Midfacial Segment Pain

Hi everyone, I know this is an older discussion but I found it today after coming home from an appointment with a dental specialist who diagnosed me with Midfacial Segment Pain. I have previously also been diagnosed with TMD (temporomandibular joint disorder). 

Like everyone, I thought I had chronic sinusitis and got referred to an ENT - he didn't think it was my sinuses due to me not having any actual congestion - just pain. So he prescribed me Amitriptyline (10mg) and told me to take it for 6 weeks and report back after that (he also had me get an MRI of my head). I was very surprised to see that the medication worked after about 4 weeks on it. While the facial pain didn't completely disappear it was definitely more manageable. And when I stopped it after 6 weeks the pain returned almost immediately. The ENT never actually gave me the diagnosis but he obviously suspected it because he prescribed the Amitriptyline. He referred me to the dental specialist due to my TMD (which I've had for 15+ years). I don't know if there's any correlation between the two conditions but I'll be getting a splint to wear at night and I'll be interested to see if that helps with the face pain as well as the TMD.

Do any of you also have TMD? My face pain symptoms have been occurring for only 6 months but it's nice to finally have some answers as my GP was starting to look at me like he thought I was a little crazy!

By the way, I live in Australia 😊

Hi everyone, I came back to give an update on everything I've gone through and going through since last year. I did end up having sinus surgery last December as the ent, my GP, and I were convinced after all that it was sinus. Well my ent was skeptical that my pain was all sinus related. But I had surgery and he did find inflammation way back in my sphenoid sinuses. So we all chalked it up to that.

But then at the end of may the facial pain started up again. Thinking it was sinus I got antibiotics. The pain went away in a week

But suddenly a week ago it's back and it's the worse it's ever been. I had some green mucus on sat and Sunday so off I went and got an antibiotic again. Today went to my ent for a follow up a ND my sinuses are clear but I'm in tremendous pain. He believes I don't have enough green mucus to have an infection and my sinuses are wide open.

I have to wait to see a neurologist until Oct as he believes I'm having facial migraines. He gave me tramadol and sent me on my way. I then went to my doctor, my GP, as I was crying and upset and confused.

My doctor is sending me to the best ent doctor in a diff city but it's going to be a long wait as he is in such demand but he's going to try to get me in quicker as I a m unable to work or function like this. It was hard enough to go to doctors today.

So I am taking tramadol, for the pain and antibiotics on the off chance there's something sinus wise they've missed. If this doesn't work my GP And I are going to discuss gabapentin.

I took one tramadol today and the facial pain is gone but the pain on the sides of my head are intense like someone is squeezing my temples as hard as they can.

Hi Andrea I have just come across your discussion on this. I have had this pain for past 5 years been and done all the same as everyone has done ENT for sinus infection etc I have just paid to see a neurologist privately but had no answers off him. I've been on amitriptyline for 4 years on 10mg I've had good and bad times this past 6months been pretty constant pain and been having bad stomachs and constantly tired. The neurologist said to up my dose as I was on a very low does I put myself on 30mg the past week and I've been feeling rough bad stomachs very tired. I was prescribed gabapentin but not tried them yet but I'm going to give them a go from tonight as I feel the tryptiline is making me feel like crap.

I'm from Swansea South Wales this is the first time I've been on any discussion about it really hope we can try work out the cause and cure if any.

I find lack of sleep makes me worse I try get to bed early and that helps if get good sleep.

I went to the neurologist a month ago, he has now called my "illness" atypical facial pain which is some kind of migrane that no one knows anything about. He decided to take me off the amitrip as I was not enjoying the side effects so much and put me on gabapentin 300mg 3x a day.

In the last few days I have had the worst pain I have had since this problem first occurred. I even had to take the day off work today because of the pain which I've never had to do before. I was also very nauseous and had some pain/straining in my left eye (same side as the pain)

Today I went back to the gp and I am now on Topiramate 25mg twice daily as recommended by the neurologist.

He also recommended another medication to try after this if it doesn't work. I'm pretty much just trying anything at this stage to see what does/doesn't work because no one knows what to do.

If anyone has some suggestions as to what I can do for the pain in the meantime I would be really grateful. I had tried paracetamol, ibuprofen, codiene, peppermint oil on my temples/areas where I am sore, ive pack on my head, laying in a dark room and avoiding to much light. So far these things have only helped very little to not at all. I was prescribed some slow release codiene today which seems to have helped a bit more but not enough 😞

Also, just wondering how everyone else is doing? ❤

Hi Andrea and everyone in the forum

I have been reading this forum periodically but never thought about posting until recently. Just knowing I could google mid facial pain and there were a group of women here suffering with the same thing I have been suffereing with has been so reassuring!

I would also like to tell you how I reduced my pain considerably recently and I know some of you may be sceptics but perhaps you'll be at your wits end as I have also been and willing to try anything

I was also misdiagnosed with a sinus infection and after a year I was told it was MFP so I was put on amitriptyline 30mg every night for 6 months and it did help reduce it but I was still having attacks of intense pain expecially inbetween my eyebrows and my eyes and jaw. 

I stopped the pills a few months ago and then under reccomendations from friends who also suffered variations of chronic pain I decided to stop eating meat. Since then the pain is very managable and I haven't had a bad attack for about a month and a half. After doing research I found out that animal products and literally riddled with toxins, carsinogens, puss, bad bacteria literally so many bad things so I am equating my lessened pain (sans medication) with the fact that my body isn't ingesting bad crap from meat anymore. 

