Before I get too long winded, let me say I been dealing with TN for 8 years thinking it was TMJ. As time went on the attacks got longer, more intense, and remission periods got shorter. This last attack that started in July was the worst one ever and ultimately cost me my job, and sparked an app for Disability. My question is this: Even though the intensitity of the daily attacks are reduced because of the Tegertol now...I feel like I have some lingering effects from this severe attack. My face is still swollen, still have the indescribable headache, and my right eye still does not always see clearly, want to focus, and feels like something is kinda stuck in outside corner of it. Also, my ear still feels like something is stuck in it, and my face seems to itch on that side all the time...around my ear, my cheeks, my jaw line, my forehead, and my hair line...all on the right side....Has anyone else had this happen or feel this way???
I have! I have had a MVD (right side) and have chronic pain in my right eye. Most days it does not focus. I can’t see clearly out if that eye at all. The facial pain is incredibly debilitating. As far as the “itching” I would lean more towards a guess of the nerve endings sensing rawness. Mine did that too, I thought I had lice at first. I work at a preschool when that happend. We had just Han an outbreak. That sensation drove me bonkers.
OMG its so funny you say you thought you had lice because I keep telling my hubby that I think I have bugs!!!!!
Maudie, are you seeing a neurosurgeon? Might be that your TN is turning into ATN. I get the lingering effects too, much like you describe but my pain didn’t start out that way. So sorry this last attack has cost you your job.
Bellalarke
Bellalarke, No neurosurgeon yet. First neurologist apt is this coming Monday. My PCP has been trying to manage it, but he does not know what to do with me. Per his own words is he has only ever treated one case of TN before and it must have been a mild one. LOL They have got to the point where they wont even return my calls anymore. And so be it. I am out in BFE and must use the VA system as that is the only health benefits I have. I think it is ATN as well. I even printed out a thing about it from Wikipedia and took it to him at my last visit...he changed or maybe added (Im not sure) a diagnosis of Atypical Face Pain. I was rather upset by that, but whatever I guess. I feel like I am going to kept swept under the rug and have to keep suffering. My MRI did not show anything remarkable other than that there is an "anatomical variation in the appearance or location of my cerebellum"...whatever the heck that means. My face pain is at bay for the moment. However I still have the headache that nothing works on and my face stays swollen to some degree. Also still have the pain in the eye. I am learning the precursors to attacks though now. I began a journal this time of whats been going on since this episode began...which my PCP also did not bother to even read...I am so disgusted and frustrated and stressed and I don't know what else anymore. Just wishing I will wake up tomorrow and be in a period of remission!!!
Can you go to google images… Look at images for TN
then do same but search atypical face pain (which used to be called tn2 )
Print off the pict that is your pain for neuro!,