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Trigeminal Neuralgia Sucks

Trigeminal Neuralgia Sucks

About 2-3 weeks ago I started feeling an odd sensation in the side of my nose when I’d blow it or rub my face. I didn’t really think anything of it. In typical guy fashion I assumed whatever it was it would go away. How wrong I was.

On Monday of last week I found myself in the emergency room with a very intense electical/burning pain that pulsated from my upper right teeth up through the side of my nose and along my cheekbone under my eye. I have honestly never felt pain like that in my life. Needless to say the doctor found absolutely nothing wrong and the pain eventually receded and went away entirely – until the drive home.

Since then I’ve seen a dentist that was entirely useless and said stuff like “Very interesting” and “I’ve been a dentist for 20 years and I’ve never seen anything like this”. She took an xray, charged me $120 and I’ll not be putting her on my Christmas card list. However she was nice enough to refer me to an oral surgeon. I saw him and he confirmed my self diagnosis that it was very likely Trigeminal Neuralgia and there wasn’t anything he could do. He took this way cool 180 degree xray of my entire jaw just to check for absesses or bone damage etc but found nothing wrong at all but he did offer to book an appointment right there to extract my wisdom teeth for only $500. I took a pass and decided he wasn’t as cool as I thought and then he offered me a bottle of Percoset for the pain and I put him on my Christmas card list.

Since then I’ve done a fair bit of research on TN and have decided to pursue chiropractic and acupuncture treatments as opposed to crazy anti-seizure meds or anti-depressants (I’ll just buy more whiskey). The acupuncture is the most promising. I had my first ever treatment on Monday and it was very cool and relaxing. The treatment completely supressed the pain for the duration of the treatment. I’m hopeful that is an indicator that a series of treatments will have a lasting effect.

What triggers the pain you ask? Talking, laughing, eating, brushing my teeth – basically anything that makes my lips move and brush against my teeth and gums on the right upper side of my jaw. If I sit very still and don’t move my face around there’s relatively no pain. The fun part is that every so often I get burst of pain that is far worse then what is now normal pain. This burst is what I think it would feel like if I took bar wires and attached them to my teeth and then plugged it into a wall socket for 2 seconds. Groovy.

I’ll still be in Las Vegas next week for Pubcon and in Chicago for SES. It’s amazing how fast a person can get used to a certain level of pain and block it out. I expect a certain level of acohol intake will be necessary to manage the those weeks though ;)

Here’s the classic definition along with a picture highlighting my affected area of TN from the TN support website:

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.

tn.gif

Comments

  1. Caydel says:

    Sorry to hear about this Todd. I’ve got you in my prayers, and hope this recedes for you soon!

  2. gmac17 says:

    Oilman, that sucks. I will gladly contribute to your numbness fund in vegas. I also understand that the Spearmint Rhino has an excellent treatment facility for these types of things.

  3. Brant says:

    I had a similar pain when I was flying about 3 weeks ago. I am not sure if it is the same thing, but it only happened once and the pain was intense. I had no idea what it was, but what you describe sounds very similar. I am flying to pubcon next week and am just hoping it was a one time thing. A “Vegas Mohito” should solve your problems… Spearmint (Rhino) and lots and lots of Rum.

  4. shandyking says:

    Gmac, that’s funny!

  5. pleeker says:

    Ouch. Damn, that sounds painful. Get well. We’ll say a prayer that things improve….

  6. Marc Macalua says:

    …and I thought this was another seo contest keyword :P

  7. oilman says:

    LOL @ Marc

  8. Hawaii SEO says:

    Ouch! That sucks. I hope it goes away on its own soon. (I also thought this was going to be a rant about a lame SEO contest)

  9. Rumbas says:

    Auch! That sounds bad dude, however maybe the acupuncture treatments will take care of the snoring as well :)

    Get well soon.

  10. This was very painful to read — so feel better!!!

  11. Joseph Morin says:

    Dude that sucks! And I too thought it was another crazy SEO contest keyphrase rant and said “oh no”

    Because I think you need it the most – I’ve nominated you as the ‘wildcard’ (10 points!) for the PubCon Drinking game!

    http://www.seothursday.com/2006/11/pubcon-drinking-game-update-how-can-i.html

  12. Markus says:

    Sorry to hear that! I hope your treatments work. Free alcohol remedy at PubCon if I see you!

  13. Tee CEO says:

    hey man, keep looking arpund for info and doing your treatment, I am hoping something will work for you and soon. Keep us posted when you get better friend.

  14. Doug says:

    Ouch! Try training for a marathon. Jog the strip while you’re out in Vegas. Seriously, that will spread the pain out and you can forget about your cheek :)
    Hope you feel better man.

  15. Paris says:

    I’ve read a lot over the years and somewhere in the back of my mind is something about shortange in one of B vitamins regarding this. Sorry for the vagueness. Hope it helps.

  16. Paris says:
  17. Paris says:

    Skelton WP, 3rd, et al. Thiamine Deficiency Neuropathy. It’s Still Common Today. Postgrad Med. Jun1989; 85(8):301-06.

  18. oilman says:

    Paris – thank you so much for taking the time to research that.

  19. Werty says:

    Hey Todd, i looked at what Paris linked to and did some more research into it too… supposedly vitamin b-50 (and other b vitamins) can help with it, as well as botox injections.

    http://72.14.203.104/search?q=cache:NwV5zEh7X4gJ:www.tna-support.org/newlook/sgl_files/library/newsletters/nctexas/2004Sep.pdf vitamin trigeminal neuralgia&hl=en&gl=us&ct=clnk&cd=2

    http://www.earthclinic.com/CURES/trigeminal_neuralgia.html

    Hope it goes away!

