My Trigeminal Neuralgia Story
 by Erin 
http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html

 This website is for patients with pain to journal and describe what they have occurred with their pain of trigeminal neuralgia. The more detailed they write about their pain the greater chances they have of having someone else with a similar pain help then or on the other hand for their  journal to help someone else. This is a "win win" website where we all are out to help each other. As you read this site and others linked from this page in the yellow box below you will see how different each situation is and yet how much similarity there is in the patient problems.

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Designers Box.  Brian Nelson. Owner   31 Gessner Rd. ,  Houston, TX 77024 713-467-3025   Click: E-mail me
The important words found on this site include:                           Misspelled words used to find this page 1 of 5.
Find this site by typing in the Google search engine  the very unique word "2yrotsymnirE"  which is  OR "Erinmystory2 " backwards.    
Article Word Count __________ M
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You are at: http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html    ud 12/17/2008 03:16 AM -0600 Bookmark this page now!

Misspelled words used to find this page 1 of 3  1aiglaruen trigemnal, trigeminal, trigemial, trigeminl, tigeminal, trgeminal, trieminal, trigminal, trigeinal, trigeminar, tligeminal, tligeminar, tr1gen1ma1, tr1gen1mal, trigenimal, trigemimal, trigeminla, trigemianl, trigemnial, trigeimnal, trigmeinal, triegminal, trgieminal, tirgeminal, rtigeminal, trigemina, rigeminal, neuralgia, nuralgia, neralgia, neualgia, neurlgia, neuragia, neuralia, neuralga, neurargia, neurargai, neulalgia, neulalgai, neulargia, neulargai, neuralgai, neura1g1a, neuralg1a, meuralgia, neuraliga, neuraglia, neurlagia, neuarlgia, nerualgia, nueralgia, enuralgia, neuralgi, euralgia, tic, tik, tick, t1c, tci, itc.douo1oreau, douoloreua, douoloraeu, douoloerau, douolroeau, douoolreau, doulooreau, doouloreau, duooloreau, oduoloreau, douolorea, douoloreu, douolorau, douoloeau, douolreau, douooreau, douloreau, dooloreau, duoloreau, ouoloreau, douoloreau, nt, tm, tn,facia, facea, faicea, facai, faicia, faicai, fasial, faisial, fatial, faitial, facial, fatail, faicair, facair, fasail, faicial, faicail, faceal, faiciar, facear, faseal, fateal, faiceal, faicear, facail, faciar, fc1a1, phc1a1, fac1a1, fac1al, facila, faical, fcaial, afcial, facil, facal, faial, fcial, acial,pain, paeign, paiegn, paen, paan, pian, paign, pane, peon, peen, piin, pyin, pien, pyen, pean, pein, pyan, pani, peni, pa1n, paim, apin, head, had, hed, heed, hiad, heda, haed, ehad, neck, nevk, enck, envk, eignck, eignvk, iegnck, iegnvk, meck, mevk, nekc, ncek, brain, blane, brane, brian, blain, blian, braeign, blaeign, braiegn, blaiegn, braen, blaen, braan, blaan, briin, bliin, brien, blien, brean, blean, brein, blein, breen, bleen, braim, briam, blaim, bliam, bra1n, brani, barin, rbain, tooth, touth, tooht, totoh, ototh, toth, ache, acze, aceh, ahce, cahe, treatment, treatent, treatmnt, treatmet, teatment, treament, tleetmiegnt, tratmiegnt, trheatmeignt, tleaitmant, tleaitmiegnt, tretmiegnt, trheaitmeignt, tlheatment, tlheatmiegnt, treetmiegnt, tleatmeignt, tlheatmant, treaitment, treaitmiegnt, tlatmeignt, tlheaitment, treaitmant, trheatmiegnt, tletmeignt, treatmeignt, trheatment, trheaitmiegnt, tleetmeignt, tratmeignt, trheatmant, tleatmiegnt, tleaitmeignt, tretmeignt, trheaitment, tlatmiegnt, tlheatmeignt, treetmeignt, trheaitmant, tletmiegnt, treatmiegnt, treaitmeignt, tleaitment, tratmant, triatmiegnt, tretmant, tratment, tliatmiegnt, treetmant, tretment, tleatmant, treetment, triatment, tlatmant, tleatment, triatmant, tletmant, tlatment, tliatment, tleetmant, tletment, tliatmant, tleetment, triatmeignt, treatmant, tliatmeignt, treatnemt, treatmemt, treatmetn, treatmnet, treatemnt, treamtent, tretament, traetment, teratment, rteatment, treatmen, reatment, cancer, censer, cancel, cencel, cansel, censel, cacer, cencer, canser, caner, canel, cainl, cainr, ceiner, ceinel, cance, cence, canse, cense, canc, cenc, cancre, camcer, canecr, cacner, cnacer, acncer, cancr, cncer, ancer,information, informatin, informatiom, infolmatiom, iformation, inormation, infrmation, infomation, inforation, informtion, informaion, informasion, infolmasion, informaton, informashun, informashon, infolmation, infolmaton, infolmashun, infolmashon, iegnfolmatiom, iegnformachun, eignfolmasion, eignformachon, iegnformaton, iegnfolmachun, eignformatiom, eignfolmachon, iegnfolmaton, iegnformashon, eignfolmatiom, eignformachun, iegnfolmashon, eignformaton, eignfolmachun, informachon, iegnformashun, eignfolmaton, eignformashon, infolmachon, iegnfolmashun, iegnformation, eignfolmashon, informachun, iegnformasion, iegnfolmation, eignformashun, infolmachun, iegnfolmasion, iegnformachon, eignfolmashun, eignformation, iegnformatiom, iegnfolmachon, eignformasion, eignfolmation, inphormashon, iegnphormation, eignphormation, inpholmashon, iegnpholmation, eignpholmation, inphormashun, iegnphormachon, eignphormachon, inpholmashun, inphormation, iegnphormachun, eignphormachun, inphormasion, inpholmation, iegnphormashon, eignphormashon, inpholmasion, inphormachon, iegnphormashun, eignphormashun, inphormatiom, inpholmachon, iegnphormasion, eignphormasion, inpholmatiom, inphormachun, iegnphormatiom, eignphormatiom, inphormaton, inpholmachun, iegnphormaton,

