Just diagnosed with Geniculate neuralgia a.k.a. nervus intermidius neuralgia, otherwise known as stabbing ear pain with burning.
Looking for someone else that has this form of neuralgia - it seems to be a bit rarer than TN and not much info out there on treatment.
I'm in Oregon
I have that as well in addition to TN. I have the shocks in my face pretty under control with meds and a nerve block. The nervus intermedius has been more difficult to control. I seem better able to tolerate these symptomds. I’m from PA. Welcome and good luck!
Hi Kelly. Thanks for getting in touch. Sorry that you got landed with TN and NIN. I'm not optimistic about meds working because I've actually been on lamotrigine (an anti-seizure med) for years for treatment of depression ( I have bipolar disorder that is pretty well managed). I thought surgery options for NIN would have better prognosis than I have found online. I can tolerate the pain for a lot longer before I'd opt for surgery. My NIN doesn't have an obvious trigger - does yours?
Hi Irene, I have Genicuate neuralgia (along with TN and Occipital Neuralgia and Bi-Polar), I am a native Oregonian, but living in South Carolina, When I put the black 'n white down I really figured I would be trading one set of problems for another set which could be even worse so decided against MVD surgery. For not thru the right combination of medications and botox I have the pain down to an acceptable roar. Dr. Burchiel implanted a Occipital Nerve Stimulator, but that didn't work for a numerous amount of problems and I had it removed after 9 month. I try to get to Portland a couple of times a year.
Gail: Thanks for getting in touch. I never expected someone from S Carolina to be seeing Burchiel! I'm so lucky OHSU is a 5 min drive for me.
You're right surgery seems like the very last option for GN (or NIN). What do people tend to call it? Facial paralysis and loss of taste. If I could not taste I would put on 200 lbs trying to find some satisfaction in eating. Haha. I must say I feel a bit cheated over this. I've struggled with mental illness for a long time (I'm 52) and just when it seems to be getting manageable I get a new diagnosis. Having said that I do seem to be one of the lucky one's. My pain is severe but only for short spells.
I'm curious do you have a trigger for your GN. I read of one woman who was triggered by touching the back of the ear canal. I have no obvious triggers and even get episodes when I'm sound asleep. A very rude awakening. Anyway this is all new to me. My PCP diagnosed me a year ago with TN and I just saw Burchiel this week. I have MRIs and an MRA scheduled for the weekend and back to Dr. B next week.
Do you have a support group for your bi polar disorder. I was using DBSA, but am giving it a break for now. My family and friends know that I have bipolar disorder and so I always have someone to call. Feel free to to contact me for GN or BP support. Irene
I did have a period of being completely pain free from the TN and NIN. To get this I had a nerve block, took 800mg of Tegretol and 900 mg of Neurontin. It lasted 2 months. The pain has been returning, mostly the NIN symptoms. I’ve had a few TN pains over the past week so I’m guessing my nerve block is wearing off. Maybe trying an Anti-convulsant commonly used for TN might be helpful???
Regarding triggers, touching near the start of the ear canal is torture. Cold can cause it and sometimes there is no trigger. I could be sitting reading a book and feel like something is stabbing me in the ear. Just crazy!!!
Good info Kelly - on the triggers and the "nerve block" I wasn't sure what people meant when they said that. I think I will end up on Tegretol. I don't expect the lamotrigine to work well. Thanks Kelly
I also have the awful deep stabbing pain in addition to TN. My ear pain has always been my worse pain. I get interment deep ear strikes of pain throughout the day along with the constant ear pain about 2-3 times every months that put me down for 24 hours. It is the pain that I CAN NOT tolerate. Im on Tegretol, Lyrica, and Elavil. I also have AD from treatments that I have had trying to get arid of this awful disease. Now I am worse than ever. I wish you all the luck!!
