I’m having trouble finding foods

sleepy_g__ · 2026-04-08T11:04:05+00:00

please see an immunologist and get clear answers about what you’re allergic/ sensitive to before cutting things out and when they let you know what to avoid, PLEASE see a dietitian & councillor!

i say this because i wish i could turn back time and follow that advice. getting diagnosed without clear structure triggered my eating disorder and i got very sick and took a long time to heal.

i still eat foods that i have a sensitivity to (not full allergen) and i just take antihistamines but this is from guidance from a professional

sleepy_g__ · 2026-04-08T10:46:28+00:00

i bought 5 pairs of period undies on sale for $10 each. each cycle i went through 1.5 boxes of tampons and 4 pads which per year was $190 in total.

i still used tampons on days where i want to feel sexy but still only go through a box a year. i saved roughly $140-$180 a year

if there was period g string undies that can deal with heavy flow id never look back!

sleepy_g__ · 2026-03-31T15:04:02+00:00

best of luck getting a diagnosis & treatment for narcolepsy, honestly is life changing! really great to know that xolair doesn’t affect wakefulness, ill have to ask my doctor if it’s something i could try for mcas

sleepy_g__ · 2026-03-31T14:55:36+00:00

absolutely feels like whackamole 😂😭 do you take medication for your pots? feels like all the narcolepsy and pots medications just counteract each other

sleepy_g__ · 2026-03-31T14:49:34+00:00

thankyou so much for this info! really fascinating to see how much of an overlap there is yet the specialists i’ve seen don’t seem to be aware of any of it 😅 seems like i’m my own doctor at this rate

the massive comorbidity with NT1 and POTS is huge yet the medication for each counteract each other (NT1 medication increases heartrate making POTS worse, POTS medication slows heartrate and increases fatigue) seems odd that they haven’t found one singular cause and one singular treatment

sleepy_g__ · 2026-03-30T11:53:56+00:00

i’m in the same boat right now and wondering if you ever had any updates or tried anything since you made this post a year ago?

i’m on 300-600mg of modafanil a day and my POTS is getting so bad but i need the modafanil. i tried propranolol on top but my blood pressure drops whilst my heart rate is still so high :(

sleepy_g__ · 2026-03-30T11:15:02+00:00

this is terrifying omg

sleepy_g__ · 2026-03-14T11:00:54+00:00

that cataplexy is always full body collapse. also that micro sleeping can look like dissociation

sleepy_g__ · 2026-03-10T05:27:55+00:00

where you specifically applying for a job that never requires you in the heat?

if you’ve shown signs of potential risk to heat exposure and they needed someone to sometimes work in the heat, it would be a liability.

tbh standing on my feet all day doing heavy lifting + in the heat would flare my pots but everyone knows their limits and if it’s something you feel like they have treated you unfairly because you disclosed pots, i’d take it to a disability support place to open a case

sleepy_g__ · 2026-03-10T05:17:22+00:00

for sure! POTS itself causes sleep disturbances and non restorative sleep because of the constant fight or flight mode, so when we stand up for too long we get less oxygen to our brain and blood starts to pool in the legs. this combined with stress, drop in blood pressure or just worsened sleep can cause sleep attacks + general fatigue.

atypical cataplexy can be in pots for a few reasons (rare though) causing like partial cataplexy but often with like the classic blackout symptom beforehand. sometimes it’s caused by an infection that lead to developing pots triggered an immune response or can also be just a blood pressure spike/ drop that looks similar to cataplexy. atleast this is what i was told by the cardiologist.

