I signed up with this blog a while ago and thought it might be helpful for people in England-
It is by a dentist called Andrew lane-who appears to be quite compassionate.
You can ask questions.
And get some answers.
Hopefully it helps someone
Thanks, Ellen, that was really interesting. I would love to go and see him on the off-chance he might find something useful about my mouth/teeth! But I’m never sure if NHS dentists can refer you to private dentists, or how referral works in that situation. If it does. I sometimes think it would be really interesting to poll TN sufferers for how many of them have root canals. I’ve sometimes wondered if root canals are linked to the development of TN.
I wonder if you could e-mail the guy?he seems to respond to e-mails.
Anyways,glad you found it interesting and hopefully helpful.
I hope your system works better than Canada’s.
I have never had a root canal.I have a syndrome called Waardenberg’s which
may play a part in this pain that I have.At least that is what the only
doctor that did anything thought before he ran away to New York.Dentists
have never been able to fill my teeth without excruciating pain.
So I have had sleep dentistry-but obviously something went wrong.
I hope things are good for you and that you have a good week.
Actually its the other way round, people with undiagnosed TN have needless dental work done, dental work does not cause TN (although it can make it flare). You can do a search for TN and root canal and gets pages of solid research on it.
In the past 10 years or so in america TN has been covered much more fully in dental schools than ever before. Dentists here are now taught the dental signs of TN and to refer patients out rather than start messing with reactive teeth that show no other dental signs. In reality dental work is no where near the main trigeminal branches. If your dentist has hit that nerve directly something has gone terribly wrong.
Thanks, Azurelle, that’s interesting. I know when I’ve seen my dental X-rays, I’ve had the nerve pointed out to me that runs to your teeth and it is directly under them, very close indeed, but I’m ignorant as to whether that is the part of the trigeminal nerve that is the culprit of not. If they are right and it’s the main nerve being pressed in your brain then no, obviously not, but I would imagine it’s possible, if it were the branch of the nerve that runs under your teeth where contact is possible, and therefore damage. Whether that direct damage could then lead to TN is a whole other question!
I’ve just been struck by how many TN discussions seem to involve ‘I just had/was going for a root canal’. Of course, it’s quite possible that the incidence of root canals in the Non-TN population is exactly the same, in which case we’re looking at correlation, not causality! But I do wonder if the act of having root canals somehow alters the nerve’s sensitivity or susceptibility, or even causes gene expression somehow, hence it (potentially) triggering TN. It could be the materials used, or how much of said materials you have in your mouth. Just a thought…
Personally, for my own sorry tale, I think a sweet tooth caused my problems. Paradoxically, not by decaying my teeth (another problem all on its own) but by causing gallstones, which in turn caused B12 deficiencies, which in turn caused nerve damage, which led to TN. But when it comes to gene expression (I feel they are probably right about the disease being genetic), I suspect it is never that simple and I think my mouth full of root canals probably led to increased nerve sensitivity and damage which when added to the gallstone/B12 issues made gene expression inevitable.
P.S. Forgot to say, as an interesting aside, when I first developed TN I went to my dentist, who was good and conscientious, and she couldn’t see anything wrong, but she decided that it must be because the filling in the ‘tooth in question’ was so large it was probably the pulp dying, so she opened it up to start a root canal but I wasn’t sure about the symptoms so went to the doctor’s. When I went back to her and told her it was probably TN (after seeing my doc) she said, “You know that was the first thing I thought of. I wondered if it might be that.” So although dentists do know about it, the nature of them being dentists still tends to make them focus on dental solutions, even although they are aware of medical possibilities. It’s always going to be a problem, no mater how well educated or knowledgeable that your dentist is, that their bias will get in the way.
Said tooth, incidentally, was refilled but got worse from having more of it taken away and has become super-sensitive. This makes it trigger the TN all by itself. However, I’m not root canalling it. Enough is enough and there is no guarantee that even if we removed the nerve that the pain would go away. That’s TN for you!
Oh my gosh.
We need to diagnose ourselves.No one else can get it.
