Hi there. I’ve read many posts on the site and wanted to join in. I was just diagnosed with TN in the last few weeks. This all started 4 weeks ago. I went to bed one evening and my face & jaw felt achy and sore, just on the left. Not stabbing pains just very unusual, not a headache, just soreness. Woke up fine the next day and went about my day. I was out shopping and my face started to ache again and feel stiff and sore, so I cut my errands off and went home. This continued on and off for the rest of the day. The next day I got up, again feeling fine and then the stabbing shock in my face hit me. It was my lower jaw, teeth top & bottom, into my eye & temple. Lasted about a minute. This continued for most of the day, it seemed like talking or opening my mouth would start up another attack. The left side of my face went very numb, sort of like when dental freezing wears off, lips, tongue, nose. You could draw a line down the middle of my face and all the pain was on the left. My husband insisted we go into emergency. The doctor who I saw told me it sounded like Trigeminal Neuralgia. Offered me some pain meds and that was it. I’m not much for medication so I just said I’d try to get by with Advil. The following day was awful. Felt like a hot knife going into my jaw and all of the heat radiating through my teeth and into my cheeks. In between the shocks my jaw hurt and felt stiff, eating and opening my mouth was painful for days after the shocks settled down. Fast forward a couple days, went to my GP, who also agreed TN sounded likely and put me on Lyrica. A couple of days later I was feeling better but my teeth, especially my furthest lower molar was sensitive, so off to my dentist to rule out any dental issues. She agreed it sounded like TN and referred me to a Dentist that specializes in Facial Pain. He heard my story and did an exam (no x-rays) didn’t spend much time looking at my teeth and told me I had TN. So I am coming to terms with this and finding it so hard to accept this diagnosis based on very little examination, just going on my description of pain & my response to meds. I suppose I’m lucky that all 4 doctors seem to agree. I’ve read so many stories of people spending years & years trying to find answers. Anyhow…I’m waiting to go to a neurologist in a couple of months. Just trying to manage pain with meds & manage the side effects of the meds. This is very scary and no one seems to understand what its like to go through this. It is really great to have a place like this to come for support from people who’ve been there & understand. I sure don’t think I have the “classic” definition of TN going on but it seems everyone has a slightly different story. One other thing to note, over the last couple of years I have had about 6 episodes of quick ice pick like shocks in my left ear. It would last intermittently for a day or two. The shocks were very painful & startling but quick and over quick. I alway just though my earplugs had created pressure on my eardrum and put it down to that. I wonder if this was related?? Many thanks to all who are here to lend an ear & give advice. Cheers
You’ve described exactly how my atypical TN started 13 years ago. I have 30 years of migraine so when it started I thought it was some sort of odd migraine symptom. I had what I now know were flare ups intermittently for about a year that were very mild and very short lived and usually around the time of a migraine so I figured it was connected. Then one weekend all hell broke lose. Do you have migraines as well?
There is such a thing as atypical TN (ATN). This involves the numbness and pressure you’ve already mentioned as well as burning/aching as opposed to shooting electrical shocks. Although, of course, ATN can have shocks and TN can have aching burning feeling, it seems to be whatever you have to most of helps determine what you have.
Good for you for already ruling out dental issues. Be careful! You don’t want to have dental work done you don’t need so be sure to stay with the dentist that works with facial pain. Even though brushing your teeth can be a trigger do everything you can to maintain good dental health, you don’t want to make a bad situation worse by letting your teeth rot out of your head. You may want to start using a fluoride rinse to help things along, and, you can always “brush” your teeth with your finger. I have had my teeth feel loose with an ATN flare so don’t freak out when your teeth hurt, don’t run to the dentist, give it few days and determine if it’s a flare up.
As for the ear plug thing, no your ear plug has nothing to do with the pain in your ear, the nerve involved in that is deep in your head and not around your outer ear. An ear plug doesn’t come close to your ear drum. I sometimes get pain deep in my ear, it feels like it’s six inches deep inside my head and makes me sensitive to noise, I have found wearing a soft ear plug in that ear helps enormously when it acts up – especially since I used to be on the phone 8 hours a day.
