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.
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.
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.
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.