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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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  • Owlcoholic
    Owlcoholic andrea05081

    Posted

    I've been on nortriptlyine 30mg once a day for a wee while now and it's been great I haven't had any pain for weeks!

    Although lately over the last week or so I've woken up with slight pain on the left side of my face and head but it disappears after a little while. Not sure if I should be upping the dose or not 😑 So sick of having this!

  • katya01410
    katya01410 andrea05081

    Posted

    So has anyone seen neurologist for this problem?
    • conscious
      conscious katya01410

      Posted

      I have seen 2 and my MRI scanning was fine.. but they didn't have any idea about it..
    • lee30774
      lee30774 katya01410

      Posted

      Hi Katya I have just paid to see a neurologist privately and had no answers off them either he just seemed to say something we don't understand and have to live with. ??

    • Owlcoholic
      Owlcoholic lee30774

      Posted

      I went to a private neurologist today as well. He put me on gabapentin 300mg 3 times a day and is going to send me a copy of the letter he's sending to my gp with some other recommendations of different dosages if that doesn't work. If all else fails it is just something that we have to put up with or manage as best as we can unfortunately 😞

    • lee30774
      lee30774 Owlcoholic

      Posted

      I've decided I'm not going to take tryptiline anymore as I've been feeling so tired constantly and stomach pains. I'm given gabapentin a go now as from what few of you have said not as bad side effects. I'm going to stick to a low dose as I think you'll only get used to the drugs and then won't end up working. If anyone ever would like to chat on Skype about it be good to hear your sides of how you cope and try share ideas on what makes each other's better

    • katya01410
      katya01410 lee30774

      Posted

      Hi there, i am still waiting for neurologist appt since april but tbh after reading these comments, i dont expect much. Like you, i also was on amitryptiline for a couple of years up to the point when the dose of 50mg wouldnt help and i used to be constantly tired. I have changed medication to gabapentin 300mgx3 times daily and I like it more. I still get pain especially when i dont sleep enough (and that happens often smile so need to work on sleeping regime. I wonder if this problem related to migraine because i get headaches too.

    • katya01410
      katya01410 Owlcoholic

      Posted

      Changed amitriptyline to gabapentine too. Same dose. Even though i still get pain its not as severe as without the drugs plus dont feel as tired as on amitriptyline. Just need to be extra organise and remember to drink it 3 times a day 😊

    • lee30774
      lee30774 katya01410

      Posted

      Hi Katya, nice to hear back from you smile yea it sucks been very fed up of it and coming on this site has made me realise it must of been the amitriptyline making me tired and giving me bad stomachs so decided to stop Saturday night on them. I have gabapentin not started them yet want to see if I can cope without anything. Getting a sleep routine I have found is a major key if I have a late night or disturbed sleep it flares up again and lasts a couple of weeks. I'm back at docs in the morning to for her to try to sort my stomach issues but I think I've just realised what has probably caused it. Neurologist didn't really give me anything more helpful really just confirmed what I had and that its just about managing it. Said to try acupuncture and eye test so and ask dentist for TMJ test so going to try those

    • gemma13321
      gemma13321 lee30774

      Posted

      Hi Lee yeah got all the same issues and I've been on gabapentin 300 mg 3 times a day for about a year or more but recently it's not been working as well it hasn't been as cronic as it has been n the past. But I've tried not to take it has I hate the tought of taking so many tablets every day. However when it gets real bad I hav no choice. Even now I'm struggling to write this message as the pain makes me unable to consenstrate. I've been diagnosed with mid facial segmented pain and a hyper sensitive nose. But it's more than that I get pain behind my eyes my ears my jaw my skull my teeth. And headaches. I also haven't worked in 4 years and I'm going to try and get bk to work soon cause I can't go on living this life anymore. Just gotta keep going and hope that one day it eases off. Going to a neurologist too on the waiting list. Keep well every1. 😊

