I was diagnosed 14 yes ago with atypical trigeminal neuropathy (bilateral). No mention has ever been made of different types. It I see from your posts there’s two types. Can anyone take time to fill me in on this, please?
Sharon
http://www.umanitoba.ca/centres/cranial_nerves/trigeminal_neuralgia…
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trig…
http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia
ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, affecting teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, “behind” the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
(Copy/pasted from above link)
Here at LwTN we tend to refer to ATN as TN2 and the classic electric shock TN as TN1.
atypical is TN usually caused by a trauma
Thanks Mimi. I experience every one of the symptoms described above. Do many others have this, too? I used to vomit every day, sometimes several times a day, from the pain. After about two years of this my body just stopped doing that although the pain remained the same.
There was never any mention of a type 1 or 2. Just atypical.
What is your experience with trigeminal neuropathy?
Sharon
Alorah- I haven’t experienced any trauma. It just sort of crept up on me and within a few months it was a full blown horror story.
Sharon
I was diagnosed in 2002, aged 29.
I had Classic TN1 on right side and a few months later predominantly TN2 (atn) & eventually TN1 as well on left side. ( bilateral)
Back then there was no distinction…you had TN or you didn’t.
I also did not experience trauma…none.
Due to my left worsening and eventually med resistant, I chose MVD.
No mris over the course of ten years ever showed compression.
I had 3 compressions found during MVD. ( for specifics, my surgical report can be found in the MVD group).
Back in 2002 despite my pain responding to Tegretol, I was initially told by a neurologist I couldn’t possibly have TN, as " I was too young AND only persons with MS experience bilateral"
WRONG! This information is untrue, and outdated and yet is still present in some definitions of TN.
People are led to believe many incorrect things about TN even in this day and age…the truth can be found with much effort and research by studies and experiences over the years. I have spent much time and effort and continue to do so as my life has irrevocably changed as my TN progressed.
It’s imperative that we advocate as best we can for ourselves and make sure we have as much info as possible to make informed decisions for our own personal journeys with TN.
Both forms of TN can be caused by trauma, but apart from trauma, dental damage, growth abnormalities, shingles virus, tumours and MS as well as compressions (some of these are suspected causes)
The question of WHAT causes some cases of TN still remains unknown.
Currently neuroscientists are looking into genetics as well as a few other possibilities …( for accuracy see The Facial Pain Research Foundation, they outline their current studies on their website)
Mimi