Talk:Trigeminal neuralgia/Archive 1

This is an archive of past discussions about Trigeminal neuralgia. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page.

Archive 1

Re: the Neurontin recall. Per Pfizer and the FDA, this was a recall of one lot of 100 mg capsules of Neurontin in 2005 and not a general recall of all Neurontin, which is still being prescribed. Unless someone has information to the contrary, this information should probably be corrected or removed. ~MD

I agree. I saw that and was quite surprised since I use Neurontin like many other people. It's still on the market. Karn 23:46, 21 March 2006 (UTC)

It says there is no cure, but then it says surgery is effective in 75% of cases. Doesn't that mean that surgery is a cure (though not a universal one)? The paragraph on homeopathy should probably get a NPOV warning stamp. Zargulon 10:57, 29 September 2006 (UTC)

I've put a "verification needed" on the homeopathy section; I am of the opinion that if nobody can cite a source it should be removed. Opinions anyone? PeteThePill 23:49, 1 October 2006 (UTC). The cause of TN is not known. IF the cause is not known how can there be a cure? Although surgery is effective I do not think it irrational to assume some/much is a simple placebo effect(I have TN myself - 8 teeth removed). So, I know the challenge to this thought. But it just that.

________________________________________________________

Not sure this is how to do it but here goes

Discussion always benefits from those who have suffered the disease and studied it widely.

Diagnosis section! We need one! I'll start one later tonight, or at least try, but if someone beats me to it, please make sure to note the following: A) MRI will not always show compression of the TN B) Somatic Sensory Evoked Potential Test will generally detect an abnormality of the TN nerve, when compared to the healthy nerve, unless you're facing a bilateral TN issue. I have the latency periods, I'll post them. C) Rule-out diagnosis D) Treatment diagnosis: Take carbamazepine, if symptoms decrease, TN is likely, assuming all other DXs are ruled out

Dr. Janetta & Co

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There really should be much more about Dr. Janetta, he has saved thousands if not tens of thousands of lives via his procedure, and through those who have learned of his procedure. I've only noted one reference to him. I've visited his clinic in Pittsburgh and spoken with him via email. He's an incredible person within the the TGN and his groundbreaking studies and teachings should be mentioned. Most people have no idea he's still avail. / or that he's mentored others to take over.

Your Symptoms Section- needs more info:

I am an a-typical TGN case. Like you stated in your article under Symptoms, a-typical TGN is so severe and the constant stabbing pain is similar to and often mistaken for migraines. I was misdiagnosed with migraines, later chronic daily headache with associated a-typical facial pain. I also sought treatment of a dentist(tooth was crowed twice), endodontis( root canal in the same tooth- which incidentally was the trigger for the full out assault by the TGN) and oral surgeon whom I had remove the tooth and nerves in hopes of ending the pain. It only got worse. I also had severe sinus complaints and saw one of the finest specialist in the nation with no luck. This too is a symptom. It is well documented (by just about any article you can read on google or Web MD that these are early warning symptoms and there needs to be some discussion added to assist the searcher in discovering the many ways TGN is masked and hard to diagnose. Links provided to any one of numerous articles on this very issue should be added.

When discussing the treatments I believe some of the following should be added:

I was diagnosed with a -typical TGN by Drs. Casey and Jannetta who were instrumental in pioneering the micro-vascular decompression surgery. I had a MVD June 14, 2005. I'm scheduled for a revision MVD in December 2006. If your article icluded links published articles regarding the treatments and their sucess rates readers would find articles written by Drs. Casey and Janneta stating that on average only 57% of A-typical TGN patients beneifit from a single surgical procedure. Further, that among the remaining 43%, the sypmtoms will reappear on the avg. of 1.9 years and require a second MVD with an expected post operative success rate then ranging between 87-95%. (By the way numbers vary widely as to both sets of stats and this needs addressed and linked)

Drug therapies need some further discussion:

Two of the more widely used drugs for TGN as mentioned in the article are Tegretol and Neurontin. There exist numerous articles via Google that while these drugs are very useful both as a diagnostic tool for TGN and for managing the disease, there can be severe side effects and liver toxcicity which often prevent their long term use and thereby lengthen the disease process before ultimately resulting in other treatments avenues. It would be helpful to dicuss this so that the reader would be informed of the side effects and carefully monitor his/herself thus reducing the time wasted by the he/she on these drugs before exploring other treatment avenues. Crossed referennced articles or PDR info relevant to tolerance, severe side effects and possible toxcicity, should be included in an effort to truley inform the reader.

Yes, I agree with the author. Tegretol and Neurontin liver toxcicity is a very large issue. I don't think enough credit was given to Klonopin & Oxycontin. Patients suffering from Atypical TN, who are without surgical recourse, are known to benefit highly from the combination of those two therapies.

re: ["are begging to be killed," this kind of words should not be used for any disorder] regarding Trigeminal Neuralgia

While perhaps this word choice is a little blunt for the taste of many it is indeed medically accurate. A recent patient commented after surgery "it's a good thing surgery was Monday because if it was not I would have been dead in a week". When exploring that further I discovered that the patient was fully prepared to commit suicide if relief was not found for the most recent attack.

Also medically accurate is the fact that this disorder/disease goes by the moniker "the suicide disease", I see that this was taken out as well. The pain of this thing is beyond the comprehension of many. I get the sense that the bias some people have with respect to suicide or near-suicide (perhaps from personal experience) is causing them to sanitize this article somewhat. That's not right.

This disease causes a type of nerve pain that is untouched by regular pain killers. Effective treatment is a very VERY recent thing, good neuroleptics have not been around that long. In the somewhat recent past people did one of two things when afflicted with this disease. They killed themselves outright or they killed themselves more slowly by drinking. Alcohol was probably the only thing readily at hand that would suppress the nervous system enough and cause some temporary pain relief.

