Living With Facial Pain

TN Diagnosis but I Disagree


My gosh
You are not in your dotage!
Have not heard that word in ages.
you need a cane and a widow’s hump first,I think


Yeah, Aiculsamoth. And when you consider Coeliac and NCGS are also known to cause everything from ‘brain fog’ to schizophrenia and depression then a connection’s not that impossible. It’s a bit like Ergot, a fungal infection of grains, which can cause hallucinations, irrational behaviour, convulsions and death! That, of course, is something caused by the fungus itself which, to quote that peerless resource, Wikipedia, is because “Ergot alkaloids have a wide range of biological activities including effects on circulation and neurotransmission.” But it does have similarities to how gluten poisons the system of those who can’t process it. It’s not a coincidence either that the gut is ‘the second brain’ and gluten’s destruction of the stomach in coeliacs causes actual brain damage.


Hah! No, I meant when we are all in our dotage and it’s too late to help us - then they’ll come along and say “Oh, yes, of course, it’s caused by NCGS allowing immune system by-products to build up, which then travel to the brain and can cause a deterioration of the myelin sheath in people with the XYB334+ genotype.”

God, it says something about scientists that that almost sounds authentic!


Can’t remember who said it, but they stated all disease starts in the gut. not saying I agree but i’d have to agree most that are aquired, in fact just about everyone that is developed that we didn’t have at birth there metabolic. and what do we do prescribe drugs. I’m on metformin for diabetes type 2, Ok so why after five years are you still overweight? I’m on metformin, job done. Eh no, yet this is mirrored in just about every disease, strive for health, the only way to do that is eat well.


that spell worked(obviously the great big red capital letters I sent you first did not work)


I find it very hard to believe anything about gluten right now. It has every indication of being “the disease of the week” – or in this case, the decade. Everyone is off gluten or blaming gluten right now. Remember when eggs were basically equated to the anti-Christ? And all health issues were because you dared to eat an egg yoke more than once every two weeks? But not any longer.

Most dietary studies take place over a period of 14 days and an a fairly small scale. I just don’t think you can believe what “they” say about most foods. Heck, for awhile there caffeine was was the root of all problems, now they’re saying in moderation it’s good for your heart and helps brain function.

I’m not saying don’t eat healthy. I’m saying don’t get caught up in pop-science that seems to spring up every few years about what is and isn’t good for you. Too much of anything is bad for you, just like too little of most things is bad for you. It’s all about balance.

Heck, I grew up in the 1970’s eating catfish straight out of Lake Erie when the water mercury levels were at their peak. According to “them” I should basically glow in the dark at this point but I’m fine. No mercury issues or mercury-based issues. A fairly unhealthy obsession with hunting Lucky Stones on the beach, yes. Health problems? No.


Hi @Meldaver. You mention:

Great news - you do! If you click on a member’s avatar or screen name, up pops their profile. Actually, some seem to be the short (too short) form, I’m thinking the whole profile only shows if members have joined relatively recently, I will check. But anyway, you should be able to see most members’ back stories that way.

If anyone feels their profile isn’t as informative as they would like it to be, there’s always the option of adding to it.

Christina from Moderator Support


I hear you, Azurelle. Because I’ve spent my life either dieting, trying to diet, or (I’m ashamed to say) binge-eating, I’ve come to find every new health food, diet and food villain highly suspect. The only things I respect in ‘nutrition’ are the suspicions about wheat, simply because they’re backed up by coeliac disease and, to a lesser extent, by Non-Coeliac Gluten Sensitivity research, the condemnation of sugar, and the rule that any prepared ‘food’ with more than 5 ingredients should be left on the shelf. Do I obey all this hard-earned wisdom? Hell, no. I wish. I keep trying, and keep failing, but although I would love an excuse to ignore all these evils and embrace my love of sugar/fat combos I know damn well those things make me sick, sicker than I generally admit. I like to keep kidding myself.

