Midfacial Segment Pain

Treatment and medication
1

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

2

Hi Andrea

I'm so sorry to hear you are suffering but so glad to read your story as mine is very similar and you are the first person i have ever came across that suffers the same as me! 

I was diagnosed about 2 years with midfacial segment pain - like yourself i was firstly misdiagnosed with sinus infections umpteen times before my doctor finally referred me to ENT clinic, it was there i was diagnosed with midfacial segment pain.

I was also on amitriptyline dosage 10mg but again the same as you, i was very drowsy and tired on them. I stayed on amitriptyline for about 6 months then came off them. My initial thought was it had resolved it but unfortunately the pain came back.

I've spent hours researching and researching the internet but probably like yourself i've found there is no new information out there and the information that is there is very basic with no discription.

I didn't want to go back onto the amitriptyline but at the same time i never wanted to go back to my doctor as i felt like i was a nuisance as he and another doctor had never heard of it - therefore i tried self treatment e.g face steamer, baths, warm wet cloths but nothing works, i always just want to sleep as its the only time i feel painfree when i'm having an attack. 

A new doctor started at my local health centre about 2 months ago so i decided to go and see him - he also never had heard of it but was willing to try and help. 

The new doctor changed my meds from amitriptyline to nortriptyline (the same family of medicine) i started a trial of 10mg for a month but upped the dosage to 20mg, same as amitriptyline it was working but i wasn't feeling the same tiredness as i did on amitriptyline theresfore we are giving it a 6month run.

I have now been on nortriptyline for 2months and i'm suffering at the moment (hence the research and finding yourself) yes i will admit the pain isn't as severe whilst on the drugs as it is off the drugs but as you'll understand i don't want to feel the pain at all. 

I'm still looking for something to completely reaolve the pain and pressure. Same as yourself i'm now getting really fed up - my doctor's exact words to me was "nerves are a bitch, there is no significent trigger it will come and go as it pleases" this is not much good when we want to live a normal everyday painfree life sad

My next step is to get back in touch with the ear, nose and throat clinic who diagnosed me to see if they know anymore information to help. 

I look forward to hearing from you, i hope you are pain free at the moment. 

Sara

3

Hi i recently finished my 2nd course of amitriptyline 10mg.I also attended ENT after many years of suffering facial pain every morning i woke up.The first time i took this pill i had no symtoms for many months but then it gradually came back.My Doctor give me another course that i have just finished but i feel this period without it may only be short term.I also have had 2 migranes recently that i have never had since i was a teenager( only once).I have never heard of this condition and while i wouldnt wish it on anyone I am reassured to see other folks have this and i'm not going crazy.Due to see ENT doctor in 6 weeks and would still like to know why my nose blocks on the side i lie on then changes when i turn over and i tend to snore when taking the pills.I wish i knew the cause.

4

Hi Norma - like youself i wouldn't like to wish this pain on anyone but happy to hear there are now 3 of us in the world. 

Since my last post 4 months ago i have stayed on nortriptyline 20mg and not yet went back to see the ENT yet as its been good or bearable at times so far.

i've learned myself that stress and unhappiness plays a major part in the trigger therefore slowly learning to change my lifestyle but as the doctor said there may never be a cure but there is medication to help us live a daily life with a grade 3 pain rather than a sever grade 10 pain. 

I would still like to know to the cause and a lot more information regarding the diagnose.

i hope you have a succesful trip to the ENT in 6 weeks and hear the information we wpuld all love to hear. Please stay im touchwith an update 

Take care

Sara 

5

Hi Both

Sorry I haven't replied, but nothing much else to report at the moment.  I went to my doctor again who suggested that I play around with my dosage of amitriptyline until I found the right balance between combatting the pain and not making me drowsy.  Well, I gave it a good go and for a while thought I had found the perfect dose (40), but in the past six weeks or so it has come back (it never completely goes away, there's always at least a mild feeling of tightness in my face).

The cold wind really seems to aggravate it - so much so that I had to take a couple of days off work last week as the pain was horrible - a really intense raw, burning pain , as bad as it's ever been.

So, it's back to my doctors again. I maybe need to stand up for myself more; I will definitely be insisting on something else other than amitriptyline! 

