I am so happy to be a member here. I was diagnosed last week and only received a prescription for Neurontin this afternoon. It just all seems so hopeless. The pain started about 4 weeks ago and gets bad then lessens.
Also, my ears are ringing. Sounds like a lot of crickets. Sometimes louder than others. Can anyone give me advice? I am worried about getting through the work day!
Kathy2852
Thanks for your reply. I will be taking the meds 2 times a day, and I hadn’t realized that it is so important to be exactly 12 hours apart. I think I will follow your lead and set the alarm on my phone. I will take the first pill tonight and I can’t wait to start! I have also found that Xanax helps a bit. The ear ringing is driving me crazy, though.
Thank you. I will read it.
Hello, Kathy! Welcome! I am a new comer to this site as of yesterday. You've found the right place. I know you will find support here. I also recommend reading the page Red suggested. It's a great place to start for information.
I saw your post and immediately wanted to respond. I am experiencing mostly pain inside my right ear. I experience the ringing you describing off and on. When the ringing happens, I just have to close my eyes and bow my head it is so high pitched it makes me completely unresponsive to others. Someone would have to push me out of the way if a bus was coming. I was 'generally' diagnosed last week myself. I say 'generally' because he diagnosed me with TN but didn't exactly say with which kind. I didn't even know there were different kinds until I signed up here.
I've been working with him since the very end of July and since then our report has been good. I'm assuming at our next appointment in 4 weeks he'll tell me which one specifically he thinks I have. He said he wants to see how I'm doing after taking Tegretol for 4 weeks. It is horrible, non-stop ear pain deep inside the ear. It feels like an ice pick. It can be maddening at times. I also have intermittent pain along side my bottom right jaw and behind my right ear. The pain is exacerbated by chewing or talking. When I started looking into the Face Pain Info Page I found the term: Geniculate Neuralgia. Based on what you are describing, you may find looking that up interesting. It may not be your type but let me tell you, when I wiki'd it, it looked like I wrote the page myself.
I don't mean to be so chatty, I am just very excited to converse with others and research with others about this awful malady. I hope you find the answers and support you seek on your journey.
Best Regards,
RH
Glad we could help you get started on the research grounding, Rockhopper. One suggestion: try looking up "Tinnitis". It's a different disorder than TN, though it can sometimes involve compression of a nerve ganglion (I presently forget which one).
Regards, Red
Thanks so much for your repsonse! I have started reading the Face Pain Info. A lot to get through but so helpful. I don't know exactly which kind of neuralgia I have, either. I get pain from my ear, jaw, sinus, cheeks, down the outside of my neck, a numbness on the inside of my throat and sometimes in my chest. When it first hit it was severe and all at once at 2:30 am and I thought I might be having a heart attack! I would have gone to the hospital, but I figured insurance wouldn't cover the visit if I wasn't having a heart attack, so I didn't go.
My doctor put me on Neurontin and I am hoping it helps. My ear ringing is different than yours. It sounds like a million crickets are right outside my ear! The volume changes. It went away for a few days, but now it is back constantly. My ENT wants to do a hearing test. She said sometimes the ringing can occur if you have a sudden hearing loss. I don't think that is it, but I will get the test, anyway. You are the only person who has mentioned ear ringing.
Thanks again for taking the time to write. I hope we are both feeliong better soon!
Rockhopper said:
Hello, Kathy! Welcome! I am a new comer to this site as of yesterday. You've found the right place. I know you will find support here. I also recommend reading the page Red suggested. It's a great place to start for information.
I saw your post and immediately wanted to respond. I am experiencing mostly pain inside my right ear. I experience the ringing you describing off and on. When the ringing happens, I just have to close my eyes and bow my head it is so high pitched it makes me completely unresponsive to others. Someone would have to push me out of the way if a bus was coming. I was 'generally' diagnosed last week myself. I say 'generally' because he diagnosed me with TN but didn't exactly say with which kind. I didn't even know there were different kinds until I signed up here.
I've been working with him since the very end of July and since then our report has been good. I'm assuming at our next appointment in 4 weeks he'll tell me which one specifically he thinks I have. He said he wants to see how I'm doing after taking Tegretol for 4 weeks. It is horrible, non-stop ear pain deep inside the ear. It feels like an ice pick. It can be maddening at times. I also have intermittent pain along side my bottom right jaw and behind my right ear. The pain is exacerbated by chewing or talking. When I started looking into the Face Pain Info Page I found the term: Geniculate Neuralgia. Based on what you are describing, you may find looking that up interesting. It may not be your type but let me tell you, when I wiki'd it, it looked like I wrote the page myself.