You’re absolutely right about gluten-free being an (annoying) fashion. Absolutely, lots of people who claim to be ‘allergic’ to wheat absolutely are not. You need to be properly tested before you can claim that, but unfortunately in the UK our NHS tests for coeliac disease and nothing else, and they don’t even do that too well. After that you are on your own. I actually have biological markers for coeliac disease (low Iga) but I’ve been tested for coeliac several times and I just don’t have it - at least not according to the tests, which are not foolproof, but eventually you’ve just got to quit on an idea (obsession!) and get on with your life. I don’t eat gluten-free, but I have in the past, and always felt better for it, but I’m lazy and gluten-free is hard, so although I know it’s implicated in the health conditions I have, I choose to ignore it in favour of hoping for the best - that way I get to eat toasted cheese!

If anyone ever did get definitive proof on NCGS, or I was tested in some way that proved I had it I absolutely would give it up, but until then I’ll take my chances.

Interesting what you say about your formative fish-eating and mercury though. Lots of people believe that mercury poisoning causes neurological issues (well, it categorically does - that’s not a rumour, but what constitutes poisoning is the thing they disagree about!) and I know I panicked about my fillings when I first got TN, but I looked into it and it seems to be safe, up to a point. However, interestingly, for a year and a half before I got TN I ate tinned tuna every day, sometimes more than once a day, so it does make you wonder…

P.S. I never eat it now!


The problem with saying something causes a neurological issue is that there are currently 600 things that fall into the category of “neurological disorder.” So, at the end of the day you should be able to make ANYTHING fit into at least one of the categories! It seems to all circle back to the fact that we just don’t have good working knowledge about the nervous system yet.

As for eating tuna and mercury poisoning from fish… do you remember in the 1970’s when artificial sweeteners caused tumors in lab rabs? It was going to be the end of sugar subs until it was discovered that rats are prone to tumors anyway and they were being fed something like 400% more artificial sweetener a day than any human would ever be able to consume. I don’t think you can possible eat enough fish to get mercury poisoning on a third hand basis from it!


I was going to mention the mercury in the fish neurological thing too-but I forgot.
That’s the brain these days,
You just wonder what causes this.i had a son born with a neurological problem(spina bifida)
Could my pain be related to my genetics?
I don’t know.
I just want it gone.Far away so it can never hurt anyone again.
I am still wondering whether my weight loss-25 pounds and counting-can be attributed to not liking the taste,texture of bread anymore.
It repels me.
I still have a loaf in the fridge from before Christmas because I LOVE GRILL CHEESE SANDWICHES.
But-even though I love them-I cannot stomach them.
Fridge is full of stuff I used to eat and every garbage day it is WHY did I buy that when I know I won’t eat it.
If I force myself to cook it or make it in a salad I eat a spoonful and all other ingredients get tossed out and I go to bed without.Because I do not get hungry.
Love my body.Just the old hag face on the top with no teeth does not belong with the body.


**it is definitely caused by damage/injury to the maxillary or mandibular branch of the 5th nerve. And once injured it stays that way for life. There is no permanent cure. My TN started with injury to the maxillary nerve. But mysteriously the pain goes away on its own for **varying period in my case it lasts between 6 months to 2,years. But the pain DOES come back. I asked several doctors about the reason for this spontaneous remission but till date nobody is able to explain “why”


It’s because it isn’t injury to said nerve if you have remission and then reoccurs, the logic is just daft, ish, hence why your doctors can’t explain it. The ‘why’ is something else, Why would it hurt then return if it was trauma to said nerve? It never was. It’s healed, pain gone and now is back??? something else should be included in this picture- diet, posture and stress.


I’ll throw my “two bob” in as well, I dropped Gluten 7 or 8 years ago, as well as cutting back on the Dairy though we still do a bit of yoghurt, and I definitely noticed the difference. I tend to view health as an equilibrium so the more negatives you remove and positives you embrace then you begin to shift the balance in favour of healing and that’s what we are doing with multiple life/diet/behaviour changes.

