pressure behind eye/jaw pain/migraines

[landwhale]

hi all,
just wondering if anyone has experience with this...

I've been having problems with my jaw now since september, it started one morning out of nowhere, basically I cant open it more than about an inch/inch and a half. it started off pain free but now it is constant pain all the way up the side of my face almost 24/7. im on 600mg ibuptofen 3 x a day which helps for about 1.5hr each time.. also, when its really bad my jaw sticks out a few cms out if my face-its very noticable and really freaky to look at when I move my mouth.

since around xmas time I have been having a really strong pressure feeling behind my left eye (the side of the pain). I've been having horrible migraines and have been seeing coloured light flashes (which I guess is a migraine aura??) i've also been having very bad earache which hasn't been going with the painkillers-its just a very dull pain constantly.

I was diagnosed with tmjd as it was the lead up to my wedding the gp thought I was grinding my teeth through stress however my dentist has said it doesnt look this (my teeth didnt show signs of wearing I guess....?!) and the mouthguard iv been wearing has done nothing so I really dont think its that.

optician has said my peripheral vision on that side is quite bad too, (never had probs before-this us very recent). she suggested it could be my head/eye causing jaw probs as opposed to vice versa. possibly a mass behind my eye? (she wrote to my gp saying I needed mri asap... gp is absolutely useless)

I was referred to maxi facial (is that what its called?!) back in oct, and still heard nothing despite dentist, gp and optician all writing to say I required emergency consultant care. I havent had any scans yet.

dentist thinks it could be a tendon caught around my jaw bone but I dont think that explains the pressure and head and ear pain.

I've considered going to a&e this week just because then I know I will get a scan.... but thats really bad isnt it?!

I have been constantly phoning the maxfax but phone keeps ringing through with no answerphone, have also emailed them with response.

im normally quite patient as I know theyre busy but the pain is getting unbearable now.. I actually had uncontrollable tears in work today just from the pain, and its changed my personality, its making me really miserable. I cant eat properly, I eat most things with kids cutlery and cant laugh or talk at length without being in immense
pain.

really sorry for the long post, didnt want to drip feed. also very sorry for the crap grammar, im on dh's tablet and I didnt realise it doesnt autocorrect....

thank yiu if you've made it this far

I'm sorry to hear you are in pain. I have TN so I know how miserable pain in your face can make you feel.
Mine was initially diagnosed incorrectly as dental problems and it is horrible suffering when you shouldn't have to. With my condition, I chose to pay extra privately to get to see a consultant. I needed a gp referral, then paid to see a neurologist. Is it a possibility for you to get to see a maxifacial person? We shouldn't need to, but sometimes it is worth doing it.

I was discussing this with my mum yesterday, I thought I will give it another week or two and if there's no joy after that time I will probably pay to go private. I'm hardly rolling in money so this is something I'd like to avoid though :-/

Would it be worth going to a&e for a scan or is that not the done thing? It seems wrong for some reason! I had random migraines when I was pg so I took myself in on the weekend, got admitted had MRI next day.

Sorry to hear you''ve been going through this as well :(

Sorry you are in pain with this. I've suffered from tmj pain and headaches for years because of a displaced jaw joint so understand how awful it is.
Can you go back to your GP or dentist and get them to chase the maxillofacial referral for you? 6 months seems a long time to have not heard anything, is this normal for the hospital?
Or can you go through the hospital switchboard, they might have a different number for the dept than what you have?
Are you still wearing the mouthguard? This might be causing you more problems.
If you are in tears with the pain you need to get seen by someone. Hope you get this sorted soon.

It sounds horrendous and if I were you I would go to A&E. You have given the system long enough. Go when you are in a lot of pain and then they can see how bad it is.

The gp has phoned twice, as has my dentist. I've tried them through the switchboard and their direct number and tried emailing them but nothing. A friend of mine had the same problem when her baby was referred for tongue tie. Normally the hospital is fab and I can't fault them, my kids have various kidney problems so we're there quite frequently and appointments and scans are organised ASAP. Perhaps it's different because i'm an adult.

I've stopped wearing my mouth guard- spoke to
My dentist on wed when my ds had an appt and she advised me to stop wearing it as it was uncomfortable (couldn't open mouth wide enough to get a decent cast) and not helping.

Think I will go to a & e tonight. Typically it's not hurting as much right now as it has been. Can only really go tonight though due to child care so will have to hope they believe me. :-/

Thanks for your responses x

Let us know how you get on.

Good luck. x

Didn't end up going, dd wouldn't stay with my mum or dh as is v clingy atm. Will put her down early tomorrow and leave her with dh then go! Might actually try and get emergency gp appt in the morning and be quite pushy. I'm normally very forgiving which is prob why nothing is happening, but im getting annoyed now and am in agony so will go in guns blazing! Sleep now- had about 2 hours last night :( thanks again everyone x

I went to the gp and he doesnt think its tmj at all, he suggested it could be trigeminal neuralgia so has referred me to neurologist. he then read the letter from optician again and it seems my peripheral vision is worse than I realised as I have a total blind spot (didnt even realise) so he has arranged an emergency mri just to check its not a tumour or similar causing that (which is then causing the jaw problem) he aaid I should hear from them in next few days. fingers crossed!

I wondered about trigeminal neuralgia as that's what I have and some of your post sounded familiar. Other bits are not symptoms though - the locked jaw for example is not a sign of TN at all.

An MRI will help rule out MS (which I also wondered about when you mentioned something affecting your vision) as well as tumors. I'm waiting for my MRI results now as they take a few weeks to come through.

I think the gp suggested it could be a dislocated jaw which either caused the tn or is coincidentally alongside it. although after reading up on it I don't think it is that tbh.