So, yes, people with this disease do in fact "beg to be killed" and they really mean it. It's truth. It's not "oh I had a bad day kill me now" type sarcastic thing. And of course, don't think I mean to say you should do it. Surgical treatment options are very good now, and getting better.Greploco (talk) 18:15, 16 May 2008 (UTC) —Preceding unsigned comment added by Greploco (talk • contribs) 18:09, 16 May 2008 (UTC)

re: ""are begging to be killed": I think this is a very telling quotation and it has its place in this article. There are some conditions the pain of which is outside most ordinary experience, and this can be one of them. A good case could be made, perhaps, for not beginning the section with it, although it does not worry me there. And yes, the relationship between trigeminal neuralgia and suicide ought to be included.

Ondewelle (talk) 16:31, 11 November 2008 (UTC)

RE: "are begging to be killed": I think it's an accurate quote as well. It's a very shocking quote to read, and I think it could be stated in a different manner. Personally, I think a stronger statement can be made in via different language. "Are begging to be killed," is somewhat weak. Perhaps, something along the lines of "A large majority of patients consider ending their own lives, due to the intractable pain of TN, if they are not able to find treatment through surgical or medicinal means." Sadly and either way, I think we all can agree that suicide and TN run hand in hand and this is general knowledge throughout the TN community. Please let it remain, in some form.

I find the entire article rather "soft sells" the condition. I have it. My neurologists have told me 30% or 40% of patients arrest or stoke out. 10% of the time they take their own life. I can't think of why several doctors should overstate the condition to me. 30 % to 40% of patients DO NOT STROKE OUT! But, I'd imagine far higher than 10% of patients take their own life. I have it as well, a typical. I've had it since I was 24. Hang tough buddy...

To read this article one would think Trigeminal Neuralgia in simply an uncomfortable problem that can mess up your social life from time to time. It's a timid and at times contradictory article and is in need of severe revision. SG I agree with this. Though, I had a friend who just started having TN pain. With regret I sent him to this page. It would be very frightening for those who read this page to think that there is no hope. There is hope, sometimes, but I agree TN is FAR more than an uncomfortable "problem." It will most certainly kill you, if it is not largely controlled, via suicide.

I agree that in places the article doesn't quite give the full measure of the condition. It discusses the social and (by implication) the work-related problems that can occur, but the issue of suicide also needs to be mentioned. Ondewelle (talk) 16:31, 11 November 2008 (UTC)

COME ON ALL! Let's really get this article in shape! It's very dated, IMHO! There is no mention of the various support groups that are floating around, or of experimental techniques. We can do better and we'd all benefit from more knowledge. Eric A.

Gronseth G, Cruccu G, Alksne J; et al. (2008). "Practice parameter: the diagnostic evaluation and treatment of trigeminal neuralgia (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the European Federation of Neurological Societies" (15): 1183–90. doi:10.1212/01.wnl.0000326598.83183.04. {{cite journal}}: Cite journal requires |journal= (help); Explicit use of et al. in: |author= (help); Unknown parameter |month= ignored (help)CS1 maint: multiple names: authors list (link)--Doc James (talk) 23:15, 10 December 2008 (UTC)

regarding home treatments: cold treatments, hot packs, special diets, and various alternative treatments all have anecdotal evidence (i.e. some patients report these therapies help), but no scientific evidence of success in a large proportion of patients. As a sufferer of trigeminal neuralgia, I know I have tried almost everything under the sun to relieve my pain...but also know that chasing after a quick cure that is most likely useless is a) frustrating, and b) misleading, because others in my social circle think that I can somehow treat this pain and I must be suffering only because I am too lazy to follow the macrobiotic diet, etc. As a scientist, I know that there are forums for patients to share their tips and the appropriate role of an encyclopedia is to report facts. —Preceding unsigned comment added by Paitah (talk • contribs) 20:27, 4 March 2009 (UTC)

74.75.249.102 01:16, 3 October 2007 (UTC)nhhgrace@aol.com

If you read up on this you will see that TN can by nature be hereditary. TN is often attributed to damage to the trigeminal nerve from overlying blood vessels. The location of these blood vessels can be genetically derived. Simply put. Other trigeminal problems can be caused by nerve trauma from external forces. [[[User:Xiinteractive|Xiinteractive]] (talk) 04:33, 5 February 2008 (UTC)}

Current research studies are underway to evaluate heritability of TN. There are several reports of familial clustering, but the majority of TN cases have no affected relative. This suggests that some risk (such as inherited structural features) may be attributed to genetics, but not all. —Preceding unsigned comment added by Paitah (talk • contribs) 20:29, 4 March 2009 (UTC)

My TN is not dental nor is any other TN by definition. While it's often misdiagnosed as a dental problem, I really don't feel it should fall under the class of 'dental' articles.--Asams10 03:50, 30 August 2007 (UTC)

Because it is a condition of the head and neck, it is always in oral pathology textbooks dentists read. Also, it involves one of the most important nerves for a dentist- the trigeminal nerve. - Dozenist talk 10:39, 30 August 2007 (UTC)

That makes it a medical article more than a dental article. That's like listing lawn care as a golf article because golfers need to know about it.--Asams10 11:05, 30 August 2007 (UTC)

I am not completely certain about your analogy, but trigeminal neuralgia would be a considered differential diagnosis for a patient coming in with pain of unknown origin. Although the initial treatment would be medical, the closeness to anatomic structures which dentists work with all the time makes it relevant to dentistry, I would say. All that said, I believe this article could also be placed within the scope of WikiProject Medicine as the projects are clearly not mutually exclusive. - Dozenist talk 22:46, 30 August 2007 (UTC)

I guess I'm at a loss. You don't go to a Dentist to TREAT this, though a dentist might refer you to a GP or Neurologist if you ask them about the pain. Yeah, dentists need to be trained but it's a non-dental nerve disorder.--Asams10 03:05, 31 August 2007 (UTC)