    -George

  20. Dave White says:

    Yes need to take a regular intake of vitamins and there is nothing much about it that can be done immediately.

  21. Hi Todd,

    I don’t know what this weird post is about, but I could not find another contact form or email so the last blog post has to do ;)

    Regarding this weeks rockstar podcast and the question if google can see private registrations. You can save the money for the flight to chicago and ask monti about it (kidding).

    Now Serious, have a look at this post at cshel.com

    http://www.cshel.com/domains/2006/11/google-cannot-see-past-private-registrations/

    I just came from Gregs Blog, which has a contact form with a tiny tiny font size for the test area that almost caused blindness before my comment was finished (I suspect that this is the intention hehe). Good to see that your comment section has a decent font size and I will be able to see the snow and the street while heading back to california which is only a click or two from here. ;)

    Cheers
    Carsten

  22. Sandra says:

    Todd, I’m all too familiar with all of your pain. So SO very sorry. I suffer with glossopharyngeal neuralsia. This is the 9th and 10th cranial nerves. I had it for at least 5 years or more before it was properly diagnosed. Finally! I’d been to so many doctors, hospital, everyone just thought I was imagining this out of control severe pain. So, I had microvascular decompression of both these nerves at Mt.Sinai in NYC by Dr. Chandranth Sen. Now, only the pain from the hole in the back of my ear hurts and a feeling of a tight headband is always on too tight. Dr. Sen says there’s nothing more that can be done. Meanwhile, a strange complication has happened. I NEVER feel hungry! So, I’m told that the signal from my stomach to my brain, telling me I’m hungry is cancelled by the Teflon which was inserted to stop the pain. Just wondering if anyone else on the planet has had this experience. I don’t remember what it feels like to be hungry. Yes, I’m very skinny. Just have to remember to eat. Very odd indeed.

  23. I just found out what I did on 12/1 by accident.

    My sincere apologies for my comment back then, when I abused this post to send you a message about something else. I should have read the post first, I guess. I can’t change the past, but I hope you accept my apology.

    I hope that something can be done to remedy your problem. Having an excuse for excessive alcohol intake might be funny at the first thought, but running around drunk the next years will also not be a solution. At least not one you would remember much of (the time) ;)

    Merry Christmas
    Carsten

  24. SHAWN says:

    I HAD WHAT I BELIEVE WAS MY FIRST TN ATTACK ABOUT 3 WEEKS AGO. FOR ABOUT A MONTH I HAD A SERIES OF EARACHES, HEADACHES, EYE SOCKET PAIN AND WHAT I THOUGHT WAS A TOOTHACHE. ONE DAY THE PAIN WAS SO INTENSE I RAN TO THE DENTIST THINKING IT WAS ALL DUE TO MY PUTTING OFF A ROOT CANAL. AFTER A SERIES OF X-RAYS MY DENTIST OF 35 YEARS SAID THERE WAS ABSOLUTELY NOTHING WRONG WITH MY TEETH. HE SENT ME TO A COLLEAGUE FOR A SECOND OPINION AND AGAIN NOTHING WAS FOUND. I WAS SENT HOME WITH A PRESCRIPTION FOR TYLENOL AND SUFFERED FOR A WEEK. I DEVELOPED LOCK-JAW AND COULDN’T OPEN MY MOUTH AND I DEVELOPED SWOLEN NECK GLANDS. THEN IT ALL WENT AWAY IN 1 AFTERNOON. TODAY AFTER 3 WEEKS THE WHOLE CYCLE IS STARTING AGAIN. MY QUESTION TO ANYONE ELSE THAT SUFFERS FROM TN IS HAVE YOU HAD LOCKJAW AND SWOLEN NECK GLANDS? NOTHING I’VE READ ABOUT TN MENTIONS THESE SYMPTOMS SO I’M HOPING MAYBE IT’S SOMETHING BESIDES TN. THANKS FOR YOUR HELP.

  25. Guillermo says:

    Can’t that work to treat obesity ?

  26. Christine says:

    You know, I think you just found out what has been wrong with me for years. I’ve had shocking electrical type pain running right in front of my right ear. It doesn’t happen all the time but when it does you just want to stab yourself. The pain as you know is insanity inducing. I’ve been told it is probably shingles or an inflamed nerve. Your post hits closest to what is happening. Constant pain with shocks that happen about every few seconds or minutes. That’s only when an episode occurs which lasts several days. I’m sorry you have this too. It is a nightmare!

  27. Christine says:

    Forgot to tell you that I take sublinguial (under the tongue dissolving) B12 vitamins daily. One pill of 2500mcg b12 a day. Since I started it I haven’t had any of the electrical shocking moments.

  28. John says:

    There is information at http://www.trigeminal.org

  29. Nancy says:

    Re Shawn-get yourself to a neurologist.
    Oilman-sorry for your condition, I have it too and I had to laugh at your description of the pain as chomping on elect wires. I always think of it as having an electric cattle prod stuck in my face. Unless you have the same condition, there’s no way to communicate to others how awful it is. I know it sounds cruel but sometimes I wish I could invent some sort of tazer to zap people with who think “it’s just a toothache” or that their lower back pain is just as bad. I have close significant others who still don’t get it. Take care. Nancy

  30. Michael Lee says:

    My father was diagnosed with this miserable disease about 5 years ago. He had surgery, gamma knife treatment, drugs, and tried accupuncture. The gamma knife treatment was the most useful – no pain attacks for about 4 months.

