Hi all.

Excuse the dramatic title thread but I dont really know what to call this, and apologises but, if this forum allows, its going to be quite the long story this one so best grab a large drink if you want to hear me woes - because I dont know who to turn to anymore :/

I've wrote up the following over the course of time, and I've finally got it into a state of something that should be readable, so I'll likely just copy and paste it, and potentially update it periodically as i get to remember more things etc.

(note I'll likely post in other forums too - im really quite desperate to try and find answers as it really affects my whole life - sorry from the dramatic line there but alas, its true)

So here it is...
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The short of it:
I had dental work (tooth extraction) around about 2008, and ever since, I get form of pressure/pain in the right (my right, viewers left) side of my head – approximately where the TMJ area is, but goes up into the head further I would say.

If it was just this, then I could just live with that, but it (or something) is affecting my memory, thinking, and concentration a lot of the time, and I get all manner of things such as headaches/migraines, dizzy feelings and a lack of being able to word things correctly or work out things that I used to normally be able to, etc.

In the beginning:
The tooth extraction itself was a strange situation. I’d had to have it removed as the tooth’s top section had broken off, but the rest of it was fine (i.e. it wasn’t dead or anything, but had exposed the root making it very difficult to chew on this side – the tooth in question is one of the teeth of the lower jaw – roughly mid-way between the bottom front teeth and far back molars) but broken enough that the dentist wasn’t able to try and save it, and had to remove it.

When he was removing it, he was having difficulty getting it to break out, so he ended up twisting clockwise and anticlockwise… this bit was agony as (to how it felt), my lower jaw was twisting back and forth whilst he was twisting it out – much like if u twisted the end of ruler one way, and the other end in the opposite way, that “twist” is how it felt – going one way as he twisted the tooth one way, and then the other with the other way.

For reference, I had broken the symmetrically same tooth on the other side of my mouth a few years previously, when eating, but while it had exposed the root and meant I couldn’t chew on that side any longer, I never got it removed/addressed (until quite recently in Nov 2012), so this meant that I ended up just eating on the right hand side of my mouth instead.

The GP’s have tried various things over the years…

Initially, I was prescribed some medicine and antibiotics – they were thinking it was an inner ear infection (at the time, I’d only had the symptoms come and go a few times over the course of a year – hadn’t realised how serious it was going to end up getting at that time) – but none of that helped.

Then we moved on to various antihistamines, and indeed possibly other various medications that I don’t recall the names of, and the last thing as far as pills goes, was a generic antidepressant (can’t recall the name but used to counter bedwetting, and does mention something regarding the head), but none of that has noticeably made any difference.

I had kind of let all this slip over periods of multiple months at a time after a bunch of pills attempted and then subsequently failed. As this was a few years ago, and my memory is really quite irregular at remembering things these days, it could possibly be the symptoms went away, or that I felt I couldn’t really be in the doctors every other week for fear of angering my co-workers and so on, so I just continued on until around the end of 2011 (where I tried two courses of that antidepressants that had no effect on the problem in hand).

Again, after leaving it another 6 months (the first half of the year of 2012) resulted in me going back to the doctors and trying to discuss it again with them at the local doctor’s surgery – but either with a different doctor, or continuing where we left off again with the diagnosing and treatments.

Here we likely tried a few things of the usual things (can’t recall at present) once again i.e. a normal blood test and usual questions about things – and eventually, we got to the point where the doctor suggested going to see a maxillofacial surgeon/consultant.

As it would turn out, at the same time, (roughly Q3 of 2012), one of my work colleagues I was discussing this with told me about TMJ syndrome and wondered whether the head pains etc., could be some form of TMJ Syndrome, as a lot of what he was saying about the symptoms were spot on with what I was feeling physically.

Some of the symptoms here are things like jaw pain (predominantly on the one side), clicking/grinding/crunching sounds when moving jaw around, a “clunk” or “shift” on one side of my jaw when opening and closing it straight, and so on (covered more later on).

Once I got an appointment, and meeting the surgeon for the first time, he was surprised that a doctor referred me rather than a dentist. I said that I hadn’t seen a dentist fully for a few years (had the odd spot check over the years but not proper set of treatments or anything that would constitute attempting to go through the issues or get a dental makeover as such).

He could see that I had only been eating on one side of the mouth without me telling him this, and also, did some sort of grip with his hands on my jaw and got me to open and close my month/jaw, and was very easily able to feel the affected side go “clonk” as I was opening and closing my month to his instructions.

Without going into every detail of the following appointments that follow, they said that first of all, I’d need to see a dentist and get the various normal dentist stuff sorted – the usual scrape and polish, any fillings, the other side fixed (aka the other tooth either fixed up or removed and healed) before we could continue anything further.

