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Midfacial Segment Pain

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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

    Edited

    Hi all

    Since my last post i am now on 75mg of nortiptyline a night but still suffering and not yet found a painkiller that completely takes the edge off sad sleep and a fake smile - at the moment my nose and cheek is actually too sare too touch it feels bruised sad bright lights really effect me badly, i struggle to drive in sun light, i've seen myself driving with sunglasses on even when the sun isn't out.

    A off duty doctor while under the influence of alcohol told me its caused my tension of either a present or a previous greivance or sad time of life - once i accept the saddness and grievance the tension will dissappear. This i have no idea if is true or false, if it was the alchol talking or if it was serious?!?

    Vickster hits the nail in the head when you say its an invisible illness that even your closest to you forget about, i've got to the point of passing it off as a sore head as it's too complicated trying to explain again and again when i do not know an explanation, or i'm asked "is that your sinuses again" when they know it isn't my sinuses but they don't understand what it is.

    Good luck at the ENT and keep us informed, so glad there are more of us, hopefully we can get a bigger research involved and took serious by doctors now numbers are increasing.

    Out of curiosity where is everyone from and what is your age group? I'm North East of Scotland and i'm 26. I understand if no-one wants to answer.

    Take care all

    Sara

    • Vickster79
      Vickster79 sarac23

      Posted

      Hi Sara

      I think that's a load of rubbish, yeah when I get upset or stressed I probably do feel it slightly more but in the last 2 years within 3 months of each other I lost 2 parents, and I'm sorry to say I was diagnosed with the condition 4 years before that.

      I've now had it for just over 5 years and I'm 36.

      I'm hoping on Wednesday Mr Robson will change my medication, to see if that makes any difference.

      How long have the rest of you had it for? I'm.starting to feel like it's something I'm going to have for the restoration my life sad

    • sarac23
      sarac23 Vickster79

      Posted

      I did think it was a load of rubbish too but then same as yourself when i'm upset or stressed it does effect me worse.

      I was diagnosed near 3 years ago but suffered for about a year beforehand being mistreated for sinuses for about 6months of that - i did stop smoking the same year the pain started - that could be my grievance haha!

      I feel the same, i now think this is me for the rest of my life, it's an ongoing battle with no cure as there is no information out there to help. I go through a good spell of either no pain or a bearable pain then suddenly it comes back on more severe again sad

    • Vickster79
      Vickster79

      Posted

      Rest of my life! Lol bloody predictive text 😉
    • Vickster79
      Vickster79

      Posted

      I don't know whether it's worth pushing for a nuerology appointment as at least they may be better equipped re the pain?

      I can honestly say I've never been pain free in all the time I have had it unfortunately sad

      I will see what happens on Wednesday. Fingers crossed! X

    • gemma13321
      gemma13321 sarac23

      Posted

      I'm from northern ireland and I'm 25 I've had it since I was 12 maybe longer 😕 i don't no about the stress thing but I can say I've had a hard life n suffer with depression and recently that's got worst has I lost my job after severe food poisoning so it mite be sumthing that makes it worst but hey happy face 😊 lol my face head eyes r killing me today. I don't no if I've already said this but the ent doctor suggested I go bk on the pill has it may help good luck girls keep us updated x
    • Vickster79
      Vickster79 gemma13321

      Posted

      So, I spent an hour and a half waiting for my ENT appointment this afternoon. The outcome is that basically the mid facial segment pain Is something that I am going to be stuck with sad

      My consultant did another nasalendoscopy which was clear, and he us referring me for another head ct scan just to make sure that there are no changes. It's 5 years since this all started and I had my last scan so he just wants to compare them both.

      Medication wise he has told me that my gp will have a better idea of newer drugs to try instead of the amitriptaline, so I now have an.appointment on Monday afternoon! I really hope that they can start me on gabapentin, as it looks like this will be the better option. If not next stop will be either an anaesthetic (pain) referral or neurology.

    • gemma13321
      gemma13321 Vickster79

      Posted

      Keep ur head up and I hope the new medication works! There most be sumthing causing this pain, I've had such a bad few days been living in my pj's n don't wanna go out but going to force myself tomorrow hoping the pain lessens 😕 I'm getting really fed up myself but there'll be better days.
    • Vickster79
      Vickster79 gemma13321

      Posted

      Bless you, I know those days all too well sad ..... Well a bit of an update, I've had another head ct scan results pending to see if there's any difference from the last one I had 5 years ago when all of this started.

