For the past 8 years I have had a chronic deep pain within my left ear and occasionally the sharp stabbing pains. However, along with the chronic deep ache is a very severe sound that never leaves. It like a hissing sound, as if you were right up close to a neo sign and you could hear the electricity going through it. It makes my condition so much worse, to have to endure this horrible sound too. Been to countless dr.'s to no avail. Any suggestions would be welcome.
Yes! Typical of GN…I’m seeing a surgeon this month to get it taken care of…I’ve onlybeen living this way since july, and I’m
Done. He trained at UPMC, so I’m very lucky to have found him. After getting so sick on tegretol, I’m ready for surgery.
Could I have your surgeon's name and where he practices? I have to find someone to help me. I have no life. I only have enough energy to do a few things a day and then I have to rest. I spend most of my day in bed and it's killing me. No one seems to care. I need help so badly. Since I look fine on the outside, most people don't know what to make of me. They must think I lazy or something. But the pain and tinnitus drain me so. I want to do so many things before I die, but I'm so limited.
The deep pain in your ear might be nervus intermedius or geniculate neuralgia associated with a vascular compression of a nerve that branches between two other cranial nerves (possibly C-7 and 8, but I don't precisely recall at this moment). The hissing sound is indeed tinnitus, and might not be directly associated with any of your neuralgia issues. Many people have tinnitus in their later years (I'm 70 and I've had noticeable tinnitus for at least eight years). There are a few papers in medical literature indicating that vascular decompression of a ganglion associated with the auditory nerve can be helpful in some people. I haven't seen consistently strong outcomes stats.
Suggest you look through the "Find a Doctor" sub-tab under our Doctors menu tab, for a neurosurgeon somewhere close to you.
Regards Red
You don't say what doctors you have been to. I would assume an ENT. I have atypical GN and get fullness and pressure, my ears were checked thoroughly and nothing came back that the ENT should do. If it is affecting your hearing that would be another issue but I can say I have read up on doing surgery in that area and there is a high risk of causing permanent damage to the facial nerve. The surgery for GN is on youtube., there are some good surgeons that might be able to determine if you would benefit from MVD for your GN since you are presenting with stabbing pain. Good luck, Sharon
Hello Sharon, and thanks for your input. Yes, I have seen countless Dr.s' including ENT, Neurologist, Neurosurgeons, and everyone in between. I have had many scans but nothing abnormal shows, so I am not offered any surgery. I have had botox injections, anti-inflammatory injections, acupuncture etc. My symptoms started with a head pain on left side at night after work and then my ear started itching deep inside like something was in it. Then it started to ring on affected side and now the louder it rings the more pain (a gnawing feeling) like a toothache I feel. When I take a high dose of pain meds the pain subsides and the ringing subsides. I suffer alone because I look fine on the outside so it's difficult for anyone to understand my suffering. If I don't show too much emotion at the dr.s office, they don't take me seriously and if I over react they think I'm unstable. So, I am at a loss. I've been to dr.s with great credentials and they offer me nothing.What's a girl to do?
Hi Littlemoth, yes, I do understand the circle of medical professionals you have gone through and come up with a big zero in treatment options. The only other thing I can think of is if you are having trouble chewing or is chewing sometimes bringing your pain on?? I am post op tmj '86. My jaw anatomy changed from the surgery. I continued for 5 or more years with ATN and then went into remission for over 20 years. My ear pain came on with some stabbing pain in my ears more than a year ago, spasms of pain in temples, eyes hurt, jaw hurt and then I was left with this constant 24/7 earache, pressure and fullness in my ears and also a bitter taste in my mouth. The bitter taste is seen in GN. I am not sure because my insurance would not pay for a DMD to consult with if I have arthritis of the tmj joint. That joint is only 1 mm away from the TN nerve. I am 58 and am riddled with arthritis from 13 plus surgeries of my spine.
You appear to be somewhat atypical with GN and honestly there just is not anything that a surgeon can begin to understand how to correct. I wanted that magic bullet to cure me. When the barometric pressure changes my ears get worse. I too have had botox for cervical spasm but also some injections in my scalp and after 2 or 3 procedures in my scalp area the ear pain has lessened. The pressure and fullness too. I am still very much ATN. I still have the bitter taste. My face gets cold. The only other sufferers of cold face pain were AD, that is anethesia dolorosa, which is nerve injury.
I think my nerves are getting the wrong signals. I also think there may be some inflammation. There is a nerve block I want to ask about that is a steroid injection right into or around the TN nerve. An ENT told me the 5th cranial nerve contributes to ear pain. An MVD for GN includes the 5th nerve, 9th and 10th, unsure and sometimes cutting of the intermediate nerve. Well I am not going to have an MVD. I am interested in PNS, peripheral nerve stimulation, which is being discussed on another page for my ATN and atypical GN. It is irreversible, the leads are under the skin. There is no risk for damage.
