Can't find a way to accept this and cope with this new "way of life"

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OK, here goes…

Im 37 year old male, have been taking care of my teeth pretty well, no cavities since i was about 15. For some weird reason both of my upper jaw lateral inscicors became infected within months of each other when i was about 22 years old, no cavities, no trauma. First my right inscisor threw a huge absess in my palate and required emergency root canal. After the root canal was done i was pain free and ha no issues for 2 months, then my left side inscisor became infected, no absess but x-ray showed clear signs of infection and it was painful.

Judging by the x-ray the dentist said root canal would be 50% or less, but we tried, so he did a temporary root canal. But the pain didnt get much better… So i had to extract it. Then put in a tooth implant. This was all done about 15 years ago.

Fast forward to today, i´ve been symptom free, painfree for 15 years, but started getting medium level pain from the root canaled tooth, went to the dentist and had them redo the root canal, opened up, cleaned out and temporal filling.

Felt great immediately, next day aswell, but then on the evening i started getting severe pain on the left side of my mouth instead. Around the dental implant area.

Went back to the dentist, they x-rayed the implant tooth, the teeth next to it, which showed no signs of infection whatsoever. They did vitality test with electricity, pressure test, bite test, tap test and said everything looked fine.

The pain has only increased since then, and mostly the pain is focused around the implant, the canine or the front tooth next to the implant. My palate is often sore around the implant, got a burning pain that comes and goes and seems to be focused around the implant site but also the “chewing tooths” on that side aswell.

I´ve seen dentists, jaw surgeon, ENT, neurologist and odontologist.
The odontologist could see from the x-ray that i do have inflamation in the jaw above where the root canal was made. And have opened up the root canal again and cleaned it out and did yet another temporary root canal.

Nothing has been done for my left side pain and nobody wants to do anything since they can’t see what’s wrong. My general practictioner says it might be something to do with the titanium in the implant but the only way to know for sure is to remove it.

I am on 400mg gabapentin 3x daily and while it takes a little bit of the pain away, i am far from living a normal life anymore. In fact i feel like my life is absolutely over.

I just tried getting back to work 50% after a 6 week sick leave due to the pain. Some days i can do meaningful work but often i am on the verge of a breakdown and so close to crying all the time, many times im in pain and tears are gathering in my eyes while i am working…

I just can’t accept that there is nothing wrong with my teeth since it feels like it so clearly is coming from there. And also even if i could accept it, it means i need to accept a life of intense pain and dragging my daughters (9 year old) quality of life down with it…

The neurologist did not think this was trigeminal neuralgia (his words) and i said, no i know it’s not, i dont have episodes or shocking pain. But my GP and dentist wanted to diagnose me with atypical trigeminal neuralgia. I got the feeling that the neurologist didnt have a good understanding of what that was, but i might be wrong. Anyhow, he told me “You have only had this for 6 weeks and it is so localized around this area that it is far too early to put such a diagnosis”

My energy is drained, i told my wife that i am almost ready to give up now. And i´ve written a letter with stuff that she needs to know in case i “disappear”. She says it would be selfish of me to commit suicide and that i need to consider what it would do to our daughter… But how on earth do i cope with living with this pain?

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Hey Andreas,
Welcome to Ben’s Friends.

TN is often a diagnosis by elimination ie ‘If it’s not ‘X’ and it’s not ‘Y’ then it maybe TN’ and trying to define TN to a single symptom ie episodic or shocking pain is near on impossible. There are a couple of differing types of TN often referred to as TN1 or TN2 but for some sufferers they can experience traits of both, so obtaining a clear definition can be a huge challenge. Some people report a burning pain, some report intense cold, some report a constant pain and for some it can be episodic. TN affects the trigeminal nerve or the 5th cranial nerve. This nerve has branches which fork off to differing regions of the skull and jaw. Damage anywhere along the nerve tree can send messages anywhere along those branches. For some the region affected may not actually be the location of the damage and this can make the whole diagnosis process much more difficult.