Hello Irene:
I have had great success with MVD for GN. Check out these two posts for my story.
http://www.livingwithtn.org/forum/topics/geniculate-neuralgia-corrected-by-mvd
http://www.livingwithtn.org/forum/topics/update-on-smashagnome
Irene,
I was just Dx with NIN (my hubby and I jokingly refer to it as Nine Inch Nails - for the initials and the feeling that it feels like someone is jabbing a nine-in-nail into your ear LOL). I live in Oregon as well, and was Dx by Dr. Burchiel. He told me he only sees about one case every 3-4 months come through his door, so I'm guessing you were the last case before me! ;-)
I was wrongly Dx with TN several years ago (I also have possible Multiple Sclerosis - or something similar to it). Before that I had been to several ENTs thinking it was ear aches. All of them said they could find nothing wrong with my ear, but one went ahead and did sinus surgery and put a tube in my ear drum in hopes of helping it - which it didn't. My MS neuro has had me on gabepentin for years for it - but it never did anything either. Over the past several months I've been having my episodes more often than I usually get. One sent me to the ER at 3am because I couldn't stand the pain any longer. Big help they were - they gave me two oxycodones (which I had at home) and sent me on my way - the oxycodone doesn't help either. My neuro then prescribed me tegratol. That didn't help. I asked her to send me to a pain specialist and she referred me to Dr. Burchiel. He told me it wasn't TN, but NIN - and made it seem more of a bleak prognosis, because there's not as much known about it and not as many treatment options for it, and the surgery for it is more risky. He also thinks my vertigo and dizziness issues are actually due to the NIN, and not the MS-like-whatever-it-is, like we had always thought.
I'm not sure what to think about the MVD surgery. I HATE the sounds of it. I'm a marathon runner. I love that about me, and I am terrified of losing that part of my life. The thought of brain surgery - and a fairly uncommon one at that - is terrifying, especially when it could leave me worse off than I am now. But I also can't deal with the thought of this going on for the rest of my life (and likely getting even worse, as it seems like it does for many people).
Right now I have about 3 days of the week when I have the dull aching pain that feels like an ear ache. Some days it migrates up to the area around my temple. I will generally get a few of the stabs on those days. But then there are about a day or two out of every two weeks when I will get the all-out sheer stabbing, electrical episodes, when it feels like someone is intermittently jabbing an electrified ice pick into my ear drum. These are the days that I can't stand. They incapacitate me. I lay in bed, writhing and crying, and my poor husband feels so helpless. Nothing helps the pain, nothing even takes the edge off. I used to only have this happen several times a year, so the fact that it is happening much more frequently is scary to me. I can't imagine what life would be like if I had the jolting pain every single day.
The area around my ear and up into my cheekbone often goes numb as well. Oh, and I also have "musical ear syndrome" - I hear phantom music out of that ear if my other ear is covered up and there is a fan or something on. Sometime the hearing in that ear gets muffled for a few hours at a time too. And I do have fairly bad balance issues (Dr. Burchiel made me walk down the hall at his office and said, "Yep. You're drunk!") and occasional vertigo.
I don't know that I have any pressure points that trigger it. I know that if I'm already having an episode, that a breeze going into my ear canal is torture, and forget about anyone touching me at that point too. Eating and talking will often make it worse as well, but I don't know that they trigger it, per se. The only thing that I've found odd about when I have these episodes, is that they happen more often when I travel (more so road trips than airline travel). I don't know if changes in air pressure, or if I do something different at those times causes it to set off or what.
Have you all found that yours has gotten worse over time? I asked Dr. Burchiel if it is progressive, but he said he honestly doesn't know - that not enough research has been done on it.
Anyway... I hope there's an answer out there for all of us.
Hi, I have had TN/NIN for three years now. At first it only happened once or twice a month. I went to my PCP and he said it was a simple ear ache. I went to the doc a few more times and each time he said the same thing so after a while I just gave up. I mean if all it was was an ear ache I just needed to stop being a baby, right?
so, after a year. year and a half my insurrance changed and so did my PCP. I went to the new and asked about the pain, which was happening three to four times a month now and he said....ear ache. He offered to send me to a specialist but I said no because of the cost. In July of last year I couldn't take it anymore. Now it was happening two or three times a week. It felt like someone was taking an ice pick and stabbing me in the ear. Other times it felt like my ear was on fire. Also, the area around my eye socket was getting zaps and stabs along with my face and temple area. I was going nuts and eatting a bunch of asprine and advil along with an old hydrocodone prescription I had for my left knee.