Norma, I also experience the feeling of my nose being blocked on one side, although to be honest this was something I have experienced for a long, long time and I'm not sure if it's related to my rhinitis, or something else, or this!

I've also found that the pills make me snore, and I'm pretty sure I never did before.  I often wake myself up snoring, but that's a minor issue compared to everything else!  I also experience other side effects: constipation and bloating and really bad acid indigestion.

I'll keep you posted on any developments, and would love to hear more from you both on yours as and when.

It's incredibly frustrating that there is so little information out there about this frown. Whoops, I shouldn't frown!  That'll set off the pain again wink

6

Hi

Just a quick update from me.  I went back to the doctors today. (I actually saw a nurse practitioner as my doctor was off sick, but that's by-the-by, she was really good.)

She has prescribed me Nuerontin (Gababpentin) - she said she doesn't like amitriptyline and that this medication is fairly 'clean', in that it doesn't tend to have horrible side effects.

I went to Boots to pick up my prescription and as I use them for repeat prescriptions, asked them to stop amitriptyline as this was replacing it, and the pharmacist said that Gabapentin is better than amitriptyline.

So, I'm feeling more positive at the moment!  I'll drop by in a couple of weeks to update you on how I'm feeling on the new meds smile

7

Hi Andrea. I do not know anything about Myofacial Pain but I do know about pain doctors. I really think your current doctor should prescribe you something stronger for pain like hydrocodone/acetaminaphen or tramadol if you can tolerate them, put you in a pain program there at your doctors clinic and then send you to a pain specialist. Pain doctors are very scared to prescribe medications on the first visit. Sometimes it takes 4 months to establish trust with them. Dress nice, be polite, bring your information and tell them your symptoms. When they happen, what sets them off, what level of pain you feel. Etc. Warning: Do not ask for medication but be careful and do your research if they do prescribe medication. The side effects may affect other areas of your body and organs. If they can have them give you a sample so you can try it first before you waste your money on something that doesn't work. There might be other drugs that can help or even natural cures. I would try a natural vitamin store and see if there is something there that helps. I just ordered Avnica Montana from the Vitamin Shop and I know that Bromalain works well for pain too. Those are natural. If you are sent to a pain doctor, bring your symptoms of pain and levels of pain with you, only let them put you on a few medications. Please do not let yourself become a lab rat like I did. I too was on Amitriptyline for a while but it did not stick and made me sick. I have severe pain all over and several conditions. The problem with becomeing a lab rat is that if they start putting you on NSAIDS and any types of Anti-depressant pain medications thinking that will work, it might hurt you more. I wish I could help more. If you get back to me I actually know of a website where you can go to a doctor and ask him questions and he will get back to you - for free! I think your primary care doctor should not take your condition lightly as it is happening in your face and you may need a test like a CT scan or some type of imaging to see if there is something wrong inside your brain. This could be serious and don't let them put you off. Without being rude abide by their policies but try to get a prescription for something stronger while they look for treatment. 

I hope this helps. 

8

I literally have every symptom all u girls have. I to was reffered to ent clinic and I'm starting my tablets soon. I'm hoping that they'll give me pain relief has I've been suffering with this since I was 12 and only now have I been reffered. I have to admit I really do struggle like the rest of you and just want to wake up feeling normal. Fingers crossed for us all but I'm not goingto stop until I find a cure. I also have 2 great brothers ones training to become a doctor n the others a medic so I will be using them to pick there brains and try n help this illness as I know how unpleasant it is 😕

9

Vickster79

★1 Vickster79

35 points

Mid facial segment pain

Posted about a month ago

Its nice to read that I'm not alone.in being diagnosed with mid facial segment pain.

I was treat for around 8 months on antibiotics for sinusitis even though bloods weren't showing any infection.

After a month of feeling really ill and being off work with severe headaches, nausea, dizziness etc my go finally referred me for a brain ct scan. I was sure something would show up as I felt so poorly. Thankfully it was clear so my gp referred me to an End surgeon.

On my first visit he did a nasal endoscopy which was clear, and he checked my ct for any signs of sinusitis, rhinitis etc and there was nothing. He told me to. come back in 2 weeks to see.if the symptoms had gone, which I.knew after 8 months of it, it would still be there.

