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Atypical facial pain

Posted , 11 users are following.

adam_1
adam_1

I've had a undiagnosed "atypical," bilateral facial pain condition for the past 8 years, the symptoms of which began subsequent to a head trauma. The initial manifestations were tightness in the mandibular area that resulted in intense and continuous clenching of the teeth. The salient conditions are tightness and constriction spread throughout the face but predominately localized bilaterally in and just above my upper teeth as well as the lower jaw. The masseter muscles are intensely constricted resulting in a feeling of being unable to fluidly open my mouth. The constriction radiates to the temporalis, behind the eyes, just above the eyes, the nasaslis area, as well as the top of my head and forehead. It is not an acute or electrical type pain and is is also not intermittent which has lead my doctors to conclude that it is not trigeminal neuralgia. I notice that there is an interplay between my spine and the tension I feel in the front of my face insofar as when I roll my neck there is an intensification in the level of tightness manifesting in the above mentioned areas. I have seen a few TMJ specialists and they've ruled that out. The various MRIs and CT scans I've had done have revealed no observable muscular or skeletal damage, leading most of the specialists I've seen to believe that it is some form of imperceptible neuropathic disorder. However, I also had a nerve conduction study performed on the facial nerve and it appeared to be in perfect working order. I have had a V2 nerve block done which produced no ameliorative effects. I have also had a local lidocaine injection performed in the left sphenopalatine ganglion region as well as botox injections, both to no avail. Throughout the years I have worked with cranio-sacral specialists, chiropractors, neurologists, migraine headache centers, acupuncturists, ENTs, dental specialists, etc., and no one has been able to provide a definitive answer as to what the cause of the pain might be. As far as medications are concerned, I have tried most of the industry standards including Neurontin, Amitriptyline, Lyrica, Tegretol, Cymbalta, Baclofen, Skelaxin, Flexeril, Celexa, Effexor, etc., and none of them have provided any substantial relief. I am at a loss with what to do and would appreciate any suggestions.

1 like, 9 replies

9 Replies

  • tony23922
    tony23922 adam_1

    Posted

    Hi Adam,

    Thanks for posting the information about 'atypical' bilateral facial pain condition.

    Sorry to hear you have had it so long with little or no relief.

    Your post really helped me to understand what you've been going through and my symptoms seem to match yours.

    I too had a head trauma and i'm fairly convinced that is what caused my symptoms which are: pain behind my eye/eyes, teeth aching, heavy pressure in my head, pain in my ears.

    i feel like i've been punched in the face.

    My face flushes and at random times goes numb as does my tongue and mouth.

    I wake up with it daily and it's presistent.

    I've had a MRI which is clear.

    Steroid medication and sinus elemination at present, pregablin already prescibed.

    Thanks again for the post, after a long time searching you have given me so much valid information.

    Hopefully others will find it and join in to support each other.

    Sorry i can't help you, but felt i had to reply.

    Take care and i wish our pains to be gone and until then that you find a way to keep managing.

    Tony.

    • ibrahim57343
      ibrahim57343 tony23922

      Posted

      Hi tony i knw  this is a very old post i had a head injury 7 months ago and just a week agter i started haveing all the symptoms that has been discribed from my face teeths tounge neck shoulders arm even feet and hands at times  headaches sever head pressure , has anyone found any relife i went to many doctors even private doctors and clinics in london only place left is eastman hospital in london , hope everyones doing well please share any help iam hopeless iam 32 and liveing it for 7 months has been hell and liveing it rest of my life scares me if i cant no relife 
  • mrsmop
    mrsmop adam_1

    Posted

    Hi Guys

    I have read your posts with interest.  

    I haven't had a head injury but often suffer from unilateral facial pain.  In my case, the cause is generally  a flare up of uveitis in my left eye and it feels as though someone has punched me.  Occasionally, when the uveitis is under control and I still have the pain, it can be caused by my bruxism.  Years ago, my dentist had a bite guard made for me, which I wear at night and that helps with the pain.  [Bit of a passion killer though!!]

