Hi all-
Has anyone ever received this diagnosis? I recently saw a new neurologist who suggested this and put me on a trial of indomethicin. I ran a search for this condition in the forums and only see discussions from several years ago. The doctor was pretty convinced it is not TN 2, based on my symptoms, which many people describe here - so I’m not sure if she just doesn’t really know much about TN, and its many different manifestations, and is offering an outdated Dx, or if she is actually on to something.
Just wanted to see if anyone else’s doctor suggested this as a possibility.
Thanks everyone!
If you are actually dealing with Hemicrania Continua, then you should get rapid relief from Indomethacin. If you respond to Indomethacin, then likely this is the source of your pain. If you don't respond to Indomethacin, then Trigeminal Neuropathic Pain (Atypical TN) is a better diagnosis.
See the NINDS fact sheet at http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm
Regards, Red
Thanks for your reply Red! I know this follow up is pretty old, but im wondering if the indomethacin could also provide ATN pain relief? The indo seems to work sometimes to keep pain at bay, but not 100% so I’m really questioning my neuro’s diagnosis.
Also, is there a difference between ATN and Atypical Facial Pain? My neuro insists that my pain (ATN exactly as described by most members here) is not TN at all because the pain is atypical and is therefore atypical facial pain. Is this just semantics or does it seem like she just isn’t all that knowledgeable about the different manifestations of TN? Sorry - not sure I’m making sense :).
Any insight would be so appreciated. Thanks all!
Amanda
I'm not a medical doctor, of course. But I can't recall a patient having told me that their Atypical TN was reliably relieved by Indomethecin. There is nothing to say that you can't have both at the same time, as Migraine is often said to be "co-morbid" with chronic neuropathic face pain in many people. So if Indomethicin helps you, it's possible that it's working most directly on a migraine component rather than on ATN itself.
Realizing that even professionals argue over the classifications for face pain, some years back the Medical Advisory Board of the US TN Association published a letter to TNA members in which they defined "Atypical Face Pain" as "facial pain of obscure origins" somewhat equivalent to "idiopathic facial pain" (another label which basically means "I'll be darned if I know what's going on here.") They also made clear to their membership that they regarded any association of Atypical Face Pain with psychogenic origins to be a medical error. That position contradicts information you may still find at some supposedly "authoritative" internet sites, which regard any pain which "crosses the midline of the face" to be atypical facial pain, and potentially emotional rather than neuropathic in origin.
Complicating all of this is the reality that one of the primary medications used in Atypical TN are the tri-cyclic antidepressant meds like Amitriptyline and Nortriptyline. The International Association for the Study of Pain explicitly recognizes the TCA meds as effective in many cases of facial neuropathic pain, when used off-label at lower doses than commonly prescribed for depression itself.
There are still some doctors who hold out for claiming a difference between Atypical Facial Pain and Atypical TN. Possibly one of the more useful questions to ask if you ever encounter this distinction is "what are the differences in treatments provided for these two diagnoses?" If there really aren't any (other than being referred for psych workup when somebody gets labeled with AFP), then I personally don't see a difference in the distinction. Realize, however, that there are licensed physicians who will claim quite the opposite.
For whatever little this may be worth, in the 19 years I've been talking with face pain patients, the trend I've observed has been toward regarding Atypical TN and "trigeminal neuropathic pain" as pretty much equivalent. If there are differences in treatment modalities for the two, I'm afraid I haven't seen them. Professionals might be able to refer you to papers I haven't seen, of course.
Regards and best,
Red Lawhern
I agree Red (hope that doesn't cause a stroke lol) BUT I have a slightly different read What sadly far to many "practitioners" fail to understand is there is a difference between the cart and the horse. and they don't know what either is. Psychogenic pain is as real as pain from cutting off your arm and fortunately pain specialists are realizing this ( I'm talking abot real pain specialists, not those running pill mills) There are as well some very clear physiological causes for psychogenic pain. I hate to get back into the whole sodium channel thing, but the fact is by treating how the body reacts to pain, we can often times control that pain.
We know for a fact that chronic pain patients develop worse pain over time even though the stimulus doesn't change. Who's the cart and whos the horse? There are developing therapies both pharmacological and psychological that are helping. Pain rehab is be coming a very real specialty. Psychogenic pain is NOT someone faking it or has it "all in their head" (not exactly the best phrase for TN when it is all in their head) Someone who approaches pain that way is someone to run far far away from. Someone willing to treat it as real pain and uses every tool at their disposal is someone to treasure.
Mod Support, given that you appear to accept the premise that chronic pain can be caused by psychological factors, I wonder what your opinion might be of a new diagnosis in the DSM-5: "Somatic Symptom Disorder" has supplanted "Psychogenic Pain Disorder" and combined several other former diagnoses from DSM-IV. To receive the new SSD diagnosis, it is no longer necessary for the patient to have unexplained medical symptoms (UMS).
Your thoughts?
Psychogenic factors. There is a difference. An interruption of the pain norepinephrine systems can manifest itself in multiple ways. Some personality disorders, depression, and chronic pain can all have the same cause, just manifested differently. Talk therapy has never been an answer for much of anything psychopharmacology is the new psychiatry.
As far as DSM V replacing DSM IV it is probably one of the best things that has happened in that rather unusual specialty in a long time. especially for Spectrum Disorder Kids. Lots more are getting treatment as they should have all along In regards to pain disorders the change in emphasis removes the mind-body separation implied in DSM-IV and encourages clinicians to make a comprehensive assessment and use clinical judgment rather than a check list that may arbitrarily disqualify many people who are suffering with both SSD and another medical diagnosis from getting the medical help they need. Its about time that the shrinks realize that chronic pain can cause psychological disorders and needs treatment before they ever start their voodoo. DSM-5 narrative text description that accompanies the criteria for SSD cautions that it is not appropriate to diagnose individuals with a mental disorder solely because a medical cause cannot be demonstrated
As I said in my earlier post any clinician who disqualifies a patient from treatment because of "Its in their head" is is way behind the times and one to avoid. Fortunately there are few of them left. You can not create pain without a physical cause. What kicks off the physical cause of anything is the one thing that totally eludes "medicine" Heck if we knew that, there would not be a single disease we could not cure. We might even be able to live for ever. Until then all that can be treated is what we see.
Thanks so much for your responses! This site has been so comforting and informative.