Couple of things for you as you get started with ATN/TN:
– You need a MRI, this will rule out major problems like a tumor pressing on the nerve in your head as well as more minor things like blood vessels wrapped around the nerves…the thing is, especially if you have ATN, the odds are very high that the MRI will come back normal, don’t let this frustrate you
– ATN/TN is typically diagnosed via description of events vs. any medical test, start a journal now of what happens when and for how long so you have a solid history to discuss with a neuro
– ATN/TN will not respond to over the counter pain killers
– TN will typically not respond to pain killers in general
– ATN will often respond to narcotics and you may want to try a lidocaine patch, in the USA and Canada it’s available at the drug store as SalonPas for not too much money…cut the patch into strips and run the strip along the nerve branch that is flaring up, lidocaine is a topical anesthetic and people have had good luck with it (I swear by it personally)… without a prescription it’s 4% strong or with a prescription you can get 5% ---- google for a diagram of the TN branches, you’ll probably be able to pinpoint which branch is causing your pain and work from there
– Lyrica is not the first medication prescribed in the USA (I’ve worked in a pharmacy for 15 years), Lyrica was designed for diabetic nerve pain, which you do not have (I assume you are not diabetic)… better meds are in the anti-seizure category… in fact, I was told if the first dose of Trileptal/Oxcarbamazepine doesn’t start improving the pain then it’s not ATN, generally first-line therapy should be carbamazepine and/or oxcarbazepine (not Lyrica)… other meds commonly used are Lamictal phenytoin, clonazepam, gabapentin, pregabalin, topiramate, levetiracetam and valproate
– ATN/TN gets worse over time so all meds should be started very low dose and very slow, you want to leave yourself as much room to increase your dose over the years as you can
– Often a cocktail of meds works better than a single med, there is going to a huge amount of trial and error in your future, get ready for it and stay on course – people here will be able to help you through it
– The book Striking Back is the only book available that speaks directly to facial pain, it’s worth getting your hands on a copy and start educating yourself that way as well as this forum
This has ended up being a long post! Sorry about that. Feel free to send me a private message or respond publicly with questions. I’ll answer what I can and there are, literally, hundreds of people from around the world on this forum who will be there for you with questions, answers, and suggestions.
azurelle
Hi Azurelle
Thanks so much for your reply. Its so nice to hear from someone who understands this. It validating in some ways because I feel like maybe I do have a bad tooth & I’m making a big deal out of something minor. I’ll write more later, just getting ready for work now. Maybe I’ll post publicly, it may be helpful for someone else going through the same. I know reading on this forum has helped me to unerstand so much.
Cheers
J
My step dad had TN , he suffered greatly . Eventually he got MVP microvasculare decompression surgery . He’s cured . He got his life back .
I have geniculate neuralgia, same bs different nerve. The meds are terrible, I took them for 3 years, carbamazipine , gababpenton , propranolol…some other junk infant remember. They only work for awhile and they just keep cramming pills down your throat to keep you quiet. And trying this or that rules out certain things too. Anyways after you try all the pills and they fail they will do the surgery. It’s like they want to make a certain amount of money off us before they will just FIX it .
My dad lost 60 lbs because he couldn’t eat. He could barely talk towards the end . That’s how bad he had to get before they took him serious. He didn’t stick up for him self and took no for an answer . Don’t do that!!! Stay on them , take notes . Never wait for the doc to call you, like for referrals and such , you will save a ton of time calling yourself .
Some how lots of exersice seems to be the cure for me , 4 days a week . I’m off the pills and feel great . Might work for your pain too , who knows . I’m sorry for your trouble echo
Hi again. Funny I had never heard of Trigeminal Neuralgia until I had the ear issues. I googled about my ear pain and I kept finding info about TN. Since I had no other symptoms & the shocks would only last for a day or two (there were many a day) I didn’t think anything of it. The episodes were months apart too. I have never experienced Migraines, just the odd regular headache now and again.
