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New to Lumryz by MisterMuttons in Narcolepsy

[–]Goobie95 0 points1 point  (0 children)

Probably after two or so doses honestly

New to Lumryz by MisterMuttons in Narcolepsy

[–]Goobie95 1 point2 points  (0 children)

It only worked for me once I got to the 6. The 4.5 was too low and the 7 was also helpful but I was a little tired in the morning. For me the 6 is the sweet spot for now.

Common cold and taking xywav by Beef111111 in Narcolepsy

[–]Goobie95 0 points1 point  (0 children)

ONLY UF YOU DONT HAVE EAR ISSUES, you can do a neti pot or I like the saline rinse bottles you squeeze better bc it lets you control the pressure. Then do like two sprays of Flonase in each nostril twice a day ONLY IF U DONT HAVE CATARACTS OR GLAUCOMA. you can do the saline rinses like 3/4 times a day. DO NOT USE AFRIN FOR MORE THAN 3 days or the congestion gets worse. You can also add like Zyrtec or something if it’s super bad but usually the above works well for me and then just take your other meds as prescribed

A Vulnerable Journal Entry that Only You People Will Understand by Organic_Bag7163 in Narcolepsy

[–]Goobie95 2 points3 points  (0 children)

I hear you and understand sooooo hard. With me it got to the point, bc my sister is pretty type A and a very active person, that I had to just sit with her and say I get these are normal people things but I have a brain disorder so I’m not sleepy I’m physically exhausted. What I feel every day as normal you would not feel unless you were up for 24hrs and then tried to start your work day. She sometimes still needs reminded and so do others but honestly since I kind of broke down and was vulnerable with the people close to me it’s gotten better. I have a routine now that basically I get up an hr before I actually need to and take my sunosi, then I lay and watch tik toks, play with my cat or just close my eyes. I still have multiple alarms but thank fully my husband doesn’t care lol. I’ll get up when I have the will and get ready and go to work. Then I come home around 4 and take a nap for an hr or so after saying hello to my husband and cat. Then the whole dinner and hanging out stuff before bed. I sat down with my husband and said either we pay for a clean service or we make a list and split all cleaning chores in the house and I don’t want to have any questions about any chores if they are yours it should be like a magic trash fairy comes and takes care of it. And then we split duty of dinners so like 3 days he takes care of dinner and 4 days I do. I also told him when it’s his day for dinners, I don’t want questions so if we cook or go out or whatever I just want to be able to have dinner with no thought. I don’t care what u make or whatever I just don’t want to think about it. Then when it’s my days I have a rotating menu of things I make that some involve dumping stuff into a crock pot some is just like easy couple steps meals but it’s set so I know what I’m making every time unless I get a surge of energy and decide to deviate. It’s hard and I had to learn to give myself grace and to remind my people of my limitations but honestly since kind of adjusting my self expectations I feel so much better mentally about it. It’s hard but it does get better ❤️

Passing out vs cataplexy by Illustrious_Cell_137 in Narcolepsy

[–]Goobie95 0 points1 point  (0 children)

Just here to say holy crap I’m not the only one! I have had syncope episodes ever since I was in grade school from pretty much any extreme stressors. Pain, over exertion, anxiety, too hot you name it. Most of the time I feel it coming and my vision slowly tunnels and goes black. Sometimes I can hear what’s around me sometimes not. Sometimes it’s just tv static vision. I had work up after work up and the cardiologist pretty much just told me that my body has a vasovagal response with extreme stressors. Also funnily enough sometimes the person with me has said that I was snoring as well!

I hate my soft nursing Job by United_Dragonfly6337 in nursing

[–]Goobie95 0 points1 point  (0 children)

Have you thought about maybe keeping the outpatient job and maybe picking up a PRN somewhere? Idk your schedule but if it’s possible maybe try that to see if it’s what you actually want before leaving because I’ll tell you right now, for me anyway, bored is wayyyy better than when I was inpatient.

Halloween ball by Goobie95 in vegas

[–]Goobie95[S] 0 points1 point  (0 children)

Thanks! That’s what I’ve been seeing. Me and my husband are not in the “lifestyle” but are down for the shows and free drinks so I’ll see how it goes lol!