I have had TN for about 30 years. During all those years the pain has been on the right side of my face. A little more than a year ago, I started to have TN-like pain on the left side of my face. Yesterday I had a flare-up on my right side but today it hurts on my left side. I've read a lot about it, including on this site. I see that it's very rare. But my question, is why/how does someone get TN on the other side? The trigeminal nerve is different from left to right, isn't it? Does it mean that the nerve on the right side of my face is inflamed or compressed and now the same has happened on the left side of my face? Are the two related?
My neurologist sent me to a specialist to see if I had TMJ. That doctor couldn't determine whether that was the case. I wonder whether it's TN or not?
Blateral TN is likely not as rare or unusual as reflected in medical literature. When I did demographics analysis for Living With TN a few years ago, I was able to find indications that at least a fifth of the membership have bilateral pain. There are two largely independent nerves branching from the brain stem, one serving each side of the face. I've talked with several people over the past 20 years who have had microvascular decompression surgery on both sides. Several of them (though not all) were successful on both sides.
I have had TN for almost 3 yrs now, first 18+ months right side only but for the second 18 months it has been on both, left is only like a poor reflection of the right, its never as sharp or debilitating as the right. Have mentioned it to my Drs and they seem to just gloss over it, even my surgeon before my MVD when I said i have a few on that side barely batted an eyelid, i dont think they want to complicate a complicated matter anymore than they have to. The Drs seem to make out its incredibly rare but judging by the numbers on here its probably not as rare as they make out. Since my MVD the right has been brought down to a smilar level to what the left was prior to MVD, its definitely the same pain, not like we could confuse it for anything other than what it is but its not as though it travels right across my face from right to left or vice versa, they appear on different branches and are different in all the other ways as well. Could it be pain transfer as the nerves get overloaded with signals on the right so just share them out? You are a trooper, 30yrs with this, i have struggled to get through 3. Hope you pain is manageable, all the best.
Here is the problem when patients medicalize their discussions with their doctors. There is ALWAYS a lot of background behind medical terms when used as a "diagnoses" as opposed to descriptive. There are very clear definitions of what is TN and what is not:
IHS Diagnostic Criteria for Trigeminal Neuralgia
"">
Classical
A. Paroxysmal attacks of pain lasting from a fraction of a second to two minutes, affecting one or more divisions of the trigeminal nerve, and fulfilling criteria B and C
B. Pain has at least one of the following characteristics:
1. Intense, sharp, superficial, or stabbing
2. Precipitated from trigger zones or by trigger factors
C. Attacks are stereotyped in the individual patient
D. There is no clinically evident neurologic deficit
E. Not attributed to another disorder
Symptomatic
A. Paroxysmal attacks of pain lasting from a fraction of a second to two minutes, with or without persistence of aching between paroxysms, affecting one or more divisions of the trigeminal nerve, and fulfilling criteria B and C
B. Pain has at least one of the following characteristics:
1. Intense, sharp, superficial, or stabbing
2. Precipitated from trigger zones or by trigger factors
C. Attacks are stereotyped in the individual patient
D. A causative lesion, other than vascular compression, has been demonstrated by special investigations and/or posterior fossa exploration
IHS = International Headache Society.
Information from reference
This definition precludes a lot of "Bilateral TN" That doesn't mean that Bilateral pain does not exist. Its just hard to call it Bilateral TN....... The diagnostic criteria for "bilateral is completely different:
Atypical Features Suggesting Symptomatic Trigeminal Neuralgia or an Alternative Diagnosis
"">
Abnormal neurologic examination
Abnormal oral, dental, or ear examination
Age younger than 40 years
Bilateral symptoms
Dizziness or vertigo
Hearing loss or abnormality
Numbness
Pain episodes persisting longer than two minutes
Pain outside of trigeminal nerve distribution
Visual changes
it is important to distinguish classical from symptomatic trigeminal neuralgia for the purpose of treatment. Symptomatic trigeminal neuralgia is always secondary to another disorder, and treatment should focus on the underlying condition. So What is the difference? With classical (unilateral) treatment follows this:
"">
Physicians should obtain magnetic resonance imaging in all patients with suspected trigeminal neuralgia.
Carbamazepine (Tegretol) should be the initial treatment for patients with classical trigeminal neuralgia because it has been found to be successful in most cases and no other medication has been shown to be superior in large studies.
Surgical options should be considered for patients who have persistent pain after trials with several medications or who have a relapse after initial success with medical treatment.