Well, from the point of view of dentistry, I am trying to say that the disorder is very relevant. And, if I understand you correctly, I agree with you that the article falls under the scope of WikiProject Medicine as well. - Dozenist talk 10:30, 31 August 2007 (UTC)

Okay, I'm sure I'm not getting through to you. I believe any relationship Trigeminal Neuralgia has to dentistry is trivial and that this article should be listed under the purview of a medical article cross-referenced to Dentistry only in as much as any other of these MEDICAL disorders are taught to DDS's. Is that clear enough? I'm saying to remove the dentistry tag and tag it under medical conditions.--Asams10 11:46, 31 August 2007 (UTC)

As much as I'm sure that Dozenist appreciates being patronised, I'm also fairly sure that you are not qualified to make any assessment of where this article belongs. As you are so fond of the trivial relationship that dentistry has to TN, trigeminal neuralgia is diagnosed more often by dentists than any other branch of medicine, despite the possibility of onward referral. I consider myself, as a dentist, qualified to treat TN even though a neurologist or oral medicine/surgery specialist would definetely do a better job. I assisted in the treatment of double figures in number of cases of TN as an UNDERGRAD dental student. Also two of the three branches of the trigeminal nerve are concerned almost solely with innervation of the oral cavity and perioral tissues. Thirdly, dentistry is a branch of medicine that is concerned with treatment of disorders of the oral, perioral and head and neck tissues. Having said all of that, this could fall under the medicine category AS WELL AS the dentistry category. I feel this is possibly a moot point, definetely a trivial one.Dr-G - Illigetimi non carborundum est. 19:36, 31 August 2007 (UTC)

Thanks for your input. Put very well. I completely understand the turf wars that Dentists and Doctors fight over such things and you're, indeed, technically correct.--Asams10 03:34, 1 September 2007 (UTC)

If I can chime in here, I am one who has this disease. I can tell you that I had great dental pain but the dentist cant treat it. My GP recognized what it was and because my current neurologist was not accurately diagnosing me, he told me to stop seeing this neurologist. The GP got me off of the meds the neurologist had me on that were making me sick and not treating my conditions (migraines + cluster headaches + trigeminal neuralgia following a severe blow to the head in a motorcycle wreck). My GP put me on different meds that were effective in treating me and he sent me to different neurologists until we found one that diagnosed me correctly and treated me effectively. I am now progressing well. I can tell you that this is a terrible disease to have and its not about the turf wars of doctors and dentists, its about you guys serving the people that use WIKI to get help - people like me. So you need to look yourself in the mirror and ask if you can treat the disease and if you are qualified.

Now, there is great dental pain and dentists should be aware. I can describe mine - imagine a filling being drilled or a root canal being done without anesthetics... now for me, I would get that pain in all the molars in the upper right jaw at one time. Or my front teeth - they were doing an electrical shock thing, like I had bitten into a live wire (really very bad shock!) (excellent description. I felt as if I was chewing on a battery or a live wire as well. I agree with your comments here. They're well phrased.) and it went up thru my front teeth my nose and into my eyes - terrible pain. The lower is similar. So I get the dental implications.

But the dentist cant treat it - he just needs to know about it so that he doesn't try to "fix it" with dentistry. He needs to see the signs and refer the patient back to his GP/neurologist. This is no different than a GP treating a person with headaches, seeing that his teeth are excessively worn and saying, "You might want to talk to your dentist about that because you could be grinding your teeth at night and that could be causing the headaches." The patient might need a mouthguard - that is a dentist issue.

Therefore I totally agree with Asams10 that the TN article has little if anything to do with dentistry. It is a medical issue. I live with this so it is not a textbook thing for me. I am a life experience expert. [[[User:Xiinteractive|Xiinteractive]] (talk) 04:24, 5 February 2008 (UTC)}

Let me chime in as an epidemiologist and patient: The majority of patients with TN will see a dentist at some point in the diagnostic process. Ruling out TMJ for patients with affected lower branches is an important part of the diagnostic process.

Now, for one point that hasn't come up in these discussions: every TN patient will, at times, need dental care. This is a major challenge, because a process as simply as a tooth cleaning can trigger intense pain. —Preceding unsigned comment added by Paitah (talk • contribs) 20:34, 4 March 2009 (UTC)

Sportscaster Walter "Red" Barber (1908-1992) devotes an entire chapter of his autobiography Rhubarb in the Catbird Seat (Garden City, NY: Doubleday, 1968) to his experiences as a young man with the condition, which he believed to have been caused by abscessed teeth. 76.195.221.83 (talk) 17:53, 31 August 2009 (UTC)

The article does not address the severity of this disorder. We don't call this "The Suicide Disease" for no reason. Some 30% to 40% of patents have a heart attack or stroke out. Gingermint (talk) 04:34, 20 October 2009 (UTC)

Agreed, whomever continues to edit the article, is taking away from the seriousness of this diseases, injury, affliction. Many sufferers find little relief even after surgery, or have atypical variants of TGN which contradict a surgical approach. Calling TGN a "Suicide Disease" is accurate based upon the high degree of sufferers who take their own lives, after exhausting the treatments available to them. This is a well known phenomenon within the TGN community. A justification for its removal is needed, or it should be placed back within the article, in a prominent location. Unfortunately many physicians, including the vast majority of support physicians such as psychiatrists, and family practitioners rely upon Wikipedia for medical advice. I have personally directed many of my physicians to this very article, which allows them to receive accurate and up to date information on TGN from the point of view of a sufferer. While there are many physicians who have participated on this article, and I thank them for doing so, I feel that many of them are downplaying the sheer destructiveness of TGN on the life of an individual who is unlucky enough to be effected by its symptoms. Therefore, the moniker of TGN being known as "The Suicide Disease" has a rightful place within the article. TGN is also one of the rare non-terminal diseases that qualifies for assisted suicides, within many such organizations both in the United States and in other countries. To omit the phrase is illogical and is based upon emotion, rather than up-to-date fact. I intend to reinsert it, shortly. Prior to removing it (yet again), please specifically identify, in a factual and methodical manner, how the above information is incorrect or inaccurate. Removing the "line" from this article is akin to removing the low survivability rates from articles about pancreatic cancer. It's unfair to those who suffer from this disease, many of whom will take years to find proper treatment, and who will use Wikipedia as a primary source of information, before moving onto more advanced concepts within the treatment protocols of TGN. Eric A. —Preceding unsigned comment added by 67.170.193.16 (talk) 16:03, 3 December 2009 (UTC)

