I'm still confused as to whether ear pain can be caused by TN and ATN or if it is a separate issue altogether (but happening simultaneuously)?
My pain started with ear pain and my GP treated me for an ear infection. Then an ENT said it wasn't an ear infection. Well, long story short, my ear hurts deep inside, sometimes just aching, sometimes shooting pains and has been hurting for 8 mos now. It radiates sometimes into my jaw and lower teeth (saw my dentist who ruled out any problems with my teeth). And I also have constant cheek and eye pain. My neurologist hasn't "officially" diagnosed me with TN (although I am pretty sure I have ATN). Previously, 2 ENT's and my GP have mentioned that it "could be" TN.
So I'm just wondering if it is something else as well. Does the fact of having the ear pain lean more towards a different diagnosis or can it indeed be part of this? Any insights would be helpful, thanks!!
Hi Kristen . Just read your post and your story is similar to mine. I can't answer your question because I am as confused as you. I do have an appointment on Thursday with the Chief of Neurosugery at Dartmouth Hitchcock who treats TN. Maybe I can get an answer. My pain is now in its 8th month but started when I got a piece of popcorn shell stuck way in the crevass of my tongue where it connects to the throat. Couldn't get it out. Hours later with shoving and probing with my finger I got it out and then got a huge shot of pain up my face and in the tongue. After that I started having earpain deep in my ears (both ears) and pain, tingling and numbnesss in the tongue. It has been life changing, the pain can get crazy. Sometimes aching, sometimes shooting. Deep in ears and back and forth to tongue. Went to 2 ENT's ears are fine. Went to 2 neurologists and had MRI/Catscans and can't see anything. They said it coul be atypical TN but a 3rd neurologist said no since its both sides. Meds are not working and I am miserable!! I don't have answers maybe the neurosurgeon can help. At this point I would consider a medical treatment but don't know if I have TN or not or what can be done with such atypical symtoms. Feel free to email me anytime Gene ■■■■■■■■■■■■■■■■■■■ PS is your pain one ear or both? Can you get through the day with your pain and continue your job? I can't although somedays are better than others.
Mine is one-sided. And I'm a stay-at-home-mom to 4 kids. My oldest is 12 so they can get by - but I'm not functioning well at all. I just manage the bare minimum and then stay in bed as much as I can. My husband has to take up the slack for most of everything. Right now I'm on Lyrica but it's not helping, so I'm just in constant pain and not really dealing with it very well. Good luck with your appt!! I go back to my neurologist next week . . . I've just had an EEG so we'll see if that showed anything. I have also had an MRI which didn't show anything. Ugh. It is good to know I'm not alone at least! :/
You are not alone. Mine started in the ear almost 10 years ago. I called it the knitting needle pain, because it was like someone stuck one through my ear into my brain. Doctor after doctor couldn't figure it out and no one even mentioned TN. Then, last September, the pain wen crazy and, after more rounds of drs., they decided on TN. No help from Lyrica or Cymbalta, but after raising me to 800 on Tegretol, I am starting to get some relief. I also have Percocet for backup. If you look at the trigeminal nerve it fans out and does affect the ear. Good luck to both of you.
Hi Kristen C . I was finally diagnosed with Atypical Facial Pain about 6 years ago , after about 16 years of increasing , but undiagnosed , pain . My ear pain appeared about 2 years ago , and certainly is related to what goes on around the responsible nerve , which has become incredibly 'raw' in the last 4 years . I have a constant low level pain , with an accompanying headache ... but both can become quite severe , at any time , and for no obvious reason . Alongside these symptoms is a persistent low level sinus infection problem ,which is prone to flare up at any time ... sinuses and neuralgia seem to have developed a 'symbiotic relationship ' ... strangely enough , when I develop a cold , which usually entails a ' clearing out ' of the sinuses , the neuralgia retreats to the background . With this in mind , and other observations with regard to the feeling of a liquid build-up in the inner ear , I do wonder if my neuralgia may be aggravated by the accumulation of mucus , and the resulting pressure on the nerve ... which is often relieved when I have a cold ' clearout ' .
