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Living With Facial Pain

Hello there

#1

Hello - first post here. I have been having inner ear pain that lasts a fraction of a second, comes and goes in episodes anywhere from 1 pain a day to a few times a day, to several days with no occurrence. It’s purely episodic and no rhyme or reason. It’s been going on for the past 6 months wherein I was originally treated by ENT thinking it was an ear infection. Ear is perfectly normal. Even clear CT scan so i could rest assure. Pain still occurring so went to dentist who said it was cavity on top right wisdom tooth. Proceeded to remove all 4 wisdom teeth- pain still came back. Was referred to Oral facial Dr as the ENT thought it might be TMJ related. He couldn’t find anything as I show no jaw pain symptoms-only ear pain. In researching, I have come across Geniculate Neuralgia and it terrifies me to think this may be my condition? Any help or guidance would be greatly appreciated. I made a neuro appointment but won’t be seen for 1 month.

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#2

Hi lvguy, my current pain is ATN (dental) but I know the kind of pain you are talking about–I had it years ago and can’t recall the circumstance. I don’t know much about GN, but in general I have some suggestions.

Start keeping a journal of your days, occurrences of pain (rate from 1 to 10) along with your diet, how you slept, medicines, activities, etc…You could very well find some clues as to what kicks it up, and which days are better. This could help you control it a bit more.

Also take care of yourself as well as possible. Eat well, cut out drinking for now, take vitamin B supplements esp B12, get plenty of sleep. I’ve been living like a monk and it is paying off in much reduced pain. Hope you get some answers and find ways to manage the pain!

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#3

My symptoms started the same way. Over the years it intensified to several times a week for hours at a time. MRI was read by one neurosurgeon as GPN, two others felt it was inconclusive. Was referred to a head/neck pain specialist who believes it is GN. My treatment includes carbamazepine, Nyloxin oral spray which for me instantly stops the flareup. This product is over the counter, I buy it on Amazon, it is cobra venom. Dr. doesn’t know why it works, but 50% of his patients find relief using it. I also go in for nerve block injections to areas on my face, neck and ear. Also ask for Xray to rule out Eagle syndrome. Mine is often set off by cold air and stress. Good luck, for many of us it has been a years long process for answers, don’t give up and stay proactive in finding a Doctor that will take your symptoms seriously and work to find what treatment plan works for you.

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#4

First IVGuy, in my opinion, get a new dentist. Why would you remove all four wisdom teeth because of a cavity in one? For me, that can’t be justified.

Second, follow ziggy’s advice! That journal is going to be critically important for your neuro appointment, diagnosis of facial pain conditions are basically history-based in nature, there’s no definitive test. Now, that said, you do need to have a MRI. This will rule out big scary things like tumors and might find compression of the nerve (one of the very few things that can actually be tested).

Supplements for vitamin B and D are suggested for facial pain as both support healthy nerves and it is known that facial pain is often nerve base. Even better, both B and D are water soluble vitamins so you can’t overdose on them and hurt yourself. You get too much of either of those in your system and you’ll be spending extra time in the bathroom flushing your system, but you won’t do any damage.

In terms of sleep, try stabilizing your sleep pattern. Not only get enough sleep, but get up at the same time every day. For some reason getting up at the same time every day helps neurological conditions in general, specifically migraines, which are being to be thought to have a connection to nerve pain. It’s not a very good connection to make right now, and it’s not medically official, but getting up at the same time every day is easy to do and won’t hurt anyway and it could help.

Please keep us posted on your appointment, we’ve all been there and will be thinking about you.

azurelle

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#5

Thank you Ziggy for the reply. I will plan on keeping a journal with recorded episodes from now on. I also ordered some B12 off amazon.

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#6

Thanks Cali for the reply! I will definitely check out those products on Amazon! Will definitely ask about Eagle syndrome also.

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#7

Modsupport - your right, getting all 4 wisdom teeth removed at once was a bit overkill plus being awake for it was no fun :frowning: As far as the sleep, I will definitely try stabilizing my sleep pattern. I already take 5,000 iu daily of vitamin D3, I guess I can up that and I plan on starting B12 as well. I was supposed to have an MRI done before the end of year but my insurance declined it because the Dr. didn’t order PT first. So they made me go for a PT consultation which indicated I have perfect neck mobility and posture, so now I will most likely get the MRI in early 2019 (was hoping for 2018 because we had already met our deductible but such is life!)

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#8

You’re welcome Ivguy0612. The carbamazepine is rx only but the cobra venom is available from nyloxin.com or amazon. If you decide to try, get the oral spray not the roll on or gel. It works best for nerve pain systemically. No side effects, and for me amazing results. Most Drs. have not heard of it though. Good luck!

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#9

IVguy, having worked in the American insurance industry in various way for the past 25+ years I can tell you you shouldn’t need PT for a brain MRI, that makes no sense. The fact that it happened tells me that the wrong diagnosis code (ICD-10 Code) was used on the MRI request.

Have your neuro request the MRI. That will stop with PT issue and will also get the correct diagnosis code on file for you. Examples of possible codes include the following examples:

G50.0 - Trigeminal neuralgia
G51.1 - Geniculate ganglionitis
B02.21 - Postherpetic geniculate ganglionitis
G50.1 - Atypical facial pain

azurelle

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#10

Thanks for the MRI advice, good to know!

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#11

Hi, me again. I had an appt. with a neck and spine specialist ( I made this appt. in addition to my neurologist which isn’t until end of Jan) and he ordered me an MRI for tomorrow evening. The MRI will be of the C2 nerve root/cervical spine. I didn’t find out the MRI focal point until after I scheduled the MRI. From researching, I feel like my symptoms mostly align with GN (unilateral ear pain only), which would be the 5,9th, and 10th nerves. It seems to me that this C2 nerve MRI will not pick up the 5,9,10th nerves. Any suggestions? I do not want to visit the neurologist at the end of the month only for him/her to say they need to order another MRI for the 5,9,10th nerves (and have to pay for another MRI)!
Thanks

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#12

Call the doc who put in the order and ask to expand the MRI to include what you’re interested in. Even explain that you’re going to nuero at the end of the month and want to have images available. It should be easy enough to change the order, the trick is, once again, going to be making sure the Dx codes match to get correct coverage.

You could even call the nuero office, tell them what you’re doing, and ask what they would want to see on the image you’re already scheduled to get. There’s nothing wrong with cooridnating between doctors like that! Be sure to advise the neuro you understand there’s in Dx at this point but since you’re coming in in a few weeks, what would the nuero find the most helpful via MRI and the assumed issue for which you’re being seen.

azurelle

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#13

Certainly sound like GN or GPN, such I have. My ear pain symptoms are identical to yours, although, I also have “shocks” under my tongue on the other side. Yep, I’m bilateral! Triggered by a rough endoscopy. Scans, too, are inconclusive for me. I was in remission for two years only to have a flare up this month from upper respiratory bug that had awful cough with it. Going back on trileptal now.
So sorry.

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