Many of the comments above state that the condition is "known as the suicide disease"; the article itself states (with no citation) that the degree of pain leads to heart attacks or strokes. Editors must remain aware of the Wikipedia policies on original research and verifiability. "My dentist said" is not a reliable source unless your dentist's statement is in a peer-reviewed document. "I was two days from killing myself" is original research unless the case is written up in a reputable journal. Please also be aware that WP is explicitly not a source of medical advice. Statements made must be sourced, not anecdotal. No-one is downplaying the severity of the pain TN sufferers go through, but WP cannot make unreferenced statements. Nor is WP the basis of a support group. 81.129.207.193 (talk) 00:46, 11 December 2009 (UTC)Tonywalton ^Talk 00:48, 11 December 2009 (UTC)

For Wikipedia in general, the criteria for inclusion is that the material is supported by reliable, third-party, sources, so anyone can check it easily. From Wikipedia:Verifiability

"The threshold for inclusion in Wikipedia is verifiability, not truth. That is, whether readers can check that material in Wikipedia has already been published by a reliable source, not whether editors think it is true."

What's a reliable source is covered in Wikipedia:Identifying reliable sources and in particular Wikipedia:Identifying reliable sources (medicine).

So please try to find such sources before putting the Laser Med Center paragraphs back. Otherwise they are probably not suitable for Wikipedia. LouScheffer (talk) 14:15, 9 December 2010 (UTC)

FYI, not sure if worth including in article but marijuana is known to relieve TN attacks.

My use of medical marijuana, as a complimentary/replacement treatment for traditional medications, has been of benefit words cannot express. Daily use has significantly reduced both the number and, when less often attacks do occur, the severity of attacks are greatly reduced -- painful yes, but no longer like simultaneous, never ending, root canals without anesthesia. Additionally, the associated severe and constant migraines are all but gone.

I've never experienced any kind of relief from this. I don't know anyone else who has, either. It may be that your condition is being exacerbated by stress, and the marijuana is helping you relax? One other factor, it may be allowing you to consume more calories, in turn balancing your electrolytes. I can't think of a mechanism in which it's actually helping your nerve pain, but if it is, keep it up! My point, I'm not sure it's helpful, maybe you can enter in, at the bottom, by the celiac disease connection, which I added a few years ago. Hang tough friend. E.A.

At least in the state I reside, TN is an acknowledged condition and physicians can "recommend" the use of medical marijuana as a treatment. Due to federal laws, they cannot prescribe. —Preceding unsigned comment added by TotalBalance (talk • contribs) 04:57, 5 May 2009 (UTC)

Medical marijuana doesn't help my TN, but it does make me hungry enough, that it makes the difference in my wanting to eat something vs. not feeling like eating due to the pain. I vaporize the marijuana to reduce approximately 90% of the harmful chemicals associated with smoking. Once the marijuana takes effect, the smell of food and having the munchies will push me to eat. So I'll take a small bite of food, wait about five minutes for the pain to subside, then take another bite of food, etc. It may take me an hour to eat, and I usually can't finish a whole meal, but without the medical marijuana, I simply don't feel like eating. With the marijuana I at least get some nourishment. —Preceding unsigned comment added by 184.189.242.10 (talk) 16:45, 8 January 2011 (UTC)

"The settled scientific consensus is that craniosacral therapy is pseudoscience, and its practice quackery." I'd like to see that specious claim removed. I'd also like to see a specific citation for the acupuncture claim. — Preceding unsigned comment added by 71.236.254.210 (talk) 23:11, 21 February 2013 (UTC)

I agree that acupuncture and craniosacral therapy don't belong in this article without a source that satisfies WP:MEDRS; I've removed them. Huon (talk) 00:28, 22 February 2013 (UTC)

13.11 Persistent idiopathic facial pain (PIFP) Previously used term: Atypical facial pain. Description: Persistent facial and/or oral pain, with varying presentations but recurring daily for more than 2 hours per day over more than 3 months, in the absence of clinical neurological deficit. Diagnostic criteria: A. Facial and/or oral pain fulfilling criteria B and C B. Recurring daily for >2 hours per day for >3 months C. Pain has both of the following characteristics: 1. poorly localized, and not following the distribution of a peripheral nerve 2. dull, aching or nagging quality D. Clinical neurological examination is normal E. A dental cause has been excluded by appropriate investigations F. Not better accounted for by another ICHD-3 diagnosis. Comments: A wide variety of words are used to describe the character of 13.11 Persistent idiopathic facial pain (PIFP) but it is most often depicted as dull, nagging or aching. It can have sharp exacerbations, and is aggravated by stress. Pain may be described as either deep or superficial. With time, it may spread to a wider area of the craniocervical region. 13.11 Persistent idiopathic facial pain (PIFP) may be comorbid with other pain conditions such as chronic widespread pain and irritable bowel syndrome. In addition, it presents with high levels of psychiatric comorbidity and psychosocial disability. A continuum seems to exist from 13.11 Persistent idiopathic facial pain (PIFP) induced by insignificant trauma to 13.1.2.3 Painful post-traumatic trigeminal neuropathy caused obviously by significant insult to the peripheral nerves. 13.11 Persistent idiopathic facial pain (PIFP) may originate from a minor operation or injury to the face, maxillae, teeth or gums but persist after healing of the initial noxious event and without any demonstrable local cause. However, psychophysical or neurophysiological tests may demonstrate sensory abnormalities. The term atypical odontalgia has been applied to a continuous pain in one or more teeth or in a tooth socket after extraction, in the absence of any usual dental cause. This is thought to be a subform of 13.11 Persistent idiopathic facial pain (PIFP), although it is more localized, the mean age at onset is younger and genders are more balanced. Based on the history of trauma, atypical odontalgia may also be a subform of 13.1.2.3 Painful post-traumatic trigeminal neuropathy. These subforms, if they exist, have not been sufficiently studied to propose diagnostic criteria.

