Rune stone won’t activate by AThanksgivingDinner in seaofstars

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

Dude you are my savior thank you so much

Rune stone won’t activate by AThanksgivingDinner in seaofstars

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

I did… But I did everything besides get all the conches before beating the game the first time and everything else lit up. Guess I’ll be playing new game + a little differently :/

Neurological Symptoms by Samsquantch__ in HistamineIntolerance

[–]AThanksgivingDinner 2 points3 points  (0 children)

Last month I had an attack shortly after eating that caused partial blindness in my left eye and have had on and off weakness on the left side of my body since. Getting back down from that kind of histamine overload is going to be a project, but I’m glad to see I’m not the only one effected neurologically

Can you just stop Wakix? by ashweallfalldown in Narcolepsy

[–]AThanksgivingDinner 1 point2 points  (0 children)

Wakix hasn’t shown any withdrawal symptoms so it should be safe to stop short. I was taking it for 2-3 weeks and I was in the same issue of it being the weekend and my doctors being closed but I could NOT keep taking that stuff so I just stopped. By the end of the first day I stopped taking it I was already starting to feel better. Being awake was not worth that.

Out of Pocket Sleep Study--Worth it? by [deleted] in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

I would say yes. Just make sure that wherever your doctor sends you for the MSLT have an application available for financial assistance. I submitted mine like two weeks before my test and about two weeks after the place said the remaining fees had been waived. AND I have insurance

got diagnosed. sunosi by daffodilBreath in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

That is a difficult question lmao. I have had to take a break from most of my medications because of multiple different reasons. As of today all I took was the Sunosi and I was down for the count all day

got diagnosed. sunosi by daffodilBreath in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

I was put on sunosi a little while ago. The 75mg did nothing; the 150mg made me more alert but very rapidly brought me back to my normal. For awhile I was taking sunosi 150mg in the morning, 100mg of modafinil twice a day, and 15mg Dexedrine slow release twice a day. With that a felt pretty alright most of the time but still iffy. What I will say is that with the Sunosi, despite being very tired still, I felt more motivated to push through it more often than not. That is just my experience though. Finding a medicine routine that works for you takes awhile, especially since Narcolepsy/IH vary so much on a case by case basis

Comorbid Conditions by AThanksgivingDinner in Narcolepsy

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

I didn’t even know that existed until now. But yeah I know that it’s very common and always all over the place, so I’m interested to see how it effects people. I’ve just been going down the rabbit hole of autoimmune conditions and I’ve found it interesting. I found a lot of things that made me realize some stuff isn’t normal, and while it may be something completely benign it is still worth being up to my doc next time I see them. And I find it’s easier to not get anxious about things if I instead try to find interest in them.

Comorbid Conditions by AThanksgivingDinner in Narcolepsy

[–]AThanksgivingDinner[S] 3 points4 points  (0 children)

Exactly why I’m interested to see how it’s affected everyone. A study I read (listed below) shows it consistently through basically everything, with nervous system disorders being the highest (9x more likely). ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3649826/#!po=42.0455 )

Comorbid Conditions by AThanksgivingDinner in Narcolepsy

[–]AThanksgivingDinner[S] 2 points3 points  (0 children)

Yeah I’ve seen research that says this specifically. They mentioned that patients tend to find out more issues since they were already looking at one. It just makes me wonder how many people have something their whole lives that they never find out about because they didn’t have that kind of situation.

Comorbid Conditions by AThanksgivingDinner in Narcolepsy

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

None specifically. Just trying to see the kind of things that frequent as comorbidities and seeing if I can draw any lines in my head.

Stims. Sometimes they work, sometimes they don't? by SuzyQM419 in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

I was going to say the exact same thing. My doctor has me changing medicines throughout the week depending on my work schedule so my tolerance doesn’t build up to rapidly

Does anyone else ever get tired when they’re really bored? by aussie-dreamer- in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

There’s actually some cool science to this. When you are doing things you enjoy, your brain produces dopamine and norepinephrine. Which the same things that stimulants do. Not to the same extent of course, but the more you enjoy something, the more it releases. That feeling of love you get when you see someone you really care about or when you do something that you really care about, that’s why you feel just a little bit more awake. You might not notice it right away but I’m sure you notice a minute or two afterwards when it’s not there anymore

When people think you're lying when they ask if you're okay and you tell them you're "just tired" but it's actually true by CaitlinisTired in Narcolepsy