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2  My Trigeminal Neuralgia Template  http://www.MyTrigeminalNeuralgiaStory.com/PersonalTemplate/TN2.html
3   Shirley H 2004 http://www.MyTrigeminalNeuralgiaStory.com/ShirleyH/TN3.html
4 SandiW 2005 http://www.MyTrigeminalNeuralgiaStory.com/SandiW/TN4.html Atypical Facial Pain.
5 Charlotte McLaughlin  1992 http://www.MyTrigeminalNeuralgiaStory.com/CharlotteMcLaughlin/TNPatient.html
6 Molly Harker http://www.MyTrigeminalNeuralgiaStory.com/MollyHarker/TN6.html 
7 Erin http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html
8  

You are at: http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html   ud 12/17/2008 03:16 AM -0600 Bookmark this page now!

7 Erin

http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html

10-1-08

Brian,

Here's my story from the beginnings through to today.  It helped me to write it out.  Thanks for giving me a reason to do so.

 
I am a 30 year-old woman, married 8 years, dated him 4 years prior to that.  We have a 7 year-old son, and 2 year-old boy/girl twins.  My husband is in his senior year at University and about to enter grad school.  My journey with TN began sometime in early 2006.  I started noticing flashes of pain in the left, lower portion of my face, along my jaw.  I didn't have insurance, so I didn't seek treatment for what I thought was a toothache.  I tried to be very caring of my teeth, and hoped that would be enough.  By early October, however, the pain was constant enough and intense enough that my husband and I decided I should see a dentist. 
 My dentist found an offending tooth, cracking around an old filling, and he capped it.  Since I didn't have insurance he even knocked off 60% of the bill.  I left the dentist office numb and happy, and has the numb wore off, I was less and less happy, ultimately screaming in a ball on my couch.  My husband called the dentist back and he got me in first thing the next morning for an emergency root canal.  However, this time around, he couldn't get me anywhere near completely numb.  I told him to try for the procedure, I'd hang tough as long as I could.  We made it about half-way through when he just decided he couldn't hurt someone this badly anymore.  The dentist sent me home with a couple of pills to take before the next attempt at a root canal - the pills were to knock me out and leave me with no memory of the procedure.  I'm told that pretty much as soon as he started working on the "bad tooth" I came out of the chair.  My poor dentist, at this point, sent me home with a very strong dose of those pills and three days off between attempts, hoping to let inflammation die down  I took the pills, went in for a root canal, and again came out of the chair as soon as he tried to work on the tooth.  At this point, after I went home and woke up, I decided to just pull the stupid tooth.  My dentist didn't disagree, but wanted me "out" for that procedure too.  So once more I took the sleepy pills, went in, passed out....and had to be restrained while he pulled the tooth.  The roots all looked healthy. 
 At this point I had a chat with my dentists, where we tried to carefully draw on paper the areas that where painful to me, and for me to write down the kind of pain sensation I felt.  The two dentists left the room a moment and returned with a referral to a local neurologist.  They told me they suspected I had something called Trigeminal Neuralgia and that without treatment for that, any dental procedure would likely affect me this way, while leaving me no better off.  The root canal was probably a "red herring" sending us chasing after a symptom rather than the cause.  So, I made the appointment with the neurologists for a few weeks out. 
 Those were pain-filled, scary weeks for me.  As much as I was able, I researched TN.  I found a lot of "Hey, we do surgery!" sites and a lot of "Hey!  We can toss drugs at you but that's about all we got as cures go" sites.  I found a disappointingly few sites devoted to the patients and their coping mechanisms that just got them through a day, which was the real purpose behind my search.  In a word, I was discouraged.  I ordered th TN Bible, "Striking Back."  It didn't' arrive before my neurology appointment.  So I walked into my small-town doctor's office and shared a waiting room with five others, all over retirement age, by my guess, and felt out of place. 
 But the nurse who called me back was energetic and sympathetic without being false and seemed to have caught my broadcast of "HOPELESSNESS" loud and clear.  In between taking my temperature and blood pressure and getting my history she got the story of how that beautiful scarf she had commented on is actually three times the average width, knit for me by my mom, so I could cover almost my entire face to walk from my house to my car, from my car to the store.  How very small my diet had become, on some days nonexistent.  How I had worked with my husband to have certain signals that on a bad day are our means of communicating.  How I wasn't doing cub scout den mom this year or building snow men with my three kids.   How many days it was sometimes between one shower and the next, one tooth brushing and the next, and she seemed to care, which was like a gift. 