It feels good to no have to take pills, but the pain is still there but I no longer find myself having to lie in bed for an hour with all the curtains closed just to cope with the light sensitivity. Now the pain is present but distant and I just wanted to share that with you all.

Emma

 

Hi everyone, just thought I would give an update. I had a few months of reprieve but starting in August the  facial pain, nausea, dizzyness started up again. Doctor put me on a short course of prednisone to see if it was inflammation causing this. I had exposed myself to dust and mold while gardening, so I thought perhaps that was what triggered it all. The prednisone did help with the nausea and drained my sinuses but the pain remained. It lasted 2 weeks and then went away. 

Unfortunately, 2 days ago I started getting facial pain, then a massive headache arrived, nausea, dizziness and facial pain has set in. I spent most of yesterday lying in bed with my eyes closed. Today I still feel weak, dizzy and have facial pain. I booked an appointment with a neuromuscular dentist to check my jaw for TMJ disorder. My appointment is today. I had my allergies tested, just the usual dust mites, dogs, cats, feathers, mold. No food allergies. I was getting a puffy face around my sinuses so my ENT wanted to rule that out. 

I'm being referred to a neurologist which I should have looked into years ago but I always chalked this up to sinuses as CT scans showed sinus disease. But they are clear now and everytime I think I have an infection it comes back clear. They do see a small bit of inflammation in my sinuses on the endoscope but it is from allergies and nothing major that would cause this amount of pain to go on for so long. 

I've noticed it has a distinct pattern of starting with a massive headache, nausea, dizziness and leads to 2 weeks of facial pain on the bridge of my nose. I believe the trigger this time is all the wildfire smoke we've been getting. 

So right now it is just a process of elimination. I'm fed up and tired of it all. I only had about a weeks reprieve this time and not looking forward to this going on for 2 weeks. Ugh. I mostly hate the nausea. 

It'll be interesting to see what the dentist has to say today because whenever this happens it hurts more to talk or chew. 

I will update when I am back. How is everyone doing? 

Midfacial Segment Pain Syndrome has nothing to do with the trigeminal nerve. The syndrome is usually treated by otorhinolaryngologists and now more freuently in consult with Neurologists. It is one of the more common DX from those folk and likley the most common reasons for visits. When/if its eliminated as the DX those folks are moved into the more "exotic" facial pain DXs like GPN TN etc.

hi. everyone. my journey started 20 months ago with a bad virus followed by a bad sinus infection.evolved into chronic pain and pressure in my nose and cheeks. had sinus surgery/septoplasty but ENT warned it may not help the pain. It relieved pain for a couple months then pain is back. Its pain and pressure and congestion and feels like sinus infection but no green mucous and CT scan is clear.I tried amitryptaline for two nights but got horrible tinnitus and felt totally spaved out and nauseous. I'm on gabapentin now (300mg 3x a day). I think I need to increase, but its causing my hair to fall out. I started botox for migraine this week. Dr gave me nortryipltaline to try in place of amatryptaline but I'm afraid to try. Right now I have zero quality of life. Its hard to keep up with work (teleworking since February due to surgery and pandemic. I can't exercise due to the constant pain and pressure. I'm gaining weight. I'm getting really depressed and hopeless. I can't live with this pain for the rest of my life. This seems so rare that the doctors don't know what's going on. The ENTs have been rude and offensive suggesting this was psychological. On my own I went to the neurologist and found midfacial segment pain online on my own. Neurologist is treating me for chronic headache and migraine but doesn't have experience with chronic facial pain.I feel like I'm on my own with this.

Thank you for posting this. Amitryptyline did well for me for a while, but as of last menstrual cycle start the facial pain keeps returning. I have similar triggers to you but menstrual is a huge one that nothing helps. Usually it is a terrible one day event but not this time. I do get temporary relief from one 200 mg Advil and one 500 mg Tylenol taken together, usually an every 4 hour regimen for 24 hours shuts it down but no joy this time. I'm here seeing if other tips help.

Hi all, my elderly mum suffers terribly with mid facial segment pain. Over the years she's tried amatryptiline, gabapentin, carbamazepine but nothing has worked for any length of time. She's currently trying acupuncture which after 3 sessions doesn't look to be working either. However on one of the sessions the needles were hooked up to a TENS machine and for the rest of the day she seemed to be much better. Just wondering if anyone has looked into using a TENS machine with the pads stuck directly to the face for short term relief? Thank you and hope you all are doing better as it sounds like a miserable condition.

hi,

not sure if anyone is still on this forum. just thought I would reach out.

i have just been diagnosed with Mid Facial Segment Pain after probably 15 years of suffering with sinusitis. I feel quite cross that it has been going on for so long after numerous scans and xrays and for doctors to say there is nothing wrong.

i had a follow up appt from the original appt in 2019, I wasn't going to go but im so glad I did. I was prescribed Amitriptyline 25.g for the first week and increase to 50mg for the next 4 weeks. the pain has gone, the inside of my nose doesn't hurt anymore, I feel so much better.

does this syndrome go away or do i have to live with it?

I hope I to hear from someone.

Sarah