I honestly cannot figure out if I am Atypical or not. I believe I have bi-lateral T1 but then I wonder, I don't have a TN expert Neuro, shes great though. I'd like some opinions on this though to help figure it out... here are my symptoms and experiences:
My pain will usually begin in the deep recess of my ear and move forward. When I was diagnosed by an ER doctor I was experiencing the worst thing of my life and was freaking out. This was a 12, not a 10. It came in waves like labor pains and I cannot even describe how it felt as in burning, stabbing etc, it was simply ungodly and awful. That was my right side, it is the nasty side. That side has been quiet for 2 years with medication (Teg and neurotin) My left side has been the active one. I will go 3-4 months, or used to, between flares. Sometimes it is low level and I can wait it out and additional meds will calm it down but when it hits a 5-6 I know where it's going and I will head to the ER. Of course I am always terrified of it getting worse, we all are. That 5-6 can go to a 10, we know that. I do not have sensitivity issues as in touching my face, tooth brushing, eating etc. I am sensitive to cold temps outside and ceiling fans or wind. Only the lower two branches cause me pain, the one across the top does not typically bother me but lately I am getting pain like into my eye ball, which is new to me and I'm not happy about it. I've also been getting a tightness in my head but I don't know if that's the TN or the medication. As I sit here I have rt sided pain of a 2 in my ear canal, ear, into my cheek and to my eye.
Opinions? I know no one is a doctor, just looking for opinions from those experiencing this. T1? T2? Atypical? I'm lost, my doc never mentions this stuff. I do have Striking Back, guess I should read it.
Darn it I forgot to write exactly why I posted this lol I will also get this horrid pain in my tongue as well as under my jaw into the muscles in my neck... I have never seen this mentioned by anyone. Do others get this as well? It's really terrible and when I feel that in particular I know it will be very bad, it's a precursor in itself.
Aw man, really?? Really?? Sorry, now I'm upset :*( What is wrong in my head? Why do I have these things?? Anan, I deduce you are correct :( Is this GN common to TN sufferers or am I just a nutcase? Sigh...
The ear pain and waves of pain are very familiar to me, I now understand my friend who was in labor and "couldn't get ahead of the pain" comment she said. That was how it was for me a couple of nights ago-waves, gasping, holding my breath, sobbing out loud (quite the drama I'm sure). My husband almost took me to the ER but then it stopped....my neuro doc said mine is atypical because it is constant. I've only had this for 6 months and I hope it doesn't get worse. I did see an ear doc early on because of the pain below my ear and he gave me a course of antibiotics, which did nothing....
Hi Turtle, yes, those ear pains are wicked. When it hits my tongue and in my mouth and down my neck and my cheek goes off? I just want to throw my head through a wall :( Those are the worst flares. Lately it hasn't been that bad but when it gets bad enough my butt goes to the ER. There is no reason on Earth for any of us to sit and suffer like that, none. Pain causes so many things to go on in your body that it is now considered a vital sign. When it gets to the point that I am crying and rocking and smacking myself in the face, it's time to go....
I do not have any pain in my tongue or neck, but I get pain in both ears, behind my right eye, and get the pressure on my whole head. I think we all have our own unique symptoms that make up this horrible disorder. Good luck!
OMG I thought I was being a weird psycho because at the height of my pain flares I want to hit myself in the jaw with a hatchet!!! Such a weird thought to have....glad I'm not the only one who wants to give the nerve something to squeal about!!!!
Cherri said:
Hi Turtle, yes, those ear pains are wicked. When it hits my tongue and in my mouth and down my neck and my cheek goes off? I just want to throw my head through a wall :( Those are the worst flares. Lately it hasn't been that bad but when it gets bad enough my butt goes to the ER. There is no reason on Earth for any of us to sit and suffer like that, none. Pain causes so many things to go on in your body that it is now considered a vital sign. When it gets to the point that I am crying and rocking and smacking myself in the face, it's time to go....
Lol Turtlebug ;) Yeah.. have to stay saucy to deal with this but yes, I threaten to throw my head through things and various other violent acts... "I want to rip the flesh from my skull" tends to get a reaction from people lol an ER doc did tell me I was smart to smack my face ( like a hard patting) as it distracts my brain or something he said.
Sorry didn't get back to you sooner, having rotten time at the moment and yes I get these pains too, sometimes when tongue is bad I have difficulty swallowing as well. The ear pain is the worst though feels as if someone has just pushed red hot knitting needle right into my ear. Sorry you are getting this along with TN, it makes it so hard to treat. When I have difficulty swallowing I am unable to take meds so TN pain worsens too. The distraction of the brain is well known and called gate theory of pain control.
Hi Neeni..I did have a MRI and it showed nothing...my doc thinks my ATN was caused by some virus I picked up last fall, although I can't remember ever being sick...weird....