    In my case, another possible cause, is Oral Cicatricial Pemphigoid, which was diagnosed a couple of years ago and isn't under control yet.

    I wish you both luck in finding something to help you.

  • zoe66826
    zoe66826 adam_1

    Posted

    Hi Adam, 

     I recently suffered a head trauma as well and within one month began experiencing symptoms which are very similar to yours. I too have been through a slew of doctors already and none has had any insight other than to try a medication and hope for the best. 

    I'm wondering if you ever found anything that offered any relief? Any suggestions would be helpful as I am pretty desperate and in pain. 

    Anything ever taken the pain away even temporarily? I've tried most non-prescription painkillers as well as Tylenol-3 (w/ codeine), none of which have helped much. I was prescribed predisone which helped a bit, but was taken off it. I was precribed Effexor which hasn't done much so far.

  • charlotte1824
    charlotte1824 adam_1

    Posted

    Did anyone ever get to the bottom of this?? I too have the exact same issues for 7 yrs, funnily enough a few months after breaking my nose. I have also been to various drs and physios had cervical facet injections, gone down the TMJ route, etc etc. The pain for me has also in the last 2-3 yrs spread into my throat. I also get dizziness, head pressure, numbness and feeling like my face has melted. My neck also hurts when its bad and my shoulders/arms. My mri was clear except for a pineal cyst and slight bulging of c5/c6.

    If anyone has got a dignosis or found a helpful treatment please do tell.

    I have tried the anticonvulsants but hate them.

    I am now waiting for an appointment with a 

  • lt1870
    lt1870 adam_1

    Posted

    Has anyone had any improvements?

    I have been suffering with burning in my gums, pain & tight/ pulling feeling in my face & head since hitting my head 3 yrs ago.

    I've been looking into cyber knife but I understand the success rate isn't great if you have constant pain.

    • ibrahim57343
      ibrahim57343 lt1870

      Posted

      Hi i knw this is a very old post i had a head injury 7 months ago and just a week after i started haveing all the symptoms that has been discribed from my face teeths tounge neck shoulders arm even feet and hands at times  headaches sever head pressure , has anyone found any relife i went to many doctors even private doctors and clinics in london only place left is eastman hospital in london , hope everyones doing well please share any help iam hopeless iam 32 and liveing it for 7 months has been hell and liveing it rest of my life scares me if i cant no relife 
  • ibrahim57343
    ibrahim57343 adam_1

    Posted

    Hi everyone this is a very old post i had a head injury 7 months ago and just a week agter i started haveing all the symptoms that has been discribed from my face teeths tounge neck shoulders arm even feet and hands at times  headaches sever head pressure , has anyone found any relife i went to many doctors even private doctors and clinics in london only place left is eastman hospital in london , hope everyones doing well please share any help iam hopeless iam 32 and liveing it for 7 months has been hell and liveing it rest of my life scares me if i cant no relife 
  • john02420
    john02420 adam_1

    Posted

    Hey Adam.  Sorry you can't get any answers. That's s long time to suffer. I noticed you said you have undiagnosed a typical facial pain.  Is that what you have been diagnosed with by a doctor and they just can't figure out what's wrong. It looks liked you have tried everything.  I myself am having trouble with mainly my teeth hurting all the time.  They aren't really sensitive to hot or cold but to the touch.  It kills me when I eat and when they touch.  I can't find any one who can tell me what is wrong.  I've been to dentist, ent, neurologist and they don't know. 

    I have not had any kind of accident.  My trouble all started after a cleaning at the dentist.  I also had a fluoride treatment done. I wanted to ask you if you are having trouble with your teeth?  I had trouble with my right eye, temple headaches, and right side nostril hurting two years ago.  One of the doctors I went to said it was some type of neuralgia.  He tried me on Oxycarbpine, Carbazepine  and a coupple more that I can't' remember the names but none did any good but they really kept me messed up.  I told the doctor to wean me off of them.  I did and I finally got better.

    Hope you can find out something.

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