I see that the ringing in your ears is the most bothersome. I don't get that. The ENT is only concerned about hearing loss and if you pass his tests then their is nothing he can do. Do you take aspirin products? They can cause ringing. There are some homeopathic remedies for ringing in the ears. When I do get a full blown attack of this fullness and pressure I feel like my hearing is impaired but I passed all the tests for that one. I talk loudly which really aggravates my daughter. There are drops you can put in your ears for the earache, like garlic and virgin oil, smells terrible but does feel good. A warm heating pad is my buddy over my ears. And yes, I also take pain meds and they do help the most. It takes getting to a quiet place, take pain meds, use some heat and maybe some drops in your ears to quiet an episode.
I wish there was more that could be done for sufferers like you and me that don't meet the criteria for a true GN or TN dx, being atypical blocks us from having invasive procedures. I have to admit I am not as excited after searching for over a year going from one doctor to another that I would opt to an invasive procedure if offered. The risks of increasing your pain or failure to resolve the pain even if you are true TN or GN are in so many discussions of many sufferers. Yet, there are successes too and I am oh so jealous, but then I read an entry of someone who did fine for some time and it comes back even worse. I hope I have been helpful but honestly when I stopped searching the stress and let downs were gone and I was able to manage my pain better. Sharon
Littlemoth, I am so sorry for all you're going through right now. Will be keeping you in my thoughts.
I have PHN that caused GN. I won't document my whole story, you can read that on my page. I too, have the ringing hissing, constant and irritating. I've seen 3 different ENT's during my diagnostic phases. All agreed with PHN and the GN diagnosis. Testing on my ears showed no abnormalities or injuries but it did show a 'moderate' amount of tinnitus. I suppose I could get something done at some point in time to relieve this but not going to do anything right now...scares me to death, the thought of doing anything to my ears.
My brother however, had the same maddening tinnitus and was prescribed some type of medical unit that decreases the noise over time. I do believe he has been cured at least temporarily. I would track down a good ENT to discuss all this with. I wish you the best of luck. Sorry I couldn't be of more help but at least you know that this is not uncommon for folks with cranial neuralgias...takes the fear out of it at least.
Be sweet to yourself and God Bless!
PeacenLove~Always~Laurel aka shinglesdidit
Hello all:
I too suffered with Tinnitus along with my GN. I have had an MVD, which has put my GN into remission. I still have Tinnitus, and to be honest am not nearly as bothered with it anymore.
The only time it really bothers me is when I try to get to sleep.
The strange thing is that the Tinnitus started just before my GN symptoms began.
Hope you have some pain free moments.
Smash
I do. I hear garbage truck's back up alarms, honking horns like I'm in the middle of a traffic jam in downtown New York at noon, telephones constantly ringing, sirens and lots of other loud non-stop noises. I'm taking 300mg of Lyrica twice a day but I still wake up in the middle of the night hearing alarm bells and can't get back to sleep. God help me if I'm driving and emergency vehicles are using their sirens. I keep hearing them long after they're gone but I can't tell if it's my ear or more emergency vehicles are coming from from any direction. It's confusing and scary and I keep hearing them for hours. I notice that the GN pain in both my inner ear and the horrible outer ear pain that radiates out into my face and head gets worse when the extreme tinnitus starts up.
Gabapentin didn't help the GN or tinnitus at all but Lyrica brings them both down a little. What really helps me is valium. My neurologist prescribes it for my intractable migraines and hemifacial pain and it settles the ear pain down. I can take 5mg up to three times a day for three days and I have to make 30 pills last a full month. I can't drive at all when I take it because I'll nod off for just an instant just sitting and reading the paper but it gives me such relief that I don't care. Sometimes I'll take one at night and it calms my ear pain down and lets me sleep and sometimes I'll take a half of one if the pain is starting to build.
Both my ENT specialist and my neurologist understand the severe tinnitus but aside from the drugs I've mentioned above, there's not much they can do for it. I know someone who just couldn't live with it and he had them destroy his ability to hear in the affected ear. He's much happier only hearing with his other ear than he was with the horrible tinnitus.
I'm sorry I don't have more to offer you.
Karen
I saw a recent post of someone who needed help because her pain was so bad. I'm living proof that this disease can be managed. I am in year 14. I had everything under the moon, shots in the neck; sterotactic radio surgery and MVD... I believe the all failed me. However, I'm able to control my pain with Gabapentin, Tramadol for pain; Evoxac (to keep my mouth wet which in turn keeps you from having dental caries); Trazadone to help me sleep; and the greatest thing that relieved my pain was CLONOPIN 1 mg. 2 x per day. My DUKE Neuropsychiatrist said that CLONOPIN is often prescribed for this disorder. So, I am doing better, but mornings are the best while afternoons tend to get sensitive. I figure that once I decided that I was going to have to LIVE with this that I got my act together, got off large amts of pain pills. 4 years ago and I'm better than ever and still suffering from this disease. I still have intense pain, but meditation, cold pack go a very long way. Does anyone get relief from ice? It numbs the nerves.