I totally get the feeling of having a loose tooth. My back lower molar feels almost like its rooted in sponge (if that makes sense). It doesn’t hurt a lot, its just a weird sensation, it is a constant noticeable feeling. I have another appt. with my dentist next week. I just really want an x-ray to prove that its not my teeth. She is very good and she is very aware of TN & the symptoms, I don’t think she’d do any work right now even if I really did need it.
I presume the neurologist will order an MRI. Canada has a health care system that is based on triage and waits can be exceedingly long. If it is way too long I will look into paying privately. Costly but worth peace of mind to me.
I wanted to ask you about the medication. My GP put me on Lyrica and it is helping but I’m still getting the odd break through attack. Not as severe as the first few days but up there on the pain scale. I seem to always have a low grade ache nagging at me too. I am in customer service and talking all day seems to take its toll. Interestingly I have been on Lamictal (lamotrigine) for 3 years now for another issue totally unrelated to TN. 200mg day. Would this not have inadvertantly prevented a TN flare??? So I guess I am on a bit of a cocktail just by fluke. Just not the right one.
You nailed it when you said All Hell Broke Loose!!! Its so strange to go from feeling OK one day and then your life changes the next. I feel that I’m coping pretty well at the moment & hoping for a remission. Its just wait a see situation. Many many thanks to you and everyone on this site that take the time to educate & support others. Here seems to be the only place where people actually get what you’re talking about.
One other thing, how would I PM you, there doesn’t seem to be an option. I’m not to used to the forum thing.
Cheers J
Hi Fedup. Wow I looked up geniculate neuralgia, its description reminds me of my ear pain. I’m trying to keep an open mind towards medicine at the moment. Thanks goodness I was on holidays the first week I was on Lyrica, I was not functioning well at all. I didn’t want to drive because I felt to spaced out. I feel better on it now but not myself. I imagine it is like being guinea pig for doctors, after you’ve been dealing with this so long. Not to mention what some of this stuff does to the liver and other organs. I am keeping an open mind for now, as long as I’m functioning & not in to much pain I’m OK with meds. Thanks for your response, ugh I know I need to exercise not just for the TN, lol. Glad to hear you are feeling good too. Cheers J
Java – first, I am NOT a doctor, nor a pharmacist… that said, I’ve been cocktailing meds for migraines for 30 years and for ATN for 13 years, so allow me to share some of my experiences.
LAMICTAL – I was on this for 7 years for ATN with outstanding results and it was the only med I was taking for it, you may just need to up your dose of that med rather than add others. Or, stick with the Lyrica and bump the Lamictal dose a bit, see if that doesn’t get you more relief. For me it it was 400mg of Lamictal that brought the ATN to heel, 200mg in the morning and 200mg in the eve. At the same time I was taking 250mg of Keppra for migraines. I was on Lyrica for about 2 weeks in the distant past, didn’t remotely adjust to it, actually walked sideways!
About three years ago with ATN flare I started having jaw joint problems, almost like TMJ but my jaw felt like it was going to dislocate (ewwwwwwww). My nuero and I upped my Lamictal to 600mg and I went into horrible side effects, overshot my personal best dose, ended up having to come off it completely. But that’s me, I react very strongly to meds.
LOW GRADE ACHE – yep, that’s basically a hallmark of ATN. I actually prefer the ache to the electric shocks. For me, the ache can be constant enough that I actual “adjust” to it in some sense. Whereas the shocks are always a shock (pun intended!)
REMISSION – I suppose it does happen, but for me it’s more of a chicken or the egg question. Does remission happen on its own? Or does remission happen because of proper medication? Or does remission happen and is maintained by proper medication? I was largely pain free, really had nothing but an occasional very low grade ache and varying degrees of numbness for the majority of 8 years. Then I had that issue with lamictal I mention above and had to change up my meds, after 18 months I found a new combo and went back into “remission.” But is it natural remission or remission because of meds? I don’t think there’s any way to know.
