I wanted to see if anyone out there has GN. I was diagnosed yesterday and there is so little information out there. I want to know what I am up against and things that have worked.
Hi, I have heard many people talk about putting rice in a sock and microwaving it. Then they put in on there ears for the warmth. I have never done that but many have said it helps. You can put in a keyword search for past discussions. I know there have been many on this subject. Wearing protective head gear when you are outside is important. Like a ski mask, I wear a snug hat with ties and then a hood over it and a scarf or a cowl..which is a circular scarf. Works great!
I do not eat cold foods straight from the refrigerator as they will trigger tooth pain and then EAR pain. So room temp foods only are a good idea. Canteloupe is real hard to eat as it takes a long time to come to room temp ... Beets are another I have found offensive. LOL
I also have custom made ear plugs for loud noises as I have hyperacussis... It also helps a little with cold air hitting my ears. I can still hear normal conversation, just drowns out loud noises. It helps me a LOT!
I tried on Bose' brand noise cancelling headphones...boy were they great! You could let certain amounts of noise in by dialing it. Really expensive, but gosh was it nice in the noisy atmosphere I found myself in for a month. I haven't bought them, just tried someone else's on.
Sometimes I find excessive talking or chewing will bring on pain, but most of the time I really don't know what brings mine on. I have made a tent with a long heating pad that helps with both TN and GN pain, that way nothing touches me. I've just started Tegretol low dose as well as the high dose Neurontin that I've been on for years, some days I think it might be helping and others not..could just be the occas, good days that I have on my own. But yeah, wear a good hat that covers your ears.
I agree, it's hard to find much info on it. I continue to Google and Bing it. "Granny" found a few things to click on in pdf form.
Hi, thanks for mentioning me. I don't know what page there was a lot of discussion on this. My GN is atypical. I also have a history of tmj with surgery all the way back to '86. I do not get the constant stabbing but it started with stabbing on chewing almost like my tmj except the ear pain from tmj is a constant screwdriver in the ear pain. I get pinna ear pain, earlobe pain. And yes heat feels great. I have the rice one that wraps around your neck but can get around to your ears. Olive oil with garlic helps deep ear pain but you smell like garlic! Coverings for the ears and face during cold weather and windy cooler weather is a must have.
True GN has been discussed on a page where a few doctors are mentioned. One place to go is UMPC in PA. My neuro had to be re-educated by me regarding GN. He is doing botox in my scalp but only goes into muscle for ON and TMJ. It has been helpful. Google for video on geniculate neuralgia surgery you.tube. Those that are positive MRI get a better chance at surgery. I am hoping mine will go into remission. It comes and goes.
Finding the right medications that you can tolerate is a long trial and error process but work with your neuro on this. Good luck to you. Sharon (Granny)
Thanks to all who have shared their stories, it helped me to find a DX and eventually get the right treatment. Now I feel as if life can go on as planned. I want to share my story so that it may help someone, like the stories that helped me. My story is a little different but basically the same.
I am a 36 year old male; when my symptoms started I was 34. Here is the basic time line: woke up with a swollen right eye, nothing visibly wrong, no redness, no infection, doctor was a little perplexed. The eye resolved itself and then about a week later I woke up with what I thought was an ear infection. Again, nothing that the docs could see; no redness, no infection. At this point the right side of my face was also numb, mainly around the right corner of my mouth and around my right eye.
Had first MRI about a month or two after the symptoms started, nothing was apparently wrong. At this point my symptoms where: Constant dull aching, burning in my right ear followed by episodes of an ice pick in the right ear canal which felt about two inches straight into the ear canal. Then I would have flare ups on the right side of my face, with the epicenter of the pain seeming to come from my right ear canal and would radiate outward to the right side of my face, mostly effecting my right I eye. I was then DX with Atypical TN.
After that DX I was put on a gambit of neuroblockers, with Tegretol being one of the worst. None of them really helped the pain, and made my life miserable. The only thing that helped at all was narcotics, which just took the edge off.