 Then Dr K, whom I had seen before just to get the right migraine medication going, walked in and he seemed to care too - to a point.  And that has become my biggest frustration.  He was nice about it but I was an anomaly.  He had all these theories about how I had ended up with TN so young (earlier that year I'd delivered twins, but it was a physically difficult pregnancy which required surgical intervention, and then I almost died during the C-section- "Major Physical Trauma" according to Dr K).  Anyway, either way, diagnosed is what I was, and I was off to have an MRI we'd pray was negative.  It was.
 I went home with samples of Lyrica, which I started taking at the low dose recommended.  Three nights later I "woke" up in what I guess was a dreaming state and thought my husband was there to harm my kids and myself.  I drew a knife on him.  He stayed remarkably calm but it was several hours before I started to understand the thoughts running through my head had nothing to do with reality. and then I just slumped back and fell asleep.  Hubby called Dr K the next day and asked that he try a different medication.  I was put on Tegretol, worked up to 800mg  each day, still having symptoms.  Dr. K added Neurontin, 1800mg a day.  He also told me if the pain became unbearable, seek treatment in an Emergency Room.
 I have done that, maybe four times, over the last year.  After the first time it became something I resist until I simply get too caught up in the pain to resist my husband's concern any longer.  I was treated so poorly.  We live in a rural community.  They literally had to go Google "trigeminal neuralgia" to find any information on it for the doctor.  Yet they treated me like a junky the entire time.  The nurses were at best, condescending and at worst, cruel.  The doctor never tried to hide his bafflement that he was facing such pain without any way to make it be known - MRI, CAT, blood work, obvious injury, SOMETHING!  I occasional have made the choice that fighting this pain without a break is at the moment worse than facing such treatment, but they always treat me like I'm an annoyance to them, and they begrudge the care they give.  At those moments, beaten by the pain into doing something I truly hate doing, I feel completely powerless and humiliated.
 I have maybe a week at most, sometimes, for no good reason, that is pain free.  I love them and want to find the pattern to them!  For the most part though, it's good, bad, or plain old nasty days that I have.  I fear a lot of things, but I find myself fearing the return of the pain by large distinction more than anything else.  Sometimes I think, "I'm allowing myself to NOT enjoy being pain-free because I'm so busy being terrified of when and how hard the next strike will come." 
 I am locked in my house.  I'm afraid to drive, afraid of the wind (and warm or cold, we always have some here), afraid of hugs or kisses, afraid to play with my babies (they hit my face so often, or just stroke it in love), afraid to cook or do dishes (heat hurts), afraid of showers, pull-over shirts, sex, meeting new people who will think I'm a freak if this shows up five seconds after we're introduced.  I'm afraid of what I've done to my marriage, changing into this cringing, scared woman when I used to be anything but - and I know my strength and adventure and up-for-anything attitude was one of the things my husband loved most about me.  I'm afraid my kids are being taught to hide out in fear of what could be.  But I can't change that.  Because more than I'm afraid of those things, I'm afraid of the PAIN. 
 At first, I knew I could handle it.  I knew it was going to be BAD, boys n girls, but I could and would handle this.  I'd adjust a few activities to suit it better and off we'd go.  No such thing.  After all, I'd been through pain that blew my doctors' minds when they realized I was just handling it, but it really was that bad.  I was TOUGH.  I've been hurt and injured, inside and out, I went through organ death that was nearly overlooked because any patient as clear-headed as me could not be experiencing such a thing.  I was a bad momma, tough and willing to take what got thrown her way, then deal with it and get the heck past it.  It wasn't my main point of pride, it was something I'd decided had to be a part of me in order for my family to live the way we want to. 
 Until TN, I didn't think there was anything that COULD make me panic.  I didn't think fear could own me completely, so completely it stole my thinking self away and hid it tight.  But here I am, in my house again today, not having stepped out my door because the air is cold.  In addition to the fear is the shame, which has roots in everything.  My kids, what they see and learn because of the new me, my man and what it must make him feel, shame every time someone else is present to witness how the pain takes me over when it hits so that I can't remember to breathe or think or even count to ten.  Shame at how angry I'm becoming over all of it.  I'm not angry at anyone but myself and the TN, like it was another person and we are struggling for control over ME, my self.
 
