I am 28 and have had facial pain on the right side only (eye,nose,cheek to ear,sometimes lower jaw)for about three months now. First saw pcp for sinus infection and took antibiotics for 2 weeks. After meds were done, the pain came back more intense on the one side. Pcp thought another sinus infection and gave me more antibiotics. Same thing pain came back on the one side. Saw ent and did ct of sinus. He said not sinus and sent me to a neuroligist. He told me it was trigeminal neuralgia and put me on neurontin and lortab . Lortab does nothing for the pain, but neurontin seems to be helping the higher the dose I take. Saw neuro surgeon and was told not trigeminal neuralgia and didn't know what is was and no I am awaitng an appointment with a different neuroligist. The pain is constant, but things like cold, wind, talking, walking, and just touching it make it feel like I'm being stabbed in the face. Anyone know what this might be. I hate waiting for answers, or getting the wrong one. Meanwhile I am tired of being in pain,and would like help
You have all the classic symptoms of trigeminal neuralgia. Perfect location, type of pain, triggers of pain. Did the neurosurg say why he thought it was not TN? Yes, often Neurontin needs to be taken in very large doses to be maximally effective, but you need to work your way up. There are others if Neurotin is not effective enough.
I would check in online with the Trigeminal Neuralgia Association or one of the other website and talk to people there. Also the TNA has a list of specialists in this disorder if you want to get a second/third opinion. TN is considered to be some of the worst pain imaginable. My heart goes out to you.
Just an aside, in Europe they are using a supplement, Alpha Lipoic Acid 200mg three times a day to help with the pain of TN. You could do a search on "alpha lipoic acid trigeminal neuralgia" to check it out. It is a supplement with a very low toxicity profile and can be used with the neurontin.
I've had four sinus surgeries, the first was to make "windows" in my maxillary sinuses so that they would drain properly, I wasn't able to get rid of excess mucosa building up in them if I would get a sinus infection. I remember being on antibiotics forever, the first surgery worked for a short time, eventually I got another serious infection and the scar tissue had developed and closed off the "windows". I had a second sinus surgery to open the "windows" again and to have an ethmoidectomy. I thought wow, I have the ability to finally breathe and then allergy season came and colds in the winter and I was no longer able to breathe. I went back to the ENT who did another CT Scan, I've had so many of these, I can't even tell you how many. I found out that again I had a sinus infection like no other that I had before. Antibiotics had pretty much taken over the protocol of care and then the resistance to them began.
The FOURTH and FINAL surgery was the worst surgery ever!!! I was in dire pain and every time I had anyone come in to change the dressing on my nose, I screamed every time they touched the side of my face. I found out that the Trigeminal Nerve had been nicked, maybe even severed. To this day if I'm out in the cold, it will flare up and begin stinging like I've been slapped hard. When it turns cold and windy, the stabbing pains begin. I've learned that when I'm outside in the winter time ( and I'm California ) as kookie as it may look, I need to wear a scart up around my face to avoid the pain. I lay in front of a fan at night because of having trouble breathing through my nose. I take pain meds and they relax me so much that I feel like I'm not breathing, I'm a very shallow breather, sleep study confirmed. I panic when I feel like I'm not getting enough air so the fan is the only answer. When the air conditioning is on in the summer time, I have the problem with the facial pain too and I usually wake up in hibernation under the covers. I do not take anything for it because I'm already on pain meds. I wanted you to know that what Quix has suggested to you is very good advice and I agree with her about your symptoms because they're like my own. I never knew that there was an association for this type of injury. I was told that mine might heal and it might not. I've had it since 1997 and I guess I've just learned to deal with it and what causes it. Talking after my surgery though was really hard and I found myself writing notes for conversing.
I'm thinking I need another sinus surgery just from the symptoms that I've had for the past year but I do not want another surgery.
I have underdeveloped maxillary sinuses and this is the reason for so many surgeries. Now I use Nasonex (2 sprays, once per day in each nostril) and saline liberally every single day and have been told I may have to forever because I just have really bad sinuses.
