The pain is the thing

Hi everyone. I am a new member searching for some answers. I went to my doctor last December with an excruciating ear ache that was just more pain than I knew how to handle. I felt fine otherwise. My PC physician didn’t see anything in my ear in terms of infection or fluids (but I think he could tell I was in pain after I hit the ceiling as he put the otoscope in to take a look) and prescribed antibiotics,musinex and pain meds.

Weeks went by and the pain continued to come and go. The only thing which seemed to offer some relief, short lived as it was, was laying with my ear on a heating pad. My PCP sent me to an ENT who looked in my ear with a longer and much more painful otoscope and again found nothing to explain the pain. He prescribed a broader spectrum antibiotic and Vicodin for the pain.

After a few weeks the pain went away and seemed to only reoccur for a day or so every couple months. I could never figure out anything that could be a cause like a sore throat or cold or anything. Now flash forward to a few weeks ago and the pain is back. It is constant but with bursts of mind blowing, ice pick in the ear, shake me to the bone, I can’t take it any more pain. I am on the road for my sales job in hotels most nights and am eating Motrin like candy. Driving from Buffalo to Boston with this pain is a new level of hell. I went back today to my PCP who mentioned the possibility of glossopharyngeal or trigeminal neuralgia. He put me back on augmentin and Vicodin and said if it isn’t better next week to call and he would look at treatments for neuralgia.

Whew… Sorry for the novel (just call me Tolstoy) but I wanted to give you a glimpse of my story and to see if this fits with a GPN diagnosis. I don’t have any throat or tonsil pain, only my left ear. It hurts to touch it, behind it or below it. Any feedback would be so welcome. Thanks so much for listening.

These cranial nerve disorders can take many forms and it sounds like your symptoms fit with one of them.. GPN or Trigeminal. Ask your doctor about Tegretol--that worked for me. Doesn't eliminate the pain but makes it tolerable and the attacks less frequent. It will wipe you out at first but you'll get used to it. I wouldn't be here if not for Tegretol. I've seen from this site that Lyrica works for some. We tried Lyriac for me but it didn't work as well.

MRI might be in order to rule ot other problems. If GPN is the problem, there is surgery...lots of info on the discussions.

Hang in there.

I would see a neurologist and a neurosurgeon. 2 opinions about what it is and what to do. Tegretol may help the pain. It helps mine partly. I have elected to go for the surgical route. Good luck!

A few more things…lol, sorry. Typically with GPN, TN, and Geniculate Neuralgia the pain will get worse over time, you will need more and more meds to help ease the pain (nothing really makes it go away), and you life is greatly affected by this. This is why I am an advocate for this surgery. I have been pain free since having it and feel awesome. I feel surgery should be a option in the beginning to avoid years of hell. As a person gets older they are more of a surgical risk also…just something to think about.

Thanks so much for sharing Ricknot!

Laura, what was your recovery like?

Laura said:

A few more things.......lol, sorry. Typically with GPN, TN, and Geniculate Neuralgia the pain will get worse over time, you will need more and more meds to help ease the pain (nothing really makes it go away), and you life is greatly affected by this. This is why I am an advocate for this surgery. I have been pain free since having it and feel awesome. I feel surgery should be a option in the beginning to avoid years of hell. As a person gets older they are more of a surgical risk also...just something to think about.

Thanks all. I appreciate all the suggestions and the support. It’s been about 4 weeks of pretty much constant pain this go round and I can’t imagine living life like this so i will be seeingevery doctor i can. It is so nice to have found a group online who can understand how debilitating this pain can be and being told over and over there is nothing wrong in your ear.



Ricknot said:
Thanks all. I appreciate all the suggestions and the support. It's been about 4 weeks of pretty much constant pain this go round and I can't imagine living life like this so i will be seeingevery doctor i can. It is so nice to have found a group online who can understand how debilitating this pain can be and being told over and over there is nothing wrong in your ear.

Your story sounds a lot like mine. Make sure you see a neurologist and insist on a MRI,so it’s diagnosed. Gabapentin worked for me and pain medication I started just recently. Mine has gotten worse so I’m going to have surgery on Tuesday October 23! I’m so sorry youre going through this! Let me know if you have any questions.

In response to Vicdoc:
My recovery was fine. No real problems. I had hot flashes and cold flashes if I moved during a hot flash…that lasted 2 days on and off. Was from the swelling in the brain. I also vomited a couple of times in the hospital. They give you nausea and pain meds all the time. I was weak and couldn’t stand the thought of looking at a tv or my phone for 2 days…pretty much after two days this neuro stuff was much better and that’s when I left the hospital. Turning my head was rough due to the soreness and swelling. Oh and I felt like my head was in underwater…difficult to hear out of my left ear and really loud tinnitus. That lasted a few weeks and is gone now…all issues are gone now. The surgery was sooooo worth it! The incision is a inch behind my ear. Only a little bit of my hair was shaved. I can feel the plate they put in, but to look at my head you can’t tell. I am so glad I did it.