Are all the persons in this section notable to list? Should we scrap the whole list? Thoughts? Lesion (talk) 17:05, 28 November 2013 (UTC)

I removed an unreferenced item, although I think it was an interesting case of how a public figure copes with it. I'm also a little concerned about including a statement about a living person's medical conditions that actually says that he doesn't want to talk about it in public. That seems like an unnecessary invasion of his privacy.

Usually, what we're looking for in a list like this is something that is relevant to history (e.g., the first person diagnosed? A really famous, long-dead person who had it?) or to the modern state of the disease (e.g., a researcher who has the disease s/he is trying to cure, an activist, a person who founded a large charity to support patients). More or less random examples of people who happen to have the disease aren't good candidates. Jefferson Davis obviously fits into the first category.

The Indian actor might also be a good choice, because it explains how it affects his work, rather than baldly stating, "He had it. He had this treatment. It worked/didn't work." Also, like most editors, I think it's desirable to have more than just white men given as examples of a condition that affects people around the world, so including the Indian actor helps present a more balanced and more global perspective of the condition. WhatamIdoing (talk) 20:09, 28 November 2013 (UTC)

This issue also raised here: [1]. Another editor has now cut this section down a bit more in this edit: [2]

Should we seek some kind of new standard for future notable cases? Per WAID's comment above, suggest Jefferson Davis and Salman Khan might be potentially notable. I would also think about including Asaram Bapu, since needing to sit inside a glass cabin during talks is an interesting anecdote about how people have tried to control this condition. On the other hand, it might just be a "gimmick", I know nothing about this case. Lesion (talk) 20:19, 12 December 2013 (UTC)

No prejudice to returning some of these cases; my personal bias is that we shouldn't have just random list of blue linked people with diseases, but have cases where that person's disease either had significant attention (besides passing mention in some newspaper article) or otherwise raised awareness of the disease. Yobol (talk) 20:38, 12 December 2013 (UTC)

@Majorusman: in this edit: [3] aded the following content:

It can be controlled a little bit by taking steam of turmeric powder by pouring one table spoon in one cup of boiling water. And inhailing it through nose. Because turmeric powder contains anti analgesic contents thus it helps in redusing the swelling of that particular nerve part.^[1]

I have reverted for the following reasons:

- please provide more info regarding the source. Is this a book? A scientific paper? All medical content on wikipedia should be supported by a WP:MEDRS source... i.e. medical textbooks and review publications in peer review journals...

- I am not confident to say that tumeric is a medicine, or that it is is the most commonly used treatment for TN, which is what we are suggesting by placing this content at the top of the treatment section. Thank you, Lesion (talk) 19:03, 27 December 2013 (UTC)

An editor called "Major usman" with 1 edit sources that edit as <ref> Muhammad Usman Mazhar </ref>. I'm pretty sure you did the right thing from a sourcing point-of-view. If you're considering the possibility that tumeric may be used to treat TN, then it's worth noting that a PubMed search for "Trigeminal neuralgia tumeric" returns 0 results. --RexxS (talk) 20:17, 27 December 2013 (UTC)

Well when you put it like that ... OK agree =D. Thanks for running the pubmed search. Lesion (talk) 01:52, 28 December 2013 (UTC)

Per WP:ELNO, should the wikipedia article supply this surgeon's personal website as an EL?

• [4]

Superficially, it appears a bit self-promotional, however there is no overt patient recruitment. I do worry that it is focused to much on surgical management. The site is in a "patient FAQ" format, and the responses are unreferenced. I will await other opinions about this link. Lesion (talk) 22:26, 18 December 2013 (UTC)

WP:ELNO number 1: "Any site that does not provide a unique resource beyond what the article would contain if it became a featured article." would seem to rule it out. It doesn't seem to offer much use as a reference either as it's at best an expert opinion. I'd be tempted to just get rid of it and spend the time looking for any newer secondary sources to supplement PMID 19303114 and PMID 19326987, both from 2009 - still current, but there may be new perspectives that have been documented by now. --RexxS (talk) 20:06, 27 December 2013 (UTC)

Have updated with DMOZ. Doc James (talk · contribs · email) (if I write on your page reply on mine) 02:07, 28 December 2013 (UTC)

OK thanks for the opinions. I see James you have also removed the other EL. I was just about to ask your opinion on this while you were here, but you beat me to it. Lesion (talk) 02:13, 28 December 2013 (UTC)

Hello my father has been diagnosed with trigeminal neuralgia on one side of his face he was prescribed with a couple of different types of medication with very short term relief. He was contemplating suicide when he mentioned to me that the antiseptic lozengers helped with the pain in his mouth and jaw so while I was at the shop getting him some more lozengers I decided to purchase a tube of bonjela numbing gel to see if that had any type of relief for him. He was willing to try anything. After applying the bonjela he had instant relief and has gotten him through some intense attacks. Please be aware that this is not a long term fix and that medical attention is required to fix trigeminal neuralgia but bonjela has been the major difference between my father wanting to kill himself and him being around long enough to see a specialist to get TN fixed.

If there is anyone out there who has been diagnosed with Trigeminal Neuralgia I strongly recommend getting some Bonjela it could save your life.

