Update on diagnosis - Migraine ,tmj Athrosentisis

I had my procedure on my jaw yesterday and it didn't go well. Been having multiple daily migraine since Oct 2014, neurologist diagnosed hemacria continua and I've had every prevention med and treatment available both nhs and private. Nothing worked/helped and i was told i was an anomaly. No one was listening! For 2yrs I've been tellng my GP and all the specialists that my left jaw feels tired if i talk for more than 10mins/ you can clearly see swelling and it hurt. He just said it was something wrong with my ear and prescribed antibiotics. I jumped through all the migraine hoops/ tried everything they had. I needed to tick them off the list ( as unsuccessful ). Still no one listened about my jaw.

I sourced a private consultant Oral & Maxillofacial Surgeon and although i had had 2 MRI scans done by neurologist he needed to do another because he couldn't get access to the nhs one.

He immediately saw a problem, cartilage damage on left jaw, no cushion between jaw bones which caused all of this :-

Severe daily migraine like pain, dizzyness confusion, fatigue, pain behind eyes, both temples, base of skull, temples and base of skull go very hard and you feel heat, pain in left ear but no infection, tingling on top lip and left fingers. Painful neck and shoulders, felt my head was always too heavy.

Just lying on my back i would feel pain building at the back of my head and get a massive migraine, never felt like i could release the weight of my head off my neck.

This is very easily misdiagnosed as a migraine condition and many people suffer for years being treated for migraine and nothing eases the pain.

I have now unfortunately been advised ( as i woke from the anesthetic ) that the procedure didn't work which is very unusual. Even although i was paralysed and had loads of muscle relaxant my jaw wouldn't open on the left, the specialist confirmed it was locked on the left and i need a bigger operation . I am devastated . Had i been diagnosed propery 11/2 yrs ago i would have the energy to fight, being put through all the neurologist hoops and soul destroyed with medical professionals and NOW getting listened too....i am exausted with it.

Neurologist starts their treatment with "medication over use" it's an absolute joke. The don't look outside their own little box and "first do no harm". In 6wks i will go under the knife again. 

Please, if you have all of these symptoms fight for the proper diagnosis.

 I have no signs of grinding or clenching my teeth/jaw - confirmed by specialists.


18 Replies

  • Oh Cally this is awful.  My symptoms are so similar to yours.  I understand your exhaustion and despair but take some comfort that you are now seeing something positive happening and although there are a few more battles ahead you're on your way to a possible resolution.  Take heart, build up your strength and think where you'll hopefully be in 6 months.  Take care X

  • Awe Jackie 😭 I'm so gutted 😭 my pain is horrendous, i now need to eat through a straw, can only open my mouth enough to get the tip of my pinky in but i hope this changes as the swelling goes down.

    Back to hardly any sleep, waking with terrible pressure between my eye's and temples along with major migraine pain.

    I still get migraine with aura, that's my usual ones but i can control them. I get at least 2 a month which is nothing. Having this on top is uncontrollable and disabling me daily.

    Migraines need more respect, these specialists need to listen to patients and look outside their little boxes x

  • Hang in there.  You're in the system now and hopefully some relief will follow. 

  • Babs1234 and Jackie

    I lost my daith piercing in the surgery room but i want to let you know that i haven't had one regular migraine with aura since i had it. I class the aura migraine as my usual migraine yeah I've had migraines but I'm 100% positive that's my jaw.

    I will get it redone on both sides when surgery is all done xx

  • Hi Cally, sympathy and commiserations. How absolutely awful that you have been put through all this and still have to have another operation as well. I agree, it's extremely difficult to be listened to and heard as a migraine/pain sufferer. The current practise of trying all the various medications to see if any of them work I don't think is valid, I think it's a way of fobbing people off with a condition which is not taken seriously.

    I met someone early this year who told me they had migraine badly for years, and it was found eventually to be a TMJ problem. Since their operation they have never had another migraine.

    Naturally I mentioned this to my GP. Response was silence. Still waiting for them to actually answer me...!

    I hope your next operation works and that you feel much better afterwards.

  • Awe Frodo 😭 don't let them fob you off with silence. I knew the specialists were wrong and i had to fight the whole time...i got to the end of their hoops and felt everything was hopeless...i took out private medical healthcare, found the specialist i needed and finally got the correct diagnosis. 