Dr K has been completely unhelpful pretty much.  The last time we met I asked him if I needed to see someone who knew more of treating TN, and he agreed that he was "out of tricks" whatever that meant.  He old me he'd find someone on the coast to refer me to (I live on the Idaho/Washington boarder, lots of small towns, for big things we hit the coast).  That was in July.  I never heard back from him.
 Today is day 19 of the worst strike yet.  I'm not holding up well.  The pain becomes worse the longer I am up but it's also starting to wake me so I haven't slept soundly in days, which eats at my coping skills.  I finally called Dr K back and asked for that referral.  He called back and offered me another Medrol Dose Pack (his favorite tool) and said he would contact a Dr C with UW in Seattle, get that process rolling.  I don't even know what that process is.  I'm having panic attacks these last few days.  Told him that.  It was a problem once before that I got hold of through biofeedback and meditation, but I can't focus that well this time around.  He wished me good luck.  
 My general doctor's nurse called today following-up on something else (I herniated two discs in my back and tore a tendon in my right knee falling due to clumsiness brought on by meds, fun fun).  I was kind of a wreck when she called so my gp ordered a few Lorazapam - can you say embarrassed??!  But I'm not holding up as well as I wish I were and my pride needs to take a backseat to surviving right now.  When I get very worked up and very panicked and very fearful and the attacks just keep coming and coming the thing that comes to my mind is "Just cut it out of your face, Erin.  It'll stop."  I work with straight razors as a cosmetologist and I've gone through how I'd heat it first to clean it and wear gloves and the whole thing.  I don't think it's something I WANT to do, I think it's something that helps me when I need to feel defiant.  But a few months ago I could have said so with certainty, and now all I can do is "I think."  I don't know what this means, what the consequences would be, but I often feel like just letting to go it, letting the pain take me.  The pain comes anyway, why waste the energy fighting it?  But I don't know what would happen if I did that, I'm just pretty sure it's not something I would want for my family.  So I haven't.  But tomorrow the temptation will start again.  Someday I will probably lose that fight.
 
So, that's where I am.  It actually felt purging to just say it to someone start to finish.  If you want to contact me, please do so.
 
Erin
(509) 995-3009
 Spokane, WA
ERIN'S UPDATE 12-16-08
 
Brian,
 
Hello.  I read the post, and just started crying.  The thing is, in the time since I heard from you last, I did give in to temptation, in a way.  I took that razor and tried to slit my wrists.  My husband suspected I was up to something, and ultimately he got the razor away and hospitalized me.  A few weeks later, I was in Seattle, having a microvascular decompression.  I had complications, started having seizures, directly afterward.  We got those under control and I came home, only to be flown back on November 29 because I had a cranial spinal fluid leak (CSF).  I ended up with a lumbar drain, and having the original surgical site re-opened, fat taken from my belly to plug the leak, and home on December 9th.  On the 12th I was hospitalized with a fever, had a lumbar puncture and blood cultures done, but I'm home again (hopefully for good!) as I have an infection but it isn't meningitis.  The fantastic news?  NO TN PAIN since the first operation!!!!  That was November 13th, so it's been more than a month.  I'm cautiously optimistic, but find myself still afraid the pain will return.  I hate that even without TN pain for a month after surgery I still wait for it to hit when I step outside or brush my teeth, but I'm sure this will improve with time.
 
In my search for information on TN I met some amazing people.  I'm still in contact with them, and I'm determined they will know they are not alone, and that there is hope.  This disease has made me feel so isolated and driven me to do attempt suicide - if I can help one person through those despairing moments and keep them in the fight long enough to find a solution, I will do so.  Thank you for giving me a place to tell this story and reach out to others who understand it - more than anything, knowing I wasn't alone in this gave me hope enough to pursue surgery, and gives me hope still as I try to rebuild the life I had before TN took over. 
 
May this find you well,
Erin
(509) 995-3009
 Spokane, WA 12-16-08
Definitions of Trigeminal Neuralgia on the Web:
  • Sharp shooting lancinating pain found in the forehead, face or jaw region. The pain is usually on only one side of the face. It can sometimes be seen in the setting of multiple sclerosis. Treatment usually consists of medical therapy (the primary drug is Tegretol ). ..
     
  • Lightning-like, acute pain in the face caused by demyelization of nerve fibers at the site where the sensory (trigeminal) nerve root for that part of the face enters the brainstem.
    A painful condition caused by a disturbance in the function of the trigeminal nerve, which carries sensation from your face to your brain. The pain is similar to an electric shock.
    a disorder of the trigeminal nerve (a cranial nerve) that causes brief attacks of severe pain in the lips, cheeks, gums, or chin on one side of the face
    a condition which produces pain in the trigeminal nerve in the face.
    Paroxysmal pain in the face. Pain may be so severe that it causes an involuntary grimace or "tic". (Tic Douloureux).
  • a condition resulting from a disorder of the trigeminal nerve. Symptoms are headache and intense facial pain that comes in short, excruciating jabs.
    intense paroxysmal neuralgia along the trigeminal nerve
     
  • Trigeminal neuralgia is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, upper jaw, and lower jaw. Trigeminal neuralgia is considered by most physicians to be the most painful condition known to man, and has, in fact, been called the, "suicide disease," because this has been the choice of many people who were unable to have their pain controlled with medications or surgery.

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  09/24/2009 02:35 PM -0500

 

What Is Trigeminal Neuralgia?

 

TN (Trigeminal Neuralgia) is a pain that is described as among the most acute known to mankind.  TN produces excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears.

It is a disorder of the trigeminal nerve, which is the fifth and largest cranial nerve.

