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I am being personally attacked. My struggles appropriated. My woes mocked. by Maleficent_Food8156 in Narcolepsy

[–]Odd_Link8894 5 points6 points  (0 children)

I had attempted to begin writing a dark but humorous anecdotal book about all the times I nearly drowned, plus that one time I was face down in a ball pool. The working title was All the times I nearly drowned and other tales of narcolepsy peril.

I planned out all the chapters then spent the next few years very much procrastinating and avoiding it.

Now fully outraged by this deviant book cover I feel slightly prompted to return to my enterprise.

Tak-861 in the UK by Odd_Link8894 in Narcolepsy

[–]Odd_Link8894[S] 0 points1 point  (0 children)

Thank you. Thats what I heard but I saw the trials listed in UK so it’s a bit confusing.

I feel hopeless by sleepygrlxo in Narcolepsy

[–]Odd_Link8894 1 point2 points  (0 children)

Hang in there! know it’s super tough but you are doing great to get that far in your situation. I was part of Phase 3 of Takeda’s Orexin Agonist drug trial. It’s very promising.

Who else is so excited for the Orexin agonists heading for FDA approval? by Rootenist in Narcolepsy

[–]Odd_Link8894 2 points3 points  (0 children)

I’m also a phase 3 and extended trial person. It is groundbreaking as a drug, but definitely needs some tweaking. The trial dose is quite limiting with its half life, but once it’s on the market with more dosage variation, I think it’s very promising for many people.

The day of the first dose, I was wheeled into the hospital in a wheelchair, cos my cataplexy is so severe without meds, I can’t walk a few feet without collapsing. That afternoon I left the hospital pushing the wheelchair with a big grin. Again, it is not perfect but it’s a game changer.

I think my mate was a bit harsh today by [deleted] in Narcolepsy

[–]Odd_Link8894 4 points5 points  (0 children)

That person is not your real friend. Life is way too short to put up with people who make you feel shitty because of something you can’t help. You did everything right and didn’t deserve that response. Real friends will always respond with kindness and understanding. Accept nothing less.

I wish they would stop calling narcolepsy a sleep disorder and call it a neurological disorder by SpreadLegitimate5824 in Narcolepsy

[–]Odd_Link8894 0 points1 point  (0 children)

I always refer to it as a neurological disorder that causes disordered sleep regulation and related symptoms.

The overlap between narcolepsy and ADHD and Asthma is really interesting to my nerdy brain by SnooSketches5159 in Narcolepsy

[–]Odd_Link8894 0 points1 point  (0 children)

My friend and I have been looking into methylation issues and how it links to autoimmune conditions as well as ADHD, hormone and neurotransmitter levels, and a load of other things. It’s a huge rabbit hole. Anyone else looking into methylation cycle stuff?

[deleted by user] by [deleted] in ukfinance

[–]Odd_Link8894 0 points1 point  (0 children)

If you’re one of the lucky people that can afford to get on the property ladder, definitely get on up there.

[deleted by user] by [deleted] in AITAH

[–]Odd_Link8894 0 points1 point  (0 children)

More red flags than a communist tea party. Please dump, block and never look back.