Good luck to you~
thank Quix. The neurosurg said it was not tn because I have constant pain along with the pain from triggers. Your right about the neurontin not working well till you get up to high doses. The hard part is I have a 4yr old and 2yr old and the neurontin makes me so tired. That tna website is great.
NaniKai- I'm sorry that you have had a rough go. I hope you get relief soon or you . Sinus problems can bring a lot of pain
Well, from everything I've learned in Neurology, the blind adherence to "rules" and not using the art of clinical judgment, leads to missed diagnoses. It is the sign of a mediocre mind. Not a nice thought when one considers the importance of a neurosurg's job...
I looked up TN and found that it has many manifestations. Here is another site. I think you would have what this article terms "Atypical Trigeminal Neuralgia" in which there is a constant persistent lower level pain . Superimposed on that is the classic TN stabbing pain. Another link:
just a quick thought...
Sometimes I also have tingling in my upper left side of my lip when the TN is bothering me, no other time but then. Sometimes brushing my teeth will set this nerve off and I'll get the pain. It's the toothbrush vibrating (battery operated) across my teeth (molars) and gingiva that might cause this but teeth have to be brushed so I just endure.
Brushing teeth with electric toothbrush does hurt bad, along with putting on makeup. I was also told at one point I had migraines as well. tried migraine meds and they did nothing. I think the atypical tn sounds just like what I have.
Donna80 you should check out that website quix suggested.
Nankai are you on meds? What kind, and do they seem to help? I think when I see this new neuro I will ask about the atypical tn.
i have the exact same symptoms as you, i was giving the brush of from doctors for mnths, was told migraine, then another doctor told me it was basicly in my head., i finally got to see a private neurologist who diagnosed me with a type of constant daily headaches, which i was not happy with, then another neurologist diagnosed me with tn... i have all the exact same symptoms as you, mine is worse when i put make up on and when i go outside.. my eye starts to stream with water and all on my right hand side of my head, ear, face, etc hurts... my ear also feels blocked... i am awaiting an mri next week...
i also get neck pain on that side so i am having an mri of my neck and back too..
will keep you posted, please feel free to email/msn me... ***@****
I am on pain medications already but even when I'm not, I still have the facial pain. It's just not as pronounced because of the pain meds. It's lurking today as I drink iced tea. Any time I put anything cold in my mouth and it's on that side of my mouth that the TN is, it will send a little shockwave just to remind me. I can't just stop eating or drinking though so I just try to keep cold things in my mouth to the opposite side of my mouth.
I have become accustomed to the pain that this causes I think because compared to the months after surgery, it just doesn't bother me like my other pain that I have to deal with, it's become insignificant. I have learned what triggers it and just avoid those triggers exception of eating.
One added thing, I can't stand to go to the dentist and have that side of my mouth worked on because as the numbing medication is wearing off, the TN flares up. Their drills certainly don't help matters either and when I had to have a root canal and later go back to have the crown put on, I thought I would scream when he drilled...I mostly grimaced and held on to the arms of the chair. I became so agonized over one visit though that he stopped the procedure and asked me if I wanted sedation. I declined but the dentist told me that if I got that afraid of what he was doing again that day, he would reschedule me to come back for the sedation and procedure. Needless to say, the remainder of the procedure was no fun but I didn't want to go back another day and go through not only being injected again but to go through the sedation and after effects. Having injections in the upper area of that side of my mouth, there's always a risk of setting off that nerve...it's just a given.
Sorry for you, but I have it for very long time. Even that, that nobody has believed, there is Atypical Trigeminal Neuralgia.
I have steady pains in my right eye (like is top of the knife there), face (more right side), jaw, right ear, right side of the head, right muscle Trapesius. The pain is going very often from the top of the head down to the eyes and face. And, to the bottom of the neck.
I had many years ago Sinusitis maxillaris, but now I have only very dry and swollen mucus membrane, nothing is flowing out. I feel very tired, especially when I wash my hair.
Now, all doctors say it is from the neck muscles.