    About 45 years ago (when I was a 12 year old electronics geek and ham operator) I read an article in Popular Electronics about experiments wherein dentists were doing procedures using only sound as the analgesic: music in one ear, and white noise in the other ear. It worked – for about 30% of patients. For others it worked less or not at all. I’ve seen nothing about that since then despite some internet searching. I did read of a University of BC PhD
    dissertation where they used music to see if it reduced post-operative pain, but they didn’t try the white noise.

    So – I built a little box for my dad. He played Lawrence Welk on one ear and the box generated white noise in the other ear. The pain stopped! It often stayed stopped for several hours after 30-40 minutes of this “treatment”.

    Today I am just completing the circuit board layout so that I can produce 10 of these for some clinical testing.

    I expect that this will bring relief for some – and not for others. My guess is that the white noise distracts the brain from the pain. I am hoping to get a dozen of these out to pain clinics so they can try them.

    If we proceed with this, the box will probably sell for about $100. It will plug in to any music source, and then you plug headphones in to it.

    Good luck to you.

  31. Ken Onos says:

    My Dad is developing a symtom that include swolen jaw(lower),the electric shock feeling(but only when the place is touched),can’t eat or drink due to the pain that spreads over the head when anything passes through the throat.Though he doesn’t have a sore throat,he can’t eat anymore,while he’s having a bleeding gum too.
    Could all these be a sign of this illness as well,please reply me. I need to know.(Ehen,he says he doen’t have headache,but when he’s in pain,you feel like he’s having headache)

  32. Jason says:

    Christine more or less hit the nail on the head. B12!!! Thank goodness it is a water soluble vitamin as I’m up to 7mg a day. It doesn’t make everything go away, but it sure helps.

  33. Doris says:

    My sympathies! Confirmation for me of TN recently came from my doctor after self diagnosis – - after four dentists and a chiropractor made their shares off me. Of course I should have been aware as my mother and her five sisters all have – - or have had – - The Curse!

    One big question is, Why are dentists so unaware? Do they need a class action law suit to receive a course on TN in dental school? My root canal specialist did a root canal on my only molar then had the audacity to say “It must be the other tooth causing the problem!”

    You’re right, It sucks! But, good luck!

  34. Judy says:

    I am so glad there is so much Info on this,I have printed just about every thing I can get my hands on so when I see the doctor this week i will tell him that I do not believe my problem can be solved by the dentist.the last trip there He gave me a phamplet on TMJ and charged me 65.00 for a visit…

  35. Kathy says:

    I had TN in all three divisions for seven years. My life was turned so upside down that I went back to school for a master’s degree in rehabilitation counseling. I was thrilled to do my internship at the Trigeminal Neuralgia Association.

    Through prayer, I have been free of TN for three years this October. God bless you.

  36. Megan Poetzinger says:

    Michael Lee, your device sounds like it will help tinnitus suffers too. They too use white noise as a therapy for tinnitus. Check out the American Tinnitus Association
    http://www.ata.org

  37. Cezanna says:

    My suicide pain has been intermitant until today. My dentist sent me to the myofacial pain clinic 2 weeks ago at the first sign of MS-related trouble. My very special Pharmacist, who I trust more than my doctor, also said vitamins might be the way to go so I appreciate all the confirmation your friends have given. B12 and Thiamine, then to compliment the Gabapentin prescribed
    Thanks all!

  38. JaynesInPain says:

    I am sorry to hear you too have TGN. I had an infected rootcanal with 3 repeated rootcanals & lots of antibiotics. Finally the endodontist performed an Apicoectomy (enter the root through the top of the tooth through the gum). I had shingles at the time on my back. Anyways-I had extreme pain in my face, my ear, headache & my eye kept tearing. The symptoms wouldn’t go away. I saw an ENT, then Oral Max Facial Dr. who said that it was TGN most likely caused from prolonged irritation to the nerve & scar tissue (&possibly shingles in my system). I now get bee-sting type pains & typical triggers. I am currently on 600mg Tegretol daily. I’m not sure that it’s really helping. Some days there are more attacks then others. I will try the B12 others suggested & maybe the acupunture (if my insurance will cover it). Wouldn’t if my great if we fell into the category of those who get it but then it goes away for several years. One can only hope & pray!!

  39. Floridagirlal says:

    Does anyone have any information on recovery from microvascular decompression surgery? My mother had this surgery for TN last week and she’s experiencing some interesting effects after surgery. My concern is that she is actually withdrawing from the methadone and other drugs that she’s been taking for the last 5 years to control the TN pain. I find it hard to believe that her neurosurgeon did not provide any info on withdrawal from the pain killers. Any suggestions on where I may look for more info? I’ve searched the internet and haven’t found anything….