My symptoms certainly match yours :
1 Pain deep inside the ear
2 Constant ache with ' burning ' and shooting pains
3 A spread of pain and/or numbness into my lower jaw , and upper jaw , sometimes continuing into the roof of my mouth , and to the centre of my forehead ... where the nerve ends up in the Pineal gland
4 Constant cheek and eye pain
Like you , I seem to be in a ' no-man's land ' , caught between the ENT specialists , the dentist , and the Neurologists
I can see so much of my own story within all of yours. I just have pain in one ear, and it feels as if someone is corkscrewing into my brain. Some days the pain is bearable and others it's excruciating. It radiates down into my jaw. Just yesterday I was referred to an ENT to have further checks into all of this. My GP is unsure if it is ATN, something wrong in my ear or the great unknown. Like all of you I suspect that I will be no man's land caught between all these specialists with no solutions or answers.
My next throw of the dice is with the Maxillo-facial department ... I've no idea when I will get an appointment , but it's a line of investigation that I thought worth following , and was able to convince my GP to refer me .
Apart from the pain ( in all it's many splendid forms) , do any of you experience an increased numbness , some of which is permanent ? ... and Kristen , do you get a lot of visual distortion and double-vision when your eye is hurting ?
Would it be useful to tag your emails with your country of origin ? ... it would certainly help me to know if any particular medication and/or treatment is available in this country .
@Graham - I've had some strange tingling along the side of my nostril, side of my tongue, and along the outer edge of my ear but not really "numbness" per se. And the tingling is very short-lived. I haven't had any visual distortion in my eye, but I have had some discharge. My Dr said the eye doesn't look infected but it is bothersome. What about you? Such crazy stuff. I had no idea the Trigeminal Nerve even supplies the outer ear, but there is a small section that it does and that's where my weird sensation is!
Good luck with your journey. I just had an EEG on Mon. and have an appt next week with my neurologist to go over the results. Not sure what it would show, if anything, so we'll see.
Hello again , Kristen . There is a move in the UK to define TN as a disability , to enable sufferers to obtain some support , financially or otherwise ... from what I have learnt over time , is that many people with TN are often , at times , severely disabled and unable to function well enough to get along without support , even if that only entails boosting morale . However , as yet , there is no official recognition of TN as a disability in the UK . Do you get any sort of support from the government in the USA ?
So , groups like this are so important ... it is very hard to suffer alone ... if you have a partner who is sympathetic , that is a great thing .
My eye seems to be affected in all sorts of ways ... needle-like pain , numbness , visual distortion , double vision , weeping , and a feeling of 'grit' in my eye ... fortunately I don't get all of these symptoms at once .
After a long history of the pain , at present I seem to be experiencing the worst bout ever ... the pain-free gaps seem few and far between .
I have a constant severe to very severe earache. I am a mess around tn b2. I have TN on both second branches, tn 3 on the right and both occipitals. Sometimes my blocks can give me numbness but that is very short lived. My doctors told me that the presence of an earache is a very good indicator of TN Branch 2 and 3. In some ways it is helpful, in that it provides more information for your doctor and indicates additional pain areas. My occipital rhizotomies were very helpful in decreasing the pain for several months. The increase in pain is an indicator of the need in the near future for other rhizotomies. I am no doctor but I hope I helped. Tommy
I can see so much of my own story within all of yours. I just have pain in one ear, and it feels as if someone is corkscrewing into my brain. Some days the pain is bearable and others it's excruciating. It radiates down into my jaw. Just yesterday I was referred to an ENT to have further checks into all of this. My GP is unsure if it is ATN, something wrong in my ear or the great unknown. Like all of you I suspect that I will be no man's land caught between all these specialists with no solutions or answers.