TN (Trigeminal Neuralgia / tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw.  By many, it's called the "suicide disease".  A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs.   Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides.  Onset of symptoms occurs most often after age 50, but cases are known in children and even infants. Something as simple and routine as brushing the teeth, putting on makeup or even a slight breeze can trigger an attack, resulting in sheer agony for the  individual. Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice.  Initial treatment of TN is usually by means of anti-convulsant drugs, such as Tegretol or  Neurontin.  Some anti-depressant drugs also have significant pain relieving effects.  Should medication be ineffective or if it produces undesirable side effects, neurosurgical procedures are available to relieve pressure on the nerve or to reduce nerve sensitivity.  Some patients report having reduced or relieved pain by means of alternative medical therapies such as acupuncture, chiropractic adjustment, self-hypnosis or meditation.

NINDS Trigeminal Neuralgia Information Page
Synonym(s):   Tic Douloureux
Condensed from Trigeminal Neuralgia Fact Sheet
 

Table of Contents (click to jump to sections)
What is Trigeminal Neuralgia?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations
Related NINDS Publications and Information
Additional resources from MEDLINEplus
What is Trigeminal Neuralgia?
Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode.  The intensity of pain can be physically and mentally incapacitating. TN pain is typically felt on one side of the jaw or cheek. Episodes can last for days, weeks, or months at a time and then disappear for months or years.  In the days before an episode begins, some patients may experience a tingling or numbing sensation or a somewhat constant and aching pain.  The attacks often worsen over time, with fewer and shorter pain-free periods before they recur.  The intense flashes of pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or being exposed to the wind.  TN occurs most often in people over age 50, but it can occur at any age, and is more common in women than in men.  There is some evidence that the disorder runs in families, perhaps because of an inherited pattern of blood vessel formation. Although sometimes debilitating, the disorder is not life-threatening.

The presumed cause of TN is a blood vessel pressing on the trigeminal nerve in the head as it exits the brainstem. TN may be part of the normal aging process but in some cases it is the associated with another disorder, such as multiple sclerosis or other disorders characterized by damage to the myelin sheath that covers certain nerves.

Is there any treatment?

Because there are a large number of conditions that can cause facial pain, TN can be difficult to diagnose.  But finding the cause of the pain is important as the treatments for different types of pain may differ.  Treatment options include medicines such as anticonvulsants and tricyclic antidepressants, surgery, and complementary approaches. Typical analgesics and opioids are not usually helpful in treating the sharp, recurring pain caused by TN.  If medication fails to relieve pain or produces intolerable side effects such as excess fatigue, surgical treatment may be recommended. Several neurosurgical procedures are available. Some are done on an outpatient basis, while others are more complex and require hospitalization. Some patients choose to manage TN using complementary techniques, usually in combination with drug treatment.  These techniques include acupuncture, biofeedback, vitamin therapy, nutritional therapy, and electrical stimulation of the nerves.

What is the prognosis?

The disorder is characterized by recurrences and remissions, and successive recurrences may incapacitate the patient. Due to the intensity of the pain, even the fear of an impending attack may prevent activity. Trigeminal neuralgia is not fatal.

What research is being done?
 

Within the NINDS research programs, trigeminal neuralgia is addressed primarily through studies associated with pain research. NINDS vigorously pursues a research program seeking new treatments for pain and nerve damage with the ultimate goal of reversing debilitating conditions such as trigeminal neuralgia. NINDS has notified research investigators that it is seeking grant applications both in basic and clinical pain research.

Select this link to view a list of studies currently seeking patients.

Organizations

Trigeminal Neuralgia Association
925 Northwest 56th Terrace
Suite C
Gainesville, FL   32605
tnanational@tna-support.org
http://www.tna-support.org
Tel: 352-331-7009 800-923-3608
Fax: 352-331-7078
 
IRSA (International RadioSurgery Association)
P.O. Box 5186
Harrisburg, PA   17110
office@irsa.org
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
 
National Foundation for the Treatment of Pain
P.O. Box 70045
Houston, TX   77270
NFTPain@cwo.com
http://www.paincare.org
Tel: 713-862-9332
Fax: 713-862-9346
American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA   95677-0850
ACPA@pacbell.net
http://www.theacpa.org
Tel: 916-632-0922 800-533-3231
Fax: 916-632-3208
 
American Pain Foundation
201 North Charles Street
Suite 710
Baltimore, MD   21201-4111
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An Alternate Strategy

Instead of waiting for the pain to become intractable or the medications toxic, an individual with trigeminal neuralgia has the option to request early surgery. This has a number of potential advantages:

· Avoid years of medication and intermittent pain

· Avoid facing surgery when old or infirm

· If the person has a vascular loop, early microvascular decompression will increase the possibility of a successful operation with decreased risk of recurrence (evidence suggests better outcomes and lower recurrence rate the shorter the interval between onset of symptoms and nerve decompression)

How To Find Out If You Have a Vascular Loop

The conventional MRI scans used to rule out the presence of a brain tumor or multiple sclerosis as a cause of a patients face pain are not adequate to visualize the trigeminal nerve or an associated blood vessel. Fortunately, the continued improvement in MRI neuro-imaging now makes it possible to visualize both. The technique, which is called 3-D volume acquisition, is performed with contrast injection and utilizes thin cuts (0.8mm), without gaps similar to what was developed for MRI angiography and venography. The trigeminal nerve is easily visualized in the axial plane when the MRI series is centered at the midpoint of the fourth ventricle. To ensure an adequate evaluation, the nerve should be seen on three adjacent cuts. Early studies indicate that when an offending vessel is present it will be detected 80% of the of the time. With continued imaging improvements this percentage will definitely increase. Click here for UCSD Trigeminal Neuralgia Sequence Parameters for Seimens and GE MR Scanners.