Thank you. Did the GPN/TN pain go away immediately? When did you return to work? I already have pretty severe tinnitus, I suppose it could be worse.

I had GPN and Geniculate Neuralgia. I woke up in recovery with the pain gone. It had been horrendous going into surgery. They found 2 large vessels laying on my 9th cranial nerve and moved them/got rid of them. They decompressed the 5th, 9th, and 10th cranial nerves and cut the nervous intermedius. I have had not even a hint of the pain since surgery. I am out of work until November 1st, but could have gone back the week before if I wanted to. As a matter of fact I feel well enough to go back now, but am enjoying a little extra time off feeling good. I figure I deserve it after suffering through work with that pain for 12 years.

Thanks for sharing! I think I am headed down the same road. My GPN is back for two months now, but it is different. This time it hasn’t gotten worse that a rubber band pop but it’s not at the same place all the time. I also felt pain for the first time touching my left ear in a certain spot. The shock went from my throat clear down to my fingers on my right hand. I am going yo Mayo clinic in November and I can’t wait!! I take 4800 mg gabepentin and 600 oxycarbonzapin daily. The world is so foggy, I am ready to get my life back! hanks again for sharing. It means so much to find others who are going through the same thing!

My pain would often change. Sometimes left tonsil area, sometimes left throat, sometimes ear…it could go from one to the other in a hour or be in one spot all the time. Sometimes super severe spasms lasting a minute. Sometimes just little pangs like a nerve being plucked. When it was little pangs I knew if I did the wrong thing…yell, laugh, sneeze, cough, swallow, or just about anything it could set off a severe attack. Sometimes an episode could last a day and sometimes 6 months. In the beginning it would go away (remission) for a long time. Once for about a year, but as time went on it was here more than gone. It really makes no sense, but that’s the way this works.

Ricknot...So sorry to hear of your suffering and I pray that you'll soon find relief. I myself do not have GPN, but I have watched it turn my mother's life into a living hell. Her experience has been the same as other's here, in that the pain became more severe with each episode. Her father suffered with TN for the last 20 years of his life. His was managed with Tegretol and several nerve block procedures. Unfortunately, my mother had an adverse reaction to Tegretol and no other medication relieved her pain.

I've read the experiences here about the MVD surgery and the success rate. I just wanted to throw out another possible alternative to you, if it should turn out that you're not a candidate for the surgery. My mother had a Gamma Knife procedure 3 weeks ago at the University Medical Hospital in Augusta, Georgia. Within a few days she got her voice back. (She had severe pain inside her throat and lost her voice.) Now her pain is much decreased and she is on no pain meds. She still gets the pain from time to time, but it is much less severe and she can stop the pain if she lies on her side and thus takes the pressure off of the nerve. It is out hope that the pain may go away completely with a few more weeks. The Gamma Knife is a radiation treatement and so it takes time for the full effect. I will tell you that this is new technology for treating GPN. (My mother was only the second GPN patient in Augusta to recieve the Gamma Knife treatment.) If it turns out that you have TN...then you may have better luck with the Gamma Knife. They said that they use it to treat TN quite a lot. Best of luck to you for a full recovery and relief of your pain.

Welcome to the forum. The people here are very supportive. I understand the ice picks, shake you to the bone, can't stand it any longer pain. I had have had extensive tests and have been diagnosed with GPN. Usually an MRI with and without contrast will show if there is a blood vessel pressing on the nerve. Wish I had done this immediately. Some have relieve from the typical neuralgia pain meds. Although, I can not take them without extreme side effects. Best wishes on getting a diagnosis and relief.

To Vicdoc…I hope your surgery was a huge success today! I have been thinking about you. Please let us know. Expect the fluid in your head to make it seem like you can’t hear on one side. after a couple of days that will start to get better, but will be bothersome for a few weeks. Hope all is well!!!

Thank you for your thoughts, Laura, my surgery is on Thursday... I can't wait...

Laura said:

To Vicdoc.....I hope your surgery was a huge success today! I have been thinking about you. Please let us know. Expect the fluid in your head to make it seem like you can't hear on one side. after a couple of days that will start to get better, but will be bothersome for a few weeks. Hope all is well!!!!

I have the same exact problem you have ask your doctor if this is what you have.Nervus intermedius (geniculate) neuralgia I'm going nuts with it tonight! "To the person with the sharp ear pain check out this sight

http://www.uptodate.com/contents/nervus-intermedius-geniculate-neuralgia

http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/geniculate_neuralgia.html

Just a quick update everyone and thank you all for your assistance and support. My PC physician, who is the one who brought up neuralgia as a possible cause of my pain, has put me on Tegretol as of today. He is also referring me to a neurologist in order to diagnose which nerve(s) are possibly involved. The pain continues to come and go during these events and it is amazing to me just how good it feels when the pain isn’t there. I had an “attack” yesterday which was really bad and actually made it hard to concentrate on anything. Thanks again!!!