  40. Marsha says:

    This is the first time ever commented on a website. Been suffering with TN now a solid five weeks, having had many attacks previously since first diagnosed with “mild case” of M.S. in 1994 by the preminent doc in the field in NYC. Don’t know what brought it on, but I suspect extreme mental stress (writer’s block lasting years, test-taking for better paying work, madly in love but unrequited, that kind of stuff)…but this is the worst ever… shocking pain and numbness, started on left side only, now spread to both sides of face, temples upper jaws along cheekbones (someone above mentioned lockjaw…yeah that’s is), also tooh and sinus pain, cluster headaches all over skull…you name it, I’ve got it. So completely unbearable and not responding to any of the neurologist medications: baclofen (used to work, now doesn’t touch the pain, makes it worse); tegretol, never worked, but tried it again just to see; had to pay for these out of pocket in addition to PCP idea of blocked eutachian tubes, adding zyrtek, musinex D, nasal spray to the cocktail, all of which has just made me sicker and sicker. I also realize this could be shingles, with burning and itching rash on torso and chest preceding attack. Now I’m supposed to try Tripetal, but am not going to buy it without trying doc’s samples first. I now have a bunch of medication, none of which is any good.
    Going to try the vitamins B-12 and B-50 and step up my prayers…been too miserable to do anything but go to work, come home and stare at the ceiling in a stupor & paroxysm of pain waiting for it to ebb. It almost never does relent, even for a moment, and it I imagine that it does, it comes back with a vengeance.
    Thanks for the rolling testimony…it’s a huge help.

  41. Kathy says:

    Oilman, how about an update on your progress with battling trigeminal neuralgia?

  42. sherry says:

    I have had TN for the past 14 years, went through the whold dentist thing, etc. Take all the meds available including an antidepressant. Had Gammar Knife it did no good , in fact sometimes I think its worse since then. Have recently started going to an acpunturist it has helped until last week, I went than on Saturday at work had the worst attack. Have found that getting in a warm warm bath of water helps to ease it and settles it down. Also last week got myself a heating pad and that also works. I want to give my body to science to study this as I have read it could be inherited and would never want my family to get this, or anyone else. My sister has MS but doctors say that has nothing to do with this. Was looking up vitamins to take and try to see if that would ease this and found you.

  43. Dee says:

    Just been diagnosed with TN and hating every minute of it. I have actually been complaining of stabbing pains, normally behind my right eye, but always on the right side of my face approx. 5 yrs., many docs and 1,000s of dollars later I’m not a hypochondriac after all.
    I used to only have 1-2 incidents every few months. No one has been able to diagnose me until recently one day in the middle of shopping with my husband the pain started and never went away to the point of me passing out right in the middle of the store. I was taken to the ER after 5 days there and 4 MRI’s a C-Scan and 4 docs they agreed to TN. The worst part is the seizure meds are replacing my stabbing pains for constant migraines and nausea. I haven’t been myself since.
    Searching for answers.
    Dee

  44. Marni says:

    HI There
    I have also been suffering from these painful headaches for the past year and thought it was all in my head sorry for the pun Yeah found out it is occipital neuralgia and very close to and may still be trigeminal or as well as. I have been going crazy day after day and it seems to come in waves and if there is a seemingly quiet day without pain WHAM there it is again! I am on pregabapentin and carbamazapine as well as amnitriptilene because I have an allergy to some of the stronger pain killers. Now I have lately tried the lidacaine cortisone injections directly into the sight three times without much success and will try the botox injections next they are very expensive and not covered by health insurance. I’ll let you know how that turns out. It is sort of nice to know this is a real affliction and there are some people out there that actually know what I am going through. I don’t mean I am happy you have it too, no I don’t mean that at all just that some people I speak to just have no glue about it and that I feal better to know I am not just crazy! One of the first neurosurgeons I saw had the nerve to say “Keep smiling one day you will wake up and all the pain will be gone” Well doc I am still waiting.

  45. Little star .. says:

    Hi todd (oliman) ,,
    I had TN 2 years ago but I don’t discover what it’s it til few months ago ..

    I was think that’s related to denral disorders & I vesited 4 doctors & make a 3x_rays
    the last one told me that’s no thing in ur teeth

    I was very depressed because the pain very sever it was like a shoks but I wasn’t konw the resone

    & some people told me maybe ur under stress and just imagin this pain :(

    In one week the pain was very sever , I coudnot brush my teeth for more than a week , coudn’t eat , coudn’t open my mouth , coudn,t touch my lip & even smile & talk

    I went to ER & didn’t know what should I tell them & how to describe my pain

    but fortunately I had a v.good indian GP doctor
    and he told me that my case callen TN ..

    the wores thing that some people say even if it gone .. it’ll come again & again .. IS THAT TRUE ?!

    I’m just 19 years old girl ,, Does the acupuncture suitable to my age .. ?!

    GOD BLESS YOU

  46. Nowadays that can arrive when there is an infection around of a tooth root, one of the best way to save this tooth and eradicate the infection is to applicate an apicoectomy.

  47. Declan says:

    Just read your TN post. Whiskey works for me. Only have occasional bouts and have been pain fee for months now. Once in a while I think back fondly of my pain, and feel a certain amount of pride that I am one of those rare individuals who have to endure the most severe pain known to medical science. Nice to read a post on TN which treats the affliction with a little levity.

  48. Janice says:

    I’m a 64 year old female that has suffered intermittantly with TN since my 40′s. It is hereditary. My mom had it and two of my three adult children have had small episodes so far. Have been told it gets worse with age. Through the years I found I can lessen the severity of an attack and somethimes “nip it in the bud”! At the first sign of a warm feeling (or hot area of my face) or with what feels like a beginning toothache, I take a painkiller (Darvocet works best for me) and put a heating pad on the area. It is very important to stop your activities and keep very still. Don’t keep going or moving around as the pain gets worse. I go to bed for the rest of the day or sit quietly in a chair. My doctor gave me a prescription for B12 so my husband can give me injections and I don’t have to get to her office when I am in pain. Car air conditioners blowing on my face, sitting under an air conditioning vent, or any type of cold weather or wind are my main triggers. The good news is I have sometimes gone a year or 18 months with no attacks and by being vigilant and learning to recognize the warning signs early.
    For more information check out endthepain.org.
    Hope this helps.

