Hi, I am hoping to find another Atypical facial pain /trigeminal neuralgia preferably a female like me that is willing to connect and maybe share stories with and compare this insane pain. Thank you
Hi! I'm Atypical and I'm fairly sure I'm female. I don't know how much help I'd be to you though.
Hi Tridi, Please check.out our TN2 group. http://www.livingwithtn.org/group/atypicaltrigeminalneuralgia - plenty of folk here to have discussions and connect with.
All the best,
Smiley.
Hi tridi, how long have u been suffering from this crazy pain. I have my goods and my bads
I've had this pain since March was just getting slight jolts around my right brow but thought it was from stress caused by my dissertation which was completed in January and recently married in March... in April while moving I hit my head several times but never lost consciousness. April 25 it hit me like a brick... I had severe jolts on my right side and and searing pain on my scalp. Brushing my teeth , combing my hair, washing my face, a breeze , or a car ride will trigger the pain and the worst part is later in the night i pay for it. Went to the ER they said it was a migraine gave me a cocktail of meds and sent me home with no relief. Went to a neurologist who also thought it was a migraine and sent me to get another cocktail of meds no success, waiting now to see a specialist in NYC hoping to find the right diagnosis and meds... been in neurontin, trileptal answer Lyrica. Have had 2 procedures done by a pain management doctor, sphenopalatine block and a stellate ganglion block with no success... my fear is that I will never get rid of the pain or condition.
I’ve been dealing with pain over a year, diagnosed with atypical trigeminal neuralgia about 9 months ago
Anna no relief? What have you had done?
Hi Tridi
I too have atypical and at the moment I'm not on any medications due to not getting relief from any that have been prescribed. Most of the day my whole face throbs and most of my pain is now in my mouth. I am just about to try platelet rich plasma therapy to see if that can help, as my new GP speaks very highly of it.
I have had TN since 2006 and did have a break of 6 years with no pain whatsoever, then it hit again in 2013. I am still hopeful that I will find something that will give at least a little relief, as it's personality changing being in pain all of the time and hard to focus at work. Luckily I have a very understanding partner who helps me a lot and lets me be when I'm in a lot of pain and just want to lie down.
From reading a lot of posts on here, there is definitely not a 'one size fits all' approach to this condition and I do think that you have to try what your Neurologist prescribes to see if 'this one drug' may be your helper.
Tridi, I have tried Neurontin, but had horrible side effects. GP prescribed Norco,which only takes the edge off SOME days. Saw 2 neurologists, and was diagnosed with ATN. Was sent to pain clinic, had 4 different steroid injections into the nerve, plus started on Elavil,not sure if it's helping. Scheduled for a radio frequency ablation in a few days. At home treatments that sometimes help are ice or warm compress. Also tried a prescription cream, helped a little but not a lot.