hi all,
I was reading the “Striking Back” book last night and I came across the definition of “pre-trigeminal neuralgia” (lets call it PTN).
I am suffering from what my doctor said was atypical trigeminal neuralgia, (more of a constant, dull, achy pain) however after reading about PTN i think that may be a better diagnosis.
Initially i thought the distinction is superfluous, however after reading more i realized that it makes a big difference.
ATN is considered as a “late stage” in the progression of TN while PTN, as indicated by the name, is the initial stages of TN
in terms of treatment, ATN seems to respond well to TCAs, whereas this PTN seems to behave a lot more like classic TN in terms of medication response
We’ve spoken before, I’m not suggesting my reply is going to be overly helpful.
I’m not so sure that classification of TN is overly helpful to the individual who is suffering be it PTN or otherwise, classification is not a diagnosis, from my understanding in any TN symptom pattern short of space occupying lesions found on imaging being a likely cause.
I think identifying, the why me, why now, aspects of causation can be more helpful. I know you like your research, any ideas?
Hi mate,
Good to see (talk?) to you again.
I guess you are right, i have to stop arguing with my pain lol. None of this researching is reducing the pain.
Also i found a thread here and Red had an insightful comment about the idea of pretrigeminal neuralgia:
He basically said: “The term “pre-trigeminal neuralgia” seems to be falling out of general use, in favor of the more precise “Atypical TN”.”. If that is the case then the distinction is getting very murky and perhaps not worth pursuing.
ps since the last time we spoke i have started to have weakness of the jaw and tongue, not sure how this fits into the big picture.
The term “atypical TN” also has its detractors. Some physicians prefer “trigeminal neuropathic pain” as a description for any type of neurological hemi-facial pain which has the common characteristics of neuropathy: burning achy, 24-7 pain lasting days to weeks to longer, as distinct from the volleys of electric shock stabs which are called “trigeminal neuralgia”. I must emphasize that the labels are less important than determining a course of pain management.
“Weakness” of the jaw or tongue should probably be checked out by a neurologist. At times the distinction between weakness and parasthesia isn’t obvious. Any true muscular weakness should prompt an evaluation for MS or other less well known disorders.
Parasthesia is a common symptom of neuropathy (discrete physical injury of the nerve) as an underlying cause of pain. Where parasthesia occurs, a lot of physicians will try you on a course of one of the tricyclic antidepressant meds (Amitriptyline, Nortriptyline, several others in the class), to see whether your pain is moderated.
Hello
I’ve just been informed that I have Atypican Neuralgia by neurologist after suffering with this horrendous back of head and side of head left side after 3years thinking no one believes me and now on gradual increase of Tegretol ,and it makes me so weak in many ways even trying to walk and speak but managing to get back to some normal way of life but fail to do any sport or socialising ,pain being excruciating when it gives me the full blast of itself after a few days away from me .tell me cann I buy this Sriking back book in England and also name of author as I’m definitely not going to let this pain destroy me even though GP said I will never get rid of it ,I’m hoping when I reach the highest dose of Tegretol ,it will go after all lm 80years old and want to enjoy my last few yearsPain free.b
Jane, give yourself 4-6 weeks to acclimate to Tegretol and see if its side effects moderate, before looking for other alternatives. Medication sensitivity varies considerably between patients. Many people do better on Trileptal, which was designed to emulate the action of Tegretol while generating fewer side effects. Neurontin is generally less effective but still helps a fair number.
Striking Back can be bought on Amazon. The authors are George Weigel and Kenneth F. Casey MD. It is generally considered the patients’ “handbook” for facial pain of neurological origins. Fair disclosure: I wrote the Internet Resources annex of this book, in the first Edition.
Thanks red I have been told to increase to 800mgs if necessary,but as you have said ,wait until I’m fully in control of myself and increase if needed,so I shall just be patient with myself and see how I feel.
Thanks