They did do a sort of jaw x-ray thing that you bite down on some plate thing, and this scanner goes around your head 180 degrees to give a full jaw scan, but they didn’t see anything from that that I know of.

In my opinion, to see what’s different from one side to the other, they’d need to see it in motion under a x-ray [some sort of x-ray video of my jaw opening and closing, but I suspect they either don’t have that technology where I have been going to, or I’ve been watching too many films and it doesn’t exist].

So I saw a new dentist and over the rest of the year – leading up to Xmas 2012 and over a few months – I managed to get a dentist that sorted various bits and bobs out within my mouth, and whilst we tried to save the broken tooth on the other side of my mouth, it was too painful to continue using that [and trying to eat on that side, given that’s part of what I was needing to do to try and alleviate the continual eating on one side all the time – as the surgeon/consultants school of thought was to stop applying pressure of eating on that side continually as it might help allow that side repair itself].

Extracting the tooth itself was fairly painful but done as gently as possible (as the dentist knew of my TMJ issue and reasons for getting my teeth all sorted asap etc.) as this tooth itself wasn’t dead, so it didn’t come out easily unfortunately, but after a long time and alas, the attempts of antiseptic injections not having any effect on the tooth itself, it came out and while it seemed to take longer to heal over than the other “butchered” one, It hasn’t caused me to think anything else has snapped along the way so far 
Once it had healed enough and I’d had a short time to start eating on that side, I got another appointment to see the guy at the maxillofacial department and see what was best to do next.

He suggested a “splint” which is classed on my doctors job notes as a “bite raising device” and likely pretty similar to a mouth shield/guard used for people that grind their teeth when they sleep. As I told them, as far as I and my partner was aware, I didn’t (and don’t) grind my teeth, but I don’t think it’s particularly given to me for that reason – and more of an aid to help keep my jaw straight, as the idea is to use it as much as possible.

Its unfortunately not that easy to really use it in the day as it would be a bit difficult at work and so on, so from the start of receiving it (various stages i.e. getting a mould made first), I’ve worn it whenever I’ve gone to sleep aka every night, or if I’ve gone for a few hours of sleep at other times, I’ve put it in etc.

It’s around 6 months later now (July 2013) and alas, I don’t see any change. Unfortunately, since getting it and after a little while, I had planned to go and see the doctor that has been dealing with my issue – but he doesn’t appear to be at work anymore (medically off work or something) .

When getting the “splint”, I asked so what if this doesn’t work and I didn’t really get any coherent answer, other than them expecting it to work fine and sort out the problems, so I’m not sure really where to go from here.

I did attempt to discuss it with a temporary doctor about 2 months ago when I was there for a different reason, I’ve not got anywhere (she thought maybe it would be worth doing some diabetes type of blood tests to see if there is any deficiency regarding sugars or something, but the results were all normal) with this and something I noticed by chance when Googling the other month was something called Brain Fog (Cognitive Dysfunction). An example description can be found here (here, is a google search of "brain fog" and the article i was looking at - amongst others - is the one at squidoo.com called Brainfog (Cognitive Dysfunction) by Lorelei Cohen... will update this to a link when i have 10 posts on this forum )
is spot on with what I feel in my head as far as the non-physical stuff goes and the picture example and 7 symptoms seem spot on with how I feel at times when its particularly bad.

Not an exact science alas, but it certainly seems to add up to me, and while I don’t want to appear a hypochondriac, I do genuinely agree with the points I’ve read regarding it and its certainly how I feel when these “foggy” symptoms are bad - sometimes with the head pain in the TMJ area and right into my head/temple along with it, and sometimes without.

I’ve been trying a few vitamin boosting things – initially I read about boosting Co-Q10 which can apparently help cognitive functions, so I got some 50 mg tablets containing the Co-QH [the active ingredient of Co Q10] thing and took it for few weeks or more but it didn’t really end up helping that I could tell (perhaps I needed a vastly higher dose, I’m not sure).

Following that, I tried and still am taking Bassetts Soft & Chewy “Everyday Health” (contains a normal set of multivitamins, including B5 that’s for Normal Mental Performance apparently) and also their “Vitamin C” pastilles too each day. Not sure they are helping my head but they taste nice and last me a good month or so, don’t cost the earth, and probably help boost me up – if only a touch.

Anyhow, all I know is that I need to do something about this, but what that something is, I just don’t know right now.

I live in the middle of nowhere as far as medical resourcing goes aka I live out in the hills, and not in a city, so I don’t even have any private health centres or specialists near me that I can pay money to see, but at this precise moment, going private does seem to be the only option but I have no idea where to look to get the best deal on that, or whether there is something I (or the doctor/specialist) are missing that might just solve the problem perfectly.