      My gp a fortnight ago started me on gabapentin, I'm bow built up to 300 mg and have started reducing the amitriptaline, which hopefully will reduce completely by Sunday. The plan is then to see my gp again on Monday with regards to upping the gabapentin even more until I get a happy medium level. At the moment nothings really altered pain wise, but I feel slightly less cloudy if that makes sense so I'm hoping the gabapentin are going to work for me.

      I think I have been really lucky with the gp I saw, she had just finished her go training but was absolutely wonderful. She was compassionate, really interested in what I was telling her and I felt like she really understood my symptoms and how it affects my everyday life. She has also said that if the gabapentin doesn't do the trick that she may try me in different drugs that are used to treat trimegal facial pain, so we shall see!

      I hope you start to pick up soon, take care xx

    • gemma13321
      gemma13321 Vickster79

      Posted

      Aw that's great hope u have sum luck with them! I completely get Wat u mean by cloudy it's like super hard to think straight with the pain. That's why I hav to be careful not to drive if I'm having a bad day! I'm pritty much the same hav an odd ok day here n there but I see the doctor and the ent doctor at the end if this month so I'm really gonna hav to push for them to realize how bad this actually is its controlling my life. I just want to get back to normal n wake up n get out of bed like I use to. But it ain't stopping me that's for sure I'm starting a course on Monday so ill be studying for the next 4 years but at least it will take my mind of the pain hopfully. Gd luck to u and every1 else xx
    • gemma13321
      gemma13321

      Posted

      Hey girls so an update I haven't been to the ent yet however me and my brother have been researching mid facial segmented pain and I came across something very hopfully a research team who have treated the illness and have seen ressureing results. It seems to be a hospital in Liverpool so I am going to ring them. Also bringing all this information to my ent fingers crossed girls. Trying to paste the link in here but it's not letting me 😕
    • Vickster79
      Vickster79 gemma13321

      Posted

      That's great Mrs every little bit of information helps!

      I got the results from my head ct which were clear along with all my bloods so my ENT Consultant is happy for my gp to carry on treating me pain wise for our condition.

      I'm now up to 900 mg of gabapentin a day and am due to see my gp.again in a fortnight. It's still not cleared the pain but I feel a bit lighter with it so I've got a bit more hope and confidence in the gabapentin, so we shall.see.

      Hope your managing ok at the moment and please let me know how you get on with Liverpool! X

  • andig58
    andig58 andrea05081

    Posted

    Wow guys,

    It is good to realise you are not the only one out there!  You are so correct, no one else understands it and gp's just fob you off.

    I was diagnosed wiht chronic sinusitus for years and after a second ENT app, they finally diagnosed me wiht midsegment facial pain.

    I have to say I was started on amitryptaline 10mg and was finally pain free for a couple of months.  I have been ill for a couple of weeks, half of my face swoll up and had to start on 20mg, but also exhausted.

    I feel like a pill popper, but paracetamol doesn't ease the pain.

    Can't bring myself to go back to GP, as they make me feel like I'm a hypochondriac.

    But readiing some of the comments, I will definately be looking up some of the medications that have been recommended.  

    Thanks guys :-)

  • sarac23
    sarac23 andrea05081

    Posted

    Hello Andig58 - thats now 6 of us here!!

    Gemma when you contact Liverpool can you please keep us updated, i'd love to know more about this, i think i'll contact them as well.

    Just my typical luck - i've been hooked in a great book this week and today my head is so cloudy, eyes and nose are in pain my brain isn't functioning and i cannot concentrate sad looks like i'll have to wait before picking up the next chapter sad

    • gemma13321
      gemma13321 sarac23

      Posted

      Hey i haven't been able to get contact although I did try she gave me sum numbers to try but wasent sure! However I've been ill myself and had no motivation to ring but when I do I'll let u know. I've also tryed this head space app for meditation and this morning it eased my pain I was pleasantly surprised! It 2 as an idea of my brothers has I've been really down with my pain and I'm gonna keep trying it has this morning help not only my pain but frame of mind and it cool cause u can check ur progress and buddy up with sum1 and check there progesterone to so I'd diffently recommend it. The numbers get growing welcome to the club 😊 and hope u feel bit better soon
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