Atypical Facial Pain

This may not seem a thyroid linked question, but bare with me..

I have been doing some research into what could be causing the facial pain I have been experiencing for the last three years and after being brushed off by maxillo facial people, the pain clinic and a diagnosis from a Neuro for facial migraine (which does not fit or feel right) and a drug regime to try out which involves taking anti epileptic drugs that I just dont want to take for lots of different reasons, it has led me to continue on with my own research and digging..

I have come across a condition called Ernest Syndrome. When I first saw the webpage, what drew me in for a closer look was the image of where it affects the face/head etc. Basically I think its Temporal Tendinitis. I knew it was linked to tendons because I could feel how painful and hard they were on the inside of my cheek when in pain.

I did some reading and there seems to be a link to thyroid in this regard.

My thyroid for the last couple of years of so has been pretty unstable after 20 years of behaving itself. Going from overt failure, to taking too much thyroxine, to too little and back again.

I have not documented or correlated if the pain has been alot worse when my thyroid was out of sync so have no personal evidence on that score, but I am curious if anyone else with thyroid problems suffers or experiences facial pain. I always said to any doc I saw regarding the pain that I felt it was inflammation based and somehow I felt it was timed with hormones (I guess hence the hormonal migraine dx from neuro)..

P.S. I am hypothyroid - Hashimoto's along with other autoimmune problems.

Thanks for reading :)

6 Replies

oldestnewest
  • Hi yes I have been having pain for about a year I had my wisdom tooth out in Sept after months of pain in my jaw and ear only to continue to have the pain the dentist is baffled they are now thinking I might have t m j but there not sure

  • A number of years ago, I started to get considerable pain coming from around my left TMJ and going up to my eye, etc. I likened it to being shot - not that I have any idea what that feels like, of course - it would usually start with a very sudden sharp pain and then continue for several minutes somewhat less painfully but more spread out.

    I got a photo of my face and drew lines on it of where the pain felt to be.

    I only tried pain-killers. Of which, Tramadol did help somewhat but you never knew when to take them! Didn't want them all the time but without doing that it was always after the event. :-)

    I also suffer from tinnitus and read somewhere that vitamin B12 helps some people with that. As B12 is usually so innocuous I tried. Didn't help one iota with the tinnitus - but it did appear to help with the AFP. Over months, I improved. Found that if I started to get even a slight twinge around the TMJ area, I'd grab another B12.

    Now, I occasionally get a twinge starting, even a slight "shot", but it is almost entirely forgettable. A bit of discomfort rather than real pain. And I still take B12 fairly regularly - though much less often.

    I am certainly NOT saying that it will help you. But it might.

    From where I am now, I also know that my thyroid hormone levels were dropping - and I am now on levothyroxine. That might well have had its part to play - both getting the problem and recovering. The B12 seemed to have done quite a bit of the work before I took my first levothyroxine tablet.

    I was negative for TPO antibodies.

    A few months ago, I had what I believe were two migraines with aura - but no pain. Very odd. Suspect they were something to do with thyroid - but unsure what as had not been getting any during the rest of my thyroid progress.

    As B12 insufficiency is so common in hypothyroid people, it does seem worth considering.

    Rod

  • I suffered from what was diagnosed as (Atypical)Trigeminal Neuralgia on and off for about 18 months. I was prescribed the epilepsy medication Carbamezapine as a nerve blocker but I had a severe toxic reaction to it. To assist the recovery from the toxicity, I took a complete B vitamin complex.

    Some time afterwards, the pain stopped and 6 months later I discovered I was hypothyroid. Years later I now know it is hashimoto's.

    A doctor (not my own, sadly) suggested the fluctuating hormone levels of hashimoto's can be known to turn other conditions off and on.

    I have never had the pain since I started on levothyroxin, except mildly when my levels are low and I am waiting to convince my doc to do a retest and increase my dosage.

    Until I read your question, I had not tied the two together, but considering the answers above , I do think there may be a link in the two conditions, whether vitamin or hormone based. Another link I have considered is depression, which can manifest as genuine physical pain and is a by product of hypothyroidism.

    I hope you get some relief.

    Mo

  • I have Hashimoto's and after some months of pain decided to give doctor a miss as my pain seemed to be up the side of my face and starting near my jaw. I went to my dentist (nice change!) and wondered if it was a tooth that needed attention. He took an xray and nothing was wrong. He did refer me to the hospital though and eventually I saw a specialist...guess what? by the time the appointment came up I was free of pain. I did attend though out of politeness to my helpful dentist. The specialist had no idea what it was and suggested "viral" well that covers a lot I suppose. The pain hasn't come back so have no idea what it was. Didn't enter my head it could be thyroid connected.

  • I have been suffering with facial pain my left temple is painful and sore to touch the radiates across my face so much so that im not sure where its coming from but then i get sharp pain in temple that only lasts a few seconds but is very tender to touch.my tsh is in normal range doctor reqested t3 test but lab refused as im exhausted all the time ive had urtacaria and angiodema for past year plus i had pyoderma gangerosum.i havent even mentioned facail pain as i am so fed up going to docs at moment.

  • I too am hypothyroid with Hashimoto's and papillary thyca. I have had exactly the same pain. Mine started after my thyroid surgery and radiates around the ear and into my left cheek bone. I have read that this may be as a result of having one's mouth open for the duration of a very long surgery but do not know if this has merit. However, I had an MRI yesterday which indicates a loop in the facial nerve. I also now have weakness in that side of my mouth. I do know there is a link between Lyme disease and Bell's Palsy so perhaps that is worth looking at.

You may also like...