I finally went to see an ENT. She was nice, she did many test that day and when she finished she said there was nothing wrong with my ears or nose. She did say though that she thought my systoms mught be TN and suggested I go see a neuro. I did, and two MRI's later along with listening to my systoms, I have TN/NIN. YAY me. So far, other than a normal life, it has cost me my marriage and the enjoyment of my job. I have an MVD set up for August and I am hoping everything turns out alright. Nothing else has really helped so far.
I too was diagnosed with NIN by Dr. Burchiel. I considered the surgery and also sought out out a 2nd opinion and for me the risks outweighed the benefits and decided surgery was not for me. I also have Occipital and Trigeminal Neuralgia and recently have undergone Botox injections (for Occipital Neuralgia) and my to my surprise it has helped reduce the frequency and intensity of pain (along with the standard medications). So I have decided to stay with current medications and Botox injection.
CCRun said:
Irene,
I was just Dx with NIN (my hubby and I jokingly refer to it as Nine Inch Nails - for the initials and the feeling that it feels like someone is jabbing a nine-in-nail into your ear LOL). I live in Oregon as well, and was Dx by Dr. Burchiel. He told me he only sees about one case every 3-4 months come through his door, so I'm guessing you were the last case before me! ;-)
I was wrongly Dx with TN several years ago (I also have possible Multiple Sclerosis - or something similar to it). Before that I had been to several ENTs thinking it was ear aches. All of them said they could find nothing wrong with my ear, but one went ahead and did sinus surgery and put a tube in my ear drum in hopes of helping it - which it didn't. My MS neuro has had me on gabepentin for years for it - but it never did anything either. Over the past several months I've been having my episodes more often than I usually get. One sent me to the ER at 3am because I couldn't stand the pain any longer. Big help they were - they gave me two oxycodones (which I had at home) and sent me on my way - the oxycodone doesn't help either. My neuro then prescribed me tegratol. That didn't help. I asked her to send me to a pain specialist and she referred me to Dr. Burchiel. He told me it wasn't TN, but NIN - and made it seem more of a bleak prognosis, because there's not as much known about it and not as many treatment options for it, and the surgery for it is more risky. He also thinks my vertigo and dizziness issues are actually due to the NIN, and not the MS-like-whatever-it-is, like we had always thought.
I'm not sure what to think about the MVD surgery. I HATE the sounds of it. I'm a marathon runner. I love that about me, and I am terrified of losing that part of my life. The thought of brain surgery - and a fairly uncommon one at that - is terrifying, especially when it could leave me worse off than I am now. But I also can't deal with the thought of this going on for the rest of my life (and likely getting even worse, as it seems like it does for many people).
Right now I have about 3 days of the week when I have the dull aching pain that feels like an ear ache. Some days it migrates up to the area around my temple. I will generally get a few of the stabs on those days. But then there are about a day or two out of every two weeks when I will get the all-out sheer stabbing, electrical episodes, when it feels like someone is intermittently jabbing an electrified ice pick into my ear drum. These are the days that I can't stand. They incapacitate me. I lay in bed, writhing and crying, and my poor husband feels so helpless. Nothing helps the pain, nothing even takes the edge off. I used to only have this happen several times a year, so the fact that it is happening much more frequently is scary to me. I can't imagine what life would be like if I had the jolting pain every single day.
The area around my ear and up into my cheekbone often goes numb as well. Oh, and I also have "musical ear syndrome" - I hear phantom music out of that ear if my other ear is covered up and there is a fan or something on. Sometime the hearing in that ear gets muffled for a few hours at a time too. And I do have fairly bad balance issues (Dr. Burchiel made me walk down the hall at his office and said, "Yep. You're drunk!") and occasional vertigo.
I don't know that I have any pressure points that trigger it. I know that if I'm already having an episode, that a breeze going into my ear canal is torture, and forget about anyone touching me at that point too. Eating and talking will often make it worse as well, but I don't know that they trigger it, per se. The only thing that I've found odd about when I have these episodes, is that they happen more often when I travel (more so road trips than airline travel). I don't know if changes in air pressure, or if I do something different at those times causes it to set off or what.
Have you all found that yours has gotten worse over time? I asked Dr. Burchiel if it is progressive, but he said he honestly doesn't know - that not enough research has been done on it.