My new neurologist asked for another MRI and this time it revealed a vascular loop compression to support the ATN DX. I was then referred to UVA for Gamma knife. They were confident that they could relieve some of the facial pain, but none of the ear pain. I told them that the ear pain was constant and that is what I needed relief from, and that I could live with the face pain and numbness. The doc at UVA asked if anyone had ever mentioned Geniculate Neuralgia? My wife was with me, thank God, because it was such a short comment that I really wasn’t paying attention. She stopped the Doc and asked him to repeat what he said. On the way home my wife googled Geniculate Neuroglia (GN). That’s when we found other people who had similar symptoms closely lined up with mine.
From these blogs we found Dr. Gardner and his nurse Lois at UPMC. I asked my neurologist for a referral to UPMC after my wife talked to Lois and was given a tentative appointment and surgery time for about a month out. My neurologist gave me the referral and I worked with Lois and my insurance company to make sure everything was lined up. Dr. Gardner wanted a very specific MRI done which I had done in my home town and sent it to Lois.
I arrived at UPMC and they lived up to the hype. Even my mother, who is a nurse as well, was very impressed with the hospital. Went to the pre-op appointments that Dr. Gardner and Lois had scheduled for me. Then I saw Dr. Gardner; he said my symptoms were Atypical GN but he saw the problems on the new MRI. He told me that he was 90 to 95 percent confident that he could relieve the sharp stabbing pain and he was 50 percent sure he could relieve the constant burning pain.
At this point I would have tried anything, so I said let’s do it. And two days later I went into surgery. I decided not to look at the surgery on youtube, but my wife did and there are many videos, but for me it was better not to know all the details.
Anyway, I woke up from the surgery in more pain than I could have imagined. My neck felt like I had the worst whip lash ever, and then a MMA fighter was putting his knee on my neck. That lasted four days. Now I am about two weeks past surgery, and the results have been AMAZING. No sharp shooting pain. Little to no constant pain, which is very livable and seems to continue to get better as the ear fullness goes away. The ear fullness was a result of the surgery which they warn you about beforehand and the say can last up to approx. 6 weeks. My ear fullness is almost gone, my energy is getting back to normal, and discombobulation is almost back to normal and only brothers me if I push myself too far. I have been walking the track a lot. I feel like my hearing is the same as before. For the first couple of days my hearing would cut out just for a second, like someone pushed the mute button, but that only happened for the first couple of days and I was told it is very common. I truly feel in a week or two I will be back to 100%, which I never thought possible.
From the first symptom to surgery, the process was over 18 months. I read on here before that someone wrote never to give up. I thought that was kind of BS, and was feeling hopeless at times. But thanks to my friends and family, especially my wife, they wouldn’t let me give up and now I am very optimistic for my future. So, take it any way you want, but you shouldn’t give up. I know for the others out there who have suffered for years+ that is going to sound like BS, but they are making new discoveries every day, and they don’t fully understand everything yet. For example, one of the reasons my docs were so confused was my symptoms were affiliated with face pain and numbness which I was told are completely different nerves and that there was nothing in common. Well guess what? I now have no face pain and no numbness since right after the surgery; in fact it was the first thing that was noticeable to me.
Sorry for the long post but I wanted to help, like so many of your posts helped me. Take care and good luck, Tyler.
Thank you for posting. I have said that many times on here...Never give up, and Never give in. And I get that from Dwayne "The Rock" Johnson. Do not let TN win. Keep fighting the good fight ...Although there have been many times I have been very low and the pain of Geniculate Neuralgia among other pains, that I have had, have tried very hard to take over my life. But I refuse to let it.
I am very happy to hear of your success in the treatment of your pain,Tyler,...And I wish you the best in your future. In Everything you do from here on out!!!
Yes, thank you for your descriptive note, Please keep us updated on how you do. Having a MVD for GN is so much scarier than one for TN (speaking from someone who's had a MVD for TN), the potential for permanent negative complications, so it's so good to hear a personal story, whether good or bad. I hope good luck continues for you.
Hi Tyler. I have atypical GN mixed with ATN. I have the bitter taste in my mouth constant with ear fullness and earache. It did start with stabbing pain but reminded of the symptoms I had with tmj requiring surgery which was successful for a deep screwdriver ear pain when I was only 29 but it did not affect the atypical facial pain I was having. Fast forward to age 56 I was in remission for almost 20 years from ATN but it came back and later in that first year I started to get ear pain but it was jabbing at first and it hurt to chew. It was all right sided at first and felt like constant burning including the ear lobe and then moved to the other side too. I had a positive MRI for an aberrant blood vessel near CN 7 but it was on the left side. An ENT did a thorough work up but was only interested in finding out if my hearing was affected. My hearing was fine. He also told me CN 5 is involved and is only 1 mm away from the tmj joint.
