Isn't it great when our AI issues get to have friends to tag along? I would just hate for them to be lonely. I think I get to add another acronym to my growing list of issues! Looks like I have trigeminal neuralgia! I think I've had it for a while but never knew what it was. Last night I had the worst attack of it I've ever had. From my temple all along to my eye socket and the side of the bridge of my nose, down to my upper jaw area, like where my wisdom tooth used to be, felt like I'd been hit with a 2 by 4 repeatedly. OMG, worst pain ever! I wanted to just cut my head off!! The pain seriously blows my kidney stone collection out of the water.
Does anyone know if this is caused by inflammation? I've been taking 800mg of ibuprofen every 8 hours for a few months (and interestingly enough, haven't had this happen in a few months, and never this bad), but I've had to stop taking it for a procedure I'm getting next week. Only thing I have right now for pain is tylenol. Yeah, that didn't help at all!!! So I wonder if whatever is causing this was being held off by the NSAID and without any it went crazy?
I'm going to my new Dr. today that took over for my old Dr. I haven't seen her yet, she wants to see me before she refills my vicodin. I think they must think I'm a pill seeker or something. Well, let me tell you, if you had a dozen kidney stones you'd be seeking some relief!!! lol!! So no, I'm not a pill seeker, but I do want some relief until they blast these things out of me. SO.. I will talk to her today about it and see what she thinks. I can't figure out what else it could be. I went online this morning to see what it could be and TN was all that came up. I think I remember reading that a few people here have it, so figure it must come along for the AI ride sometimes?
So now I officially have hypothyroidism, Raynaud's, and now most likely TN, and next week I'll go to the rheumy and hopefully find out if I have Lupus + myositis or Dermatomyositis. Maybe an overlap? I don't care what they call it, I just want to feel better!!!!
what i am going to say.......
i had to say to myself, many, many times.
be careful what you read on the internet.
we can be 1/2 armed with information.....
that makes us 1/2 not armed as well.
the 1/2 not armed is the dangerous bit.
we read into things that we usually would not consider.
or things that are drastic.......
when another option is available.
your pain may be.........
from a few things.
you mentioned one.... inflamation.
please talk to your doctors about your worries....
before you decide what you have.
they have spent over 6 years studying to be able to diagnose.
i hope you find answers.
I have thought and thought about how to respond to this because the last thing I want to do is come across in a way that causes upset. If my attempt at an explanation makes you or anyone else feel bad or makes anyone feel that my response is mean please know that it is not meant that way and let me know. I may simply be unable to put into text my thoughts on this matter.
First let me say I have to agree with Steve. We have all been (and most likely will be again) in the "I will just find the answers myself" place. It is a fine line because, while we must be informed and be our best advocate, sometimes we freak ourselves out more than anything else.
As for the TN. Although I am not a doctor and I would never attempt to diagnose you I will say that I would talk to your doctor but I would also probably keep looking for another answer for your issue. I have TN. Of all of the things gifts Lupus has given me (pain, seizures, loss of IQ etc etc) it is the worst. My first attack made me understand why its nickname is "The Suicide Disease". TN pain cannot be ignored. I have hit the floor several times and it is the one thing that will get me to the ER in an instant. I feel sorry for the people that drive me there because every few seconds/minutes when it nails me again I am screaming in the small confined car.
I have a very high tolerance for pain. I had a hysterectomy one day, left the hospital the next morning, and never took a pain pill but with TN pain it is is fix it or kill me. I don't say those words lightly but I mean them completely when I do. Yes, it is caused by inflammation but NSAIDs won't fix it and neither will steroids. Right now my meds are keeping it under control and I haven't been to the ER with it in about a year but, to this day, the memory of the pain is etched in my mind (as is the fear that it will happen again today).
Thankfully few people with Lupus get TN pain. It is usually associated with MS rather than Lupus. I am not telling you that what you have going on isn't a mild form of TN but I am saying that I wouldn't make this something you stress over.
Hope this helps and thanks for bringing questions like this to the forum