I have read many studies from India that talk about implant teeth and the chance that something very bad can happen-and that the correct way of dealing with it is to have the patients on the ATN regimen of drugs ASAP so that there is a greater chance of recovery.Not -go away ow and it will get better on it’s own.The pain must be treated aggressively right away.
For me ,I was already on the gabapentin and I started with St.John’s wort right away.Maybe things will get better…
Really interesting that you have never had a root canal, Ellen - that kind of blows my theory right out the water, doesn’t it?! I don’t know your condition at all, Ellen. It sounds rare, is it? Just going to look it up and get a bit more educated!
Ever since I was a kid dentists could not freeze my mouth to do fillings.I
remember being tied to a chair with a brace to hold my mouth open and the
dentist yelling at me after for ruining the chair from digging my
fingernails into the arm rests.
My sixteenth birthday present was sleep dentistry.
They can pull teeth no problem.
So when I was having a problem with one front tooth I said pull it and I
will get dentures.Had the dentures made up and tooth beside was sore-and
decided on filling thru sleep dentistry-and this time things took a dive so
If you find anything on waardenburg’s that I might find interesting let me
There is a transsexual-now a girl- called Stephi on you tube and she is
absolutely brilliant.I wish I had her to walk me up and down the street
when I was kid.The bullying was brutal.That is why I cannot stand to be
bullied by anyone ,esp the doctors,now.
I had my first (and only) root canal 9 years after ATN was Dx. I expressed my concerns about aggravating the nerve with the root canal and the dentist showed me all kinds of diagrams on how working on teeth doesn’t touch the TN nerve (although having your mouth cranked open can certainly aggravate it). My root canal ended up being pain free.
Interestingly enough, like ellen, I never numb correctly for dental work, never have, which make me wonder about TN/ATN being a predisposition to some extent.
Ouch, I can sympathise. I had a lot of dental trauma as a kid but not for the same reasons! I wasn’t blighted with your condition. How unlucky are you that the neuropathic symptoms you got are TN? Do you also have the hearing loss? The only ‘advantages’ to the condition ate bright blue eyes and the white streak in the hair, although at our age white hair isn’t so much dramatic as ageing!
Do you get your Waardenburg’s diagnosis early in life or was it not spotted till later? I think it’s bad enough that fate throws something like that at you without then heaping TN on top of it. Take a virtual hug. X
P.S. I get 100% what you mean about the bullying. I’m much the same because I came form a very bullying family so now I’m dead touchy about anyone trying to strong-arm me into anything!
I know what you mean, Azurelle. I suffer with dental phobia and have done since I was a (young) teenager. It was caused by a lot of traumatic dentistry as a child which, oddly enough, featured never being numb when the dentist worked on me, plus, of course, him making me sit through it rather than give me another injection (people literally get away with murder with children; they’d never expect an adult to put up with that!). I’ve always thought it was because of my fear that I had some difficulty numbing up as adrenalin blocks Novocaine (ironic!), but I do wonder now if maybe there is something about our pain sensors that is more sensitive.
So the Waardenburg’s did not get diagnosed until my first born was born with Spina Bifida and all us sisters were with him at Hugh MacMillan medical center(used to be crippled children’s,but that was creepy).Someone wanted to do a study,but my ex did not allow it.Now I might get it looked into-might because Canada is having major issues with it’s medical system.I need to know what type I have-I believe type 4 can influence the facial nerves.Funny thing is,the lidocaine injection the doctor had done in my chin on the mental nerve actually resolved pain on THE OTHER SIDE.The gum is still sore but the pain shooting up the tooth is gone.
What’s up with that.
maybe if they do a nerve block on the other side it will fix the sore tooth.But you cannot tell them anything-and nerve conduction studies are not done.But if my nerves are all weird then there is not much chance of fixing things.
I am sorry you have all this weird ,bad,crappy soreness back.
You are lucky to be in England,not Canada
On the weekend I started to talk some lady I thought was going to cry.She has been trying to find a family doctor.She had cancer,had her ovaries removed,had her leg develop numbness during the operation,spent months in rehab,but developed a bad infection in the leg and needed IV antibiotics for 6 weeks at home .She went to a hospital geriatric clinic and they told her she is not old enough.She is 73.