A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, see page 1205 or http://www.aafp.org/afpsort.xml
I don't mean to sound critical because that is NOT at all what I intend. Educated patients generally have better outcomes because they are better able to participate in their treatment and diagnoses. BUT that is totally dependent on their admitting what they don't know and willingness to LISTEN and ask questions..... Making sure they are on the same page as their physicians. In the instance of Bilateral TN, if you follow the same diagnostic criteria as the docs. THEN you know why it so "so rare" Its doesn't mean it doesn't exist, just that it is a different disorder.
Yes it is from the AAFP site and based on the Strength-of-Recommendation Taxonomy (SORT), to label key recommendations in clinical review articles. The recommendations come from the IHS. So sadly IT IS the authoritive source as well the source of diagnostic codes. They are virtually identical to the criteria used by the AAN:
Regardless of HOW you define the terms and whether you use IHS or AAN the Strength-of-Recommendation Taxonomy (SORT), is the same. The name of ones condition is far LESS important than treatment outcomes. Those are VERY clear while the terminology may vary.
What needs to happen is that we need to get rid of the "numbers people" and allow physician to treat the patient and not the first standard deviation of conditions/treatment. The fact is there are a LOT of Zebras out there. but so long as medical practice is controlled by treatment standards established by "FORMULA" we won't be able to see them for all the horses in the way.
I HOPE you are not under the impression that PUBMED which is nothing more than an electronic card catalogue offers anything that is authoritive. It contains good bad and just plain ugly. You are corrective most of the information is NOT read by docs and does befuddle many of them. The most likely reason is it is full of crap... What they do read is the real stuff, you aren't often going to find it on google. which is rife with "press releases" and attempts to secure "funding" You will find it in both IHS and AAN journals and their annual meetings.
The net effect of these criteria is ONLY what something is "called" A lot of effort is wasted trying to get something called something we are comfortable with. Does it matter if its "Bilateral TN" or Full moon Purple Haze?" There are only a few treatments available. Drugs, Interventional, Pain Management/Rehab, and surgical. They are the same no matter what the disease is labeled. There are no secret treatments out there. Its not like if we get a "name" for our condition we like That we suddenly have a new treatment available that will fix it.
I hate to be blunt BUT... Compassion is great, but it really is not something most physicians who are first scientists are really great at. All the compassion in the world won't make you better. Its really a Joe Friday thing. "Just the facts mam.."
I would agree PUBMED is full of a lot of rubbish and indeed contradictions, you read one paper to find it contradicted so you are back at square one, so, it is easy, to find those that serve a purpose, so do you ignore it all, possibly for the best,then you are left with what?
Whilst the IHS or ANN have definitions, they seem to be constantly tweaked by the medical profession, to include symptoms that are not in the original remit, and as such if looked into folk diagnosed with tn, which is descriptive, could then fall into a number of other diagnoses, especially those with autonomic manifestations, which often get ignored, as often stated on this site. Gt the label TN, and here are your treatment choices: medication, that fails, surgical intervention often destructive. Diagnosis of head and facial pain isn't easy but we seem to massage the criteria given. I only wish we were to massage the patient more we may find the secret treatment.
Wow, I was just asking a question about the connection (if there is one) between TN pain on the right and, then, pain on the left. I'm not sure what led to the past few responses but that's not where I was going. So many of us appear to have different symptoms at different times. I don't get the electrical shocks when I have an attack. I feel like someone is driving a metal spike into my face. I don't know what triggers an episode although it may have something to do with changes in the barometric pressure or a rapid, extreme change in the temperature. My attacks may be months, even years apart. So, when I suddenly have one, it puzzles me and I wonder whether I actually do have TN or something else. Then the pain becomes debilitating and I have to take to my bed just to get through it. an attack generally lasts about ten days. I take Lamotrigine daily to ward off pain and it works ... mostly. As I said, the pain in my left side is a fairly recent phenomena. I was simply asking why that has happened given that the trigeminal nerves are separate nerves on either side of the face?
A more direct response to your specific concerns, Karen, is that similar processes of injury might be acting on the two trigeminal nerves. Over 20 years, I've talked to hundreds of patients in whom pain developed first on one side, and then on both, or even "switched" between the two. From the reading I've done, I don't believe that the basic science is really established to clarify precisely what mechanism is involved in the nervous system. I can only say that what you are experiencing would be recognizable to quite a lot of people. And I can confirm that sudden change in barometric pressure or temperature is rather often a trigger in either one-sided or bilateral facial pain. Many patients report that.
There is no one course or sequence of development in facial neuropathy. And if this thread has illustrated anything, it is that there is still considerable ambiguity or inconsistency in labeling face pain by category. It may eventually turn out that at least two different mechanisms are involved -- one of them localized to vascular compressions, and the other having more of the character of a central nervous system hypersensitivity. There might be more than two mechanisms or "causes" operating. Because chronic facial pain of neurological origins seems to be relatively rare, the research on basic science and treatment hasn't been well funded in light of other pressing research needs for more common disorders like MS, Parkinsons, and Fibromyalgia.
