I was misdiagnosed as having chronic sinusitis initially. This was partly because my symptoms (at first) were very similar to sinusitis and I have a history of chronic sinusitis in the past 10 years. I was told that I had a lot of scar tissue in my sinus areas from untreated sinus infections but there was no need for surgery. The ENT I saw made this determination. My symptoms have now progressed over the past 6 months to TN symptoms, although I do still have allergies, congestion, etc. My PCP thinks my TN was probably brought on from an infection in the nerve, due to the sinus issues and my sad little immune system.
My questions are - did anyone else experience anything similar, ie. have a history of sinus issues or scar tissue in their distant past? TN brought on by an untreated sinus infection?
And is it common for TN pain to worsen or progress in its initial onset? For the first month or two my pain was tolerable and only behind my eye. Now it's eye, cheekbone, temple, nose, eyebrow and certainly surpassed the range of tolerability.
Hi Julya1330, I read your post and can respond to your part about is it common for Trigeminal Neuralgia pain to worsen from its initial onset?’ Sad to say, but yes it is more common than not for Trigeminal Neuralgia to progressively get worse over time; rarely does it get better on its own. My Trigeminal Neuralgia started on March 5, 2004 at 7:35pm (many people may be able to pinpoint exactly when their symptoms first began). My pain started out relatively benign for the first three weeks. I than started on Percocet which helped for only a short time. Fortunately for me, early on in my disease I was referred to a pain management doctor, which is now part of my team of Dr’s that collaborate on my Trigeminal Neuralgia. Good luck!
Here's my two cents for what its worth.. I got TN and ATN in April of 2013, had a glycerine rhizotomy in July of same year, then had MVD in October, I am 90% pain free. In talking to both surgeons they felt that I had an underlying auto-immune disorder, which I now have diagnosed and am trying to find a treatment that helps.
Long story short, the treatment I had (IVIG) landed me in the hospital, but the point is, in talking to the neurologist/rheumatologist I am dealing with on the auto-immune, the surgeons I had and the rheumatologist that saw me in the ER, they all believe that my long history of sinus infections may have caused the auto-immune disorder...because there were a few times where the sinus infections were considered viral.
Since i had the treatment and the anti-bodies added, my sinus's have gone nuts and triggered some TN pain as well, even though I had an MVD that worked...it seems that the sinus pain, then travels to my eye and side of my nose, as it is doing right now, and it hurts like hell!!
I would not doubt that there is a connection for you, keep plugging away with the doctors and see what they say. I am finding now, that a combo of a hot rag on my forehead/bridge of nose, a good narcotic and benadryl ease the pain within a half hour....so you may need some meds as well to help!
I was misdiagnosed with sinus/ ear infection in early 2010 (initial pain onset middle of the night Nov. 5/09). Months later ENT said no sign of infection and CT was clear, so after tons of antibiotics, its questionable whether there was an infection. Pain progressed over time and spread to other areas.
I’ve been through all kinds of tests and scans. There is contact of SCA on trigeminal nerve so I’m going for MVD in September. However, neurosurgeon thinks some of my symptoms are due to fibromyalgia (which I was diagnosed with in 1995). Time will tell. The goal is to cut down pain and meds.
Can’t help you out with the scar tissue issue but wish you the best. Find a doctor you trust. It makes a difference. Keep a pain journal and find images that match your pain. Also learn the pain language.
I was misdiagnosed for over a decade. It was my sinuses…no must be my teeth…nope guess it was the sinuses…maybe allergies…and so on. Are you sure a lot of your sinus problems were actually sinus problems? Mine were not. Most doctors are not very well equipped to diagnose TN. It is a somewhat rare disorder and as such often gets misdiagnosed as a more common malady like sinus problems. IMO dentists are the ones who really need educated on how to spot this disease, went through 5 of those and none of them ever even mentioned TN. And yes, unfortunately it does seem to get worse as time passes. Hopefully you find a way to manage yours quickly.
Good point on the dentists, I actually went to a dentist first, and was told that she thought it was neurological what was going on, after that, it took time and a few trips to the ER and basically being called a drug addict before I found a doctor that actually knew what I had.
I agree that dentists should be more trained in this, I was one of the very few out there that actually has a dentist with a clue.
Wendy
Brian M Howard said:
I was misdiagnosed for over a decade. It was my sinuses....no must be my teeth....nope guess it was the sinuses....maybe allergies....and so on. Are you sure a lot of your sinus problems were actually sinus problems? Mine were not. Most doctors are not very well equipped to diagnose TN. It is a somewhat rare disorder and as such often gets misdiagnosed as a more common malady like sinus problems. IMO dentists are the ones who really need educated on how to spot this disease, went through 5 of those and none of them ever even mentioned TN. And yes, unfortunately it does seem to get worse as time passes. Hopefully you find a way to manage yours quickly.