I'm blessed in that the meds I'm on make my ear pain only occassional. But when it hits its like an electric shock sharp and intense deep in the ear canal. If I skip any of the meds I take for Trigeminal Neuralgia, Chronic Paroxysmal Hemicrania, Fibromyalgia, or peripheral neuropathy, it rears its ugly head. I get occassional break through pain but it is rare. It has however hit me a few times in the last couple of days. If it persists I will have to figure out what to do next. It's so sudden and sooooo painful it makes you gun shy as if you are waiting to be shot.
This sounds exactly like my life!...Paint the same But only onmy left side. in order to function I feel like I have to medicate which then i am half zombied.
Kristen C said:
Mine is one-sided. And I'm a stay-at-home-mom to 4 kids. My oldest is 12 so they can get by - but I'm not functioning well at all. I just manage the bare minimum and then stay in bed as much as I can. My husband has to take up the slack for most of everything. Right now I'm on Lyrica but it's not helping, so I'm just in constant pain and not really dealing with it very well. Good luck with your appt!! I go back to my neurologist next week . . . I've just had an EEG so we'll see if that showed anything. I have also had an MRI which didn't show anything. Ugh. It is good to know I'm not alone at least! :/
I'm glad I found this forum. I actually have had ear pain for 3 months now and all of the ENT's that I have been too have not been able to diagnose me so I'm beginning to wonder if it could be nerve pain. I have the burning sensation, and pain deep in the ear but its not an infection. Has anyone had any help from medications?
I have ear pain for many years... It may be GN, but I haven't gotten to see a ENT and bring it up to him yet... Not even sure how to bring it up. How do you get diagnosed w/ GN?
I have similar pain, the past four months, 3 1/2 years post MVD. Suddenly ear pain, sometime like someone has shot a hot needle into my ear with a bow (arrow), sometimes right below the earlobe and sharp stab or right above the tip ofthe upper earlobe. I mentioned this to my neurologist, I also have a thyroid goiter and thought the pain was from this, but she said it was very likely from the TN nerve. Back on low dose Gabapentin and Klonopin, but needing more already. Glad I found this group, I had not heard of others with ear pain... K
I’m new here…I tried to reply before, but it seems to have gotten lost. I developed horrible daily right ear pain after lots of dental work. I’ve seen a neuro, who started me on Lyrica…very low dosage. I’m switching neuros (long story), so I feel a little behind schedule. I, am also seeing a pain doc In About a week. I find those little Warner’s people use for sking,etc sometimes helps a little when I hold it up to my ear. I’m shell shocked at the moment. The first neuro I saw simply said it is some kind of nerve pain. Any kind of narcotic particularly helpful for breakthrough pain for this? Thank you.
The pain is like a heated drill going into my ear. It's the worst pain. when I get the "axe" pain going down the Trigeminal nerve, it's only a horrible second, but the ear can last for hours, days. After failed meds, I'm on Tegretol and Savella and Oxy.. when it becomes uncontrollable, nothing works. I spend a lot of time in bed. Nobody really understands this...they think they do, and I admire them for trying. Now, My 44 year old cousin has been diagnosed with TN. As she puts it, at least we can talk to each other and REALLY know what the other is enduring. Small comfort for each of us.
Kristen - my understanding is that TN is caused by compression of the 5th cranial nerve by a blood vessel, and that geniculate neuralgia (GN) is similar, but instead is compression of a nerve called the nervous intermedias by a blood vessel. The 5th cranial nerve and several other cranial nerves and the nervous intermedias are all located in close proximity behind the ear. Assuming this is the cause of the ear pain, then the cure is to move the offending blood vessel away from the nerve. The surgeon also sometimes places tefon sponges between the blood vessel and the nerves to keep them out of contact with each other. My wife just had this surgery last week. So far, she has had no ear pain since the surgery. She had hers for 18 mths and at the level descrbe above. On a scale of 1 to 10, it was about a 13 at its worse causing her to pas out. Do a google search on "UPMC geniculate neurolgia" to get more info. We found that the top experts on GN are at UPMC.