Has anyone here been diagnosed with this? I honestly think that this is the type of TN that I have. I have constant burning pressure on my forehead, nose and sinus region. Below is a description of this syndrome from a published abstract. I would be interested to talk with someone who is suffering from similar symptoms to see if anything has worked for them.
“During the past decade, studies on facial pain have shown that there is a distinct group of patients who have a form of facial neuralgia that has all the characteristics of tension-type headache, except that it affects the midface; it is called midfacial segment pain. The pain is described as a feeling of pressure, although some patients might feel that their nose is blocked when they have no nasal airway obstruction. Midfacial segment pain is symmetric, and it might involve areas of the nasion (the root of the nose), under the bridge of the nose, on either side of the nose, the peri- or retro-orbital regions, or across the cheeks. There might be hyperesthesia of the skin and soft tissues over the affected area. Nasal endoscopy and CT scans are typically normal. Most patients with this condition respond to low-dose amitriptyline, but noticeable improvement might require up to 6 weeks.”
Greetings I haven’t heard of your condition and hate to hear of your pain. I hope the medicine you are trying gives relief. Keep all of us posted.of your progress. You will be thought of and prayed for relief and strength to live with this
I’ve never seen this diagnosis before, in the 20 years I’ve been talking with chronic face pain patients as an educated layman. This sounds rather like a re-labeling of bilateral trigeminal neuropathy of the median branch of the trigeminal nerve.
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.
The main difference is determiniing whether or not the pain is rhinogenic or nonrhinogenic facial pain, and usually place this symptom in the context of rhinosinusitis. More recent research indicates this is not necessarily the best. as only 16–20% of patients with sinusitis (purulent or with polyposis) confirmed by nasal endoscopy actually had declared symptoms of facial pain. More impportantly, studies (from multiple sources) show that up to 40% of patients had persistent postoperative facial pain despite resolution of sinusitis so it does have that in common with TN What appears to be the reason frequently is not.
My constant pain and pressure started 6 years ago (out of the blue) in the supraorbital region on my left side. It has since moved bilateral and is usually equal in pain on both sides. The burning pain and pressure starts at the supraorbital notch on either side, bridges the nose, goes down the nose and on the cheekbones. All of these are sinus regions. Before I was diagnosed with anything, I had a full sinus surgery (evidently I had pretty messed up sinuses) to try and resolve the pain. It did nothing to stop the pain. I did have a compression on my left side which was relieved by an MVD in 2013. Some pain reduction, but not much. When I came across this article it sounded like me. I have only found one other person who has symptoms like mine. I have not responded to any medications. I survive on a few pain killers per day, but I am often very miserable. I even have a stim implanted in my forehead and cheekbones. This has not helped the pain either. I am out of luck. Nothing left for me to try.
This may be off the wall but how are your thyroid numbers and has the pituitary been scanned? It sounds like the problem is generating higher up. Pressure on the Pituitary can often cause those symptoms although there may be some visual field cuts. You may for grins and giggles may want to check with a neuroopthamologist. He has some better tools at hand for identifying the nerves that may be involved. Mid facial pain Sydrome is just that a syndrome in that it is a collection of symptoms but not enough to call it something specific.
Whilst I’m not familiar with the ‘diagnosis’. I know someone who had the symptoms you describe, albeit in addition to occipital pain/ neuralgia, whose symptoms sinus/ nasal symptoms cleared with physical therapy, might be worth a thought.
Hi, I know this post is a bit old but hoping you are still around. I believe I have this and my Ent is also thinking this might be what is going on. It started in my early 20’s and now I’m 41. It was thought to be sinus issues because I have really small sinuses and allergies. But I’ve since had 3 sinus surgeries and although I did get almost 5 months of relief it is back. Its in the bridge of my nose, sometimes between my eyes and my cheeks, hence why sinusitis has been the focus. It is a deep ache, with burning and pressure. It comes and goes in intensity but is always in the background once an attack starts. There is no sinus infection or significant swelling. In fact, my sinuses are open, clear and look totally normal.
But I think mine might get triggered from allergies. Usually my cheeks swell up and my eyes and become hot. Then the pain comes. The swelling does go down after a couple days but the nerve keeps firing. Its so bizarre.
Anyhow, right now my doctor and I are in the process of trying to pinpoint what it is. Migraine medications don’t work, it was originally thought to be a type of facial migraine.
I do take advil and tylenol which take the intensity off but it still can peak and at that point I use a capsicum spray which brings me relief for about 20 minutes and lowers the intensity. But we are probably going to try gabapentin or something similar, soon.
It is so frustrating and debilitating. I only work p/t due to this. I just keep telling myself that each day brings me closer to the correct diagnoisis and proper treatment.
Yes, I am still here! I am happy to meet someone that sounds so similar to me! I would love to stay in touch so that we can help each other. Like I said in my post, our symptoms are not very common. I have found that migraine medications do not help me at all. That being said, when I am in an emergency state, I can get the pain to break with IV DHE treatment. When I say break, I mean move from a 9 back down to my 5-7 pain level range (with the use of pain meds). The only thing that gives me some relief is Excedrin and Oxycodone. On my flare days, nothing really helps. Friend me on Facebook if you would like to. That way we can connect more easily. Lora Smith Romney