MEDICATION – I am a huge, huge fan of better living through chemicals. I believe absolutely that you should treat things like this medically rather than surgically. This probably comes from the fact that I had chronic, debilitating migraines before there were any meds for them. The introduction of Imitrex changed my life and made me a fan of chemical intervention. Since there’s no cure for this stuff, chronic conditions need to managed, and I believe part of management is the proper use of medication.
TRAVELING PAIN – the thing with ATN is that it’s not always the same brand of the nerve that’s flaring up. This is also a sign of ATN. I’ve had that icky feeling that my teeth are in a sponge (great description, btw), I’ve had deep ear pain, I’ve that the feeling that a hot tack is being driven into the upper corner of my eye, the feeling that a hot nail is being driven into the side of chin, my nose has tingled for DAYS (about drove me crazy), general facial ache… ATN often impacts several, if not all, the branches on one side of the face.
GUINEA PIG FOR DOCTORS – what I always tell people, especially working escalated member services issues in a pharmacy, your doctor knows disease, your pharmacist knows chemicals. Get yourself a good, dependable pharmacist (or is that chemist for you?). Always remember there’s a reason it’s called the PRACTICE of medicine. Especially with nerves. We simply don’t know enough about how the brain works or how the nerves work. As people with TN/ATN we’re literally ahead of the medical curve. Be patient with your doctor, be your own advocate, and educate yourself thoroughly. People like us are very frustrating for doctors, we’re very difficult to help and we often show up in blinding pain. Doctors want to FIX things and right now TN/ATN doesn’t have fix. My nuero, who specializes in migraine, actually told me “I had to get used to not being able to help people.”
PRIVATE MESSAGE – on the upper left side of this message at the top is my name, click on it and you should get an option to send a private message.
HANG IN THERE – regardless of what this ends up being, although ATN sounds like a good bet, your life is forever changed. Start working on accepting the change now and you’ll be ahead of the game when you get to the neuro.
azurelle
Java, welcome to the group but so sorry you have to be here. I have suffered with either gn or gpn for many years. The ice pick to the ear for me started out slow, maybe once or twice a year for a few minutes at a time and progressed to weekly for up to 12 hours at a time. Many Drs., many tests, finally found a head and neck pain specialist that has kept me sane. In addition to the Carbamazepine I have taken for years, he recommended Nyloxin. I buy thr oral spray over the counter on Amazon but is also available on Nyloxin.com website. It is cobra venom that you spray on your tongue and stops the episode in it’s tracks for me. He also has a TN patent that it works for as well. It was scary to think about using, but I researched the company and trusted him. Once my next episode started, it was a simple decision to try and within two minutes the pain was completely gone. They currently aren’t selling the extra strength so I called them and they told me to double the dose of the regular strength. Best of luck with your treatment and glad you found this forum. It helps to have others to reach out to that completely understand and can share what works for them.