In my life have helped me only two Neurologists:
1.in Germany long time ago with only one injection, on the bottom of the neck, right side.
2.Second time, here was Russian Neurologist, Chiropractor who has helped me with the injection, on the same place.It was good 6 months.
He has explained to me, why this Trigeminal Nerv is painful: it comes from the vertebra C5, where is one nerve, going into Sinusitis; TN on the way to the face is irritated by Sinusitis. He told me also, that Sinusitis is from Neuralgia Suprascapularis, and this nerve is from C5.
I have also Enthesopatia levator scapula. That is muscle between bottom of the scalp and scapula. That should be cause for TN.
MRI of my head shows, that I have Vein 10x11mm.
CT scan of the head shows Atrophy of head. That means, there is no circulation.
I take in the evening, one and half drug, called Rivotril 2mg (instead of Tegretol). During the day, I feel very tired from that drug. Something very strange helps to me: Solarium!
Now, I would suggest you to do:
MRI of your neck,
MRI of your head
MRI of all your spine (you believe or not, anywhere can be the cause, but you have to find them, otherwise you can do nothing).
Wish you good luck, because I know, how do you feel.
I was just searching the net because I have been housebound lately in western WA state, with cold sensitivity in my face and nerve pain along the right side of my nose. Sometimes it causes my teeth to all ache on the right side. Reading your comment about damage to the C5 vertebra really struck me because I have a ruptured disc there and more discs that are bulging. I was in a head-on car accident when I was ten and no seat belt back then. I do get migraine. It runs in my family, but I can tell you, the pain from the nerve by my nose, and as I first described, can trigger a migraine in seconds. Now that I am getting older, (63), the doctors took away my migraine medication which was an aspirin, tylenol, muscle relaxant, vaso-constrictor combination. I am supposed to avoid rebound headaches from too much aspirin, etc. I am left with the pain. So now I take Excedrin Migraine, and then tylenol or ibuprofen and then I put up with my ice cold face and the residual pain. This is every single day. I know the cause, I guess. I have had the scan of my neck, nose and sinuses, but they gave me nothing for it. I am sure I am not in as much pain as some have described here, but I can't function very well. I just have to cope and distract myself. Are these the rules?
Nobody ever gave me a diagnosis regarding the face pain. They just said, "You might have some nerve damage." (meaning to the nerve by my nose.) I did shatter the windshiel with my face.
My heart goes out to those who have it worse. I don't cope well with the level of pain I have.
I experienced trigeminal neuralgia for about 6 months that was triggered by a severe infection under a cracked tooth. I found a dentist who decided porcelain onlays was a good solution, only this trapped all the bacteria underneath. I should have gotten a root canal, but I guess he wanted to make a few thousand dollars off me. The day he stuck the needle into my gum and drilled was the beginning of the end. From that day on it was nothing but severe pain. I kept going back to him, and he kept sanding down my tooth thinking they were touching too much. Then he told me I must clench my jaw while I sleep, so he offered to sell me a $500 mouthguard. From that point on, I spent hundreds of dollars going to a chiropractor, massage therapist, and even had accupuncture done...to no avail. I was also put on a month-long course of antibiotics...again, worthless.
One night, while up at 4am due to intermittent and severe nerve pain attacks, I googled "severe chronic facial nerve pain" and, lo and behold, the TNA website popped up. This was how I found out about trigeminal neuralgia, and I totally diagnosed myself with it. I almost wept as I discovered I was not alone or crazy. I promptly got a referral to a neurologist who wanted to put me on neurontin. No pain killers provided relief, b/c they don't work on nerve pathways.
Well, guess how it all ended? I found a new dentist, and I got his opinion. He referred me to an endodontist. The endodontist said he was 99% sure that if I got a root canal on that tooth that my pain would go away. I said, you know what...yank it out if that will stop this pain. So, he drilled through all the porcelain, and guess what he found? A raging infection called pulpitis. It was so bad that it was bleeding underneath my tooth within the root. He did a root canal. From the second he put the temporary crown on, my trigeminal neuralgia went away and has not come back...until now (possibly).