123.2.79.241 (talk) 12:54, 5 June 2013 (UTC)

Thanks for comment. Talk pages are specifically for discussion as to how of the article might be improved, we shouldn't discuss the topic of the article in general terms here. There are many other places on the internet where general discussion of topics is encouraged, forums etc. This means that it would have been better to phrase your comment something like this (I'll leave for anyone who wants to edit this article in future):

"I see no mention in the current article of topical analgesic medications (e.g. bongella). I have personal experience that this may be of benefit in trigeminal neuralgia, and was wondering if there is any scientific evidence of this. If there is, then maybe it would be good to add to the treatment section."

Summary: use talk pages to discuss improvements to the article. For more info, see Wikipedia:Talk page guidelines. Thanks, Lesion (talk) 18:17, 5 June 2013 (UTC)

MY RELATIVE HAD SURGERY FOR Trigeminal neuralgia IN HIS INVOICE HOSPITAL MENTION ONE INSRTUMENT " DRORA FAM CODUMEN " WHAT IS THIS AND WHAT IS ITS PRICE IN INDIA IF ANY ONE KNOWS PL MAIL ME ON darshandesai73@yahoo.com — Preceding unsigned comment added by 117.232.210.152 (talk) 17:17, 19 October 2013 (UTC)

I think it would be useful to add some information about historical treatments for the condition. For example, in an 1880 review the use of salicin was described (as well as opiates, marijuana, henbane ... and for that matter arsenic. [I didn't say 1880s medicine was necessarily advisable]) Salicin is the drug from willow bark that subsequently was replaced by synthetic salicylic acid and aspirin (although the latter cause gastrointestinal fatalities, they are cheaper). And, salicylic acid is the active painkilling ingredient in Bonjela. Although people have been using willow bark and beaver testicles to treat toothaches and other pains since time immemorial (literally), the question of how topically applied salicylic acid gets to the local source of the pain is an interesting and important one. Wnt (talk) 05:28, 12 January 2014 (UTC)

I have had Trigeminal Neuralgia (TN/TN1) and Atypical Trigeminal Neuralgia (ATN/TN2) for over 27 years now. They are and always have been linked together. Atypical Trigeminal Neuralgia is not the same as Atypical Facial Pain. I was seeing the term "Suicide Disease" back in 1995. — Preceding unsigned comment added by 24.93.250.201 (talk) 09:33, 5 February 2014 (UTC)

Last week I found the edit that introduced the term to this article. It was 2004, I think. When I looked for the term in Google Books and Google Scholar, I couldn't find anything before 2007, and a lot of those sounded like they had lifted the term from Wikipedia.

Is there a reliable source from before 2004 that discusses or uses the term in relation to trigeminal neuralgia? --Anthonyhcole (talk · contribs · email) 16:56, 10 January 2014 (UTC)

I am confident that there are rare reports that TN patients commit suicide. The Qs here are (1) whether this is so uncommon as to be not notable for the article and (2) whether TN is commonly referred to as suicide disease for us to mention it. (See also Talk:Cluster headache#"Suicide" headache, a similar issue). I'll quickly search for some sources about suicide in TN. Lesion (talk) 17:00, 10 January 2014 (UTC)

Neither IHS or IASP classifications mention suicide ([5], [6]) but does for post herpetic neuralgia. This source speficically uses the term "suicide disease" Adams, H (2011 May). "Harvey Cushing's case series of trigeminal neuralgia at the Johns Hopkins Hospital: a surgeon's quest to advance the treatment of the 'suicide disease'". Acta neurochirurgica. 153 (5): 1043–50. PMID 21409517. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help) although it seems to be a historical piece. Lesion (talk) 17:14, 10 January 2014 (UTC)

To clarify: It appears this Wikipedia article coined the term "suicide disease" for this condition, and it has since been adopted by patients and some researchers. There were complaints on this talk page that no reliable sources supported the neologism, but (mostly patient, I think) editors insisted on it staying in the article. Now reliable sources are starting to use the term. All we need now is for someone to use one of these reliable sources to support the neologism and we've completed the wikitruth cycle. --Anthonyhcole (talk · contribs · email) 05:34, 11 January 2014 (UTC)

A diff is not in itself proof of this process. Given use of the term in Adams 2011. a historic piece, it may well be that the term predates even the internet (Said I, potentially completing the wikitruth cycle). Some TN patients do kill themselves, but I am not sure about this term. Will look further. Lesion (talk) 05:56, 11 January 2014 (UTC)

Sorry, I don't think I can access that Adams article. Can you? Does Adams say people used the term for TN before 2004? --Anthonyhcole (talk · contribs · email) 06:08, 11 January 2014 (UTC)

(I'm paywalled out too. Requested [7]) Lesion (talk) 06:25, 11 January 2014 (UTC)

I found the term from the 1997." I don't know the origin, but it predates Wikipedia.Novangelis (talk) 06:15, 11 January 2014 (UTC)

I just found that, too. I wonder why it didn't show up last week. Oh well. It seems to have been out there before it was mentioned here. --Anthonyhcole (talk · contribs · email) 06:19, 11 January 2014 (UTC)

It may be even older... Lesion (talk) 06:24, 11 January 2014 (UTC)

Yes. I've just found this textbook which says, "Historically before the advent of adequate pharmacological and surgical management, TN was called the 'suicide disease' by the press". So. Confirmed. Sorry for the false alarm. --Anthonyhcole (talk · contribs · email) 06:31, 11 January 2014 (UTC)

It seems that (at least almost in this case), Wikipedia not only has the power to make untruths true, but also to make truths false. Lesion (talk) 13:53, 11 January 2014 (UTC)

I didn't follow that, but would very much like to. Can you elaborate? --Anthonyhcole (talk · contribs · email) 15:54, 11 January 2014 (UTC)

Didn't really make any sense, sorry. The aforementioned "Wikitruth" cycle, which I understand refers to the phenomena whereby unsourced, original thought is placed on Wikipedia and is then reproduced by formal researchers who assume that since something is on Wikipedia then there is another source other than Wikipedia, and also fail to cite Wikipedia as their source. Meanwhile, a Wiki editor smacks a citation needed tag on the unsupported content, and perhaps sometime later another editor searches for sources, and immediately finds the source which took the content from Wikipedia, and uses it to support the original content on Wikipedia. This is "making untruths true".