Just a little history of my facial pain. I did a lot of research and if I were ever to have anything done for this I would travel from Florida to UMPC. I am happy for your success and it is encouraging to know even if you are atypical if I should ever return to jabbing pain in my ears I would go there. Right now I am getting botox for the trigger points associated with tmj and ON from my neuro which has helped reduce my ear discomfort.
You were very fortunate to have gone to UMPC. They developed the surgery for GN. I wish you continued success and many more days ahead relieved from your pain.
This is a copy & paste from a letter I wrote to someone very helpful on the site, I wanted to share, because until today I didn't find anyone with symptoms similar as mine (mostly because of the ear swelling). I want some of these key words to be put in a discussion should someone else stumble upon this site & need answers or feel like they are alone or don't quite fit the normal diagnosis of TN. I would like to go deeper into my journey & progression. The beginning of my pain started deep in my ear like an ice pick, sometimes external swelling would also be present, and hyperacussis (just learned this term I always said supersonic painful hearing..lol) I will follow up with some photo examples. numerous diagnosis, spider bite, sunburn, earrings. Upon visiting the dentist a root canal was done (later extracted). I was sent to an ENT, who after doing a saliva text (making sure there wasn't a tumor or clogged), felt that the timing (stress sun or wind exposure) linked it to herpes on nerve ending in the ear. He later retired Different variations of meds for many years, I just believed that this was the case as my flare ups increased over time (cautious to keep my ear protected from the sun). I realized over time that wind played a big roll in my flare ups, as did vibrations (motorcycle, race cars) even sound seems to cause pain. I did not have the classic rash as with shingles, my ear would swell & behind my ear almost glandular (not all the time) & sometimes develop a lesion but not sure if this was due to the dermis stretching to extreme. ENT did perform a endoscopic sinus surgery removing some polups. When I have/had a flare up the fluid in ear is clear (whether or not the drum may be bulging). Countless rounds of antibiotics & steroids. fast forward constant headache light sensitivity, went to opthamologist & he looked at my optic nerve & said you need to see a Neuro. Intro to PTC, first action, MRI then Topirimate asked me to loose I think it was 12% bodyweight (biological brother skinny as a rail same issue, ended up with ONSF leaving him almost blind . Upon completion of weight loss with no change in symptom agreed to do a Lumbar Puncture (high opening pressure while I was on Topirimate), CSF testing did not show any disease such as Lyme etc. Ear issue still lingering, asked the Neuro & was continually recommended to see ENT. In the 10 years of pain & specialist an ear infection was never found. Topiramate turned me into a zombie, example driving home from work & drove off the side of road, realized & came back onto highway (normally this would sort of scare you awake if you had feel asleep), did not phase me, the fact that it didn't phase me scared me. Entro to diamox, first kidney stone...then another, Urologist found it rare as I didn't have the classic causes for stones in women. 24 hour urine test & stone removal didn't indicate diet ( they told me from day one cranberry juice is not your friend, taking Uricit-K to help break down any stones & flowmax. After about the 3rd time to the fast track clinic @ the Urologist, dr said it is almost impossible for your body to create these stones so quickly, after ct scan an apology was received. If you have ever had a kidney stone you know the flank pain/symptoms there isn't a "maybe". Several other ENT visits, no your hearing is good, no infection, can't help you. First day to new Neuro near my office...yippee he had seen a connection with some patients of Diamox & kidney stones, switch to Hydochlorathiazide (never say never but frequency of kidney stones reduced tremendously). Discussed ear & connection & he says yes PTC can have many effects on nerves etc., quite probable there is a link. BY this point my pain not only chronic but progressive as it has also extended into jaw (swelling & tender to touch constant in jaw about 1/2 way across my face). Gives me hope that it is not likely to cross over to the other side of face. After more visits he believes I have TN, another brain MRI without contrast shows no change, mentions pineal cyst ( I was wondering if the PTC was due to my body producing more CSF to go around the cyst?). Pain in face/jaw