I say all of this because TN has been one of my many diagnoses. I’ve required a few neurosurgeries, 6 so far with the likelihood of more to come. The possibility that the trigeminal has not been affected by the cutting of the scalp is nil, but when the medicos cannot pinpoint cause/effect TN often becomes the default or ‘go to’ diagnosis. I have seen numerous specialists of every colour and creed (and specialisations) and they’ve all had a different theory and/or differing therapy for me to trial, none of which have been my ‘Key’. I had one neurologist who came up with another diagnosis of cervical dystonia and recommended Botox, so I trialled that with 6 treatments, without success. The neurologist said to me ‘It’s worked for others, so it must just be YOU’ like I choose to be here. As I’ve said to others they really have no clue how bad ‘BAD’ can be. Pain is one of those things that can only be measured by experience and if they’ve never had to manage such intensity of pain, never experienced such pain, their comprehension of it is limited (although they may never admit it). I was told by one nurse "ohh, it can’t be THAT bad’ I told her to lay on the floor and I’d boot her in the head, then she could tell me all about it. She was offended, but nowhere near as offended as I.

There is also a diagnosis known as ATN or Atypical Trigeminal Neuralgia. ‘Typical’ has a normal set of symptoms making a diagnosis more easily definable. ‘Atypical’ is the opposite and symptoms that may seem totally unrelatable can, in fact be a direct symptom for that specific patient. All of those variable symptoms can make the whole process of obtaining a clear, defined diagnosis near on impossible. This can make the whole process of treatment and management very individual, what may work wonders for one person maybe of very little use to another and trying to find your ‘key’ can be a long drawn out process of elimination.

Personally, I have lost count of how many people have told me they know the ‘key’ ie “My friend ‘John’ get’s headaches and he uses ‘x’, ‘y’ and ‘z’ treatments…” And those treatments may work wonders for ‘John’ but that doesn’t mean they will work for me. I’ve been trialled on more medications than I can count and I’ve trialled all sorts of remedies/treatments both medically recommended and suggestions from others. I am yet to find my ‘key’. What I have now is some ‘management tools’.

Some people have set symptoms and a set treatment to assist. My symptoms vary wildly and because of this I need to have a selection of ‘management tools’ that I can mix’n’match to meet my needs when and where they are needed. For example, I have some varying opiates, some lesser, some greater. If I’m out driving, I can’t be taking high dose opiates (Those things wipe me out), so I use the low dose. I have a few basic questions I ask myself. What has triggered the symptoms? Have I over exerted myself? Have I eaten? Have I medicated? Is the cause environmental? Is it too bright? Is there too much noise? From these questions I can workout a plan. Do I need to rest in a dark silent room?

Sometimes I get my management tools right, sometimes I don’t. But by having a range of ‘tools’ I’m not limited to a single treatment or a single option because my symptoms certainly are not singular.

I’m very unsure of the services available to you in Sweden. Here (I’m in Australia) we have a phone counselling services and if such a service is available it maybe worth making contact, even if it’s just to sort through you own thoughts. I have found talking to someone outside of my sphere therapeutic. Also via our health service we have access to a ‘Pain Management Clinic’. Often their services can discuss differing treatment options and management tools. They may also have access to specific options unavailable outside of their referral. I’d recommend some investigation into ‘alternative’ options.

Merl from the Modsupport Team

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Hi Andreas,

First of all, I am so very sorry that you are going through this pain. I was finally diagnosed with TN2 in 1990, after a five year journey looking for answers. When the last doctor I saw told me that I just needed “to learn to live with the pain”, I said no way, and my husband took me to Mayo Clinic. They then suggested a facial pain clinic in Gainesville, FL, and they put me on my first medication to control my pain, that was 33 years ago. I still have TN2, and I have to change my meds every 4-5 years, and I have had some pretty low days in those 33 years, but I am better equipped to handle the bad days. For the past 5 years I have been seeing a pain management neurologist, and he has helped me finds meds that keep my bad days at a minimum. My best advice is to keep searching for the right medical professional that can help you live your best life. Never give up, there will be someone that can help you. Stay strong

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I was miss diagnosed by 2 neurologist. Many have never seen this disease. You need to consult a neurosurgeon who are more familiar with thiis. There is No surgery for this type. I have both types. I use capsicum cream and sometimes lilocaine patches because I could not tolerate antiseizure drugs, Don’t give up please. I have manasged well for 10 years.
Some people will see on average 7 doctors before they get the correct diagnosis. I would go to a neuro surgeon for a diagnosis.
Also I used a compound cream with gaba for many years until I got type 1 and had surgery that cure the Type 1 - sharp jabbing pain. You also might go into remission which I did with both types.
My pain was severe like you but the atypical TN pain lessened over the years. The cream help me worked full time Capsicum and compound cream with gabapentin gave me less side effects of taking a pill.