  49. sue (UK) says:

    Hi,

    I just came across this page as I was searching for info for my Trigeminal Neuralgia. I haven’t read all the threads but some are talking about taking pain killer’s but from my knowledge those will do absolutely nothing whatsoever to dull the pain unless you are prescribed the anti epeleptic type drugs such as Tegretol or similar.

    I last had it around 8 years ago but then it can lie dormant for week, month or years…its total hell isn’t it?

    Sue

  50. Janice says:

    Sue,
    I don’t take anti epileptic drugs and the Darvocet works for me. In a full fledge attack, don’t let the painkiller wear off or it takes a lot longer to kick in.
    Yes, it’s hell!
    Janice

  51. bill says:

    I found some interesting information about Trigeminal Neuralgia here. Check it out!

  52. Lee says:

    Man! It sounds like this TN condition is really horrible. It’s pretty disturbing that the first dentist you saw didn’t know anything about it. Not surprising, though. I am the inventor of a biofeedback device to help people kick the habit of nighttime teeth grinding (bruxism), and I have read a lot of dental stuff but had not run into a description of this condition before. Thank you for educating me on it. I will put a link to your post on the new free resource website I am building for people who suffer bruxism. I wonder if bruxism can trigger the onset of TN by putting excessive pressure over time on nerves. If you want to borrow one of my devices to measure how much you clench and grind in your sleep (to see if it might be related), let me know, and I will loan you one for free. Clenching often has no other symptoms if it’s not accompanied by grinding, because pure clenching doesn’t wear away tooth enamel, so dentists often can’t tell you it’s happening.

  53. Pam says:

    Oh man. Found this site while looking up the whole Vitamin B theory. Is it only vitamin b 12 or a vitamin b complex? As most of those here, i was diagnosed about 5 weeks ago after having some nasty-ass dental work. Gabapentin worked like a charm the first 4 weeks, then all of a sudden stopped. Doubled the dosage (600 mg 3 times a day) and still have pain. Another root canal and a round of antibiotics. Next week the neuro chick and hopefully she can give me some new meds that work. I like the idea of music and white noise. Acupuncture – no way. Whiskey – maybe. My triggers are car driving, strong wind, food, coffee (really bad), and sometimes it just comes. Arggghh! Anyone out there with any new advice? Would also really like to hear how Oilman’s doing.

  54. Safiya says:

    I feel for everyone here who is going through or has gone through this horrible, horrible ordeal. I too deal with it and have been for about 18 months now. In the beginning it was constant on and off for about 4 months, and then it left completely for over a year. It has been back since March with 3-day periods of relief here and there. What I have noticed is that it is VERY important to sleep in the correct position. If I sleep in a way that puts a lot of pressure in the cheek area, or if I sleep on my side in a way that “squenches” up my shoulder against my face, it’s on! Also, if I eat too much starch from white foods (bread, potatoes, and rice) or if I eat too much sugar it flairs up. I try to eat pretty healthy (raw vegan as much as possible.) And it’s while I’m immersing myself in green veggies, drinking lots of water, and staying stress-free that it goes away. As soon as I “cheat” it comes back immediately. I have also just started B-vits this week, and noticed a huge improvement. OH…and watch your posture! Oh man, I cannot tell you how important this is. I don’t know about you, but being on the computer for hours, and starting to slump, that’s when I can feel it coming on. Try to keep your shoulders from hunching up. Anything that is going to cause tension in the shoulder/neck/facial muscles will bring on a flare up. I hope this helps us all. Oh, and last thing…another thing that was really helpful to me when I didn’t know what it was was the herb butterbur. This is really good for migraines. Do a google search on it because it’s important to get a standardized brand that is free of a certain chemical. It was really good, but because I don’t like the thought of taking anything on a regular basis (can’t stand the thought of being dependent on any substance), I just don’t take it anymore. Especially since I know what it is now and try to manage it in all of the above ways. Best of health to you all! And thanks for letting me know that I’m not alone.

  55. Dave says:

    ouch, this sounds extremely painful.

    I wonder if essential fatty acids such as the kind found in Flax Seed Oil or Eudo’s Oil would be helpful in any way.

    These essential fats are important to our nervous systems. I wonder if a regular dose for a couple of months would have any impact on symptoms.

    In any case, if they say this is the most painful affliction known to man – I know it has to be bad because I’ve felt some pretty intense pains before.

    I hope a solution one day presents itself to you!

    Dave

  56. Joy says:

    Very sorry to hear of all you people suffering. My husband has had this for about five years, and has also been on the carbomazapine, and tried acupunture, more recent facial relaxology (similar to acupuncture) at the dentist. We’ve both been through alot with this sucker, it’s got no discernible pattern. The acupuncture worked for six or eight months for him, pain free and he went completely off the carbo….then it came back and unfortuntely the time it takes to resettle the drug in the system sucks. We run our own business…so it’s a question or whether he can talk….is he too doped up and dizzy…..it’s awful for him. The acupuncturist is really the best shot I think, because a) they can block the pain receptors and if he can keep going and not stop when he feels better, they can work on the very deep problem over a long term. He’s been doing the whole routine in the last couple of months and he’s in agony so now we’re back to the acupuncturist on Monday although he’s pretty doped on the carbo drug. I have to say….I hate that drug…at least with the acupuncture you get the good side effects of sleeping better and more energy. The other problem with the carbo (and presumably the other antiseizures) is that any other drug you take with the (like antibiotics) will counteract them. This hate trigemninal neuralgia, it makes my very happy and healthy husband a mess and I can’t help him at all…..
    Very, very interested to know how oilman is doing….if he was just diagnosed and did the acupuncture first before ever taking any of the drugs, I’m curious to know how it worked and how long it lasted. Just a reminder though folks, when you are feeling good….keep going for treatments…..preventative medicine. My babe always gets to feeling good and then bam….he wants to quit the drugs and acu and all the good stuff. Trying to keep it on a more even keel…….acupuncture regularly…..less carbo or maybe one of their herbs if we can wean him onto it.
    Good luck to all you sufferrs……this is the 21st Century…hopefully they can get a grip on it.