Hi Cali, Thank you so much for the welcome. The ice pick to ear thing has happened several times over the last couple of years. It would usually last for a day or two several times an hour. I’ve called in sick to work for it a couple of times for it and I NEVER call in sick. It would literally make me grab the side of my head and yelp, not great if your dealing with customers. My family thought I was crazy. But it would always go away and that would be it for months, so I didn’t think much of it. I haven’t got all of the answers I would like at this point, I’m getting there. It really is slow process, I’m only a month in. This time I’ve had steady pain to varying degrees everyday. Its getting old already. From what little I’ve learned so far most has come from reading other peoples stories on this and a couple of other forums. Everyone has a different story but all have such similarities at the same time. I’m on Lyrica and I don’t know that it is doing the job, I will head back to my GP, again, and talk to her about Carbamazepine. It seems to be the first line of treatment. Thanks for tip about the Nyloxin. I checked it out online, worth a try, my tongue is numb & painful. Do you find that as you get closer to your next dose that your pain level increases. I’m only taking my meds AM & PM. I think I need a dose in between. By 7:00 PM the pain and numbness starts getting worse then it dawns on me I’m in need of my meds. Nobody I know has ever heard of this and certainly have no capacity to understand the severity. My kids and husband have some level of understanding because they have seen this going on with me first hand, which is totally out of character. At some point I’m going to have to end the pity party I’ve been having and just start to accept this and deal with it. It really does suck though. I am grateful that the doctors I’ve seen so far haven’t brushed me off or sent me on a wild goose chase to the wrong specialists, so thats half the battle. Anyhow…I’m glad to have the support of all folks on this site. Amazing how just sharing with others that “get it” can help with he emotional part of it all. Take good care and I will keep in touch. J
Hi Java and welcome! I’m so sorry for your reason to have to join this group. I wanted to post the link for you to my TN Story that I published a couple of years ago. Like you, I was quickly diagnosed and that “first” day of excruciating pain just dropped into my life in an instant. I was diagnosed with type 1 or “typical” TN but know that you can still have an underlying more constant pain with that diagnosis as long as it is less than 50% of the time. The neurologist should be able to determine that along with the MRI. I saw far more doctors that I had ever seen in my entire life during my 9 months of TN pain and had an awful time with the med side effects. I saw one of the comments post about Microvascular Decompression surgery (MVD). That is what I had and I have been pain free and med free for 4 1/2 years. If you have some time, take a look at my story and maybe share it with loved ones as a way for them to understand what you are going through. You must become your own advocate and educate yourself as much as possible. Get the book “Striking Back” by Dr. Ken Casey (my neurosurgeon). It is the TN “bible”. I wish you well on your journey and pain free days ahead.
MY STORY: https://healdove.com/disease-illness/Trigeminal-Neuralgia-How-I-Survived-the-Suicide-Disease
Though I’m sorry you feel the way you do, there’s a lot more that you can do. First off in the absence, of any nasties on MRI, I’d ignore your GP, drugs though I hate to advocate have a place but before you know it become a crutch, and often your in the system, they don’t offer anything besides drugs, a needle or surgery. You didn’t acquire your symptoms, due to a lack of drugs, injections or surgery. You need to ask questions with this in mind. Unfortunately what you won’t get , in the absence of a positive MRI ( and I’d be very tempted to ignore any suggestion of ‘this vessel is compressing this nerve and this’, ) is a referral down the tree to someone who might be able to actually help. I’ll try and back this up by asking if anyone on this site, having consulted a neurologist has ever had a referral down the tree, to a physical therapist, nutritionist or even a psych therapist. ‘Striking Back’, is not the TN bible or at least if it is it shouldn’t be, and apologies to Drs, would appear to be an advert for MVD. I doubt Drs has ever suggested anything along the above outside medical intervention. That said along with others they’re trained in what they ‘do’ but there is enough evidence to suggest there are alternatives and of lesser risk, prior to. Are they mentioned? I’d like to know
We getting a glancing bow to chiropractic, have they ever referred anyone??
Looking at he video mybell posts on the link, says what I stated. We will ignore the rest. Ignorance of the anatomy or worse, from a starting point not good not good at all could condemn to MVD before time, if ever
Hi Mybell. I read through your story. I still can’t get over how sudden this disease comes on, it flips your life upside-down in an instant. I’m still awaiting an appt. with the neurologist, so I’m hanging in with meds for now. I feel lucky that the first doctor I saw suggested TN and I was pointed in the right direction. I have however run to my dentist twice just to reassure me that it isn’t my teeth. I was interested in what you said about the meds and hypothyroidism. The facial pain specialist I saw noticed my hair seemed brittle and recommended I get a Thyroid test, just as an aside. Turns out it is on the high side, on the cusp of hypo. Not related to TN of course but if I need to start Synthroid I will be sure to investigate the drug interactions. I feel like I’m in limbo at the moment waiting on Dr’s & MRI’s in Canada can be frustrating to say the least. I don’t know what my diagnosis will be but I suspect it is more aligned with ATN symptoms although my first attack sounded much like yours. There are so many opinions & theories and advice here. I will stay open minded to all of them. For me I need to see how things progress, I’m still hoping & waiting for a remission. If that isn’t the case then figuring out how I will manage this in my life will come with much thought. I really appreciate your welcome & sharing your story. I am so happy to hear you are living pain free & med free. I will keep you posted as I carry on. J
You need to find out whether it is not TMJ. I had all those symptoms and was diagnosed with both conditions at various times. Eventually I saw a maxillofacial surgeon who took an X ray of the jaw joint itself, not the teeth, and saw immediately that the cartilage disc inside the joint was out of place and had been for several years.