I don't really know what I want the outcome to be now tbh, obv tmj is least sinister but there is no 'cure' as such meaning I'll be stuck with this pain and lack of open mouth for god knows how long. will just have to wait and see... hopefully won't be too long.

Key question. Do pain killers (paracetamol/ibuprofen) help at all.

If they don't touch it one bit then it could be nerve pain.

Actually, scratch that. Just re-read your OP and you say it does help. So it most likely isn't nerve pain.

A dislocated jaw sounds likely for the limited movement and pain. I struggle to think how it could cause TN though.

TMJ is less sinister, but I've read lots of people who have that get relief from a bite guard, but you've tried that to no effect.

TN is scary, but manageable for most people and without surgery. I'm on gabapentin and it's doing a great job of managing my pain with no noticeable side effects.

If the GP suspected TN, did (s)he prescribe anything? They should have as another way of actually diagnosing it (as well as the pain killers thing) is whether it responds to anti convulsants. A GP suspecting TN should prescribe carbamazepine as a treatment and a diagnosis.

Good luck getting a swift MRI and some answers -and some relief.

From WebMD

Temporomandibular disorders are a group of problems that cause pain and poor function in the jaw joint and the muscles responsible for jaw movement. They're also called TMD, or TMJ (short for temporomandibular joint) disorders.

TMD can be just a nuisance or it can be a life-altering problem. When it's less severe, crunching down on a hard bit of food can shoot a bolt of pain through the jaw joint unpleasant, to be sure, but not serious. With time and simple home care, the pain usually subsides.

But with severe TMD, simple tasks, such as eating or talking, can no longer be taken for granted. “It can be incredibly debilitating,” says Matthew J. Messina, DDS, a dentist in Cleveland and a spokesman for the American Dental Association.

For some people, the disc within the jaw joint slips out of position during sleep, he says. “All of a sudden, they’ll wake up in the morning and they can’t open their mouth more than 10 millimeters and a normal opening is 50 millimeters or so.

I don't know where you are but at my local hospital a private MRI is £220. I had one last year. Obv that might nt be do-able for you or applicable where you are but thought I would give you an idea of possible cost if you decided to hurry things along if the appointment doesn't come through quickly.

ibuprofen helps, paracetamol doesnt though.

thank you for that web md clip, reading that it does sound like perhaps I have a more severe case of tmjd

mri scans are £200 in our local private (well, they were when my mum worked there ten years ago.....) I know that if I pay I will have an appt through...!

I have an appt for the eye clinic weds. nothing sbout an mri but its something. feeling crap tonight, migraine, shivery and sick. dont think thats related prob run down from lack of sleep. dh is being loud grrrr

I didn't have the MRI privately. If your GP has written a referral letter to a maxifacial consultant, and you can find a local one privately, then you can book a private appt with them and they will ask you to get your GP to fax the referral through.

My neuro was private, but he then stuck me on his NHS books the same week and put my MRI request in himself which really sped things along.

Ibuprofen does nothing for TN, unfortunately. I wish it did. Even strong co-codamol doesn't touch the pain - although it did make me so loopy that I could sleep through some of it. And there's no limit on mouth movement (except for trying to stop the pain) with TN either.

Good luck with the eye appt wed.

Yeah, I really don't think it's tn. I've developed vertigo since Friday too. Well I think that's what it is, walking and being in the car makes me very dizzy and sicky. Also piercing pain in my head when I bend. It's all a mismatch of symptoms. Part of me thinks it's all stress induced (though I wouldnt say I'm any more stressed now than I have been in the last few years...) and then the other half of me has just finished the last season of house so I'm coming up with every eventuality of how something has caused so and so which then caused something else etc

Dh went privately with his neuro and he also put him on nhs books. Even when we knew we had to get an emergency appt for him to write a medical report he didnt charge when he prob should have. He's a Very nice man. :)

Please google 'giant cell arteritis' and see how your symptoms fit this.

If you think it might fit please print the page off and take to your GP ASAP!!

To be honest, the vision loss alone requires an urgent assessment. You must either present back to a and e or insist your GP actions an urgent referral.

Good luck

I'd never heard of that, Very. It does match with some of land's symptoms.

That does sound almost spot on actually (and quite worryingly) aside from the vision. I'm not getting blurred vision, just can't see anything to my left at all when i look straight ahead. I have had double vision since I was small. (I had an mri on my head 2 years ago after routine midwife checks highlighted a few issues - turned out to be nothing, so I know there is nothing underlying with regard to that).

Should I wait to see the optometrist on Wed or do I need to see someone before that?

Land I can't tell you whether or not to wait. The reason I suggested GCA is that a member of my family had it about five years ago. He had no vision issues but did have all the other symptoms, the migraines, facial pain, jaw pain, pressure feeling and also developed the vertigo as well. They diagnosed GCA even without the vision issues and he was placed on steroids which is the treatment for this illness.

The similarities are quite uncanny and I think it wouldbe worth flagging it to your GP, I believe it is quite rare and they may not even have considered it.

Good luck.

If you've had extra symptoms appear over the weekend, I wouldn't be waiting.

And make sure you mention the GCA to the GP as a possibility. Some GPs don't like that, but you are entitled to express what you think you have. I did this with my TN and was surprised that the GP immediately agreed with me.. :)

I know 2kids, that's the problem, I don't want him knowing I've been doing online research! Even If it's not really with dr google. I've been there so much recently chasing up my appoitments I don't want them to be laughing at me because I'm turning into a 'regular' iyswim

Very, that does all sound very familiar. Thank you so much for the info.

How are you today, OP? Did you get checked out?

No I couldn't get a gp appointment ?? will see what they say in optomologist tomorrow. The gp said they will probably schedule me in for a day of tests, so hopefully that's what's happening tomorrow.