  57. Joy says:

    To the lady who asked about lockjaw…..my husband had his jaw broken in a bike accident when he was 10 and has had some complications with it off and on for years. Since he got TN about five years ago…..he’s had two severe salivatory gland infections (which resulted in a similar round of dental stuff to that the people above describe) and although the two are technically not related, they are both on the same side of his face, he already has a bum jaw, and the pain for him runs down his neck as well and into the shoulder that he put out many years ago and is still a little bit screwy. In other words, that whole side of his body is affected. I’m thinking Yoga might help some……nothing I’ve read will cure this baby…it’s a question of constant damage control I think. Now that he’s doing the combo of carbomazapine and the acupuncture…..after the last salivatory gland thing they sent him to a different dentist (dental wellness dude) and he’s doing the facial relaxation electrical shock thing to him. My husband has been describing the sensation as like his jaw is going to lock and there has been some discussion off and off about TMJ (jaw thing) which came up during the saliva gland infections. It seems he doesn’t have that….but does he? Who really knows? My personal opinion, they are all related, I’m guessing some of you have back problems…neck problems…….dental problems (man I’ve had those) etc., previous sports injuries…..various things that contribute…or trigger the little bugger. I see they have come up with some endoscopy surgery, less invasive and more direct to the nerve, they don’t have to push the brain aside so less complications and less numbness….I’m hoping they can get this perfected in the next couple of years because I’m sure my babe will be having surgery at some point.
    Let me know if you hear any good news about how to battle this…..in the meantime……do whatever you need to to kill the pain….whatever works.

  58. Matt says:

    Guys and Gal,
    I have to post here. My name is Matt. Today is June 22nd 2008 and I was in surgery on the 20th for type one TN getting micro vascular decompression. I was cut 2 days ago on Thursday morning from 8-1pm. I spent until 8pm Thursday in the ICU to come out of the fog and stop feeling like I was run over by a car (Demerol and morphine IV helped there). As soon as the spinal fluid filled back up (they must drain some to move you cerebellum) it was like a light switch, I hoped up and walked a bit and immediately grabbed a glass of crushed ice. I thru the whole glass in my mouth and crunched like crazy on my left side. It was the most beautiful thing for me since my first orgasm (well not that nice, but close). So long story short, for me the decompression seemed a last hope after 8 months of tegratol and Gabapentin/Neurontin only edging less than 50% of the pain. I am not here to tell anyone what to do, but this surgery fixed me 100% with absolutely 0 side effects, no numb no tingle no loss of vision no loss of hearing, nothing. I can feel every whisker on my left face. I live in St. Louis and had the best neurosurgeon in the Midwest and I am happy to share any information that could help anyone reading this to be rid of this AWEFUL DREADFUL nerve pain for good, the decompression surgery is a lifelong fix in 99% of the cases out there as anyone seriously reading this far down on this post knows. Here is a link to a pic of the cut if you want to see it. http://img528.imageshack.us/img528/2333/img1147smalljp9.jpg mine was a bit bigger than most he said as he found a small patch of blood vessels up top, fix those but thought of the amount of pain that the tegratol/Neurontin was not fixing and looked a bite further. His exact words were “I looked further down slowly pulled a lower portion and saw this huge blood vessel coming over the top of your 5th nerve like a monster coming over a mountain”. My guess is that some surgeons would have stopped at the top little portion and closed. The stint he placed for the lower portion was more like a small mattress rather than the small stints (grains of rice made of Teflon). Like I said I am happy to help/supply information to anyone who might like it (I am in the computer industry and I know it is nuts posting your email online, but this is important and I want to help anyone I can so my email is yourgonnaneedum@hotmail.com . Not saying this is for all, but it fixed me.

  59. Tillotson says:

    This problem really sucks. I can only emagine what you are going through though I get to see it every day. My 6 and 1/2 year old son was diagnosed with this problem. He is on tegretol to control his pain. He gets severe migraines and his pain is on his right side of his face. His pain goes from his ear to his mouth. Have they told you how you got it? My son does not have a tumor, his nerves are not pressing up against the nerve, and his mylen sheth is not damaged. This is really bad because there is no pediactric testing done. I have not tried other things on him such as the needles and the chiropratic, but I am wondering if I should. An associate proffessor/neurologist at Harvard medical and a pediatric Neurologist at Massachusetts General both in Boston have taken an interest in my son and would like to help him. I would like to find more people that have or had a child with this. It is so extremely rare for a child to get it and no one knows what to do with him because of his age. They tell me that there are tests being done but only for adults and that they can only just try to control his pain. This is so sad because he is a very happy care free little guy and when he is screaming in pain there is nothing I can do. If you ever find out anything that works please let me know.

