Midfacial Segment Pain
Posted , 38 users are following.
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
3 likes, 101 replies
sarac23 andrea05081
Posted
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
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
norma92663 andrea05081
Posted
sarac23 andrea05081
Posted
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
andrea05081
Posted
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 . Whoops, I shouldn't frown! That'll set off the pain again
andrea05081
Posted
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
debra59438 andrea05081
Posted
I hope this helps.
gemma13321 andrea05081
Posted
Vickster79 gemma13321
Posted
★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.
gemma13321 Vickster79
Posted
andrea05081
Posted
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
gemma13321 andrea05081
Posted
andrea05081
Posted
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?
Vickster79 andrea05081
Posted
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!
andrea05081 Vickster79
Posted
gemma13321 andrea05081
Posted
andrea05081 gemma13321
Posted