I've been doing some thinking about some claims we see tossed around here as though they were facts that I think should be open for discussion.
TN is the most painful condition known to man.
I've seen the same literature as everyone else here. The original was more like "Trigeminal neuralgia has been described as one of the most painful conditions known to man." One of, and that is important.
We aren't special, we're just one of. That statement doesn't even allow us the worst pain known to man, just a really painful condtion. I'm not even sure that's true anymore. That statement was made back when the only TN was classic TN and excludes what we now call TN2. Until a few years ago, TN2 sufferers had an entirely different set of disorders, so they weren't even counted in that description.
A few years ago one of our neighbors died of pancreatic cancer. At the end his pain was intractable, nothing would stop it. i'm relatively certain that what he felt was far worse than anything we've ever felt, and it was a blessing to his wife when he died. Watching him suffer added ten years to her face.
A few years before that my husband's cousin and I had lunch because she had just gotten diagnosed with TN. We had a nice chat and I encouraged her to get an MRI to rule out the unusual. When she did, they found cancer that had spread from her liver to her spine and up into her brain. TN quickly became the least of her pains and her children are without a mother. They would've preferred a mom with brain fog to the one in the grave.
Back when treatments like medication and MVD didn't exist, the claim was solid. Today, I'm not so sure. If we were really all still suffering so horribly this support group would be filled with people bitching about how they can't feel their faces because we would've all gone out and had the nerve destroyed already. Or we'd have killed ourselves and this site wouldn't exist.
The reality is that every single one of us has options today that make TN painful, but not incapacitating.
TN is a rare disease that only affects old people. I'm young, so that makes me very rare.
Once again, this used to be true but isn't anymore.
TN was a rare disease back when the term meant something very specific. Most people who got it were over 60, and what they got was TN1. Again, TN2 didn't exist, you couldn't get it, young or old. You probably had Atypical Facial Pain, and it was a psychiatric disorder, not neurological. Of course, this meant that you were crazy or faking it as far as medical doctors could tell.
For all you young people out there, your problems come from the fact that you didn't exist or were an oddity until just a few years ago. Your doctor doesn't understand because they were already out of med school when the new classification was proposed in 2005. That's also the reason they keep trying to send you to a shrink.
Today, because the term Trigeminal Neuralgia means pretty much any chronic pain of the trigeminal nerve with a few additional qualifiers (TN1, TN2, symptomatic TN, etc.) it is a relatively more common neurological disorder. We're talking one person in 10-15,000. Be grateful if you're one of the ones who are lucky enough to live in a developed country with access to medical care.
I'm going to be disabled, my life is over, etc.
Only if you want to be disabled, or if your life being over appeals to you. It's your choice and there are no excuses or "special considerations."
If you don't like the side effects of your meds, get in line with the rest of us. You aren't special and you aren't more delicate. If you have a rare allergy or serious side effect (like your skin starts falling off), get on a different medication. With the wide variety of medications available you are realistically not going to be allergic to all of them.
If you seriously hate the meds or have a clear compression, get surgery. It has risks, but so do all surgeries. Nothing in life is risk free.
If things are completely intolerable, have the nerve destroyed. Your face will be totally numb for the rest of your life, but everything is a trade-off when it comes to severe pain.
If you are still foolish enough to believe that your life is over, recognize that you are just going through the same stages of grief that we all went through. It will get better with time and you'll realize how stupid it was for you to believe this nonsense just a little ways down the road.
Very few careers need to be ended because of this. If you are a medical professional, attorney, truck driver, or child care provider one of them may be yours. Everyone else may be able to develop enough assistive aids to get by. Think I don't understand? You're wrong. I work in foreclosures and have to drive around all day and stay on my toes enough to outrun dogs and face potentially deadly situations every single day all day long while taking meds that make me dizzy and sleepy. You think dealing with answering phones is tough? Try an angry homeowner with a gun or pit bull, or a vacant house with multiple safety hazards/booby traps and get back to me. And this is the career I switched to after my TN started.
This is a support group, I come here for hugs and kisses, not to have my ass kicked.
What you are hoping for is about as useful as going to an AA meeting so you can sit around talking about how great it is to be drunk. It's just pissing in the wind and not the least bit useful.
Nobody should ever support someone feeling sorry for themselves or give you tips on how to be a better loser. If you want that, you're looking to hurt yourself.
When I first got here, I wrote about whether or not I belong here. I'm still not sure, because I haven't figured out if this is a real support group or just a bunch of people who want to cry about how nobody understands. Umm... we should all understand... and understand why it's important not to let our sympathy get toxic to us and all the new sufferers out there.
The stages of grief apply here as much as anywhere, but we can't lose sight of our responsibilty to move through them and encourage others to do the same.