  60. Sherry says:

    Dear Oilman,

    Can you tell me how you are doing with your TN since Nov 2006? Have you decided on the surgery MVD? Only asking because I wanted to see if you felt this was an option as time has lapsed. I am also faced with the decision of surgery but it totally terrifies me and I keep hoping there will be some other kind of option. I have tried every kind of pain medication and anti-seizure, anti-depressant etc. The pain has not subsided so why bother with the pills if there is not significant relieve?? All this talk always feels so depressing but I just need to talk to someone about it. I have emailed Matt on this website..did you see the pictures he posted of his surgery and read his comments???
    Oilman, please email me.
    sherrylorito@gmail.com

  61. Joseph says:

    Janice, thank you for your post. I was looking for exactly that, for stories from other people with TN who can detect an attack coming on and do something about it. I haven’t had a major attack in over a year, but I have had times when I feel a kind of low grade burning pain (well, compared to a full-on TM attack, isnt it ALL low grade pain? ;-) )Sometimes it’s not even a sensation I can describe as pain, just a sort of not-rightness, a feeling of awareness of where the nerve is, where the bones are, where the openings in the skull are which allow the nerve through, like the proprioceptive sense of knowing where one’s arms and hands are but for the internal bits served by the nerves for which a person normally does not have specific awareness. It sets up in my ear, the back of my eye, deep inside my nose, and along the roots of my teeth. When that happens, I will usually get warm, cover up my ear, and take Neurontin for the next couple of days. The triggers I’ve been able to figure out so far are similar to yours – usually a cold breeze over my ear on the “bad side”, or a rapid change in temperature from warm to cold.

  62. I have trigeminal neuralgia says:

    It’s been a few years since you’ve been diagnosed but I am curious to know how you are doing. How did your adversion to the pain medicines go? I was in an accident and have TN on both sides of my face and have had it for 2.5 years. I am a 27 year old female and it’s weird to have something so painful that people just can’t see. I just really liked what I read here and wanted to know how it has progressed for you. When the pain is really bad I have learned to think of how wonderful my toes feel. I hope your toes feel great.

  63. claire Fresneda says:

    Its 1.30 in the morning and i`m having an attack as i type.. So i`m saying sorry of the typos and grammer.. I`m a 40 year young lady who has had this illness now for 3 years.. Longer really but it will be 3 years this Oct since i had the Decompression. It was perfromed at Vancouver General Hospital By Dr. Redicop.. Once my head was open they saw that it was an unusual case than the blood vessals were not just rubbling with the nerves but growong in and out of them . They did what they could .. yet it was not successful. I live in constant pain with attack after attack with no end on sight.
    I take tapamax max dose( well as much as i can stand as it hurts my arms and legs) which sometimes helps.. no pain killer works
    I need to know .. need someone to tell me what is being done to help us people who suffer so much what iresearch is being done to help us.. there is only so much i can take.. becous eof this illness i have lost my life as i have known it.. my job house friends.. everything.. even me.. with no end or help in sight there is not one person whom can help ..

  64. Barb says:

    My Dad asked me if I’d ever written anything to those suffering with trigeminal neuralgia….well, I will now, because he is a firm believer that accupuncture has worked for him!
    He’s suffered with this for about 12 years (now 82 yrs old), has had 2 “gamma knife” treatments. The first worked for about 5 years, the second for about 2 years. When the pain would start again, he would take tegratol, which really didn’t make him feel to good. He finally decided to give accupuncture a try. He had about 6-8 treatments, the last in April 2007. Since then he has had no pain. He is thrilled with the results, and the family prays this will continue to work, as seeing him in the pain “kills” us all.
    I hope this encourages someone out there!

  65. Kristin says:

    TN is awful… I got diagnosed in April 08, had my first attack in October 07… Cabamazerpine (Tegretol) helps, but I’m allergic to it… Gabapentin works half way through… Vitamin B shots seems to help so far and fresh air, believe it or not, every time I get an attack I go outside for a walk or just stand still and inhale fresh air and after 5-10 min it releases… Did anybody from you noticed the same effect?
    Besides of that I’m also taking B12 Complex, Magnesium and Potassium supplements, suppose to strengthen your nerve system, but check yourself out if you actually can absorb it… And the main thing that helps me is PRAYER. I’m also praying for everybody who suffers from this disease, please don’t loose hope and don’t give up, it will get better… GOD Bless you with healing and complete restoration! God cares, believe me, without Him I would not be able to stand this pain… He is the good Shepard who carries His sick sheeps around His neck until they’re better. So cry out to HIM for help and hang in there!

  66. Bev says:

    My aunt has had this condition for years. She is in her 80′s and was taken to hospital by ambulance last Wednesday because she hasn’t been able to eat or drink anything due to the pain. In the past, the symptoms would last for a while then go dormant for a few months. Now it’s constant. She’s tried acupuncture, didn’t work. She’s on several medications: pain killers, heart & cholesterol pills, and other meds that are designed for other illnesses but seem to work with this condition too. The liquid morphine also doesn’t work any longer and leaves her in a zombie state, and still in pain. The neurologist specialist is seeing her today and they (the docs) will be concocting a new medley of drugs for her to try and ease the pain. They won’t send her home until she’s improved so we’ll see what happens.

  67. meg says:

    I just got the diagnosis of trigeminal neuralgia from an ER doc, and my dentist (who i saw for pain under two teeth a few months ago) thinks either i’m clenching my teeth or I need a root canal. As I was not expereicning any pain when eating or any real tooth pain (my jaw hurt more) I was prety sure it was TN.

    Now (a few day after starting my apo-gabapentin), one of my molars suddently became sensitive to temperature and touch, and my other pain has decreased (although not gone completly) has anyone ever experienced this? I’m suddenly up in a kuffufule, what diagnosis do I have? or GASP! do I have BOTH?

