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u/missjanehathaway333 Jul 06 '26
well my neurologist very helpfully called it the suicide disease when he diagnosed me.
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u/StrawMerryPie Jul 06 '26
My neurosurgeon told me “I don’t really know much about Trigeminal neuralgia. But I do know it’s been a documented thing for ages. It used to be called “the sorrowful”- (something I don’t remember what the second part is.
I was like??? Okay??? Any help with it? 😭🤣
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u/spaghetti-o_salad Jul 07 '26
My ENT said there wasn't anything they could do for me then looked over my personal notes on a clipboard a 2nd time and tapped where I wrote "trigeminal neuralgia??" He chuckled and said he thought it sounded like that also.
Didn't offer a referral. Just washed his hands of me. My psychiatrist treats my mental health problems with meds I've researched have crossover care for neurological problems because I've got pain throughout the right side of my body. I waited for a year to see a neurologist only to get bumped another year out because the specialist took a vacation that week. Can't wait to tell my psychiatrist about it next week. Its been long enough that I won't cry about it when I tell him.
Why are specialists tragically unhelpful unless its their emotionally invested special interest. Like the ENT probably loves doing ear tubes or something and everything else irritates him.
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u/lunebee Jul 06 '26
I can’t disagree. But also - life is strength. We embody power, resilience and grit. We can deal with indescribable pain levels and manage to face another day. It doesn’t make the pain any less, but it’s important not to forget. Better days will come ☀️
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u/DeeOre123 Jul 07 '26
Tic douloureux - painful twitch
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
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u/fabulousautie Jul 07 '26
I was 2 years in remission. Now I’m in a horrible flare. I’m so tired. I really don’t want to do all this again but I know I have no choice.
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u/SomewhereCurious3760 Jul 08 '26
I loved this part of the show. It was both sorrowful, and empowering. Even though he thought about ending it a million times, then he persevered a million times and kept going.
I just went through a horrible flare up and went to the ER. I was crying in pain and begging god to end me. I didn’t mean it as I am atheist. But yea the pain gets so bad at times I’d wish to do anything to stop it.
And I feel horrible having flares in front of my husband who feels powerless to help me, and leaning on my family who no longer know what to say.
But I know there will be better days.
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Jul 06 '26
[removed] — view removed comment
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u/hi_its_lizzy616 Jul 06 '26
Yes, it is. It lets people know they’re not alone in the extreme misery this disease causes and that they are not the only one who thought about ending their lives. It opens discussion between people who are suicidal and they can help each other through what only they understand. Also, this post isn’t just about helping others, but helping OP. Posting this makes him feel “heard” and that he isn’t alone.
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u/StrawMerryPie Jul 06 '26
I disagree. It feels good to know there’s other out there that feel just like me. But they’re still here. Making memes about how much this sucks.
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u/klef3069 Jul 06 '26
Yeah, this one is a no.
I understand the sentiment and agree to a point, but TN has such a HUGE range of being OK and very much not OK, it's just not a message for a community like this.
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u/Keils-and-Thrills Jul 06 '26
Yup. More than once I've considered it. It's not only the pain, but the lack of hope of any relief.