Ear Pain (Geniculate Neuralgia)

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Comment by joylee1962 13 hours ago

Wow, It is amazing what I learn here. Doctors seem to be pretty useless. So I am not crazy. I am not the only one affected by weather change. I just thought that couldn't really be. When ever the pressure changes to high and that also means sunnier weather it seems to cause an attack. Living in Alaska, especially Juneau. where it rains a lot and winter m 9 months long. I look forward to a nice day, but I do also spend a lot of Them on my couch with a heating pad on my face and only get to enjoy the sun through the windows. I don't bother saying anything to my doctor, she always act's like I am crazy if I say something like that. Example, It's a proven fact, that was pointed out To me by an M.S. Doc that I have not had a cold or flue since the MS began. It is the only up side to the disease. But when d made a joke about it to The Do, at least their is one good thing d never get a cold. She said I was wrong.

 Any way I am sad you are having bad days. Just try to remember there is a time when its over to be grateful for. No One appreciates Good days like those who suffer.

Have Good Days Soon!

Comment by Sheila W. 13 hours ago

Hi Mandie;

    I have sure been where you are. I was taken off anti-epileptic meds due to liver problems too. I have had to cancel many things due to noise, and have to take foamie earplugs in my purse to put in that one ear in case of any random noise that will make the pain worse. I know society makes you feel bad if you take pain meds, but it's not. If you take your medicine responsibly,  you are not a druggie. You are a person with severe pain, which is what those meds are made for. They are to help you function and get back into life again. I know that doctors even treat people with pain like druggies, but if you are responsible with the medicine, you have nothing to be ashamed of. I get so angry when I see someone abusing pain meds, beceause it's due to them that people who are really suffering get such a bad stigma attached to them. I was so busy all the time too. Hyperactive, and ready to take on the world. This pain is unlike any other severe pain I have dealt with through 18 surgeries and lupus destroying all my organs. This pain just sidelines you! About 3 weeks ago, I started taking vitamin B complex sublingual (dissolvable tablets or liquid that goes under your tongue, and sinks into the blood vessels there.) It has cut my ear pain in half! And I have more time without any pain at all. Vitamin B heals nerve endings and vitamin D also is helping, it works on healing the whole central nervous system, so you feel less pain. Vitamin D can even prevent M.S., and countries that are farther North where people get less sun (vitamin D in sunshine), there are more cases of M.S. and other neuromuscular diseases than the rest of the world combined, so when people in those areas started taking vitamin D regularly, all nerve pain issues and M.S. cases cut down drastically.

  There are a lot of people who wonder if they can just be imagining this, and they beat themselves up about it, which doesn't help a bit. THIS IS VERY REAL! There is a physical cause, or else the Dr. would not be giving you medicine that works for physical symptoms, he'd be giving you depression or anti-psychotic meds.

     The best therapy is to combine meds. If you have to lower your anti-epileptic meds, then get a muscle relaxant, and  I have found that half of an anxiety pill (bromazepam) stops the nerve from hurting so much. It's not for anxiety, it actually works on the nerve to calm it down.

    Don't give up. You can have times of remission, even years, and there are remedies that can help this get better. The vitamin B and D have sure helped me. I still have TN but the Geniculate Neuralgia has gotten so much better. I also find that using a clean sock with rice in it, and a knot tied in it, then heated in the microwave and put on that ear, helps, and when I'm out in public i have those little hand warmers you can buy that you can put in pocket or purse, and when the pain comes, you can shake and break those and put it against your face, and it's barely noticeable.

Hang in there. This CAN get better Mandie!
Sheila

Comment by Mandie Ekstrom 14 hours ago

The ear pain just won't stop. It started again when we were changing meds around since my liver function is horrible on tegretol. THat was two weeks of hell and I am back on it since it is the only thing that works. I feel like a junkie asking for vicodin. I found they were giving me the lowest dose possible, when they gave me a stronger dose it does provide some relief, but not all together.

I cancelled my MRI today. The noise would have just been unbearable. Does anyone else feal like maybe it is in their head and they are just going crazy?

I used to be so active. Doing crossfit, competing in races like the Warrior Dash, working full time, and in school full time. All of that is gone and some days it's a struggle just to make it through work, get out of bed, shower, wash my hair, or eat.

Comment by Cheryl on May 12, 2012 at 8:25pm

Hi Jean.

Your question about the metallic taste in your mouth is very common. I asked my son who is an ENT doc and he said that the ear and the back of the tongue/pharynx are referal areas. I forwarded him your post and that is all he said in his return email to me. Sorry I can't give you any more information; but I hope that helps with your question.

Comment by Lee Ann on May 10, 2012 at 1:06pm

Thanks so much, Sheila. I'll probably screw it up next time. Thanks for the hugs. Sorry you are having a bad day, too. You asked if I've noticed any triggers. Waking up is a big one.  :) Wind, fluorescent light, the sound of motors, vibrations, my own voice. I'm on Tegretol, Gabapentin, Codeine. I will try sublingual vitamin B. I'm just sooooo tired. Hope your day gets better.

Comment by Sheila W. on May 10, 2012 at 12:40pm

Lee Ann, it's not "wrong" at all! PLEASE REACH OUT! It's just easier to reply to you when you type it here, You can get more replies if you type it here. I'm so sorry you are suffering so much today. ((soft hugs)). Your last message was posted here, so you have the hang of it now.

Comment by Lee Ann on May 10, 2012 at 11:54am

Hey there,

Didn't realize it was wrong to send my message to whomever...I'll never get the hang of where and whom to send it. It's just such a bad day, I had to reach out. But, if it's not the right way to go, I won't do it again. Thanks.

Comment by Sheila W. on May 10, 2012 at 11:38am

Lee Ann,

    I got an email from you, called "Bad Day Coming". I guess it was sent to the whole group. I invite you to use the empty reply boxes on this page to type your comments so people can reply to it and readers just coming in will know what our comments are referring to. I understand the feeling of waking up in worsened pain and knowing this will be a tough day. Today is one of those days for me too. Have you discovered any triggers? Rainy days? Barometric pressure changes? Fast weather changes? Sleeping on that sde of your head? Anything? I started taking sublingual (under the tongue) vitamn b complex liquid or tablets, and it has lowered the pain level enough to make it bearable...how do I describe this...the more I take it, the more time during the day it seems to help. I hope soon it will be at a bearable level 24 hours. I hope it can help someone else. I can give anyone who wants it, a code to get $5 off the product. Here's the website where I get it. http://bit.ly/IuOJjy. A warm rice pack or those disposable handwarmers also help. The handwarmers are great for if it hits when you're out in public. You have this very thin thing you can carry in your pocket, that's not too obvious when you use it, and its an instant heat source.

From a fellow hurtin' puppy,

Sheila 

Comment by Min on May 9, 2012 at 9:05pm

Thanks Sheilaa :)

Comment by Sheila W. on May 9, 2012 at 1:19pm

Min, I'm so sorry about your worsening problems. I have just started on sublingual (under the tongue) vitamin B complex. It sinks into the blood vessels under the tongue. It has helped my TN and GN quite a bit and I am so grateful. If you are able to touch your face without pain, sometimes massaging the muscle right on the jaw joint brings some relief. I use a prescription pain cream with no smell that acts like a muscle relaxant, anti-inflammatory and is  slightly numbing. Voltaren 10% cream. You can also buy Voltaren Emulgel, but it's only 1.16%. Most people says it does help them, but I've never tried it.

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