Confusion over Diagnosis of Temporal Arteritis

I could do with some advice. I have been suffering a lot of pain at top left side of forehead, running down to jaw and ear. There is a tender painful patch and I am unable to put my head on pillow that side, too uncomfortable. My vision has been affected in that I have had spells of blurring which have prevented me reading, driving etc. I finally went to see my GP last week and she sent me straight off for urgent blood tests. The tests have come back (CRP and ESR) and are indicating I do not have temporal arteritis, but still the headache and jaw/ear pain continue. The surgery nurse who gave the results to me suggests I see GP again as I am still suffering. Has anyone experience of this condition? I do not want to make nuisance of myself at surgery! My next appt. with rheumatology not till mid January. Ps - I have weekly MTX injection.

Lynda x

12 Replies

  • Hi Lynda, well good news I suppose it's not temporal artertitis , so now it's best to find out what is causing your pain .

    I have pain in that area caused by inflammation in the jaw joint but there are so many delicate bones and tissues around that area Ithink it's best to discuss it in depth with your GP or even the dentist. I got a night splint in my mouth which stops me biting down in my sleep and waking with pain in the side of my head, but don't know if that would be useful for you.

    I hope you feel better soon as there's nothing worse than mot getting your sleep Axx

  • Hi Allanah, Yes i do have mega problems with jaw area, have nightmare with dentist gaining access to my mouth, go every three months for check ups, hygienist etc to try and prevent any probs, tried a mouth guard but it was ghastly, was wretching all the time !! This forehead pain is something new though, but I will have to assume getting negative bloods means it's not temporal arteritis. I am carrying on with normal meds and hope it blows itself out soon. Went out for a Christmas lunch with our very elderly family members today, I was still trying to chew mine about 15 mins after the oldies had all eaten theirs and most of them wear dentures!! None of them had any idea you can get probs like mine with eating, they were all shocked, we had a good laugh though!! Take care, lynda x

  • Hi ya, yes I agree its good that it is not Temporal A because that is nasty, but I suffer the same pain in my right side and like Allanah says I was told it was the joint in the jaw becoming inflamed sometimes so much so that I can't bite down for a few days. There is nothing they can do apart from rest. as for the pain and eye sight; it might be worth seeing your optician too. I sleep on my front and put alot of pressure on the side of my face so can't use memory foam pillows but I am told they are easier and softer.

    Hope you get better soon.


  • Hi Caggy, sorry to hear about your jaw probs, i know what you mean, suffer same myself, have to eat soft foods and would absolutely just die for a hunk of crusty bread with butter and jam!! Only in my dreams now though. My forehead pain continues though and feeling so not normal, it's wait and see a bit now, will go back to see GP next week if no better. Take care, lynda x

  • Hi,

    I am sorry to hear of your pain,

    I had something similar and like you went to my doctor who did urgent blood tests which ruled out temporal arteritis. She suggested that it was Trigeminal neuralgia and she prescribed Gabapentin. Trigeminal neuralgia in itself is not dangerous, although it can be excruciatingly painful and scary. I googled it when it got home and the symptoms fit although I do not have as much pain as one can have with this complaint. Whilst I was in the surgery describing the pain to her I was manipulating my jaw and she said that it was very typical of people suffering from this condition to do that. The Gabapentin works, and the reassurance that it is not any if those other nasty things that are in your mind when you have an attack makes it all the more bearable!

    Google it then may I suggest that you go and see your doctor again and ask if that could be a possibility and hope she prescribes Gabapentin to ease the symptoms.

    Good luck!


  • Hi, thanks for your advice, it seems many on our site suffer jaw/facial pain and I am not alone. I feel something not right though and will revisit doctors next week if no better. Lynda x

  • Hi Lynda,

    I have no idea I'm afraid but just wanted to show a bit of solidarity and support. I've had something similar in the past and put is down to grinding my teeth and arthritis in the jaw. It is miserable when it affects the whole side of the head though, you can't 'distance' yourself from it.

    I hope you get it sorted out soon. Hugs


  • Hi Judy, I am still feeling poorly with this forehead pain, but comforted a bit in finding out from my friends on our site that I do suffer this in isolation. I hope it will burn itself out soon! In the meanwhile, I have some urgent things to do in the Christmas run up so must rustle up some energy to do them. I have always enjoyed baking and have two daughters who are so NOT domestic goddesses and who have put their mince pie orders in to me, so trying to get my head round that task! I have told hubby I want a kitchenaid mixer from Santa in order to keep providing him with the cakes he loves, my hands impossible now for mixing etc. hope Santa does bring me one, specially the one in shocking pink!! Take care, lynda xx

  • I had something similar and my dentist made a night splint to stop me biting hard and grinding my teeth. With that I became aware why I did this, discoved that I did that when I was sleeping on my side with my head really completely turned down the pillow. Now trying to keep on my back and it helps.

    Your problem might be something different but it could be an idea

  • Hi Pineapple, tried a splint, it was ghastly, gagging uncontrollably!! Jaws been painful for years now, but this forehead pain new thing really, hope it burns out soon, otherwise back to doctors to discuss what's next. My pain so bad cannot put that side on pillow. Can only sleep on the one side and my hip so bad that side - impossible. We do have a lot to put up with don,t we? Take care, lynda

  • Hi Lynda, Many years ago, I also was diagnosed with Temporal Arteritis, especially because I had other -itis's t the time. Had a biopsy of left artery and was discovered to be an inflammation inside the temporal artery. So, I was given steroid injections and kept on Prednisone for a couple months. It cleared and hasnot returned. Interestingly, I read that the very act of doing the biopsy often stops the inflammation spreading! Whatever, it has never returned, but I sure have had plenty of other inflammatory sites all over the body! I have Psoriatic Arthritis and RA, which both cause inflammations in the arteries of many organs, so must be controlled with biologics now.

    Worth discussing with your GP, or Rheumatologist. Hope for the best, Loret

  • Hi Loretta, Yes inflammation know no bounds!! Ghastly the onslaught on our bodies. How long did you have to wait before getting the biopsy and diagnosis? I have RA and extensive OA and about 15 yrs ago had an accident and sustained a small fracture in my neck and ever since then my neck and facial areas have given me pain. Dentistry is a complete nightmare, but I am determined I will keep my own teeth and could never wear dentures anyway, jaws far too tight. ,I also have sjogrens which is again mega oral problem, having to use special toothpaste, gels etc but always a horrible dry mouth and difficulty swallowing. This forehead pain is different though to all my usual aches, pains etc. and I am worried about it. The bloods have come back with passable CRP and ESR but I don't really feel that reassured. My mum died aged 52 with cerebral bleed and it does haunt me. I shall wait few days more, then revisit GP to ask what next. I am due to see rheumy mid January and will certainly discuss my problem then. When you had the temporal arteritis did it affect your vision? I am finding my vision very poor just now, it's like looking thru cling film, but there again I suffer lots of problems with eyes due to the sjogrens inflammation and not allowed to drive in dark now due to extremely poor night vision.

    This inflammation we all suffer always manages to find new spots and you sound as if you have more than your share of them, you have so much to cope with and being on steroids is ghastly as well!! Thank you for your help, Lynda x

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