I don't mean to be so chatty, I am just very excited to converse with others and research with others about this awful malady. I hope you find the answers and support you seek on your journey.
Best Regards,
RH
Kathy, the pattern of pain you report can sometimes be associated with neuropathy or neuralgia in multiple nerves. Three branches of the trigeminal nerve serve tactile sensation in the face from the line of the jaw to the top of your head, forward of a curving line which comes down just behind the ear. The geniculate nerve may be involved if you have deep ice-pic pain IN the ear. The glossopharyngeal nerve serves the palate, throat, and areas of the neck up to the ear. The Vagus nerve, on the other hand, it involved in regulating heartbeat and blood pressure. All of these nerves emerge from the brain stem below the skull, in a space less than two inches long.
About the crickets: talk to your doc about Tinnitis. One of the causes can be arterial or venous compression of a nerve ganglion somewhat remote from the brain stem.
Regards and best,
Red
Hey Kathy, I do have what I would call a high pithced ringing tone?? It comes and goes tho. It can be annoying… I feel for you dear. Min
Kathy,
I recommend that you do your best to find yourself a neurologist who specializes in, not just treats, TN.
The more acquainted your doctor is with TN, the better.
We're all on your side here.
Peace
craig
HI, Kathy,
I would also recommended finding a Dr. who specializes in TN. I stayed on the generic to tegretol for years until I found a Neurosurgeon who specialized in trigeminal neuralgia and I had MVD surgery , and have been pain free since. It is better to have surgery before waiting 3 years if it is TN. Not sure about the ear problem. My sister as ATN and she as problems with her ears itching deep inside them and some ringing in them, fortunately, I never experienced this, I just had Typical TN pain, which was the electrical shock in the middle of my face. Good Luck with the Neurontin, if it doesn't work you might try tegretol, a lot of people take it for TN pain.
Craig,
That does sound like a good idea. I was in so much pain that I just went online and found a local neurologist who had hours after work. I definitely can't keep taking off work for doctor appointments. That sick time burns up fast!
At any rate, I did speak to my ENT and she knew the doc I am using and spoke well of him. It is sometimes difficutl to understant his accent. He is Chinese. I live in Edison, NJ and the area has a lot of Indian, chinese and general Middle Eastern people. While I love the area and the diversity, sometimes the accents are difficult!
I have and MRI and MRA scheduled for next Saturday and I have started the generic of Neurontin. I started Thursdsay night and Friday I was pain free with ust a little numbness. Pretty good today, too. A little numbness and a little ache in my ear, but otherwise pretty good so far. I am waiting to see what happens when I go back to work on Monday. My sister and I took off yesterday and spent the day at the beach so I was very relaxed! The medicine is making me tired, but hopefully I will get used to that.
Sometimes I think that stress brings on the pain. Is it possible that muscles tighten when stressed and press on the nerve? Just a thought. That is why I am waiting to go back to work to see what happens. Plenty of stress there! At any rate, now that I am started with things I will have the time to look around for another neurologist if this one doesn't seem right. How would you suggest I go about finding one?
Thanks for your help!
Kathy
Kathy,
I recommend that you do your best to find yourself a neurologist who specializes in, not just treats, TN.
The more acquainted your doctor is with TN, the better.
We're all on your side here.
Peace
craig
It is known that stress is frequently a predisposing agent in chronic pain and illness. The mechanism is likely more subtle than direct muscular contact with the nerve. Stress causes blood changes which include generation of toxic byproducts that may remain in the circulation system for long periods.
The best way to find a good doctor is by the recommendation of someone who has been his or her patient. In New Jersey, the TN Association lists the following telephone support contacts. One of them may know of a neurologist near you:
| Bogota |
Joe Shuler
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| Mount Holly |
Lisa Dornisch
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| Ocean County | John Lanzer (732) ■■■■■■■■ or (201) ■■■■■■■■ ■■■■■■■■■■■■■■ Josephine Miello |
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| Westwood |
Jerry Newman
Regards, Red
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Hello Kathy. My husband was diagnosed about three weeks ago. He is on the same med as you. So far it has helped but has not taken all the pain away. You will find friends here. It has helped me to understand what my husband is going thru. I hope the best for you.
Sherry