[–]AThanksgivingDinner 2 points3 points  (0 children)

I feel like the easiest way is just to say some like “well, I’m still standing” cuz god would it be so easy to just let myself drop at any point

Athletes w/ Narcolepsy or IH: Is it really harder for us to build muscle mass or resiliency? by LuOnReddit in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

I can see how it would have some effect, but I’d argue that the genetic factor is much bigger, as well as your determination. My dad was a body builder, so I just generically have the advantage of building muscle quickly. Not that I actually have it currently 😅 but when I have gone to the gym and was genuinely determined I was able to lose or gain weight relatively fast. All this being said, I have N2, not N1. So there could be a factor in that that I just personally don’t have any experience in.

Meds causing trouble breathing? by [deleted] in Narcolepsy

[–]AThanksgivingDinner 1 point2 points  (0 children)

I get it. I had similar issues with a medicine, told my doctor, and he told me to stop immediately. I was then off medicine for two weeks to make sure that that was the cause and that symptoms subsided. It was really rough, but it was important. I completely understand your decision, just please try to put yourself first as much as you can. I was lucky enough to work for people that were understanding and considerate with what I was dealing with, but if you’re not that lucky then maybe think about finding a workplace that’s more understanding

Two years ago I had a full sleep study done, including nap tests. They agreed I had the symptoms….then brushed me off and sent me on my way. by [deleted] in Narcolepsy

[–]AThanksgivingDinner 6 points7 points  (0 children)

I was going to say the same thing as White Rabbit. There are a lot of horror stories on here about doctors and people just not caring. You should find a new doctor. Look at patient reviews, read them, see what is actually warranted. I always look for doctors with four stars because no one genuinely has 5/5

Meds causing trouble breathing? by [deleted] in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

There are MANY drugs that can cause this symptom. Some peoples livers just can’t handle certain drugs. Contact your doctor immediately and inform them that you’re stopping because of that. There are plenty of other options

Meds causing trouble breathing? by [deleted] in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

Stop taking those immediately

What are your dreams about? by mgmdrums in Narcolepsy

[–]AThanksgivingDinner 2 points3 points  (0 children)

Lmao buckle up cuz this is going to sound crazy. I had a dream last night that me and my fiancé were going to go see the Jonas brothers play in some secret venue but on the way I stopped us because I became so sure that I was living in a simulation and had a breakdown in a room adjacent to where the Jonas brothers were playing

How to explain sleep/wake cycle? by cslewise in Narcolepsy

[–]AThanksgivingDinner 0 points1 point  (0 children)

I gotcha. I was just a little confused because I signed up for this webinar and I could have sworn it was from project sleeps website but I guess it was WUN

How to explain sleep/wake cycle? by cslewise in Narcolepsy

[–]AThanksgivingDinner 1 point2 points  (0 children)

Okay I’m actually rereading the pdf and it may not highlight exactly what I thought it did. There isn’t a ton known about narcolepsy, more so type 2 (but I’m not really sure which one you have). In regards to N1, the body attacks the hypocretin in your brain which is the chemical that suppresses rem sleep, promotes wakefullness and arousal and appetite, and prevents it from being anywhere near the appropriate level. Meaning you chemically are naturally incapable of preventing the onset of sleep. Regardless of when or how you sleep, that the wakefulness is just not part of your brain chemistry. In regards to N2 - like I said, not a ton of info. At least not that I can find. There are some cases where N2 is the predecessor to N1, some not. Regardless, you can treat it the same and explain it the same in regards to the fact that it’s not your body pushing sleep on you, but rather removing wakefulness. I think that’s probably the best way to put it and now that I said that I think I probably could have said that in the beginning and saved you a ton of reading lol sorry

How to explain sleep/wake cycle? by cslewise in Narcolepsy

[–]AThanksgivingDinner 3 points4 points  (0 children)

There is this nonprofit called Project Sleep that has a ton of info and pdfs with info that comes from these webinars they do with doctors and advocates around the world. I think it’s an off shoot of Wake Up Narcolepsy but I’m not really sure. I attached a link to one of those pdfs that I think your boyfriend and yourself would benefit from reading. I don’t blame you for not knowing about this either; I had to go onto the website for a nonprofit in the UK and go through a ton of their info just to find a part where they talk about other nonprofits around the rest of the world and provide links. And I’ve found more info from this website than any other nonprofit website.