  68. george says:

    been dealing with a bout ot tn for 10 days, tyrung some homeopathic stuff for 4, seems the voltage got turned down

  69. george says:

    been dealing with a bout of tn for last 10 days, last 4 days trying some homeopathic stuff, today the voltage seems to be turned down. if the gov’t could duplicate tn they could use it at gitmo and other places. i know i would talkj

  70. cannedguds says:

    Have you tried remedies for clenching jaw ? Maybe your condition can be associated with temporomandibular joint dysfunction. Why not try to read more about TMJs? It’s just a suggestion but perhaps it can help.

  71. Bobbi says:

    I hope the acupuncture works well for you, my gran has had great success in dealing with various aches and pains that she has.

  72. Fran says:

    I love you. you are only the second person I met who has TN. My orthopedic doctor has it. You and your emails were like a support group for me. I did bite the bullet after a year of pain and took the anti seizure drugs which I am on, They do keep the pain at bay and manageable or else I am just learning to live with the pain when it hits. My pain is always there as subtle, and then it goes for broke and really hits like a ton of bricks…like sticking your finger in a socket as you said. I have been at meetings when it hits and I just go into a trance and total relaxation of face and jaw. Some thought I was having a seizure. Guided imagery, biofeedback, gentle yoga relaxes me. Next I will try acupuncture and see if it works.
    Thank you for sharing and the support and a good laugh helps. Now I’ll enjoy a glass of bubbly or maybe two well before I take my pills…don’t wanta mix them.

    Fran

  73. melinda says:

    “one of my molars suddenly became sensitive to temperature and touch, and my other pain has decreased (although not gone completly) has anyone ever experienced this? ”
    Meg. I have had this exact same experience today. I have been in pain fior nearly a week and haven’t come under the regular care of a doctor yet. I do see a reflexologist, and I have been imbibing Vitamin B12.

  74. Ben Munoz says:

    I wanted to pass along this site dedicated to nothing but helping patients with TN: http://www.livingwithtn.com.

  75. cyndy says:

    I have just found all these posts when I was looking for some helpful advice about acupuncture for TN. My 77-year-old mother is a sufferer for the past few years and it is heartbreaking to see the effects on her.

    The side-effects of the meds are nearly worse than the condition. She takes shed-loads of pills: large doses of Tegretol and Lyrica anti-convulsants, as well as beta-blockers for blood pressure, Zovirax for herpes/shingles virus, and others. In recent weeks the pain is no longer being controlled by the drugs and she still has all the down sides like drowsiness, blurred vision and mental confusion.

    She is willing to try other treatments if her doc agrees. We are not too keen on invasive procedures just yet though. having read the posts I think we will try vitamin B12 and acupuncture.

  76. Peter says:

    You definitely need to see a neurologist and to get some anti nerve spasm medication like tegretol or neurontin. There are several high tech surgeries available but they should only be as a last restort. Good luck Peter.

  77. John says:

    Hey, even one of my friend had the same problem and got some relief through acupuncture. Will let you know more about this in the nearest future possible. God bless. John.

  78. Hi Tod , you have my sincerest sympathies , and I admire your positive outlook despite your painful predicament.

    My family also has a weird genetic disorder that causes tremors among males , but thankfully it ended in my grandfather’s line but my other cousins weren’t so lucky and it was heartbreaking to watch.

    May you have more strength and support.

  79. Valerie Anne says:

    Yeah. I suggest you try Acunpuncture, instead of knocking yourself over pills, pills and tons of pain relievers. Good luck and hope all will be well with you.

  80. Mike says:

    Have a look – this sure worked for my dad after years of TN

    http://www.soundpainrelief.com

  81. snowwhite says:

    hi all, i have been suffering for 8 months now. the pain is excruciating, so far i am taking trileptal but seem to need to increase my dosage every 3 weeks as the pain keeps returning with a vengeance, the doctor has warned me that i will probably need cortisone therapy, i would do anything to get rid of the pain, i am a mother of two boys and when i get tn it is mostly a 24 hour thing until i increase my medication so it lasts for days, would love to hear more of your comments.

  82. Scott says:

    Hi Oilman,

    I found your blog post via a search on Google for Trigeminal Neuralgia. My friend Ben and I started a patient to patient support group called LivingWithTN (www.livingwithtn.org) for people with Trigeminal Neuralgia. Check it out. We started it a month ago and already have 70+ people providing support to each other on it. You can share your experiences and draw support from the folks there. Great little community.
    cheers,
    Scott

  83. Eddie says:

    I started taking oral baclofen 1 year ago and I wish I had never started. My dr. prescribed way too high of a dosage, (60mg per day) and the results were dizziness, lethargy, and me not feeling like myself for over a year. I’ve been trying to cut back (successfully made it to 45) but the withdrawls have been awful. I’m delusional at points and often feel like I’m going crazy. If I were you I would do anything but baclofen. I’m trying to get off of it completely and just go to daily stretching.

  84. Tim Bearden says:

    Wow I just learned about this disease in medical school. Sorry to hear.

  85. This is horrid. I am so sorry you are having to deal with this like you are . I hadn’t ever heard of this disease before . Now that I have I want to research it more . Maybe one day they can find a cure for it no one deserves to suffer like this . Feel Better soon !!!

  86. I hope its gotten better. I was very interested to read up on this. It sounds just horrible

  87. Colin says:

    Wow what a painful experience.

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