    I have taken legal advice and as i always knew i was told it would be difficult to prove misdiagnosis as they would say i presented with migraine and they treated me for that....however...i will be writting letter's to all the neurologists that seen me with a copy to the BMA...i dont want this happening to anyone else...

    Migraine / chronic headache needs to be investigated properly and given respect....so disappointed with the medical profession .

    I had an nhs referral to a jaw specialist done in January this year and I've heard nothing? There was a locum who seen me and he sent an urgent referral!!! Urgent....it's a joke...

    The locum seen the problem in 5mins and my regular surgery just kept giving me painkillers, i really think the GPs don't refer you because they don't think the appointment will come.

    Take care Frodo and thank you x

  • I've had clicking on my jaw for as many years I can't count. It does not happen all the time but could easily happen when I yawn and the mouth opens wider than for talking or chewing or even shouting ;~) It was my dentist who asked me about it and I was surprized he knew about it especially when I had never told anyone. I get migraines but I put it down to the stress of looking after both my parents for the last eight years of their lives, making sure they never went into a home (and they didn't !)  My mother even got her wish and passed on May Day 2014 in her own bedroom. (better than winning the lottery !! in my opinion.) I know that may sound strange but hospitals are not as comforting. Sorry for straying from the point but I never thought of linking my migraines to my jaw problem before. I have also been told by an x-ray last October that I have bulging between my top two vertebrae. I am waiting to have a  CT Scan on this but I have to see a specialist for him to sanction the CT Scan, so you guessed it .... I am on a waiting list to see the specialist first. In the mean time my pain is slowly getting worse. I use Lidocaine stick on medicated patches on the top of my spine mainly at night and HeatWraps by day.  Not every day but when required or when the pain gets very bad. I am also on painkillers. So this jaw issue could be another source for my migraines. (I suppose all these nerve endings with pain link back to the brain which may trigger migraines in various conditions.)Thanks for sharing the info on that. Sorry I don't have any info for you but if I hear of anything .... I will let you know. And I know what you mean about the medical professionals. They love to play .... "Pass The Parcel." My interaction with them as a carer at the time is .... They never seem to take on board the information you provide them and give you that stare implying you don't know what your talking about. And one more thing I know what it is like feeling your head is too heavy at times to support it. Take good care of yourself .... Kind Regards, Conor.

  • Thank you Conor...you have an aweful lot of pain to handle....respect for giving your parents their wish 😙. 

    My jaw used to pop/crack years ago but honestly never heard anything for about 10yrs...i was in a near miss and had severe whiplash but didn't realise that my head was thrown forward so violently...just missed the dash...the specialist said it would take that type of trauma to dislodge my cartridge...

    Once your in control of your spine pain and if you still have migraines get them to give you an MRI on your jaw joint, you never know.

    Take care Conor i hope you get to see a specialist soon and they manage / resolve your pain soon x

  • Cally I'm so sorry. I can't believe how we have to suffer to find an answer. Why in Gods name is there only a migrain clinic in London? The doctors prescribe medication and then were told told " medication overuse' ? It just doesn't make sense. Mine are beginning to ease slightly after 3 years. Chi machine, feverfew , magnesium, jentle excercise, vitamin D and of course watching what I eat and drink or should I say what I don't Daith piercing. Anyway if you ask me what has helped, my answer is I don't know, maybe a combination of all or one or the other, who knows. I hope yours improve because like me you have tried everything xxxxxx

  • 😦😡😔😔 it's so exausting. Xx

  • migraine should be classed as a disability,no one but us knows how it feels, I have lost four years of my life with the bad aura migraine,your living in fear of the next one,how can anyone plan their life without wondering when the next will disable you,there must be a way to get more research done. it makes me so angry.

  • I know 😔 keep fighting wee will beat this one day!! X


  • Thank you. I get Aura too ( 4-5 a month ) hormones are effecting them . I've had them since i was 14yrs old i am now 51. Your right, wee will have to fix this ourselves. Be well 😆

  • I have up to 3 pain free days a week. Which is an improvement to what it was

  • That's brilliant babs 😆 what you doing? Still feverfew and supliments xx

  • Yes Cally. But feel like I'm probably taking too many. Can't wait to see the headache specialist on the 16th Nov. I'm hoping he will prescribe the 02. Will let you know xxx

  • Brilliant 😆 good luck xx

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