What almost happened here, is that we thought a term had been coined on Wiki, and then taken by researchers from Wiki. However, as evidenced this term was not coined by Wiki. Had we removed it, given the apparent influence Wikipedia has on formal researchers, you have to ponder whether the term would have died out in time directly because it had been removed from here. This is "making truths false". Lesion (talk) 16:07, 11 January 2014 (UTC)

Yes, that's what I mean. I'm on the lookout for an instance of that so there might have been a bit of confirmation bias at play here. User:Wnt found Glucojasinogen, which deserves to be at least a redirect in my opinion. A fictitious medical condition affecting a fictitious nerve appeared in three subcontinental journal articles from two different authors, and they were the invention of a Wikipedia editor, but the Wikipedia article never cited any of those journal articles as reliable sources. And I haven't seen an actual case of the closed loop yet. --Anthonyhcole (talk · contribs · email) 17:11, 11 January 2014 (UTC)

user:Doc James has posted on WTMED a number of times about external sources taking content from wikipedia, although usually this was pointing out that they had not given correct attribution, but I think once there was mention on WTMED about this phenonmenon. Not sure if he knows of any other examples of the "wikitruth cycle". Lesion (talk) 17:19, 11 January 2014 (UTC)

Yes, plagiarism will happen. Another good reason to make Wikipedia a reliable source. =) I just saw this edit summary on my watchlist: "I teach first and second year med students, and at least a substantial fraction of them use Wikipedia in their studies."[8]. Another good reason. --Anthonyhcole (talk · contribs · email) 17:35, 11 January 2014 (UTC)

Sometimes a trivial line can be amplified in the literature. This phenomenon is not exclusive to Wikipedia: Stephen Jay Gould observed this in ["The case of the Creeping Fox Terrier Clone". Novangelis (talk) 18:13, 11 January 2014 (UTC)

I saw this on my notifications, so I'll just comment briefly: the dividing line with "wikitruth" cycles is the reliable source. Once a "good" source uses a concept, we don't have to trouble ourselves where it came from. In the case of 'glucojasinogen', there were two entries indexed in PubMed in very obscure journals which quoted the line word for word - if just the word had been taken, it might take some hashing it out on RSN to decide if they were good sources, but pretty much by definition reliable sources don't plagiarize Wikipedia. :) But if, God forbid, someone had used the term in a journal of reasonable quality, we'd have had to acknowledge its existence. Really though, there are many fads that occur purely in the scientific literature - for example generalized health assertions about antioxidants. (It was always a freshman-level mistake to think that all antioxidants would be good, the same as thinking that about acids, bases, proteins, or lipids) Even if we don't like it, Wikipedia isn't here to "right the wrong", just to report the literature. The only legitimate way for us to express our POV about a fad then is to watch closely for reliable sources that express what we believe and ensure that the article is updated in a timely fashion. Wnt (talk) 18:29, 11 January 2014 (UTC)

I agree. With all of that, I think. If the suspicions that prompted me to start this thread had meterialised - that is, if it turned out we had coined this emotive name for the illness - I would have supported its continued use in the article. It wouldn't matter where the term came from, provided it's demonstrably gained a significant degree of acceptance. --Anthonyhcole (talk · contribs · email) 20:25, 11 January 2014 (UTC)

This article currently states: "Historically TN has been called "suicide disease" due to Dr. Harvey Cushing's 0.6% mortality rates involving 123 cases of TN during 1896 and 1912." yet one suicide in 123 cases is >0.8%. One of the two cited links is not immediately available, and the other does not contain those numbers. 37.191.195.37 (talk) 23:09, 31 August 2014 (UTC)

The sources that are being used to support material suggesting gallium maltolate as a treatment of TN is being sourced to non-MEDRS compliant sourcing, including case reports, and now an encyclopedia entry written by the person who holds the patent for it. I do not think this material should remain in the article. Yobol (talk) 18:54, 18 November 2014 (UTC)

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"Opioids are generally ineffective in TN1, due to unpredictable and dramatic shocks. For patients suffering in the atypical form (ATN), opioids can be used to inhibit the transmission of pain signals in the spinal nerves to control the constant burning pain. This may represent the only viable medical option which preserves quality of life and personal functioning.^[2][3][4]"

User:Cristiandeidaho Which refs support which parts of this? Doc James (talk · contribs · email) 19:00, 11 November 2016 (UTC)

The NIH in 2015 supports "but opioids are not usually effective in the typical form" so not sure why you removed. Doc James (talk · contribs · email) 19:01, 11 November 2016 (UTC)

We had "As a result, there are many advocacy groups."

There is the suggestion to replace this with "As a result, there exists a wealth of support groups for Trigeminal Neuralgia, sufferers and carers, the largest of which is the Trigeminal Neuralgia Association (TNA) which exists in several different countries, including the UK (TNA UK), Australia and America (TNA - Facial Pain Association)"

People's thoughts? IMO we need independent sources and we do not link directly like that within article text. Also the accounts involved are associated with the charities in question. Doc James (talk · contribs · email) 18:21, 11 December 2016 (UTC)

Providing those reading the Trigeminal Neuralgia Wikipedia article with further reading and direction to external sites which allows further education, patient support and access for clinicians who frequently use Wikipedia to sufficient healthcare planning tools should be acceptable. These remain independent sources, plus the links factually back up the information provided within the body of TN article text. Numerous specialists in the field have agreed that dissemination of this information is essential. I am seeking to gain consensus from the Wikipedia community to include the original edits I made in November 2015 which included links to the TNA UK, TNA Australia and FPA (North America) non profit organisation links for this purpose.

