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
kimcat andrea05081
Edited
Hi, everyone. I know this thread is very old but I wanted to share my own experience just in case anyone else out there is still seeking support.
Same as most of the stories on here, I have been experiencing symptoms for 4 years now but was initially treated for chronic sinusitis. GPs and ENT could not see any physical symptoms of sinusitis but an MRI scan showed that I did have some ethmoid sinusitis. This matched up with the areas where I feel the most pain (bridge of nose and behind my eyes) so I was hopeful sinus surgery would be successful. However I have now recovered from the surgery and the chronic pain still persists.
My ENT has diagnosed me with atypical facial pain. He told me that doctors do not know the cause of this condition and that I may have to learn to live with it, which was extremely disheartening to hear, when sometimes the pain is so significant that all I can do is lay in bed and wait for it to pass.
I am about to start a trial of Amitriptyline to see if this will ease any of my symptoms. I will keep the thread updated if I ever find anything that helps relieve the pain. Similarly, I would love to hear from anyone else who has been suffering with this. Wishing you all the best.
nicola44242 kimcat
Posted
hi i have recently been diagnosed with mid facial pain syndrome after yrs of thinking and been told it was chronic sinusitis.. ent could nvr find any blockages and 2 ct scans have come back clear.. i suffer with all the same symptoms as u girls on here.. constant facial pressure which effects my eyes, cheeks, teeth, ears and nose area.. I was very dubious with this diagnosis because I was sure my problems came from the fact my sinuses don't drain properly.. I have to blow my nose a thousand times a day otherwise the pressure will be worse.. recently in the last few months one side of my face ( eye & cheek ) has been swelling up also.. and from reading this thread I've only come across one other person to have that problem.. I've been prescribed amitriptyline 10mg which I really don't want to take but these last couple of nights have been so bad I resorted to taking them.. well what can I say they are horrible and make u wake up feeling like crap so think I'm gonna suggest to doctor about other medication.. its nice to see I'm not alone with this cos they really do make u feel like ur making it up.. I'm at the point now I feel it really is ruining my daily life and when a flare up is bad like now it sends my anxiety through the roof and makes me just want to shut myself off from the world.. I don't think anyone really understands the impact this has on ur life unless u experience it for urself.. 😓
I hope somebody reads this post as I know the thread started yrs ago as it would be nice to chat to somebody who actually understands what I'm dealing with on a daily basis..
Breezy2023 kimcat
Posted
hiya!
why is there 0 information online about this syndrome. i'm newly diagnosed and relatively quickly compared to others on this thread. i went to my ENT with concerns of sinusitis as I had a virus prior to the pain beginning and they ordered a CT scan and then diagnosed me with Midfacial Segment Syndrome. it's awful. i'm still on the hunt for the right medicine. my doctor seems to think it can go away once actively being treated. i hope it does. i'm only 23, and definitely won't be having children or anything if this continues. Had a terrible reaction to amitritpyline - how are you feeling now?
moymoy85 andrea05081
Edited
Hi all, 38 year old male MSPS sufferer from Australia here . Just wanted to share an update I found from January 2024: https://journals.sagepub.com/doi/10.1177/03331024231226176
Hopefully it looks as though this condition might be finally starting to be taken more seriously as the article above recommends a 'multidisciplinary, multicentre' study.
Personally so far I've found some relief from 150mg Pregabalin twice a day. I've also been given a script for Pregabalin 300mg three times a day which I'm yet to try as it requires tapering off the Pregabalin.
All the best everyone.