Surgical Options: Non-Destructive Procedures

The only non-destructive procedure which reliably relieves the symptoms of Trigeminal Neuralgia is Microvascular Decompression (MVD). This involves surgical exploration with the operating microscope and visualization of the junction where the Trigeminal nerve enters the base of the brain, followed by coagulation or moving and padding away any compressing blood vessels. The advantage is pain relief without numbness in the majority of patients, which usually lasts indefinitely. If the pain recurs after a MVD, which it does in 10-15% of patients, it can usually be controlled with low dose Tegretol® or Neurontin®. If the pain continues, it will require a repeat MVD or one of the destructive procedures.

Surgical Options: Destructive Procedures

There are multiple destructive procedures which are beneficial in the treatment of Trigeminal Neuralgia. The most common of which are glycerol injections, gamma knife radiation, electrocoagulation, and balloon compression. These procedures are all based on interrupting the pain by partial damage to Trigeminal nerve fibers. Generally the more numbness they produce, the longer they last. The specific advantages and disadvantages need to be discussed with the surgeon performing the procedure. These procedures are recommended for patients who have failed MVD or are not candidates for major surgery.

Comments

Treatment is always individualized.  All of the options above should be considered in consultation with a neurosurgeon familiar in their use.

Recommendations

Based on the data currently available, and in an effort to maximize quality of life, we recommend the following:

          Patients with less than 10 year life expectancy

Refer for destructive procedure if pain not controlled medically without significant side effects

          Patients with more than 10 but less than 20 year life expectancy

Consider destructive procedure

May abolish need for continued increasing medications

Will make medical therapy easier even if fails

        Patients with more than 20 year life expectancy

Perform thin cut MRI with 3-D Volume Acquisition

If vessel present recommend MVD

Consideration needs to be given to current life expectancy charts at time of implementation. At this time life expectancy is shown below:

Current Age Life Expectancy
50 30 years
55 28 years
60 24 years
65 20 years
70 16 years
75 12 years
80 9 years
85 6 years
90 5 years

(data from IRS Publication 590, Appendix E, Table 1, December 12, 1999)

When a destructive procedure is required, Gamma Knife stereotactic radiosurgery is the procedure of choice because it is least invasive and has the lowest risk of numbness or other side effects, while producing excellent pain relief in most patients with a low incidence of recurrence.

For additional information, please see Trigeminal Neuralgia: Individualized Surgical Management in the 21st Century.

ARTICLE SECTIONS From the Mayo Clinic. 

Trigeminal neuralgia                       http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

Introduction

Imagine having a jab of lightning-like pain shoot through your face when you brush your teeth or put on makeup. Sound excruciating? If you have trigeminal neuralgia, attacks of such pain are frequent and can often seem unbearable.

You may initially experience short, mild attacks, but trigeminal neuralgia can progress, causing longer, more frequent bouts of searing pain. These painful attacks can be spontaneous, but they may also be provoked by even mild stimulation of your face, including brushing your teeth, shaving or putting on makeup. The pain of trigeminal neuralgia may occur in a fairly small area of your face, or it may spread rapidly over a wider area.

Because of the variety of treatment options available, having trigeminal neuralgia doesn't necessarily mean you're doomed to a life of pain. Doctors usually can effectively manage trigeminal neuralgia, either with medications or surgery.

Signs and symptoms

An attack of trigeminal neuralgia can last from a few seconds to about a minute. Some people have mild, occasional twinges of pain, while other people have frequent, severe, electric-shock-like pain. The condition tends to come and go. You may experience attacks of pain off and on all day, or even for days or weeks at a time. Then, you may experience no pain for a prolonged period of time. Remission is less common the longer you have trigeminal neuralgia.

People who have experienced severe trigeminal neuralgia have described the pain as:

  • Lightning-like or electric-shock-like
  • Shooting
  • Jabbing
  • Like having live wires in your face

Trigeminal neuralgia usually affects just one side of your face. The pain may affect just a portion of one side of your face or spread in a wider pattern. Rarely, trigeminal neuralgia can affect both sides of your face, but not at the same time.

Causes

The condition is called trigeminal neuralgia because the painful facial areas are those served by one or more of the three branches of your trigeminal nerve. This large nerve originates deep inside your brain and carries sensation from your face to your brain. The pain of trigeminal neuralgia is due to a disturbance in the function of the trigeminal nerve. Trigeminal neuralgia is also known as tic douloureux.

The cause of the pain usually is due to contact between a normal artery or vein and the trigeminal nerve at the base of your brain. This places pressure on the nerve as it enters your brain and causes the nerve to misfire. Physical nerve damage or stress may be the initial trigger for trigeminal neuralgia.

After the trigeminal nerve leaves your brain and travels through your skull, it divides into three smaller branches, controlling sensation throughout your face:

  • The first branch controls sensation in your eye, upper eyelid and forehead.
  • The second branch controls sensation in your lower eyelid, cheek, nostril, upper lip and upper gum.
  • The third branch controls sensations in your jaw, lower lip, lower gum and some of the muscles you use for chewing.