This morning I woke up feeling like I slept wrong on my ear. I have some inner ear pain, and I'm suspecting an infection. However, the whole right side of my face, scalp, neck, throat, etc. has a neuralgia-type feeling to it...almost like I am getting one big, giant cold sore under my skin. I am SO hoping it is just an ear infection with some swelling in the nerve. Please don't let it be TN. They say it is called the "suicide disease", and, believe me...if I didn't have 3 kids, I would've been more than happy to check out of this world! So, I am going to the doctor tomorrow morning to get my ear checked out.
I feel for all of you who experience any part of this. I wouldn't wish this on my worst enemy. I hope everyone gets through it all okay.
One last thing...someone said something about their eye watering. About a week or so ago, my right eye was watering almost non-stop. I thought it was getting infected, so I used my son's antibiotic eye drops for a full-course to get rid of it. It worked, but I never linked it to my current situation. Anyone else have experience with this problem? Best wishees to you all!
Hello!!! Today 2012. Sorry, I just find this web about tn pain. If you don't mind to tell the end of the story with your ent pain. I am suffering for 5 years, no one doc didn't tell me what it's hearts. Thank you.
HI, I HAVE PAIN IN RIGHT SIDE OF NOSE AND ALSO TO RIGHT SIDE UPPER JAW. ON 2ND DAY THE PAIN WAS ONLY IN RIGHT SIDE UPPER JAW .
BEFORE THIS I HAVE THROAT INFECTION AND THERE IS BLOOD IN MY COUGH. DUE TO THAT I HAVE FEVER, WEAKNESS AND HEADACHE LASTED FOR 3 DAYS.
I AM CONFUSED WHETHER IT IS SIGN OF SINUS OR Trigeminal Neuralgia OR TOOTH INFECTION.
I think i have similar symptoms but it's defiantly not as sever as many of you have described.
I went to my dentist just yesterday for a swelling of gum around the root of a tooth. i had an accident before which cost me 1 and a half tooth, and this swelling is right on the 1/2 tooth so i was very worried and checked it right away. upon studying the x-ray it is discovered that there is a pocket of puss inside the root of my half gone tooth, the dentist told me that it as either the filling of my previous root canal had fallen off or there wasn't one to begin with, so stuff gets in and well, it got infected. he drilled a hole in my tooth and let the stuff out made another appointment with me to fill it up and finish it up next time. i think this experience of mine is somewhat close to what Georgia had described, though not as painful ... i hope.
today i woke up with pain on the right side of my face, the inside of my right ear hurts, my right nose hurts, the back of my right eye hurts, my scalp on the right side hurts, my entire right face skin hurts. its not excruciating, not at all close to being stabbed. its as if my entire right side of the head became super sensitive to touching, a simple brush of face will cause pain while on the other side, not so much.
reading the previous post had worried me, i hope my symptoms wont develop into a more server one.
should i visit my family doctor? is the symptom constant, if it doesn't happen again should i just ignore it for now then?
I am also very interesting in how this all works. I'm twenty years old and this has been going on for about five years, however, it is not constant like many of you mention. There is nothing that triggers the start of it, but it comes about every few months and stays for about a week. Also - it hurts below the surface. Half of my face feels like it has been COMPLETELY sunburned - that's what the pain is like when I touch it. My right eye hurts when I blink, my ear hurts, scalp hurts, the right side of the inside of my mouth swells up and becomes irritated; simultaneously, exactly HALF of my throat hurts when I swallow.
I went to dentist Found nothing Had an MRI DONE Nothing Went to my massage therapist It immediately started hurting She said it was from my left side of my sinuses It is sooo true I try to take Advil cold and sinus medicine and it does help My pain I thought was coming from my teeth I have MS thought it was from this WAS relieved it was not from Ms When my massage therapist hit the right place with my sinuses The pain was awful So I'm a firm believer It is from my sinuses Pease try Advil cold and sinus and see if you can get some relief Thank you And good luck Marsha Kennedy Sullivan Indiana
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