I hope this helps someone. Maybe because I had all of those things I am doing better. I noticed that narcotics can make the pain worse.
I would also suggest that you do some research and find a really good neurosurgeon. At DUKE, they seem to really get me.
O, Karen you need to ask a neurologist for CLoNopin. It is just a time-released xanax. Works so well, because valium helps my pain as well.
What was the actual diagnosis, what are they doing surgery wise?
weirddiagnosis2013 said:
Yes! Typical of GN..I'm seeing a surgeon this month to get it taken care of...I've onlybeen living this way since july, and I'm
Done. He trained at UPMC, so I'm very lucky to have found him. After getting so sick on tegretol, I'm ready for surgery.
Can this compression always be seen by an MRI, Angiogram or CTScan, because mine all came back normal and I am so upset that they still cant find anything...
Richard A. "Red" Lawhern said:
The deep pain in your ear might be nervus intermedius or geniculate neuralgia associated with a vascular compression of a nerve that branches between two other cranial nerves (possibly C-7 and 8, but I don't precisely recall at this moment). The hissing sound is indeed tinnitus, and might not be directly associated with any of your neuralgia issues. Many people have tinnitus in their later years (I'm 70 and I've had noticeable tinnitus for at least eight years). There are a few papers in medical literature indicating that vascular decompression of a ganglion associated with the auditory nerve can be helpful in some people. I haven't seen consistently strong outcomes stats.
Suggest you look through the "Find a Doctor" sub-tab under our Doctors menu tab, for a neurosurgeon somewhere close to you.
Regards Red
I am going through the EXACT same things as you. All my tests have come back normal. i have fought this for 6 long years with a million doctors, have you ever found a diagnosis?
littlemoth said:
Hello Sharon, and thanks for your input. Yes, I have seen countless Dr.s' including ENT, Neurologist, Neurosurgeons, and everyone in between. I have had many scans but nothing abnormal shows, so I am not offered any surgery. I have had botox injections, anti-inflammatory injections, acupuncture etc. My symptoms started with a head pain on left side at night after work and then my ear started itching deep inside like something was in it. Then it started to ring on affected side and now the louder it rings the more pain (a gnawing feeling) like a toothache I feel. When I take a high dose of pain meds the pain subsides and the ringing subsides. I suffer alone because I look fine on the outside so it's difficult for anyone to understand my suffering. If I don't show too much emotion at the dr.s office, they don't take me seriously and if I over react they think I'm unstable. So, I am at a loss. I've been to dr.s with great credentials and they offer me nothing.What's a girl to do?
Renee -- it is quite common for compressions to be missed in MRI of even the highest resolution and contrast. That is why diagnosis is generally made from the pattern of pain and response to medications. MRI is useful for eliminating things like arterio-venous malformations, benign tumors, cysts, and other structures that could be pressing on nerves, but it doesn't catch all of the vascular compressions and it shouldn't be considered the end-all and be-all of diagnosis.
Regards and best,
Red
Red, that is so true. Do they call this a clinical dx.? Like I responded to tegretol but 2 months on it the side effects got to me. I also have a history of a total remission. And yes, negative MRI's, lots of tests to rule out hearing loss. This thing is a benign condition and I still think the only way to find out if you have a compression not on MRI is to open and look for it.....all the surgeons I saw do not do that. And being atypical the risk of becoming worse with so many procedures other than surgery I was strongly advised not to do. One surgeon said he did not want to make me worse and this also applies to those who have a positive MRI, there are risks. If I were positive I would try surgery.
I am using a electrical stimulation pen offered on this site for bad flare ups. I am in 6 to 10's with nerve injury from post op lumbar decompression and lumbar-pelvic hardware stabilization. My pain scale chart has changed since this surgery. I now give my ATN and GN 6's instead of 8's, tolerable but annoying. My back and leg pain won't let me sit, stand or walk so the ATN and atypical GN gets a little rough sometimes but all my meds for pain have been increased which helps. But I will say this pen, if I can find the page it was recommended on I will post there, was extremely helpful. I do the sites for TN, along the jaw line, along the eyebrow and on the side of the nostril, that area is sensitive. The stimulation touches the pain especially along the jaw line, the whole side of my face that hurts gets a nice vibrating stimulation.
My neuro does have me on a combination of meds for the ATN and GN and I do get botox once every 3 months for my neck and scalp. I am on low doses of baclofen, amytripiline and gabapentin which are also helpful for the nerve pain from the nerve injury from back surgery.
It is interesting how you perceive pain. My severe sciatica even at rest takes my mind off the ATN. Sharon
I have the same thing going on with my ear. I am going to UPMC this month. What did they do for you there and who did you see?
weirddiagnosis2013 said:
Yes! Typical of GN..I'm seeing a surgeon this month to get it taken care of...I've onlybeen living this way since july, and I'm
Done. He trained at UPMC, so I'm very lucky to have found him. After getting so sick on tegretol, I'm ready for surgery.