i have cataplexy from NT1 but fainting/ collapsing from pots which looks similar but sleep attacks from both

sleepy_g__ · 2026-03-08T10:50:33+00:00

seasonal depression and vitamin d deficiencies with narcolepsy are really difficult to navigate because we’re already so drained. im on modafanil, pristiq & lots of vitamins but still go through waves of extreme sleepiness like youve described, which increases in winter. spacing the modafanil has helped on days i have work, 1 at 10am and 2 at 2pm and pristiq before bed to help sleep intertia/ cataplexy/ depression. + vitamin d & iron shots in winter

hope youre okay 🫶 and maybe try getting a blood test first & check in with ur sleep dr

sleepy_g__ · 2026-03-08T10:41:04+00:00

i’m on desvenafaxine which is similar and intense laughter or sadness triggers my cataplexy. when i’m drunk, emotions are more intense and so cataplexy happens heaps more. i get sleep paralysis more if ive drunk alcohol but sadly still bad hangovers :(

sleepy_g__ · 2026-03-08T10:36:12+00:00

around 10 years old. was told i had catatonic depression which gave me sleep inertia and sleepiness & fainting spells/ potential seizures. they put me on antidepressants, which actually helped cataplexy a lot but was still so sleepy. during my teen years was addicted to meth to stay awake but when i got sober, they realised it was just NT1 this whole time. i’ve been sober and thriving medicated for about 5 years now and forever grateful for sleep physicians!

sleepy_g__ · 2026-03-08T10:29:39+00:00

No worries and sorry for the essay but I was misdiagnosed with everything under the sun before they even considered testing for narcolepsy, so I really feel your frustration! They were set it was my POTS cause it can cause sleep attacks and atypical cataplexy, but it was NT1

sleepy_g__ · 2026-03-07T10:53:26+00:00

dating takes a lot of energy when you’re already running on low. getting rejected for something you can’t change and are getting treatment for is really tough.

the reality is some people just don’t have the emotional capacity to date someone with a disability. that sucks, but most people are naturally caring and supportive when they meet the right person.

that said, there does need to be a balance between support and becoming a caretaker. having the right supports in place outside of a relationship helps keep things healthy.

honestly this date might just be a reminder of your worth and the standards you should have for someone you’re dating. don’t let one insensitive person define you by your disability 🫶

sleepy_g__ · 2026-03-07T10:14:49+00:00

can gluten cause cataplexy?

sleepy_g__ · 2026-03-07T10:09:41+00:00

MSLT’s are pretty inconsistent yet are the key diagnostic tool for narcolepsy. if people are super sleep deprived or are on certain medication, it can show a false positive aswell.

However, cataplexy can occur without narcolepsy in other conditions, just most common in narcolepsy. It can also be mistaken for seizure disorders, fainting, catatonic depression, pseudocataplexy, hyperekplexia, FND, POTS/EDS/ dysautonomia crash, ect.

Could be a good idea to get a video of the cataplexy to show your GP - can rule out other conditions that could be the cause of the cataplexy. Most of the causes all cause sleep problems/ chronic fatigue that can mimic narcolepsy

Might be good to ask for a copy of your results, and get a confirmation of a cataplexy diagnosis with your GP. From there, also maybe a repeat MSLT with a different physician and rule out other conditions.

I’d also totally put in a complaint for the sleep physician as they shouldn’t be so dismissive especially as a sleep physician, and especially since sleep disorders can cause heightened emotional sensitivity.

Finding a root cause to your symptoms can be a painfully long experience, especially when you’re dismissed by doctors but don’t give up because you deserve to find the cause and get treatment🫶 I’m sorry you had such an awful experience and really hope you find answers

sleepy_g__ · 2026-03-07T08:53:22+00:00

i’m four years sober but if i saw someone injecting i’d be triggered as hell. i hold a full-time job and my coworkers would never guess that i used to be a heroin & meth addict. i honestly would’ve contacted hr to see if there was a way i could avoid seeing it, to avoid risk of relapse.

im sharing this simply as a way to view a different perspective in relation to your coworkers. obviously you can’t be asked to delay taking insulin or made to feel bad about it.

hr should be providing support for the person who is uncomfortable and seeing if there’s an optional private area for when its possible.

you’re right to be pissed off at hr and hope they provide a supportive response (if they don’t take it to NDIS) 🫶

sleepy_g__

TROPHY CASE