Anyway... I hope there's an answer out there for all of us.
Gail - who did you see for your 2nd opinion? I’m actually trying to contact UPMC (who it seems like most people recommend for the MVD surgery) to see if they can do a phone consultation, since I don’t really want to fly to Pennsylvania just for a doctor visit. 
Did you have the MRI done to check for the NIN? That was another thing Dr. Burchiel mentioned, but if I’m not going to have surgery, I don’t know if there’s a point to have it done (I get MRIs done a lot due to the MS, so I’m guessing there’s no chance of a tumor being there).
Do the Botox shots help the NIN at all or only the occipital neuralgia? So far no medication has touched the pain of the NIN. Dr. Burchiel made it seem like that since I haven’t responded at all to any of the medications I’ve been given so far that there is no medication that will help my case - it’s either surgery or live with it.
CCRun, I saw Dr. Ray Sekulla at UMPC, I had the MRI done there before I saw him. He has a special MRI he likes to have done and wages his decisions on the outcome of that MRI. For me he didn't see that an MVD would be of benefit to me and may cause more harm that good. I truly trusted his opinion and didn't want to cause any more problems than I already have. The botox cut the pain level in half. They inject just below my ear, my neck and upper shoulders. Have you ever noticed when the weather changes (barometric pressure) your pain level goes up?
Barometric Pressure (http://www.fpa-support.org/2013/09/why-does-pain-get-worse-when-a-storm-is-coming/)
Also if you haven't seen this it's well worth watching. He would be another one I would go to for a 2nd opinion
We have also posted a new link on the main page at Living With TN. In two hours of interactive discussion with a support group, doctor Ken Casey offers many insights into diagnosis and treatment of facial pain, with an emphasis on the achy burning 24-7 pain of "atypical" TN. He also discusses experience with MVD used in ATN patients. Although pain relief isn't as lasting or reliable as with typical TN, the same proportion of ATN patients report significant improvement in quality of life, as do typical TN patients.
The discussion also touches on use of embedded nerve simulators in moderation of facial pain, and offers hopeful results. Founded on this new data, I have begun a revision of our Face Pain Info articles. See https://vimeo.com/10284243/
CCRun said:
Gail - who did you see for your 2nd opinion? I'm actually trying to contact UPMC (who it seems like most people recommend for the MVD surgery) to see if they can do a phone consultation, since I don't really want to fly to Pennsylvania just for a doctor visit. ;-)
Did you have the MRI done to check for the NIN? That was another thing Dr. Burchiel mentioned, but if I'm not going to have surgery, I don't know if there's a point to have it done (I get MRIs done a lot due to the MS, so I'm guessing there's no chance of a tumor being there).
Do the Botox shots help the NIN at all or only the occipital neuralgia? So far no medication has touched the pain of the NIN. Dr. Burchiel made it seem like that since I haven't responded at all to any of the medications I've been given so far that there is no medication that will help my case - it's either surgery or live with it.
Thank you for that info, Gail. I am a bit more concerned after watching the video - because I was thinking my plan was going to be to try and tough it out as long as I could and then resort to surgery when I got utterly desperate - but it seems that the surgery is less effective the longer you wait to have it (from what the doctor was saying on the video)... so now I don't know what to think. It's already been almost 8 years since I first had this pain, though there were many months in those years when I didn't have any pain. Now it it happening much more frequently, as is the dizziness and vertigo, and now it's even radiating into my temple, so that's all not a great turn of events.
I am trying to get ahold of UPMC - but I don't know if there's an option for some kind of phone consultation or something, since I'm all the way across the country. I can see traveling over there for a surgery, but it's hard to swallow to just have someone give you their opinion. =( The University of Michigan very nearly as far away for me as well, so it's hard to figure out what to do.
So the botox has helped with your NIN pain? That would be something worth trying, if so.
I tried looking up the link you attached about the barometric pressure, but there was no info on that page. I will try searching this site for a discussion on that. I'm not sure if it gets worse when the weather changes. I've never stopped to think about it, so I'll have to pay attention now to that when I have it happen. I do know it happens more when I'm traveling (I used to live in Utah and when I drive in or out of that state it can happen, I'm not sure if the changes in elevation have something to do with it or not).