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I have the suicide disease. The worse, TN2 version. That is not a sly term for mental illness, it's a nerve disorder that has pain so great that people kill themselves rather than face yet another day of it. I am rarely below 3 on the 1-10 pain scale (at 4 right now) and I've reached 10 more times than I can count. This is with medication keeping it at the level where I can function.
I am such a bad judge of pain that the trauma from my not realizing for half a week that I had kidney stones and not taking any painkillers and then being stuck first in a clinic and then the ER for 14 hours writing in agony until they finally decided I did, in fact, have kidney stones and gave me some fentanyl, caused severe trauma and gave me an eating disorder called ARFID, unrelated to body image issues, and I have not eaten solid food in a year and a half.
Explains a lot, doesn't it?
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
https://en.wikipedia.org/wiki/Avoidant/restrictive_food_intake_disorder
Hey, you asked.
P.S. If you try to give me medical advice over the internet, I may just block you. I am so fucking sick of that. And no, "I know you said you didn't want medical advice, but..." does not count as a way around that. And I am fucking sick of having to say that and having people ignore it too.
I know you said no advice, but have you tried jerking off a bunch?
Blocked so I can go look at porn uninterrupted.
Damn, so sorry you're having to go through this. May the days be kind to you, friend.
Thank you.
I wondered how things were for you. I'm so sorry. I do know of a new treatment for trigeminal nerve stuff simply because I work in neuro I can tell you about if you want but I most certainly won't give you advice. I just know someone who is using it and it's new.
I appreciate it, but I have good people I am working with.
Ok all good. Hope you get some relief soon.
Thanks.
Sorry to read that. But in some way I am almost relieved that you seem to finally know what caused your insanely severe case of ARFID. I remember when you were posting about your time at the Mayo clinic and the awful mismanagement there and was very sad and disappointed (not by you) that you were bombarded with enough armchair diagnostics to stop updating about your case.
When did you get diagnosed with TN2? And how long was the gap between the kidney stones and your last bite, if I may ask?
Thanks. I don’t really feel relieved by it, mainly because it’s kind of irrelevant to the future, but it is what makes the most sense and it’s better than having no idea.
When did you get diagnosed with TN2?
I think about 10 years ago. Maybe 11 now. It might be genetic because my dad had TN1. But he got it in his 70s. It usually manifests itself at that age. I was in my late 30s.
And how long was the gap between the kidney stones and your last bite, if I may ask?
That’s kind of complicated. A few weeks after it happened (January 2023) I started dry heaving every morning. That has been almost daily for me. Occasionally more than once. Then that March, I had this issue for about six weeks and then I was fine again until August. And other than at the Mayo Clinic when they totally numbed my mouth with a lidocaine-based compound, when I was able to manage a couple of bites of egg salad, that was the last time I had truly solid food. I’m also the smelling equivalent of a supertaster. I can smell cleaning fluid inside stores from when the custodians mopped the day before.
Working with a psychiatrist and doing RO DBT therapy, I am at a place where I can eat pretty much anything if I don’t have to chew or use any utensils and I have conditioned myself to just deal with the smells even if they are awful. I’m even able to cook for my kid now.
So I am in a much better place than I was even six months ago.
Damn, that blows. Thanks for sharing, I didn't know that was a thing.
I'm here to try something different... Instead of recommending a medical thing, how about you go on https://loops.video/ and share it with the rest of the world?
Shit, that's some crazy symptoms! Fight on!
I actually did make a video about it once which has helped others, so I'm glad of that. But I don't want to doxx myself and link to it.
That's a raw deal. I always thought a 1-10 pain scale was a dumb Idea. Pain is pretty subjective and someone who hasn't experienced severe pain doesn't really have a way to understand what constitutes a 10. (I would answer differently before and after my cycling accident for example) Personally I think that setting the scale as 1-10 where breaking a leg is a 6 (or something) would be more diagnostically relevant. I trust your judgement, although what you call a 4 would probably be most people's 8.
That must be the toughest condition I read about in a long while. It's amazing that you kept going. It's also amazing that you decided to share this!
Thanks. I have definitely had my very, very low points, but you just try to keep going when you can until you have no reason to do it anymore...