My TN 2 feels like sinus pain at times. I know It isn't sinus pain, because my dentist took an X Ray and my sinus was clear. My neurologist thinks that what I thought were sinus headaches the past 30 years were migraines. Now I have toothache pain, beesting pain, eye pain most of the time. I have had gamma knife and take meds. I hope you find relief.
I've never had any dental pain! I wonder if that means I don't have TN? All of my pain is around my eye, temple and cheekbone and on the right side of my nose.
Some years before I was diagnosed with tn, I was diagnosed with maxial-facial migraines because of pain similar to what you describe. Initially it seemed to respond to treatment with triptans. Off course I still also had the “sinus & allergy” problems and “teeth” problems. Of course none of this was true, it was all tn, had always been
julya1330 said:
I’ve never had any dental pain! I wonder if that means I don’t have TN? All of my pain is around my eye, temple and cheekbone and on the right side of my nose.
When I had my MRI scan they said they could see I had a bad sinus infection. I know it’s not sinusitis. I’ve also had antibiotics and tried all different sinusitis meds and I still have the pains. I know it’s not sinusitis I don’t have a blocked or runny nose and the pain is more my jaw, teeth and ear that under or above my eyes. The doctor also didn’t think I had sinusitis because she said i would feel pain when she put pressure under the above my eyes.
All I can say is that my TN and ATN are both onemlion times worse when I have sinusitis. My nose etc needs permanent allergy meds (Avamys) due to asthma, maybe this makes me more sinus-sensitive, I don't know - I have ony recently discovered the connection. But in my face, nothing is a surprise.
Sinus infections always trigger a huge flare up...I think because everything is close to the trigeminal nerve it creates irritation: I am having difficulty now and it is very painful. Hang in there
I too have issues with my sinuses. I do believe there is a connection with either infection or allergies that disturb the Trigeminal nerves along the pathway. I tend to sneeze more so with the pollens, cat,dust etc.and this triggers my TN.
I have been told by ENT doc that my sinuses are somewhat loaded during the spring time.
At times they are problematic and it makes sense that this pressure would make the TN worse. I am scheduled for MVD this month and am hoping when they get those vessels off the nerve that my sinuses will less likely be a catalyst for my face pain issues. Fingers crossed.
Lots of the Trigeminal pathways line up in the vicinity of the sinus zones and if you have some inflamed sinuses or build up of secretions, they can indeed magnify the pain more so.
I was diagnosed with vessel compression on the Nerve and although the root of the problem lays there, all those branches that come off the 5th cranial nerve make there way up and around the ethmoid, sphenoid cavities and with sinus issues present it seems to compound the problem.
I hope all of us, get diagnosed as accurately as possible, and proper intervention is applied. You don’t cut off the leg if the pain is in the left ear. BB
I have similar issues and am scheduled for MVD next Friday. I am thinking that by eliminating the Trigeminal nerve issue with Teflon, that the extreme sinus pain will not be as bad. The Trigeminal nerve branch that is irritated by the sinus issues should lessen with the surgery. If the sinus symptoms continue, I will address that one when I have recovered from the MVD procedure.
I have looked at a sinus inervention called balloon sinuplasty. It apparently opens up the sinus zones allowing better movement of mucus and less congestion (which equals less pressure). Let me know what you think of my comments as well. Thanks! BB
Hi shortly before my first TN flare, I had several root canals and sinusitis. There was a brief period of remission then the pain started flaring again and has been constant and intolerable. While in relative remission (I was getting pain and tingling still), I apparently had sinusitis which went undiagnosed and I ended up with two bouts of pneumonia. My pain(by this I mean severe) I think returned because of chronic sinus infection due to uncontrolled allergies.
I had stabbing pain behind my eye, cheeckbone, temple and even my head. Not sure when the head nerve pain is though. Don't know if sharing my story will help you but hopefully it will :)
I have noticed that when I'm congested and I have to blow my nose a lot, the pain is worse, probably from touching that area near the nostril opening. I'm kind of glad I'm not crazy and also have that issue. I had to start taking Benadryl since it's spring and I also can't sleep as well thanks to the Baclofen, that has helped things out tremendously.
Had Sinus Surgery two years ago. Now that I have TN its causing pain in my right side of nose. Just want to know if any body goes through this pain in there nose?
Yes. I occasionally have flares that are concentrated along my nose on the ATN side. For me its usually itching and tingling there which I have found it be worse than pain. Over 30 years of migraine and 11 of ATN I have learned to work with pain. Itching however drives me out of my mind. The worst was a few years ago 24/7 for about a month.
Sometimes I get the feeling there’s a red hot tack being driven into the upper corner of my eye right where my eyebrow meets the top angle of my nose.
When I look at diagrams of the TN it makes a horrible sense as what I feel follows the nerve branch.
I say this in almost every post: have you tried lidocaine? Using it changed my life and brought relief.