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MRI showed compression of the cranial nerve- 5th trigeminal nerve behind your ear. If the neurosurgeon wants this test, do it.
If you decide to use cream, use it on your face above the location. Do not use inside your mouth, it will work. Just be patient for a few days.

Also I take B12 and vitamin d3 with K2. Have your doctor run test on these 2 vitamins to see if you are deficient.
Contact me if you have questions. I have both types on both sides.

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Hi, thank you for a very informative answer.
I have read alot about ATN and i really wish it isn’t that but i feel like once the doctors start talking about ATN any other diagnosis goes out the window and now they wont even bother anymore.

My treatment tools at the moment is gabapentin 3x daily, but that doesn’t help enough. Chewing gum helps sometimes. Sometimes im painfree for 1-2 hours. Talking makes it hurt way more, which takes a huge toll on me psychologically, i need to talk for work, and i have a 9 year old daughter that i am so extremely sad when i think about that i am not talking to her because of pain alot of times…

Sometimes i wheigh the pro’s or con’s of saying something, like “is this important to say?” and that can take a good 30 seconds before i decide if it’s even worth saying because i know the price for saying it is more pain.

In Sweden we have free healthcare but dental work costs. We have a “suicide hotline” but i don’t really feel like talking to a hotline is gonna do anything for me. They won’t understand and can’t do anything for the pain that makes me want to die in the first place…

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Thank you, i will look into getting the cream or maybe even lidocaine patches. Im gonna need to see if my doctor can prescribe that for me since im guessing lidocaine patches are prescription based here in sweden. Where do you place it?

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I got a question for u all that is messing with me.
If u have had a dental abscess or root infection, u probably know the feeling u have when u run your tongue across the abscess or close to the tooth that was infected. It’s like a “stabbing/electrical” feeling that only stabs once when u pass over the abscess.

I do have that exact feeling when my tongue touches an area close to my 2nd molar on upper left side.
I´ve felt this pain for months but it was so minor and usually i would get the stab once if food touched that very specific area which then caused me to run my finger there to check if i could find what caused pain, but could feel nothing. So after a while i just accepted that this could happen from time to time, it wasn’t that bothersome. But now i feel that pain very often, but not every time food touches that area, or even if i swallowing water and my tongue presses against that area. I can provoke the pain with my finger quite easily aswell and the pain is localised about 10-15 milimeters above the 2nd or 1st molar in the roof of the mouth so to speak.

Is it normal for atypical facial pain to have a spot that can provoke pain when u press on it like that? Dentist has looked at it and done x-rays but couldnt find infection. I´ve googled quite a bit and it seems like teeth roots can be infected without symptoms from the tooth itself or without showing up on an x-ray.

How do i even go about disregarding that constant nagging feeling that it could be an infection?

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Lidocaine patches are available in the states in over the counter and prescription strengths. I was using them while I was waiting for surgery on my foot, and there was a nerve involved in the problem so you can imagine the pain. The over the counter patches barely touched the pain. The prescription ones made it possible for me to go about my day without thinking much about my foot and pain.

Sharon from ModSupport

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Dear S…I’ve been where you are and I promise you it will get better. I Iived with TN for 17 years and over the years my neurosurgeon tried several methods for me and it gave me pain free days months and years. It does come back bc the nerve finds a way to heal itself :woman_shrugging:t3:. My dentist did a root canal on me too and that’s why I developed TN. Ok so I tried carbamazepine for years and it kept me pain free, sometimes it flared up but it did calm down so I could function. But then I had Gamma Knife, best thing ever!! It’s non invasive in out in the same day and it worked for me for 4 years! Fantastic! When it came back I decided to go for the big surgery, MVD, didn’t work for me :cry:. So back to GammaKnife, worked for awhile back on carbamazepine. So lately carbamazepine has turned on me, face swelling and my tongue. Back to my neurosurgeon and he offers a new thing to me called percutaneous rhizotomy, I just had it done last Thursday May 4, 2023. Not a painful surgery in and out home by noon. So far I can tell you I’m not having any pain but I’m still a little numb. I’ll keep you posted. I’m just saying don’t give up, you have too many depending on you and you want to walk that sweet daughter down the isle one day, right? I’m 67 and have two precious granddaughters and I especially want to see them graduate, get married and have children. Think of all of those moments and that will keep you going. Get out there and find a doctor that will help you. Keep in touch, God bless you always and I’ll remember you in my prayers.
Donna from Tennessee