I’m just hoping someone somewhere out there may have come across or experienced this, and can offer me some sort of way forward with this as its getting more and more catastrophic (sorry if it sounds OTT but each year seems worse than the next and I don’t know how much more it’ll take before life gets even worse – I’m referring to keeping my job that I love (or did when I could think properly) and my partner and friends who seem to be getting more distant as time passes – my fault, not theirs alas).

(have some more thoughts to put here but can’t think of them right now – I will update this bit when I can remember them)

Note: From this point below, this is something that I’ve revised which i wrote some time ago that may help expand a bit more on things but may be a bit out of date in some places as I’ve gathered further info and what not…...


Some further detail about the symptoms – likely some duplicate information here and there (it’s hard to write a document like this when you have problems concentrating / being coherent at times):

The symptoms are somewhat like "pressure" in my jaw and head, predominantly on (my) right hand side of my head. It tends to originate at the very top of my jaw where it interconnects to the rest of my head, sinuses, neck and ear area.

It used to come and go, and was periodic, but in the past 9 to 12 months, it tends to be mainly continual to some degree, and seems to flare up more depending on what i am doing or the surroundings.

It is particularly annoying when I travel by car or bus, which is often these days as i go to work on the bus, and going up and down hillsides bring it on, while travelling on a train doesn’t really affect it that often.

Also when the weather changes - from hot to cold (or vice versa) or when the pressure in the air changes (like when a storm or showers approach/start).

Exercising at the gym also results in the same affect and tends to be quite painful when running/rowing/using a cross trainer machine. Similarly, using the equipment involving weights also brings it on. It wasn’t as bad in the few couple of years, but i've had to stop around about a year or so ago, as it became too uncomfortable to use.

Sometimes trying to focus on technical aspects at work, which never was a problem before, seem to cause it to flare up as i start focusing and thinking on the job at hand, either during or at the end of it, it tends to really tire me out which didn’t use to happen, and often i find myself really tired throughout the day (say by the afternoon) or indeed in the evening. Have even tried getting a bit more sleep than i used to, in case it was that, but it doesn’t seem to have helped at all.

I can’t really seem to clear it when it happens, although in some cases, and probably not a particularly good solution, is to stick my fingers in my nostrils and try and blow out of them (if you see what i mean). Stretching my jaw around, pushing against parts of my jaw or TMJ near
the ear, or to force a wide yawn action can sometimes do it too.

I find it more difficult to clear since it started a few years back, and while trying to clear it doesn’t appear to cause me any actual problems, it does worry me in case one time i try too hard to clear it and cause damage somehow (via one of the methods of relieving it).

More often than not, this either doesn’t really clear it at all or not fully, or takes a prolonged amount of time doing this. These days, it tends to always be present to some degree I find.

Sometimes when I’m trying to clear it and I’m moving my jaw around, I will get a sudden "clonk" sound from within my jaw and it clears significantly. A lot of the time, when moving my jaw around, i tend to hear little clicks/pops and "grissle" type of sound.

It all seems to stem back to a visit to the dentist i had a few years ago where they took a tooth out and had to rock my jaw to pry it out - the top part had split off, but essentially the bottom part was healthy still, so wasn’t easy to get out i think. Felt like my whole jaw was bending back and forth when he was trying to pull it out.

I've had MRI scans (approximately after about a year or so of the initial tooth extraction) on the brain part of my head (couldn’t get a clear answer as to whether they scanned all my head and how far down the face it was too), blood tests, inner ear infection medication, suggestions of homeopathic head massages, and the last treatment from the GP is a generic/multipurpose antidepressant (Amitriptyline) - first 10mg and 25mg (took two - to be sure – full prescriptions of these, leading up to Christmas 2011 time, but no noticeable help or effects, other than at first making me more tired because of their side effects), and so far, results are negative.

I also find, since back when this started, that i find it much harder to focus and concentrate, and i find it much more difficult to multitask too, which makes things difficult for me in my job (i work in IT in a very high level technical manner).

GP's have suggested its down to stress at one point, but up until getting this problem, i was generally happy and didn’t feel any stress at work. Now I’ve got it, it is stressful because of it being hard to concentrate as well as i used to.
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Hi Mister E,

I am in the dental field and can try to help you here. This is my take on what may be happening to you.....