I do think that postural issues are at the core of a significant % of TN cases, but through our processes have found that there may be a number of underlying factors that contribute, as I’ve said before she develops upper back/shoulder tension, this moves up to her neck, her right shoulder lifts and the TN becomes more prominent.
So I started researching the relevant muscles, and then when I looked up Levator Scapulae, it connects the top of shoulder blade to C1, 2, 3 & 4, home turf of the Trigeminal nerve, so if her right shoulder is getting pulled up, then this may also be causing unbalanced tensions in the upper cervical vertebrae and her TN is on right side as well.
The image shows it clearly:

The massages I give her are targeted at Rhomboids, Trapezius, Levator Scapulae and any others in those areas, she sits on a low stool, I kneel behind her and use my fists, forearms & elbows working up between shoulder blades and up the neck to the base of skull with combo of massaging & stretching. For us this has been more effective than any of the external therapies we tried, but the road had to be travelled to gain a deeper understanding.


Although this may seem a little outside of the box, you seem receptive to most. As a physical therapist, unsurprisingly I fail with some patients. I reckon if it wasn’t for stress, I wouldn’t have a job, sure some folk have a weakness in said area but it isn’t until stress is loaded on top it becomes a problem. I’m sure I’ve stated this before, but bear with me.

E.g. Had a late fifties patient with neck pain and headaches, and this is an example of many, after eight treatments she had improved say some sixty percent this was OK but slow, during sessions she mentioned abuse by an ex husband, culminating being thrown out of a second floor window. Some what despondent with progress and recognising my short coming I referred her to someone who specialises in stress release. I’ve done this many a time with mainly positive results. In the case I mention. I didn’t get a thank you , but a why wasn’t the referral made sooner (might have been the fact the patient on asking didn’t give me the initial info), either way this patient had two treatments, and in her words was a 100%, resenting the fact she had spent £200+ pounds with me after my recommendation, after suffering 20 yrs plus since the trauma of being thrown out of a window.

This is not an isolated case, some referrals by me, haven’t helped but the vast majority have from headaches to low back pain and more. The emototional trauma having in some case happened years before.

The phrases they’re a pain in the neck/ butt come to mind for examples. As extension I could kick him in the but, won’t, hence the sciatic pain in my dominant leg.

If I’m able to recognise these patients and it often takes a while, they don’t like putting their cards on the table when we first meet, referral often provides dividends, OK not in the case of the lady who spent and then benefited.

Sparky I’m not suggesting this is your other half, but I’ve experienced many folk who have held on to emotional trauma in a physical manifestation for years, in which I’ve been of limited help before referral, and the difference has been remarkable and often makes me look like an idiot, so be it . Ive had patients see me ten times a year, I help, then a referral, don’t see them again, I’m told by the therapist, who may see them on a rare occasion they are doing great, e.g a lesbian in a Sheikh family who couldn’t? she didn’t say why.

It’s often the case we hold fears, think phobias often from an early age, because, because. Often manifests physically.

A lot of people poopoo it, I’ve seen it first hand time and time again in twenty plus years, sure no evidence, no money in it. Just I say so, and experienced it.

Again not saying it applies to anyone on here, but the therapy I’m talking about is the Eeamen technique, forget about the copper plates, unneeded, it’s all about learning to breath again. Where’s the next blow coming from? You can hold on to that thought for a long time depending on the original trauma, and in doing so your levator scapulae, rhomboids and trapezius, scalenes are going to work over time in a repressed flight or fight response, which in this day and age of acceptable isn’t going to happen.


'moth – I agree with you completely. Holding onto past trauma and past or current stress can manifest itself as chronic pain in any number of ways. I went to a chronic pain couselor for a bit and we went over all of that in great detail. She sees many people who have past trauma resulting in current chronic pain. Mind over matter is an amazing thing.

That being said you have to be careful to not avoid or ignore actual physical causes that are diease manifestations. No one likes hearing they have an incurrable diease with limited treatment options but it’s often something that has to be faced (which is a different kind of stress!).

I like the medical school saying “when you hear hoofbeats, look for horses.” That is, start with the obvious and work your way through everything until you find the root problem.


I agree with the hoofbeats and horses, trouble is the patient often doesn’t hear them, so when asked about stress and tension, the initial answer is often “no more than most”. Without a relationship, which in primary care, at least in the UK due to time constraints, rarely happens, asking the question rarely conveys it’s importance. If you live past xbox, most of us have had an event that still, if not physically, defines us now. Often it will be a physical manifestation.


Sometimes those hoofbeats are just some guy with a couple of coconut halves, no matter how hard you try not a horse to be seen.