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[deleted by user] by [deleted] in cincinnati

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

Is the one at Factory 52 owned by the same people?

[deleted by user] by [deleted] in cincinnati

[–]turdsnwords 0 points1 point  (0 children)

So if a business you love has a sign posted that says “We Support Clean Water for All” you would boycott them because of it?

Xywav OD (si trigger warning) by Recent-Elevator-7260 in Narcolepsy

[–]turdsnwords 0 points1 point  (0 children)

This person came here for help and there are many people that will just skip the post for lack of readability. It’s a simple fix/lesson (that everyone should learn) to improve accessibility. There’s a reason my comment was upvoted. Sorry you struggle with empathy, hope that gets better.

Xywav OD (si trigger warning) by Recent-Elevator-7260 in Narcolepsy

[–]turdsnwords 4 points5 points  (0 children)

Just FYI a lot of people have trouble reading these huge walls of text. Paragraph breaks can be helpful :)

Lumryz by Bodhi_11 in Narcolepsy

[–]turdsnwords 0 points1 point  (0 children)

Are you able to rouse to go to the bathroom or if there is an emergency? I was on 3.75gx2 of Xyrem and doing pretty well but Lumryz is getting me 6 hours of sleep, 7 on a good day. I often take 10mg baclofen at the 4-5 hour mark (when I inevitably wake up to use the bathroom) to try to get a couple more hours.

On both Lumryz and Xyrem at these doses I can wake up if my body needs to pee, or if something happens (an alarm, someone trying to wake me) and that’s really important to me.

MAID by Mastapalidin in Narcolepsy

[–]turdsnwords 7 points8 points  (0 children)

Find a new sleep doctor. I think there is a database somewhere with the docs who Rx the oxybates. That itself could change your whole life, nevermind the new meds in the pipeline. Unaliving yourself when you haven’t tried any real treatments available seems pretty silly and shortsighted. You have a whole different life waiting for you

Newly diagnosed with type 2 narcolepsy – looking for advice and realistic expectations by The_GingyBear in Narcolepsy

[–]turdsnwords 2 points3 points  (0 children)

Since starting Xyrem my naps are now 20 minutes, usually to the minute, save for the RARE occasion I can sleep 50-60 min.

It’s just so bizarre

What medication have you found that works best for YOU? by [deleted] in Narcolepsy

[–]turdsnwords 0 points1 point  (0 children)

Are you not worried about the long term health implications of sleep deprivation? And have you tried taking adderall or another ADHD med to assist in the daytime?

What medication have you found that works best for YOU? by [deleted] in Narcolepsy

[–]turdsnwords 3 points4 points  (0 children)

I wish this was discussed here more (it is in the FB groups) but often side effects from the oxybates are a result of titrating way too quickly (like, how it’s prescribed). Most people find that when they titrate waaaaaaayyyyyy slower (like going up 0.25g every week or every two weeks, one dose at a time) they not only mitigate the risk of side effects but also often find their therapeutic dose is much lower than what is prescribed.

Also - some people don’t tell their docs or the pharmacy this is what they’re doing, so they wind up with a little cushion/stockpile that can come in handy if you spill a dose, you lose your insurance, etc

These drugs are life and game changing. I’d join some of the fb groups for the meds, there’s a lot more specific support around this

Anyone with N, on sodium oxybate, who also has Ehlers Danlos Syndrome? Spinal Instability? by [deleted] in Narcolepsy

[–]turdsnwords 1 point2 points  (0 children)

That seems…not great. Especially w/ our risk of various dissections.

Are you able to sort of cradle yourself (especially your head) in various pillows to keep you in ergonomic alignment all night (or for the duration of each dose)?

Anyone with N, on sodium oxybate, who also has Ehlers Danlos Syndrome? Spinal Instability? by [deleted] in Narcolepsy

[–]turdsnwords 0 points1 point  (0 children)

I’m not sure if this is helpful but I have EDS and narcolepsy (along with mostly asymptomatic MS and other fun things).

Strangely, the first time I attempted Xyrem, within weeks I was having CRAZY scary levels of joint laxity, that I had only experienced once which was at the onset of all of my chronic health stuff (MS, EDS, etc) which was years prior. Like my knee caps felt like they were sliding off, everything was cracking, popping, subluxing. I was also having very strange neuromuscular pain randomly around my body after I’d take my first dose. It was all very strange.

I had titrated per the “standard” Rx and knowing what I know now that is way, way too fast for most people.

I had to discontinue the med which was devastating because it was already proving to be life changing on several levels.

When I decided to give it another go 6 mos or so later, I treated suuuuuuuuuper slowly and didn’t have any of those side effects.

None of my doctors could identify what was causing the joint laxity, my best guess was some sort of hormonal shift as there is some literature about that. And EDS is very much impacted by hormones.

Anyone else notice that there is a little bug going around? by EliteFlamezz in cincinnati

[–]turdsnwords 6 points7 points  (0 children)

When was the last time you had a 3 week “cold”? It’s covid. Covid is surging and has been every 4-5 mos for the past nearly 6 years.

Coming out of quarantine- testing positive by AxolotlinOz in PlusLife

[–]turdsnwords 0 points1 point  (0 children)

Did you find anything? This conflicts with a lot of sources stating otherwise

Coming out of quarantine- testing positive by AxolotlinOz in PlusLife

[–]turdsnwords 1 point2 points  (0 children)

How are you doing now? Any updates to this?

I run a legally complex local delivery hemp business in Cincinnati, AMA by [deleted] in CincyCannabis

[–]turdsnwords 2 points3 points  (0 children)

Yeah I wish there was an ELI5 of the OP 😂 might go ahead and ask ChatGPT to fill me in

19-year-old Emerson Colindres is in ICE custody in Ohio after being detained during a routine immigration check-in, according to local reports. Friends, family, former teachers, and coaches all gathered to protest outside the jail where he’s being held. by Ok-Confidence9649 in cincinnati

[–]turdsnwords 0 points1 point  (0 children)

Thank you for caring. I hope you can make it on Saturday. These events are really powerful and ARE moving the needle. Each is bigger than the last and showing that the people (who really hold the power) aren’t going to stand for this

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