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Hmmm, well I can’t disagree with you on that thought, because that was pretty much exactly what happened to me. The neurologist had made his diagnosis, ATN. In his view the neurosurgeon operated, the neurosurgeon fixed. So it was no longer a neurosurgical issue. Firstly, it was TN, but my symptoms didn’t match, so then came ATN diagnosis. When the Botox did not have the benefits he came out with ‘Ohh well it must just be you. It works for other patients…’. Happy I was not. Luckily for me (if you could call it luck) my symptoms progressed and progressed and I was again under the knife requiring further neurosurgery.

Healthcare is cost free here (Mostly cost free). But there are times when, to obtain a truly independent opinion, it’s better to pay. I must say here I was fortunate to have an insurance policy via my superannuation. When I made a claim they sent me to specialists, they even flew a professor of neurology in from another state. His report was very indepth with all the relevant reports scans and test referenced and he supported my claim. Had I not seen this professor I would have only had the ATN neurologist’s report. If I need to provide supporting reports, I only send the professors.

Now, Sharon, my co-modsupporter, mentions Lidocaine and I had a ‘Lightbulb’ moment. Sharon mentions patches, but you can get an oral gel. If you can touch the area, you maybe able to use the gel. If that gel does assist it may be an idea to speak to a Dr and/or a Dentist and/or an odontologist about surgically dry freezing that particular zone. BUT, I’m No Dr, No Dentist And No Odontologist so I don’t even know if that’s possible orally. You would definitely need to see a professional, and probably pay for it (and I doubt it would be cheap). I have heard of it being used externally, but again, under what circumstances and for which, conditions I’m unsure. This may give you another option to investigate.

I think I can speak for a great number of our members when I say ‘Unexplained issues of pain are a lot more common than anybody would believe’, (Or ever want to believe). We know this because we live it too, you are not alone in all of this.

Merl from the Modsupport Team

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I purchase salon pads from Amazon which I was advised to try by another member here. U can cut them up into small strips up to 3 days. Then I switch to capsicum cream. My ATN started with a root canal and it was severe pain for months but then it started to reduced in pain.
Capsicum cream in available over the counter. It is in a red box saying it helps arthritis. I apply this cream several times throughout the day. I like the compound the best but it is exspensive

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I will alternate the hot pepper cream Capsian Crèam with lilocaine patches. The cream will cause burning in other places. Do not touch eyes. Washing hand will not get it off fingers but milk or cottage cheese will clear it from fingers.
After 9 years of ATN I got type one. Severe excruciating pain lasting 5 days each time which surgery will stop the pain. Very few neurosurgeons have done many of this surgery. But you must research doctors. I had to travel to another State in US to find one who is Excellant. Hopefully you will not have this problem. Also, I have had other dental work including extractions, infections, and crowns and I did not have this problem there. Let me know if you are interested I’m compound cream. There are many formulas. Later I just used 6% gabapentin only but you can add lilocaine, capsicum, ketoprofen, ketamine……and others My neurosurgeon was Dr. Fukushima from Japan who travel around the world. You probably will never need this.
Also ice or heat will help with pain.
Acupuncture works also

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I have a burning symptoms in my ear so I will place a piece of a strip behind my ear and another base of head behind that ear. On face I will place a strip near temple or on the face near or along the trigeminal nerve leading to where that pain is. Touching the area that hurts never cause the pain like yours. I had an infection and I kept thinking the problem was an infection. Your symptom is different from mine… Touching never caused or increased my pain.
I usually preferred the capsicum cream on my face for the most part. After several times of using it , you see a difference in pain reduction. I have use this cream long term but the lilocaine patch in uncutted size can only be used up to 72 hours. Both help a lot.

Medical marijuana work great but not legal in my state.

Heat and ice helps a lot too.

