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Midfacial Segment Pain

Posted , 38 users are following.

andrea05081
andrea05081

I was diagnosed with midfacial segment pain early this year.  Although I have been experiencing it for longer than that - at first it was thought it was my sinuses, as I was also at the time getting a lot of cold-like symptoms, but when my sinuses were scanned, there was nothing wrong with them.

I have been prescribed amitriptyline, current dosage 50mg.  This seemed to work well for a while.  However, since mid June I have been getting a lot of pain again. 

My doctor at one time advised me to keep a record of when the pain comes to try and identify the trigger, but the thing is there appear to be a number of triggers!  I.e. when I get a cold and it affects my sinuses, when I get neck pain (which I'm also prone to), cold wind, stress/anger (NB: I am not a particularly angry or stressy person!), time of the month (where I used to get migraines, I now get the facial pain instead).

Also, I think the amiltryptiline is making me tired at this dosage (I do take at night), so I wouldn't like a further increased dosage.

Has anyone had any experience of this type of pain, and were you able to resolve it? Are there any other medications that have worked for you?

Also, my doctor mentioned referring me to a pain doctor, has anyone had any experience of these? 

I'm getting rather fed up!  I thought the amiltryptiline had resolved it sad

3 likes, 101 replies

101 Replies

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  • conscious
    conscious andrea05081

    Posted

    Hi guys I'm from Denmark

    You are not alone sad After really bad times. I've this pain/pressure on my face(forehead, between eyebrows and on my nose) in about 2 years. Haven't been working last 6 months and about to lose my job. I have been many different doctors to know what it is.. Finally an ENT doctor said it's mid facial pain syndrom and i should  see a neurologist.  When i read about it here and your problems, he is right. I've been to neurologist last week and he asked my MRI scanning and special blood test. I was on citalopram 20 no working. My doctor gave me setralin 75mg. which i'll begin tomorrow.

    But I know it came after bad and long lasting(1½year) trauma.. stress.. anxiety.

    I hope someone can find a cure soon

     

    • martin68191
      martin68191 conscious

      Posted

      I am in the process of being diagnosed by my ent/otolaryngologist/skull Base surgeon whatever one of this is. Although I do have refractor chronic rhinosinusitis I have also been put on a 6 month course of amitriptyline on a 10mg dose. I have been taking for 2 weeks with no change in pain or symptoms. I have been told to kep a daily diary of what my current mood is/stress lvls when I have severe pain. How can someone expect that when I can't even think through the pain. I have been put on the waiting list for endescopic surgery. I am pretty sure this is all don't to the operations iv had in the past for the removal of cholostiatoma from my ears. Which covers the nerves in the ear and upon the removal disturbed/damaged the nerves in the ear on my left side of my face where the pain is current. Might be a long shot to you all but ask ent specialist to have an enhanced mri of the frontal lobe to determine if cholostiatoma is present. I know it's a long shot but my symposium like all of yours drive me insane.

      Good luck to you all

    • carissa55
      carissa55 martin68191

      Posted

      Hi, just wanted to update everyone. So I did end up getting 2 sinus surgeries since I last posted. The 2nd one left so much scarring and blockage. I ended up going to see a different ENT and he fixed my sinuses. I had a couple tiny attacks of pain but was doing really well for 5 months and I thought yay it was just my sinuses, not midfacial segment pain. Well, the pain is back in full force. We then thought ok could they be a type of migraine. Tried triptians, no luck. Advil and tylenol lower it to a dull roar with peaks of pain. I've been using capsicum spray to break up the pain and it gives me some relief. But we are now closer to diagnoising this as midfacial segment pain.

      I will hopefully soon we trialing gabapentin, just waiting to hear back. Sigh. Endoscope shows no sinus disease or inflammation. Sinuses are showing blockages.

    • carissa55
      carissa55

      Posted

      Whoops sinuses are showing NO blockages.
  • carissa55
    carissa55 andrea05081

    Posted

    concious, did you have green mucus? I'm sure this is sinus related because I do. 
    • conscious
      conscious carissa55

      Posted

      No carissa I didn't have green mucus.. My diagnose was also sinusitis and was about to get sinus surgery.
    • carissa55
      carissa55 conscious

      Posted

      Thank you for replying.  I'm calling my ENT this morning. THis is no fun.
    • conscious
      conscious carissa55

      Posted

      You're welcome. I hope we can inform and help eachother.. Good luck and let us know if something helps I am so tired of this pain(pressure) ruined my life
    • carissa55
      carissa55 conscious

      Posted

      ((hugs))) I feel such sadness that these things can even  happen to people. I can't work right now either. Can hardly function.
  • katya01410
    katya01410 andrea05081

    Posted

    Hi there, i too suffer from this pain. For just over a year i thought i have sinusitis but after ct scan showed my sinuses were fine i heard this duagnosis mid facial pain syndrome. Ent specialist suggested amitriptyline so i was on it for a year and it did help to take the pain away initially but had some unwanted side effects like quick weight gain, tiredness, not being able to concentrate. I went up to 40mg before stopping amitriptyline for a couple of months to see if the pain would return. And yes it did so i went back to the same medication. Im now on 50mg a day but it doesnt take the pain away as it used to. Will be asking gp to refer me to neurologist. So fed up of this pain grrrrr
  • conscious
    conscious andrea05081

    Posted

    Hi guys. May I ask about your jobs? What do you do for living? And have you any problems with your eyes? Because my pain has begun after I started driving bus, and I have stargardt disease on my eyes..
    • katya01410
      katya01410 conscious

      Posted

      Hi, I work as an admin assistant but my pain hasnt started due to work. However, I have noticed it gets worse towards the end of working day even though I only work 5 hours a day sad
    • gemma13321
      gemma13321 conscious

      Posted

      Hi I haven't been able to work for nearly 4 years now it's totally took over my life it's scary I've already crashed my car once because of the pain n I try not to drive when the pain is bad but it's nearly really bad all the time now. I use to be assistant manager n retail. I've been on gabapentin I take 3 of 300mg tablets a day I'm rather fed up my eyes are sore and itchy all the time 😕 hope all u girls are keeping ok and struggling on lol I hope we get a cure soon i wanna go bk to work and study which is Wat i was doing before this! Xx
    • conscious
      conscious gemma13321

      Posted

      Hey girls.. I'm not a girl smile 37 years old man.. So this isn't just a female desies..
    • andrea05081
      andrea05081 conscious

      Posted

      I work in an office.  I can't say I have had any problems with my eyes, but it would make sense as a trigger.

      I'm currently taking 600mg of neurontine/gabapentin 3 times a day, and it seems to be keeping the pain away most of the time.

      Whilst I'm sorry to see other people going through this, as I know what it's like, I'm happy to not feel so alone with more people joining this thread.

      So sorry that it's had such a huge effect on you gemma - it truly is horrible.

    • gemma13321
      gemma13321 conscious

      Posted

      Lol sorry didn't realize everybody we've been talking to on here as been female so far but I'm very aware it not just woman thing I seen an article online about men and women being treated for it quite awhile bk! Try to find out wer they wer treated for the condition but when I rang they had no clue Wat i was on about typical lol keep well men and woman 😊
    • gemma13321
      gemma13321 andrea05081

      Posted

      Thanks Andrea I really need to get bk to the docs and tell them off they just don't seem to take me seriously! But gonna change up the meds hopfully will help!
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