increasing tried Lyrica 50MG 3 X a day, can't believe it in 2 weeks the swelling in jaw goes down, pain decreases. then hands, feet face swelling brain pressure through the roof. Stop taking Lyrica, try Cymbalta (seems to have no effect), try Gabapentin 100mg 3 X a day does not seem to help with pain or swelling (extreme lythargic almost narcoleptic & vertigo even while lying down), back to Lyrica 25MG 3 times a day does not bring down swelling but I am hopeful, while on Lyrica & big Flare up came on just after a dental cleaning before Christmas (was out in the wind) ear swollen face swollen full on attack! happened to have an appointment with a dermatologist who said what the heck do you have going on here (a friend of my primary) so I tell the story & he says well let's do a biopsy of the ear, gives lidocain/steroid shot to decrease pain & swelling as well as numb the area. Results concluded no cancer no herpes, no bacteria (not cauliflower ear), says if it happens again they could do a punch biopsy, but it remains a mystery. Swelling & pain did not go down...2 weeks later back to my Neuro, says stay on Lyrica 25MG & adds amitriptyline once at night. Now swelling is so bad shoes will not fit, brain pressure extreme vision impaired. I am sure there is a multitude of grammatical errors as I am a dislexic typer, but vision is poor today. I told Neuro about lightening strike on my right side (only a few in a week's time) & he said side effect of Lyrica. While I work full time I am struggling to be in attendance. I have baclofen & flexeril for my back (although I only take flexeril at night as it knocks me out). I have Diazepam for flying, so will discuss with my primary. He has been there from the beginning of all this & truly cares about my well being. When the Neuro asked me how many days a month would I say I am incapacitated & I asnswered he said "this is acceptable" while I am ever grateful that he listened about my ear & decided what initially was facial neuropathy concluded TN, although now I would tend to think GN mor especific, he does not seem concerned with solving the problem. When I asked him was there anything that showed on the MRI he said no. He doesn't know the "before" me, so I struggle with showing my frustration in front of him, for fear of him labeling me a "problem" glass is 1/2 full hypochoindriac. Maybe my primary could call him? He has many certifications board acredited etc, but he just doesn't seem agressive as far as helping me. Should I consider seeing a Otologist/Neurotologist? My insurance doesn't require me to have a referral to see a specialist, but I don't want to Dr. hop would rather my primary or my Neuro suggest. I am now on Amitryptiline10mg swelling has gone down & reintroduced taking Gabapentin300mg only taking these meds at night so I can function during the day. I will take photos of entire face when a flare up is in full force as swelling in jaw all the way to mouth is evident, but thought ear swelling was least common, while there is not any infection in the ear or inside the outer ear.131-beginningofflareup.jpg (206 KB) 132-earflareup.jpg (62.6 KB)
Thanks for posting. My son is experiencing similar symptoms
How are you doing now? Did you experience any hearing loss since then. Are you still well?
I have been meaning to update this post for over a year, but for some reason it was harder than I thought. I will update or just flatly take down this post soon. But I did want to answer your questions. First I am sorry to hear about your son, this is life altering, and it’s hard to think about what I was and what I have become. The surgery’s overall effect to reduce or eliminate my pain was a failure. In fact things have gotten much worse for me, I do not contribute any of that to the surgery. I think we just had the wrong dx, even with a MRI showing evidence. I did not lose any hearing, and I still standing by my opinion that the people at UPMC are great. To me it was worth a shot, but I would try almost anything. I now along with all the prior symptoms have an awful stiff neck, and back that seems to just run the length of my spine. And awful pain in both my hands(top side joint closet to the finger nails and tops of the wrist). Anyway, if you would like me to answer any other questions, you can send me your email address. I will also say the folks at UPMC told me that I had a 50/50 chance of total pain reduction, so they did not promise me the world and felt that they were honest about my chances. My Dr. was Paul Gardner. Best of luck.
I am so sorry to hear You are living with this wretched pain and more.
my email is ■■■■■■■■■■■■■■■■■■■■■■■, please write to me so I can ask you more questions
Does anyone have tinnitus in their affected ear?