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I read that and tears filled my eyes. I’ve been there. When mine first began, at 37 yrs old, it was basically all “tooth related”. I had four pulled (no infections)…I was desperate. I had three months of non-stop agony, then one day…poof…it vanished. For a couple years. In the meantime, I was lucky to be semi-dx by a new dentist. I was terrified to have my teeth worked on, bc I feared whatever happened coming back…when I described it, he said…”sounds like TN”. When it hit a couple years later I marched straight to a dx neurologist who waffled on whether it was due to MS, or not (finally deciding it indeed was). I have bilateral Types 1&2 and ATN…and I’ve lived with it for over a decade. Like others have mentioned, find a great pain management doctor and something that will at the very least take the edge off and keep you from being so close to a breakdown…flares will happen, but living at a 10+ pain scale 24/7/365 isn’t something that can be done. There are meds that help. Will you ever be pain free? Maybe so? Some experience remissions. I did, in the beginning. I don’t have remissions, now, but I do have meds that help and doctors that I trust. ATN is known to not react well to anticonvulsants or epilepsy meds like TN1. The compound creams help. Actual pain medicine helps. I don’t know what country you are in, but opioids can be life saving for that kind of pain. Don’t give up. (They only spend about 30 min on TN in medical school and most docs know next to nothing about it) I promise better days are ahead. Don’t have anymore root canals or teeth pulled, though. (Seriously) I hope tomorrow is a much lesser pain day for you.

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You need the right doctor. I was correctly diagnosed in 1999. It is 2023. I am not suicidal at all.

I have ATN. I was correctly diagnosed 1 day away from suicide and put on tegretal immediately upon meeting my neurologist. Within 45 minutes the shocking stopped.

Before finding the right neurologist, I was prescribed Vicodin. It,too, stopped the pain. It had wicked side effects but at least it stopped the pain and gave me time to find the right neurologist.
I was living in the San Francisco Bay Area at the time. I was referred to a neurologist who is no longer in practice.
Go to the best University in your area. Talk to the head of the neurology department. Ask them for a referral to the best neurologist for treatment of TN.
If that doesn’t work, would you consider traveling to Stanford, CA? Call their neurology department.
Ask for Dr Steinberg’s office for a referral near
Where you live or in California (CA).
Just keep researching until you find the right doctfor you.
In the meantime, get pain management until you find your neurologist.

I did. I’m fine now and have been for 24 years.

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Sorry i havent answered to all of you guys posts. I´ve had about 10 days of lower than usual pain and haven´t wanted to give this a thought. But last 2 days has been hell again. I´ve seen my dentist and she doesn’t even want to discuss my symptoms with me anymore. We had to adjust my nightguard because my bite alignment is way off in the morning and i have a terrible jaw pain (not worried about that pain tho because it feels exactly like normal muscle pain).

My now the pain is back on my right lateral inscisor, and it’s pretty bad…

The pain on my left side has been a little more manageable. My dentist said that my dentil implant might be needed to be removed last time we talked which was about 6 weeks ago. Since then i feel like i can pinpoint the pain more often to my left central insicor, i also have throbbing and burning from that tooth aswell as the gumline around that tooth is EXTREMELY sensisitive… If i put my finger lightly on the gumline and move it gently it feels like im cutting the gumline. This is also apparent if im laughing or smiling and my lip moves across the gumline on my left central inscicor, i get the cutting pain…

So at the moment i have…

  • One spot in the left side of the roof of my mouth that i can pinpoint with the backend of my toothbrush, if i hit the right spot i get pain that radiates wildly.
  • The gumline around my front tooth is extremely sensitive to touch, even the inside of my lip rubbing against it hurts.
  • Weird painful feeling if i press my gums around the dental implant
  • Intense pain from the root canaled right lateral inscisor.

I am once again in a dark place unfortunately.

Taking Gabapentin 1500mg.
I asked my doctor about adding amitryptiline alongside the gabapentin but he was worried that the side effect of amitryptiline “dry mouth” could aggravate the pain even further…
I asked about lidocaine paste but he was reluctant since he thought it wouldnt work, and asked me to ask my dentist. And my dentist doesn’t want to talk about my symptoms anymore…

Not sure where to go from here… Everything started when i retreated the root canaled right lateral inscisor. I’m actually considering removing it… but what the hell do i do after that? I will never again have courage to do a dental implant…

As for medicine:

I do believe that Gabapentin has more or less eliminated the burning pain i had on the gums on the outside of my upper left molars, either that or the pain has gone away…