And she has trigeminal neuralgia.
She goes to walk in clinics for her tegretol refills.
And she cannot find a family doctor.
I hope it is better in England.
And,damn it,I don’t have the type with the blue eyes.
One of my sister’s does though.
ellen, I have ATN as a secondary condition to chronic migraine and I have had the same strange numbing issues with my face. This is during dental work and prior to ATN developing, my entire life my face has not responded as expected – I would get shots for dental work on one side and my forehead on the other side would go numb. Or my eye lid would go numb while leaving my mouth with full feeling. One time my mouth did finally go numb for about 45 minutes while my nose remained numb for 72 hours. And this is with all different dentists over a period of 20 years, so it’s not just a bad dentist, it has to be something with how the nerves in my face/head work.
I am not blaming that dentist,but really ,someone in that much pain you should stop work on and contact the parents.Mt parents eventually went for sleep dentistry so I don’t think they were the ones approving of the torture.
As an adult I had a letter to carry with me instructing any dentist who ever needed to work on me to not rely on freezing to do the job.This letter was from a prominent dentist in my city
I would love to have a nerve conduction study of my face,no matter how painful.It might give doctors a chance at finding the problem.
Yeah, Ellen, nerve damage is always a really tricky thing to treat. Doctors, including neurologists, just blunder about, throwing whatever they can at it till something sticks. I’m in Scotland and our health service is still quite good, but under attack currently from the government, who keep removing its funding. But at least we’ve got one! I always feel really sorry for Americans who not only have to suffer with the stress of their complaint but also the worry about how they are going to pay for treatment, or whether their insurance company will allow it. That is no joke.
But what a bummer not getting the bright blue eyes. That’s really not on. The only way you can cheer yourself up with these rotten conditions is to celebrate their unique ‘assets’: “Well, I maybe got landed with Waardenburg’s but at least I have fabulous blue eyes and a snazzy white streak.” You need to put in a formal complaint to God!
That really is unusual Azurelle. I have an odd thing that I get nerve pains shooting from one part of my body to another. The most common one I have is a pain in my stomach being felt in my toe, or vice versa! But I think maybe everybody gets that to some extent? But you really do sound as if your nerves have some sort of cross wires. Have you ever asked anyone to check it out for you, or got a referral to an expert of some sort? I have to admit I can’t think for the life of me as to who would specialise in that. A neurologist? I always think of them as specialising in the head but, of course, they do the rest of the nerves too!
No chance of you getting nerve conduction tests, Ellen? Are they just not done on Canada’s health system (I’m ashamed to admit I have no idea if Canada is a private or public system?)? Or, of you’re paying for your own health care, is it just far too expensive?
Well you gave me a smile-formal complaint to God?Oh my-I cannot imagine what kind of formal complaint gets tossed back my way.
Canada has a public system-but dental and eye care is not included-for the most part.
So I get shoved from pay to not pay to pay.
Pain in the mouth is getting to be a pain in the A
I keep asking about nerve conduction study.When my hands went numb from the amitryptiline my doctor thought I had carpal tunnel-so I got nerve conduction in my arms.
But when I ask for my face to be done they are -no way.
I have made an appointment with a NUCCA chirpractor to see what he says.Monday.That is 340 for the first .assessment an then 65 bucks for each treatment.
I am getting to the end of my rope with this stuff.Usually am happy but dealing with doctors that make me cry just sucks.
And no choosing.
At least Americans can choose who they want.
I cannot imagine how anyone can afford to pay for the treatments.
I have asked for genetic screening-maybe they will be interested there.
Or I will just have to set up my own little science experiment.
Can’t be too hard.
I’ve never heard of that nerve conducting test thing! Although I won’t be bothering with it, really. How my face/head nerves are wired doesn’t impact me on a daily basis, heck, I have good teeth so it doesn’t impact me for decades at a time.
I had my shoulder reconstructed and the nerve block used stopped working completely in 8 hours rather than gradually wearing off over 3 or 4 days. I would say that’s a clear indication my nerves aren’t “normal” in general and not just with ATN.