I get the zaps or flashes of pain rather than electrical shocks, i cant do that analogy of the pain, ive been electrocuted and its nothing like this pain. I have had a similar spike though my face pain, from just above my eye brow, down behind my eye, through my cheekbone, through my lips, gums and teeth and then felt like it emerged from the bottom of my mouth. it hurts to even recall that one. i also dont seem to have any set triggers, if i touch my face during a bad spell then it makes it worse, occasionally it will set it off, only 2 or 3 spots seem to trigger it from nothing but not all the time. I get some pain every day without fail, had a lovely 3 months after my mvd but last 2 and a bit weeks its every day again although much lower than what it was. the compression of the nerve explanation seems to fall down when its bilateral, i just dont see how it could fit unless it is just pain transfer as the damaged nerve just gets overloaded with the pain signals. much more needs to be done regarding this condition, the above comments dont relate to what you asked but they do make a valid point that all the treatments and meds seem to just mask the symptoms and not actually treat the cause of the pain what ever that maybe.
Red of course is correct. ONE of the things that distinguishes the actual condition "Trigeminal Neuralgia" from regular old neuralgia coming from the trigeminal nerves is the presence of triggers. Barometric pressure, wind, lying prone and a host of others.
As far as right vs left or both the ONLY thing we know for sure is that MRI is not dependable enough to know what's going on.... especially as far as compression. The other thing we all tend to forget is that there is a HUGE difference between the right side and left side of the head in terms of anatomy. Its entirely possible that the left side COULD be flaring and we simply don't "feel it" unless its a severe flare......... The right side is effected twice (or more) often than the left. The foramen rotundum and foramen ovale are much narrower on the right side than the left.
BTW I did not mean to give the impression that the sodium channel blockers "cover up" pain. (Not that it matters, when my mine gets rockin and rollin I'd walk around naked an painted purple if it would reduce the pain) I meant only that a real and a better answer and medication will be found when we know WHY the sodium channels are effected.
Bilateral TN, to me would suggest a central cause, either brain stem or neck, unless or even so you have been diagnosed or exhibit signs of a systemic illness. Bilateral a central common cause, short of systemic illness how unlucky would you have to be to have the hypothesis of vascular compression on both sides, for a very rare illness. That said TN is an enigma. Although TN has been linked with other disorders particularly migraine which is often neck mediated. Migraine? /TN ? Bilateral TN ? neck mediated in the absence of pathology.
Anatomical variations between left and right, i.e. foramen volumes,do not to date seem to be reflected in treatment decisions when it comes to surgery. Extremely controversial, but it might be suggested that conditions affecting the right side are due to 'business' stress those of the left emotional/ family. RED, your neighbours, at this point, on you reading, think they are involved in an earthquake. Hugely controversial but in a clinical setting seems to hold true, for whatever reason ( personnel observation).
Karen, I understand your frustration when asking a simple question and responders become scientific, digress, or argue like a HS debate team, and information then gets so convoluted or lost in the process. Just keep searching for the right answers and keep the strength to fight the pain. Those of us who ARE in pain want answers: simple, quick, and easy. Some find it, some don't. I'm still searching after 17 years in pain. But I haven't given up yet! :-) I will be sure to keep you in my prayers.
Karen Brown said:
Wow, I was just asking a question about the connection (if there is one) between TN pain on the right and, then, pain on the left. I'm not sure what led to the past few responses but that's not where I was going. So many of us appear to have different symptoms at different times. I don't get the electrical shocks when I have an attack. I feel like someone is driving a metal spike into my face. I don't know what triggers an episode although it may have something to do with changes in the barometric pressure or a rapid, extreme change in the temperature. My attacks may be months, even years apart. So, when I suddenly have one, it puzzles me and I wonder whether I actually do have TN or something else. Then the pain becomes debilitating and I have to take to my bed just to get through it. an attack generally lasts about ten days. I take Lamotrigine daily to ward off pain and it works ... mostly. As I said, the pain in my left side is a fairly recent phenomena. I was simply asking why that has happened given that the trigeminal nerves are separate nerves on either side of the face?
Thank you Red. You always offer great advice, facts and perspective and, for that, I am very grateful.