You may feel pain in the area served by just one branch of the trigeminal nerve, or the pain may affect all branches on one side of your face.

Besides compression from blood vessel contact, other less frequent sources of pain to the trigeminal nerve may include:

  • Compression by a tumor
  • Multiple sclerosis
  • A stroke affecting the lower part of your brain, where the trigeminal nerve enters your central nervous system

A variety of triggers, many subtle, may set off the pain. These triggers may include:

  • Shaving
  • Stroking your face
  • Eating
  • Drinking
  • Brushing your teeth
  • Talking
  • Putting on makeup
  • Encountering a breeze
  • Smiling

Trigeminal neuralgia affects women more often than men. The disorder is more likely to occur in people who are older than 50. About 5 percent of people with trigeminal neuralgia have other family members with the disorder, which suggests a possible genetic cause in some cases.

When to seek medical advice

Some people mistake the pain of trigeminal neuralgia for a toothache or a headache. It's not uncommon for people to believe that their facial pain is dental-related, particularly when the pain seems to stem from the gumline or is located near a tooth.

If you experience facial pain, particularly prolonged pain or pain that hasn't gone away with use of over-the-counter pain relievers, see your dentist or doctor.

Screening and diagnosis

If you go to your dentist, an examination of your mouth can reveal whether a problem with your teeth or gums is causing your pain.

If you go to your doctor, he or she will want to ask about your medical history and have you describe your pain — how severe it is, what part of your face it affects, how long pain lasts and what seems to trigger episodes of pain. You'll also undergo a neurologic examination. During this examination, your doctor examines and touches parts of your face to try to determine exactly where the pain is occurring and — if it appears that you have trigeminal neuralgia — which branches of the trigeminal nerve may be affected.

Your doctor may exclude other possible conditions based on your medical history, the examination, and a magnetic resonance imaging (MRI) scan of your head.

Treatment

Medications are the usual initial treatment for trigeminal neuralgia. Medications are often effective in lessening or blocking the pain signals sent to your brain. A number of drugs are available. If you stop responding to a particular medication or experience too many side effects, switching to another medication may work for you.

Medications

  • Carbamazepine (Tegretol, Carbatrol). Carbamazepine, an anticonvulsant drug, is the most common medication that doctors use to treat trigeminal neuralgia. In the early stages of the disease, carbamazepine controls pain for most people. However, the effectiveness of carbamazepine decreases over time. Side effects include dizziness, confusion, sleepiness and nausea.
  • Baclofen. Baclofen is a muscle relaxant. Its effectiveness may increase when it's used in combination with carbamazepine or phenytoin. Side effects include confusion, nausea and drowsiness.
  • Phenytoin (Dilantin, Phenytek). Phenytoin, another anticonvulsant medication, was the first medication used to treat trigeminal neuralgia. Side effects include gum enlargement, dizziness and drowsiness.
  • Oxcarbazepine (Trileptal). Oxcarbazepine is another anticonvulsant medication and is similar to carbamazepine. Side effects include dizziness and double vision.

Doctors may sometimes prescribe other medications, such as lamotrignine (Lamictal) or gabapentin (Neurontin).

Some people with trigeminal neuralgia eventually stop responding to medications, or they experience unpleasant side effects. For those people, surgery, or a combination of surgery and medications, may be an option.

Surgery
The goal of a number of surgical procedures is to either damage or destroy the part of the trigeminal nerve that's the source of your pain. Because the success of these procedures depends on damaging the nerve, facial numbness of varying degree is a common side effect. These procedures involve:

  • Alcohol injection. Alcohol injections under the skin of your face, where the branches of the trigeminal nerve leave the bones of your face, may offer temporary pain relief by numbing the areas for weeks or months. Because the pain relief isn't permanent, you may need repeated injections or a different procedure.
  • Glycerol injection. This procedure is called percutaneous glycerol rhizotomy (PGR). "Percutaneous" means through the skin. Your doctor inserts a needle through your face and into an opening in the base of your skull. The needle is guided into the trigeminal cistern, a small sac of spinal fluid that surrounds the trigeminal nerve ganglion (the area where the trigeminal nerve divides into three branches) and part of its root. Images are made to confirm that the needle is in the proper location. After confirming the location, your doctor injects a small amount of sterile glycerol. After three or four hours, the glycerol damages the trigeminal nerve and blocks pain signals. Initially, PGR relieves pain in most people. However, some people have a recurrence of pain, and many experience facial numbness or tingling.
  • Balloon compression. In a procedure called percutaneous balloon compression of the trigeminal nerve (PBCTN), your doctor inserts a hollow needle through your face and into an opening in the base of your skull. Then, a thin, flexible tube (catheter) with a balloon on the end is threaded through the needle. The balloon is inflated with enough pressure to damage the nerve and block pain signals. PBCTN successfully controls pain in most people, at least for a while. Most people undergoing PBCTN experience facial numbness of varying degrees, and more than half experience nerve damage resulting in a temporary or permanent weakness of the muscles used to chew.
  • Electric current. A procedure called percutaneous stereotactic radiofrequency thermal rhizotomy (PSRTR) selectively destroys nerve fibers associated with pain. Your doctor threads a needle through your face and into an opening in your skull. Once in place, an electrode is threaded through the needle until it rests against the nerve root.

