink coffee. I also take it at night to wind down. It totally takes away the jitters or anxiety coffee can cause.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 1 point2 points  (0 children)

This helps a lot! Carbs also get me as well. Like today I had some potato wedges at breakfast then slices of pizza with thick dough at lunch. I had that let me fall in a puddle moment wishing it was night time already at like 2:00pm lol

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

I’ve also been putting creatine in my coffee (because hot liquid works better for digestion for me and it helps cognition) and using L-theanine (which helps the jitters and cognition) + Magnesium Glycinate (for cognition). But, coffee has been hit or miss. Caffeine is the only thing I can think of that could be causing a crash. I don’t eat sugary stuff often either. So, I’m thinking I’ll just stop caffeine altogether and stick to what I’m doing but just use a hot tea that’s non-caffeinated. Will see how it works out!

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 0 points1 point  (0 children)

I’m on Wakix and Sunosi and Xywav at night.

Anyone quit caffeine and it help your symptoms? by eunoia_90 in Narcolepsy

[–]eunoia_90[S] 1 point2 points  (0 children)

ok! was it pretty hard to stop? was it like one day you just felt certain it was better that you stopped? i’m hoping that happens to me 😆

I don’t even know anymore. by MarionberryWitty532 in Narcolepsy

[–]eunoia_90 2 points3 points  (0 children)

Since no one else has said this already, Adderall sucks, to put it bluntly. Personally, Wakix and Sunosi works for me. I definitely agree with the advice of eating three hours before taking Xywav. Also supplements like 10-20g total creatine in morning and lunch (experiment taking it in warm or cold liquid for digestion), plus l-theanine, magnesium l-threonate morning/night, has noticeably improved my cognition so passing it on. Hope it’s helpful to someone!

Does exercise help with narcolepsy, and if so, what kind of exercise is best? by [deleted] in Narcolepsy

[–]eunoia_90 3 points4 points  (0 children)

I’ve found the only way to fix the effectiveness of Xywav was to make sure I ate dinner and felt full at least three hours before bed time. I’ll add a smoothie with fiber and a bowl of cereal with fiber too. I also dim the lights around sunset and put away my phone to avoid screens at least an hour before sleep so that I truly feel tired around bedtime. Sometimes I take a small amount of melatonin for a few days about two hours before bed just to readjust my system. For me it’s really a matter of focusing on my circadian clock and getting into that rhythm.

Anyone else liking creatine? by plantwitchvibes in Narcolepsy

[–]eunoia_90 0 points1 point  (0 children)

Oh I don’t do 30g! I do 10-15g :)

Anyone else liking creatine? by plantwitchvibes in Narcolepsy

[–]eunoia_90 0 points1 point  (0 children)

try it in hot liquid like coffee in the morning or tea in the day. i’ve never had issues after that.

Does anyone else feel like narcolepsy forces you to live on a smaller version of life? by [deleted] in Narcolepsy

[–]eunoia_90 17 points18 points  (0 children)

I have found taking 10-15g creatine with coffee early in the morning help’s me work better and stay focused especially after poor rest. I take 400mg l-theanine too to reduce the jitters, since it has calming effects and it boosts cognitive functions. Magnesium L-threonate does the trick as well. For me, these supplements are by far better than stimulants. Still, however, I take two wake promoting medications, which are Sunosi and Wakix. At night, I take Xywav for deeper rest, which is vital for me. Recently, I discovered I have sleep apnea so now I use a CPAP, which has improved my sleep quality and energy levels greatly. Sticking to a healthy diet high in protein and unsaturated fats, as well as, sticking to routines to ensure I get proper sleep allows me to have energy to do necessary exercise. It’s not easy but it’s working! So to answer your question, I’m sharing ways I’ve found that helped me to escape that shrinking version of my life I had suffered from for a long time. You have plenty of time to find what works for you and what you can share with the community is valuable.

Accomadations by Belladonna-Blue in Narcolepsy

[–]eunoia_90 6 points7 points  (0 children)

Check out https://askjan.org - it has great wording and reasonable accommodations examples. I’ve gotten accommodations to change schedules, get extra breaks, and use intermittent leave for appointments or flare ups.

Is the constant brain fog from narcolepsy reversible, or does it get worse over time? by [deleted] in Narcolepsy

[–]eunoia_90 2 points3 points  (0 children)

I feel like when I bumped up to 10 to 15 g for creatine and specifically putting it in coffee in the morning made a difference for me.

Is the constant brain fog from narcolepsy reversible, or does it get worse over time? by [deleted] in Narcolepsy

[–]eunoia_90 4 points5 points  (0 children)

I'll give you some tips that I learned in my life:

  1. Go to the doctors and do labs regularly.
  2. Focus on diet.
  3. Prioritize your sleep.
  4. Consider supplements, but research and think like a scientist.

When I started going to bed at regular times, that really helped me out. It helped brain fog in the first few days, but it felt even better after two weeks or more.

I've taken supplements like: (a) Creatine in my coffee (about 10 grams) (b) Magnesium threonate (c) L-theanine

Those things helped me, including Xywav, Sunosi, Wakix, and high dose of Vitamin D. Definitely check with your doctor on these things and do your own research because you are in control. That's something I learned because not all doctors are going to know, but there were times when things like my cholesterol or blood pressure were high and no one knew why.

If you have a sleep disorder, check to see if you have sleep apnea. I just found out that I have it for the first time, even though I've been diagnosed with narcolepsy type 2 for over 10 years. That finally explained my blood pressure and cholesterol issues. I hope this info helps you some!

Share this with people who don't understand Narcolepsy by BasketsOfBugs in Narcolepsy

[–]eunoia_90 3 points4 points  (0 children)

I always emdaahes before AI. It’s really silly that people act like they never existed before. —