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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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  • sarac23
    sarac23 andrea05081

    Posted

    Hello does anyone suffer from regular dizziness? I suffer from vertigo but this past 6 months its becoming more and more frequent during my every day life. The dizzy spells are bad enough but then it follows by a lingering light headed and nausea for hours afterwarda sad i've had my eyes checked, had the full blood tests but all is clear and good but the dizziness is still reccuring. This has been a realt bad week and i cannot get an appointment with a doc till Monday sad i'm thinking there could be a connection in the ENT area with the ears, midfacial, heads.

    Theres always something and novody has answers sad

    • andig58
      andig58 sarac23

      Posted

      I get really bad vertigo especially if i bend down. Feels like i am going to collapse and room spins for ages 😩
    • gemma13321
      gemma13321 sarac23

      Posted

      Yes I got virtigo to for a long time but I haven't had it n a gd while but I do get dizzy from time to time like I'm gonna fall over. Xo
    • Vickster79
      Vickster79 gemma13321

      Posted

      I do too, every few months or so usually for a week or so.

      It reminds me of how it all started for me, waking up and having a headache, fave pain, vertigo, dizziness and feeling sick. This was how I felt for the first 6 months and then when I was started on Amitriptaline it seemed to take the sickness/dizziness away and dull the pain but not cleared it.

  • Owlcoholic
    Owlcoholic andrea05081

    Posted

    I was diagnosed with this last week and have started on nortriptyline 10mg once a day. No pain killers I take help at all it's really starting to get to me after over 2 years of dealing with this. The ENT misdiagnosed and I had unnecessary surgery earlier this year (which was horrible!) which helped for about 6 months but it's come back just as bad.

    I'm really hoping the drugs I've been given will help cause it doesn't sound like there's a lot of other options 😞

  • sarac23
    sarac23 andrea05081

    Posted

    Hi Owlcoholic - so sorry you have also been diagnosed and having to go theough surgery sad it must be a relief to know now what it is that is causing you the pain but still annoyance because it is not a well known diagnose therefore there is not alot of study or information to be found sad

    I've seen my doctor again a few times and we put my dizziness down to an inner ear infection, i've been on tablets to clear it so hopefully they work - there was the possibility that it was all connected but will know better once i complete the course of tablets and if the dizziness returns then.

    I wanted to share with you all that i started "Myofascial Release" yesterday, its a therapeutic massage to release tension and tightness in the myofascial tissues which surround and support the muscles in the body. I advise you to research it and see what you think yourself, i only know one therapist in my area that is trained in myofascial release - it is now a normal surface relaxing massage, it worka the deeper tissues and the inner body.

    The therapist truly believes it will work releasing some of the chronic pain and tension, i'm booked back in for another session in 4 weeks time.

    • Owlcoholic
      Owlcoholic sarac23

      Posted

      I'll look into that! I was looking at getting some acupuncture done to try and help but it is quite costly so I'm not sure I'll be able to have it done very often
  • carissa55
    carissa55 andrea05081

    Posted

    Hi, right now I`m been investigated to see if I have this. I`m starting 100mg gabapentin tonight. One thing that confuses me if that Avelox (antibiotic) worked for me to get rid of the pain back in Oct but then on Monday I had a severe headache that lasted until Tuesday night. Wed I woke up with the stupid facial pain. But the doctors don`t believe its a sinus infection. I`ve had  this facial pain on and off for years. But then why did Avelox work at first....

    Also, does anyone have days without facial pain.. I do and wondered are these just attacks...I`m very confused.

    • Vickster79
      Vickster79 carissa55

      Posted

      Hi there

      Ive had the condition for over 5 years now and I can honestly say I've never had a day free from pain and symptoms no matter what treatment I have been on.

      U was on Amitriptaline for 5 years which helped but didn't clear it, then tried carbamazapine which along with gabapentin but had to stop the carbamazapine as it helped with the headache but made the facial pain more acute.

      I saw another ENT Consultant who said it's a condition I'll have for life.

      I'm now on 1200mg of gabapentin daily and I'm seeing my doctor to review it next Thursday. It helps but hasn't taken the pain away, to he honest I've resigned myself that nothing will ever take it away.

      I have the headache and facial pain everyday, morning to night and as I said the medication helps a bit but yas never cleared it.

      I hope yours isn't as severe as mine, to be honest I'm not even sure if there's different severities of it.

      Hope you get a bit of ease soon x

  • carissa55
    carissa55 andrea05081

    Posted

    Hi I am beginning to wonder if my pain isn't the same as others. For me its a feeling of pressure not sharp pain. Like if I touch my face it doesn't hurt. It hurts deep inside,like a band is on the bridge of my nose. Anyone else like this?

    Also, I swear I can feel  mucus moving around inside. Like if I lay on one side the pressure eases on the opposite side.  

    • sarac23
      sarac23 carissa55

      Posted

      Hi Carissa

      I'm exactly the same as yourself, the pain isn't sharp pain its more like a thumping heart beat ache at times but when i'm not in pain i've constant pressure across my eyebrows and the bridge of my nose which feels likes its closing my breathing tubes. Most days i suffer from pressure more than pain and i've been told we'll probably never find a 100% cure

      For it but if i find a tablet than takes the pain/pressure down to a 5-6/10 then its better living than 10/10 pain/pressure

    • carissa55
      carissa55 sarac23

      Posted

      Thanks for your  reply sarac23. I have had a previous 3 weeks of no  facial pain at all after Avelox. Now I'm feeling frantic to get antibiotics since it worked in the past. sad  
    • gemma13321
      gemma13321 carissa55

      Posted

      Hey carissa I've had it since I was 12 I'm now 25 but it now very constant and extremely painful I can't remember a time wer I not n pain my gabetine as helped but it testing with the dosage. I get all ur systems aswell and more there diffo sumthing not right I feel mucus moving about to very strange. I hope u get sum help soon going to see my ent Tuesday 2nd appointment hopefully they don't just fob me of. Keep well girls ur not alone xo
  • carissa55
    carissa55 andrea05081

    Posted

    I had a hot shower and hacked up green mucus so I have gone to the walk in clinic and got antibiotics. I think it is my sinuses. I'm also feeling alot of pressure in my right ear. I'm going to call my ENT tomorrow and see about rescheduling my sinus surgery. It also feels like the pain is along my teeth on the top ones, more of a pressure feeling. On the same side as the ear pressure. I'm kicking myself for agreeing to cancel my sinus surgery. ARGH
    • conscious
      conscious carissa55

      Posted

      Hi carissa55 

      I have the same problems like you, and i was about to get sinus surgery but obviously it wasn't my sinuses.

       

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