Karen
Richard A. "Red" Lawhern said:
A more direct response to your specific concerns, Karen, is that similar processes of injury might be acting on the two trigeminal nerves. Over 20 years, I've talked to hundreds of patients in whom pain developed first on one side, and then on both, or even "switched" between the two. From the reading I've done, I don't believe that the basic science is really established to clarify precisely what mechanism is involved in the nervous system. I can only say that what you are experiencing would be recognizable to quite a lot of people. And I can confirm that sudden change in barometric pressure or temperature is rather often a trigger in either one-sided or bilateral facial pain. Many patients report that.
There is no one course or sequence of development in facial neuropathy. And if this thread has illustrated anything, it is that there is still considerable ambiguity or inconsistency in labeling face pain by category. It may eventually turn out that at least two different mechanisms are involved -- one of them localized to vascular compressions, and the other having more of the character of a central nervous system hypersensitivity. There might be more than two mechanisms or "causes" operating. Because chronic facial pain of neurological origins seems to be relatively rare, the research on basic science and treatment hasn't been well funded in light of other pressing research needs for more common disorders like MS, Parkinsons, and Fibromyalgia.
Actually Karen I'm likely misunderstanding you but they are NOT seperate nerves. That's why anything can happen anywhere depending on the location of the "irritation" although if you look at the picture I'm attaching its more likely. Its a complicated anatomy with those nerves extending from C-5 to the entire face. As nice as it would be to "simplify it, It can't happen. There are no fewer than 154 known diseases/conditions that can cause facial pain that can be traced to the trigmenial nerves. While this community has tried to limit it to vascular compression, the fact is THAT condition is the rare ones. of the 154, a lot of them can be easily eliminated. In any event while the high school debate team discusses, dissects, digresses, goes off in tangents, That is how a lot of people learn. Others not so much. There is room for both. The only thing that is not likely when WHY or HOW is the question, that there is a simple answer. If there is I can promise you its likely wrong or over simplified.
Nerves transmit both directions Although some are designed primarily to go one. What make neurology so difficult is that when there is a problem, you don't know what direction its coming from (or it could be going both ways.) so it could be ANYWHERE in the system. It would be NICE if all facial pain were restricted to nerve pressure caused in one general area that once relieved solves the problem. After 40 years of trying to do that surgically, its painfully clear that simply isn't the case. So look at the photo I attached. Its a schematic, But all that aside notice how the BULK of the nerves that are part of the Trigeminal complex travel on the left side and go to the right. Most TN is on the right side but its easy to see how it could be on the left. Realize an electrical signal could travel from any point to another.
Karen Brown said:
Wow, I was just asking a question about the connection (if there is one) between TN pain on the right and, then, pain on the left. I'm not sure what led to the past few responses but that's not where I was going. So many of us appear to have different symptoms at different times. I don't get the electrical shocks when I have an attack. I feel like someone is driving a metal spike into my face. I don't know what triggers an episode although it may have something to do with changes in the barometric pressure or a rapid, extreme change in the temperature. My attacks may be months, even years apart. So, when I suddenly have one, it puzzles me and I wonder whether I actually do have TN or something else. Then the pain becomes debilitating and I have to take to my bed just to get through it. an attack generally lasts about ten days. I take Lamotrigine daily to ward off pain and it works ... mostly. As I said, the pain in my left side is a fairly recent phenomena. I was simply asking why that has happened given that the trigeminal nerves are separate nerves on either side of the face?
Hi Karen, I get 70% left sided and 30% rightsided. I had surgery in 2003 to kill nerves on the left side, I had to choose only one side, would not be able to function being numb on both sides. From my understanding, the TN nerve coming off the brain stem is the culprit. I have heard they are getting good results by injecting the nerve with alcohol works for a year or so, go figure.
I recently had Gamma Knife for the second time in 30 years which left me with Anestisia Delrosa ( numbness feels like bees biting, along with crawly worms in my face) The TN pain subsided for the last 2 years . a few weeks ago the TN pain started on the other side of my face ..so now I added tegretoI to the mix of Lyrico and Nuerontin... guess this is my lot in life I'm always in pain or a fog from the medicine.
Mappy, I’m so sorry to hear of all your pain and painkillers. No one deserves any of this. We just drew the short straw. Here’s hoping for fog-less days in your future.
I am bilateral too. My left side was my fist and is usually worst then the right but I have had a few dandy and nasty flare ups on my right side. Sometimes I have pain on both sides. It is like it bounces around from one side to the other. I have lots of different sensations from burning, constant, vibrating pain to tingles and little zings, shocks and bolts.
There are many of us that are bilateral and some people have procedures like MVD done on both sides so I really don't see that it is as rare as many believe.
Everything in the body is connected of course. I don't know why I have TN on one side, let alone on both sides and frankly neither does any dr. I have seen.