  • Owlcoholic
    Owlcoholic andrea05081

    Posted

    Has anyone had any experience with having to up the dosage of medication after a wee while? I've been on 30mg of my drug for a while now but lately I've been getting pain again (not as bad as it was but its getting more frequent and for longer) and was thinking if I maybe should up my dose? Anyone had a similar experience?
  • debbie79954
    debbie79954 andrea05081

    Posted

    Hi, I've had this condition for 13 years now. For the first 8 years i was treated with every sinus medication going and anti biotics for sinusus etc eventually when id had enough and they refererred me to ent. I was initially put on amytriptyline then I didn't like them so was changed to Tegretol which only worked for a brief few months and I've been back on amytriptyline for the last 5 years. Inhame Doctors tomorrow as tonight im in agony agony. There are no specific triggers for me either it just happens and only a dark room and sleep clears it. X 
  • kathy2792
    kathy2792 andrea05081

    Posted

    I have had what all of you have since March 2009. I didn't know what it was went to MANY doctors still have it to tjhis day. Havner't worked since April 2009. Pain is so bad thta I can't. basicllay I have myofascil pain. Pain is coming from my neck & being reffred to other places like back of my yes, temples, top of my head... bascillay fascial pain. I aslo have TMJ disorder which causes me to have the pain rewffred to my jaw or just above my  ear. I aslo have Fibromyalgia. Between all 3 I am a mess. I seriously don't know what to do anymore. All Myofascial pain specialsts don't ecpt insurance & they are expensive. I have tried Elavil(amiltryptiline) but it interacts with one of the medications I'm taking so I had to stop it. only was on it for a week so I don't know if it helped at all. Would love to know if anyone has found relif. For me it's 24/7 pain & laying down to go to sllep isthe wrose. Once I put my head on my pillow I get temple pain!
    • gemma13321
      gemma13321 kathy2792

      Posted

      Hey Kathy I wish I cud tell u that I've found sum relief unfortunately I haven't I've been out of work for about 4 years myself. Only thing that helps me is when I work out which isn't often cause I have bad pains n my bones I think it just mainly takes my mind of it but dosent take it away! Still trying to get my doctors to take me seriously. I also get pain behind the ear and bk of my head and jaw even my teeth hurt. I'm starting to thing it's sumthing to do with my nerve system I really don't no. Cud be anything I feel the same as u only comfort is knowing that others no Wat ur talking about and believe me! Tbh I get a exhausted about the whole thing I don't even go to the doctors anymore but ino I need to. Look after urself and keep forward eventually sum1 will find a cure or wats causing it x
  • sarah53086
    sarah53086 andrea05081

    Posted

    Hi......I have had mid segment facial pain since 2011 and in 2012 was put on amitryptiline too (I piled on almost 3stone regardless.of low calorie diet and lots exercise) I came off it Aug 2013 as we wanted another baby I lost a stone of the excess weight during the start of my pregnancy (twins too) and being pregnant I could not take ibuprofen. 2weeks after birth (being on ibuprofen) I had awful sinuses and so I stopped taking it altogether and haven't touch wood been as bad with the msfp yet.....last year after several migraines and mild msfp I went on yet another weight loss journey which involved clean eating and I never suffered a migraine or sinus/msfp symptom! Since Xmas I lost the flow of clean eating and fad dieted on and off but not committedly and guess what....sinus/msfp symptoms are back! They got quite yucky a few weeks back and so I am getting back into clean eating and I still do not take ibuprofen. ....the link of ibuprofen and sinuses was a random one I came across on the internet but never refound. So I'm not selling a diet etc but it really has helped me so Google what's involved for clean eating....simple really no processed foods gluten free dairy free etc....it may be worth a go! I won't lie I hated getting into it but once I did it helped! And I haven't been anywhere near as bad as I was?! Hope it helps you all as a mum of 4girls I know how much this problem effects day to day life 😣😥😧
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