While you’re waiting for test results and appointments it might be worth going to a massage therapist for head/neck/shoulder session. You don’t need a prescription, you can make the appointment yourself, and it’s not too terribly expensive.
I dismissed the idea for years, how was a massage going to help blinding facial pain? But eventually, with the encouragement of my neuro I went for a massage, after all, it’s non-invasive so why not give it a try. HOLY CRAP! It really, really helped. My face had been varying degrees of numb for about two years at that point, the first session brought feeling back for several days. I kept going for sessions for about six months and ended up regaining full feeling in my face.
Though I have atypical TN, two MRIs (one 2 years ago and one recently) both show a vein clearly compressing my trigeminal nerve. I guess I am “lucky” that there is a definitive “proof.” Mine started very minor, intermittent, as did yours, many years ago, and then now is 24/7 and has been for months and months and months. Some days it is less painful and less distracting than others, but it is never gone. I am seeing my neurosurgeon again for a second consult next week, after a couple of other tests he wanted run concerning a different matter. I have chosen not to do anymore meds after using gabapentin and just hating it (though it did reduce the pain quite a bit). I just can’t live my life feeling like that drug made me feel. I am considering surgical intervention he offered. We shall see. As with everyone else, I appreciate so much everyone’s support and helpful guidance on this site, and I wish the best to everyone, whatever their path of treatment chosen.
Whilst i’m sorry your struggling, I don’t consider your lucky that their are two viens compressing your nerve, means next to nothing considering plenty of folk have this and no symptoms, yet your neuro can use this and probably will to direct you to consider surgery. Sorry I know I’ve posted already but please consider the rest in the absence of proof for MVD, yep even massage, azurelle has a point, and the anatomy supports it, plus it’s relative inexpensive, heck if it doesn’t help it’s got to be a pleasant experience.
Hi Pat. I saw a maxillofacial pathology specialist a couple of weeks ago. He did not take an x-ray at the time but did a general exam and listens to my symptoms and concluded the Trigeminal Nerve is the source. However he noted some tenderness in the jaw on the left side. I am going back to my regular dentist in a couple of days, I just feel that an x-ray would be prudent. Also just for peace of mind. My symptoms currently are not unlike TMD but I am on meds. A month ago I had every description of classic TN. I don’t know what to think. At least I’m relatively comfortable today. The past few have been pretty a drag, just aching in my lower jaw and numbness in my lips and gums. Did you have TMJ on only one side?? Also does TMJ come on suddenly out of the blue or would there be a slower progression of pain. Also, would TMJ respond to Lyrica? Thanks for the advice.
Azurelle, I’m going to head to the Massage Therapist next week and give it a go. I have a bad neck anyway so it high time I check it. Thanks 
Sorry to hear of your TN. We all have experienced severe pain here, and you are not alone.
My Glossopharyngeal neuralgia had elements of your pain, in the lower jaw and the ice pick in the ear, with the majority of pain in the right side of my throat and tonsil.
My MRI was read as negative but my neurosurgeon saw a blood vessel pressing on my nerves. After years of on and off pain, and 6 months the last session, I had MVD and was cured. At least for the past 6 years and hopefully I’ll never need surgery again: it wasn’t a picnic.
It isn’t for everyone and it sometimes makes people worse.
But in my case it worked and I have my life back. I wish you well on your journey.