On my second visit he told diagnosed me with mid facial.segment.pain.and set me off on 10mg of amitriptaline which over the next few weeks went up to 30mg at night.

I can say that it eased the symptoms, especially the nausea and stopped the dizziness/cloudiness but didn't.clear the pain.

I have what I can only describe as a pressure pain in my whole.skull, especially in my eye sockets, frontal lobe areas, temples and nose through to my teeth. I describe.it to.people as toothache.in my whole skull.

After around 6 months I stopped the medication but after a few days had to restart on it.

I'm sorry to.say that this was 6 years ago and it's really no different, just manageable. I have this pain every moment of every day but you.learn.to live with it.

I am thinking of asking my gp to refer me to a neurologist as it seems there is more chatter about the condition, so I'm hoping there may be some new treatments.

To all of you that are suffering this I honestly know.how you feel. An invisiable pain condition that even my friends and family forget I have as it's become my normal.life, but far from normal.

10

It really is reassuring to know that ur not the only one! No in my family gets it at all and it's very hard to describe for me has I feel like there's so many syptoms with it. I also get the pain all over my skull and ears and teeth and eyes. I actually cudnt drive today cause of the pressure in the middle of my face crashed into my dads car and I was only driving a few streets down 😕🙈 luckily he was just glad I was safe! Any1 else noticed it's seems to just be females getting it? May be sumthing to look into? Wish u's all the luck and ill keep you updated on how my tablets go. 😊

11

Good to hear from more fellow sufferers! In the sense that I'm not alone, of course, not that you're also suffering.  I know what you mean in terms of it being 'invisible' and people not understanding. I suppose we also don't like to complain too much and just say we're 'fine' when in fact we're in varying degrees of pain most of the time and it's hard to describe what an effect it can have on your everyday life!

I've recently upped my dosage of neurontin/gabapentin as it stopped controlling the pain.  I'm up to 300mg three times a day but it's early days yet, and there's the option to increase the does further.  It doesn't make me feel anywhere near as drowsy as the amitriptyline did anyway.

Gemma - what medication have you been prescribed with?  I'm just learning to drive and my last lesson was awful because of my throbbing face and head sad

12

Sorry, forgot to add - what do others use for painkillers and how do you take them?

I've found that aspirin is the only one that makes a difference (not a great difference but they help a bit), and I only tend to take them when the pain is at it's worst, as I worry about the effects taking a lot of painkillers might have on me.  What about everybody else?

13

I'm going to see another ENT Consultant on Wednesday, with view to try and get it back under control if that's possible! I'm still a bit nervous about it as I'm worried he won't take it seriously too, maybe just me putting barriers in the way I don't know.

I really want to go in with info from these pain forums and also the info I've found in America but u don't want to pass him off either, if he thinks I'm trying to be clever!

The only other 'standard' painkiller that I take when it's a really bad day, unfortunately like today, is either neurofen or anadin liquid gels, they seem to take the edge off. Again I really don't want to be popping pills all the time as I also worry about long term use and damage to my body.

I will let you know how Wednesday goes, fingers crossed!

14

The antyitriline aswell excuse my spelling lol when i did my lessons last year my driving instructors was really understanding. Although i didn't explain to him Wat i had as i didn't even know back then. But i wud just say my consentration was going we wud pull over for 5mins and for ever long I needed. Most times it was after half an hour I wud need a break and it really did help. Also sumtimes he wud talk to much and I'd tell him to shut up 😂 we had banter like that but it was gd because he realized when I said that I wasent taken in Wathe was saying lol took me wquite awhile to be ready for my test but worth it in the end. Good luck 😊

15

Good luck on Wednesday, hope it goes well! I understand your nerves about approaching your consultant with information you've gathered (I've done the same myself for a different issue), but it may persuade him/her that you're serious about finding a real resolution and that you're knowledgeable and can have a proper discussion about it.  I hope so anyway - they are there to help us after all.

16

I can't take any painkillers they give me sore stomach. But at the same time i worry about taking any medication n the effect they can have i do try ibroufen but i don't think it's for headaches 😕

17

Yes, it worries me too, especially when I think that this condition is most probably a long-term one.  Fingers crossed somebody finds a miracle cure sometime soon neutral

18

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

19

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

20

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