    An electric current is passed through the tip of the electrode until it's heated to the desired temperature. The heated tip damages the nerve fibers and creates an area of injury (lesion). If your pain isn't eliminated, your doctor may create additional lesions.

    PSRTR successfully controls pain in most people. Facial numbness is a common side effect of this type of treatment. The pain may return after a few years.

  • Microvascular decompression (MVD). A procedure called microvascular decompression (MVD) doesn't damage or destroy part of the trigeminal nerve. Instead, MVD involves relocating or removing blood vessels that are in contact with the trigeminal root and separating the nerve root and blood vessels with a small pad. During MVD, your doctor makes an incision behind one ear. Then, through a small hole in your skull, part of your brain is lifted to expose the trigeminal nerve. If your doctor finds an artery in contact with the nerve root, he or she directs it away from the nerve and places a pad between the nerve and the artery. Doctors usually remove a vein that is found to be compressing the trigeminal nerve.

    MVD can successfully eliminate or reduce pain most of the time, but as with all other surgical procedures for trigeminal neuralgia, pain can recur in some people. While MVD has a high success rate, it also carries risks. There are small chances of decreased hearing, facial weakness, facial numbness, double vision, and even a stroke or death. The risk of facial numbness is less with MVD than with procedures that involve damaging the trigeminal nerve.

  • Severing the nerve. A procedure called partial sensory rhizotomy (PSR) involves cutting part of the trigeminal nerve at the base of your brain. Through an incision behind your ear, your doctor makes a quarter-sized hole in your skull to access the nerve. This procedure usually is helpful, but almost always causes facial numbness. And it's possible for pain to recur. If your doctor doesn't find an artery or vein in contact with the trigeminal nerve, he or she won't be able to perform an MVD, and a PSR may be done instead.
  • Radiation. Gamma-knife radiosurgery (GKR) involves delivering a focused, high dose of radiation to the root of the trigeminal nerve. The radiation damages the trigeminal nerve and reduces or eliminates the pain. Relief isn't immediate and can take several weeks to begin. GKR is successful in eliminating pain more than half of the time. Sometimes the pain may recur. The procedure is painless and typically is done without anesthesia. Because this procedure is relatively new, the long-term risks of this type of radiation are not yet known.
  • Coping skills

    Living with trigeminal neuralgia can be difficult. The disorder may affect your interaction with friends and family, your productivity at work, and the overall quality of your life.

    You may find that talking to a counselor or therapist can help you cope with the effects of trigeminal neuralgia, or you may find encouragement and understanding in a support group. Although support groups aren't for everyone, they can be good sources of information. Group members often know about the latest treatments and tend to share their own experiences. If you're interested, your doctor may be able to recommend a group in your area.

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Background: Trigeminal neuralgia (TN), also known as tic douloureux, is a pain syndrome recognizable by patient history alone. The condition is characterized by pain often accompanied by a brief facial spasm or tic. Pain distribution is unilateral and follows the sensory distribution of cranial nerve V, typically radiating to the maxillary (V2) or mandibular (V3) area. At times, both distributions are affected. Physical examination eliminates alternative diagnoses. Signs of cranial nerve dysfunction or other neurologic abnormality exclude the diagnosis of idiopathic TN and suggest that pain may be secondary to a structural lesion.

Pathophysiology: The mechanism of pain production remains controversial. One theory suggests that peripheral injury or disease of the trigeminal nerve increases afferent firing in the nerve; failure of central inhibitory mechanisms may be involved as well. Pain is perceived when nociceptive neurons in a trigeminal nucleus involve thalamic relay neurons.

Aneurysms, tumors, chronic meningeal inflammation, or other lesions may irritate trigeminal nerve roots along the pons. An abnormal vascular course of the superior cerebellar artery is often cited as the cause. In most cases, no lesion is identified, and the etiology is labeled idiopathic by default. Uncommonly, an area of demyelination from multiple sclerosis may be the precipitant. Lesions of the entry zone of the trigeminal roots within the pons may cause a similar pain syndrome. Thus, although TN typically is caused by a dysfunction in the peripheral nervous system (the roots or trigeminal nerve itself), a lesion within the central nervous system may rarely cause similar problems.

Infrequently, adjacent dental fillings composed of dissimilar metals may trigger attacks.

Frequency:
 

  • Internationally: TN is uncommon, with an estimated prevalence of 155 cases per million persons.

Mortality/Morbidity:

  • No mortality is associated with idiopathic TN, although secondary depression is common if a chronic pain syndrome evolves. In rare cases, pain may be so frequent that oral nutrition is impaired.
  • In symptomatic or secondary TN, morbidity or mortality relates to the underlying cause of the pain syndrome.

Sex: Male-to-female ratio is 2:3.

Age: Development of trigeminal neuralgia in a young person suggests the possibility of multiple sclerosis.

  • Idiopathic TN typically occurs in patients in the sixth decade of life, but it may occur at any age.
  • Symptomatic or secondary TN tends to occur in younger patients.
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