Obviously the musculature structure of your jaw was injured during the removal of that tooth in 2008. The TMJ joint (or hinge to make it easier to visualize) was possibly manipulated off of the condyle (where the upper and lower jaw articulate). If the jaw remained in this unnatural position for any length of time, it could have caused irreversible damage to the joint. Over time the muscles and ligaments will try to compensate for the jaw being off kilter, but the bony area at this junction will deteriorate which often results in arthritis. As you can see by my description that untreated trauma to the TMJ joint can have progressive long term consequences.

The dentist should never have manipulated your jaw the way he did. I have seen that done many times and it never results in a positive outcome. Most oral surgeons know not to remove a tooth this way and have other means of dealing with a difficult extraction. I can tell you that some people recover from this occurrence, others deal with temporary or permanent intermittent pain and then others end up with a permanent problem. It is common for the initial symptoms to worsen over time if the initial injury is not corrected soon after it occurs.

I'm sure you have read the symptoms associated with true TMJ disorder. They are numerous and vary in degrees of debilitating. It is typical for the patient to think their is something wrong with their brain or their ears... etc. Brain scans come up clear, infection markers in blood come up normal, eyes check out fine... etc.

I often tell patients who have this condition that many TMJ disorders are the result of the worst muscle spasm you can imagine. Every day life aggravates it but especially at times of repetitive chewing on one side, stress, emotional upset, critical thinking, concentration, fatigue, depression ..... that is when symptoms can be at there worst. This in part is due to the tightening of the muscles that surround the injured TMJ joint. These people also tend to be unaware that they clench and/or grind their teeth. Most of us who have this habit are not even aware of it.

Wearing a bite splint at this stage may or may not help because given your jaw symptoms, I think you have developed crepitis in the joint which means you have bone rubbing against bone. The splint is designed to open the bite and relieve the spasm by placing the jaw joint in the proper position. The problem with that logic pertains to people with long term TMJ problems because it is uncomfortable and/or non productive to try to reposition the jaw back into it's "proper alignment". People with recent TMJ problems generally fare well with splint therapy.

With that said.... splint therapy can be helpful in conjunction with other forms of manipulation therapies. Have you tried chiropractic manipulation? Or cranial osteopathy (craniosacral) therapy? The splints can also be helpful during meditative therapies ... have you tried bio feedback therapy or yoga?

One key piece of positive information is this... you can learn to live more comfortably with a severe TMJ disorder. It takes some investigative work on your part to find someone who has a clear understanding of just what you have going on. This is usually someone of the non conventional medical/dental field... like chiropractic. Then seek the therapy to help you learn how to recognize and then release those tensions in your life that cause your muscles to tighten up ....learn how to concentrate without tension ... (bio feedback can help you achieve those things). Making changes for the better requires daily regimens to improve the quality of your life. Don't give up, don't despair... it can and will get better!

Does my interpretation of your situation make sense to you?? Very open to your feedback.

Bryanna

MisterE,

the jaw pain symptomy you describe sound quite familiar to me. I have right side jaw pain which seems to come from about 2 centimeters from the ear towards the mouth. I usually get it right after I wake up. Most of days, it dissolves by itself during the day (or with help from mild oral analgesic), but some of the days it travels up parallel to the ear to the head and no analgesic helps that one (tried ibuprofen). About every 2 months it flares up into horrible migraine, once I almost threw up. It's been happening for about a year to me, as you describe, not that often at first, but for the last two months I've had it 80-90% of days (keeping a log now).

Four oral surgeons and one otolaryngologist have inspected me so far, ironically, only the otolaryngologist said he's like to see a CT scan (this is my next step) and says my TMJ does not feel normal (all four oral surgeons think joint is ok as I have no problems or pain opening my mouth and grinding).

Oral surgeons have two theories at the moment.
No. 1 is pyschological - stress causing muscle problems. I've been given xanax and had to do some exercises for the facial muscles for a month but hasn't helped so far.
No. 2 is a bit more complicated and "out-there" and also involves muscles around the TMJ plus problems with atlanto-occipital joint (in the neck) which is caused by bad posture - they say my body is out of alignment, causing strain on muscles on one side. I also have some pain in right arm muscles from time to time and also in pelvic area - this could all be connected. I've been referred to a physiatrist (rehabilitation physicians, NOT psychiatrist, although I could use that on too, lol), waiting for the appointment.

The otolaryngologist (ear-nose-throat checks ok) says I've probably been eating/grinding food on the left side for a prolonged period and that caused problems with my right TMJ.

BTW, most of the doctors I've seen so far say teeth problems should be excluded first, as most of these one-sided jaw pain episodes are teeth-related. Have you had any root canals done? I'd check all of them for possible new infections first. I'm trying to get my right-side teeth checked, I've got a few suspects to exclude there...

Hope this helps you with some ideas...

Peter