--RCov 18:23, 11 December 2016 (UTC)RCoveney, Professor Zakrzewska and Co.

we don't Wikipedia:Advocacy(as Doc James pointed out)--Ozzie10aaaa (talk) 21:06, 11 December 2016 (UTC)

I see nothing wrong with stating the support networks available. Seems factual. — Preceding unsigned comment added by 86.147.52.42 (talk) 15:17, 15 December 2016 (UTC)

the point is it lends to not having a proportionate representation of the state of human knowledge (w/ regards to article)--Ozzie10aaaa (talk) 11:28, 16 December 2016 (UTC)

There is a lot of anecdotal evidence from sufferers who find some help from medical cannabis. For example:

• Alison Myrden – Together we will make a difference! Canadian activist, and longtime sufferer due to trigeminal neuralgia.

Need some medical references. Also, some states in the USA allow medical marijuana to be used for trigeminal neuralgia. Need references for that, too. I, and others, can add a few on the talk page. Others can decide what to use in the article. I don't have the time for that. But I sometimes find time to look for references.

• Google search: trigeminal neuralgia medical marijuana. A place to start.
• Therapeutic potential of cannabinoids in trigeminal neuralgia. - PubMed - NCBI.
• Tic Douloureux and cannabis studies completed. Several studies are linked.
• Using Marijuana to Overcome Face Pain - The People's Pharmacy. A couple studies are linked.
• Review. Cannabinoid CB2 receptors: a therapeutic target for the treatment of inflammatory and neuropathic pain. Doesn't specifically mention trigeminal neuralgia.
• Neuropathy Research | Medical Marijuana Inc. Many studies are discussed. States that allow marijuana to be used for neuropathic pain are listed.

--Timeshifter (talk) 09:51, 16 February 2017 (UTC)

The review from 2004 you mention is tentative."Currently there is growing amount of evidence to suggest that the psychoactive ingredient in cannabis and individual cannabinoids may be effective in alleviating neuropathic pain and hyperalgesia". No newer reviews on the topic. Doc James (talk · contribs · email) 11:33, 16 February 2017 (UTC)

Can you link to the review? I don't know what you are referring to. --Timeshifter (talk) 07:40, 17 February 2017 (UTC)

[9] Doc James (talk · contribs · email) 08:53, 18 February 2017 (UTC)

OK. This one:

Therapeutic potential of cannabinoids in trigeminal neuralgia. - PubMed - NCBI. Current Drug Targets. CNS and Neurological Disorders. 2004 Dec;3(6):507-14. PMID: 15578967. From the abstract:

Currently there is growing amount of evidence to suggest that the psychoactive ingredient in cannabis and individual cannabinoids may be effective in alleviating neuropathic pain and hyperalgesia. Evidence suggests that cannabinoids may prove useful in pain modulation by inhibiting neuronal transmission in pain pathways. Considering the pronounced antinociceptive effects produced by cannabinoids, they may be a promising therapeutic approach for the clinical management of trigeminal neuralgia.

--Timeshifter (talk) 19:40, 18 February 2017 (UTC)

Many studies on medical cannabis and neuropathy are listed in this article:

• Neuropathy Research | Medical Marijuana Inc. From the article:

Cannabis has been shown to be highly effective at relieving neuropathic pain (Jensen, Chen, Furnish & Wallace, 2015) (Baron, 2015) (McDonough, McKenna, McCreary & Downer, 2014). Two major cannabinoids found in cannabis, tetrahydrocannabinol (THC) and cannabidiol (CBD), activate the two main cannabinoid receptors (CB1 and CB2) of the endocannabinoid system within the body (Fine & Rosenfeld, 2014). These receptors regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels (Woodhams, Sagar, Burston & Chapman, 2015). In numerous studies, cannabis has demonstrated the ability to significantly lower pain levels in patients suffering from neuropathic that had previously proven refractory to other treatments (Boychuck, Goddard, Mauro & Orellana, 2015). It’s been shown to specifically reduce neuropathic pain caused by diabetes (Wallace, et al., 2015). Multiple sclerosis and central neuropathic pain patients experienced pain relief with only mild to moderate adverse effects while undergoing two years of THC and CBD treatment (Rog, Nurmikko & Young, 2007). CBD was shown to significantly reduce neuropathic pain in cancer patients without diminishing nervous system function or adversely effecting chemotherapy effectiveness (Ward, et al., 2014). One study found that in HIV-positive patients, 94% reported an improvement in muscle pain and 90% reported an improvement in nerve pain after cannabis use (Woolridge, et al., 2005). In another study, 12 of 15 chronic pain patients who smoke herbal cannabis for therapeutic reasons reported an improvement in pain (Ware, Gamsa, Persson & Fitzcharles, 2002). Because of cannabis’ effectiveness at reducing pain, its use is prevalent among the chronic pain population (Ware, et al., 2003). Luckily, studies indicate that long-term cannabis use for managing pain is safe. After a year of regular use, patients with chronic pain were found to be at no greater risk of serious adverse effects than non-cannabis users (Ware, et al., 2015).

and

Using cannabis has been shown to significantly improve neuropathic pain that had proven refractory to other treatments. The effectiveness of cannabinoids in the management of chronic nonmalignant neuropathic pain: a systematic review. (http://www.ncbi.nlm.nih.gov/pubmed/25635955) Patients with multiple sclerosis or central neuropathic pain receiving THC and CBD treatments for two years saw significant reductions in pain, with only minor side effects. Oromucosal delta9-tetrahydrocannabinol/cannabidiol for neuropathic pain associated with multiple sclerosis: an uncontrolled, open-label, 2-year extension trial. (http://www.ncbi.nlm.nih.gov/pubmed/18035205)

The reference section at the end of the article gives detailed references for the studies discussed in the above excerpts. --Timeshifter (talk) 19:52, 18 February 2017 (UTC)