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Old 01-29-2004, 09:25 AM   #1
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Facial/Trigeminal nerve pain

Michelle,

You asked for info on the three branches of the trigeminal nerve. It is hard to know what websites can be posted. There are three branches the opthalmic, the maxillary and the mandibular. My mandibular is affected.
Quite honestly, when I looked back at my notes I did not see much about ear pain and this nerve though. My doctor did point to the front of my ear as the main branch of this nerve that's why I thought of it and ear pain. Hmmm... sorry this has me confused. I'll copy in some info my notes.

"Neuralgia is a severe pain that occurs along a nerve. The pain may be limited to one part of the nerve or it may extend a long the nerve's branches. It may occur as repeated stabs of pain in the teeth, sinuses, eyes face, tongue or throat. Neuralgia occurs most frequently in two cranial nerves. One nerve, the trigeminal has three branches that enter the eyes, face, sinuses, and teeth. The other, the glossopharyngeal, leads to the back of the tongue and throat."

Patients can localize their pain precisely. The pain is not confined exclusively to one of the 3 divisions of the nerve but more commonly runs along the line dividing either the mandibular and maxillary nerves or the mandibular and ophthalmic portions of the nerve.
Of patients, 60% complain of lancinating pain shooting from the corner of the mouth to the angle of the jaw.
Jolts of pain from the upper lip or canine teeth to the eye and eyebrow, sparing the orbit itself, are experienced by 30% of patients. This distribution falls between the division of the first and second portions of the nerve.
According to Patten, less than 5% of patients experience ophthalmic branch involvement.
Strictly unilateral, the disorder affects the right side of the face 5 times more frequently than the left.

"pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs. Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides."

Below is a website that shows a diagram of the nerve:
[url]http://www.brainandspine.org.uk/pdf/face_pain.pdf[/url]

I've seen better ones but don't know it I can post them. The above one has no advertising so I assume it is okay.

My diagnosis from my neurologist is trigeminal neuralgia with secondary TMJD. Perhaps yours is not that. Yours may be more of a nerve damage, scar tissue or something from your surgery. I am just guessing. What does your neurologist say?

On your question, what do I say to people who ask how I am. I am stoic in my pain. Embarassed by it. Therefore I rarely discuss it anymore with anyone. Sometimes my sisters (who live in a different state) will ask over the phone specifically whether I am better and I talk with them a little bit about it. With my husband, I just basically told him it is always there and he'll be the first to know when it is gone. He asks when I go to the doctor what he said and I tell him. He is not unkind about it just unsure what to say or do. My eldest daughter (21) asks about it and I talk to her the most about it. Surprisingly someone so young has been the best one to talk to. People don't understand it, don't know what to say or how to help so I just don't talk about it much anymore. I look fine on the outside; that is what people see.

Take care of yourself,
Ann

 
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Old 01-29-2004, 01:38 PM   #2
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Re: Facial/Trigeminal nerve pain

Hi Ann,

Thanks for the information regarding trigemenial neuralgia. My neurologist told me that he thought it was nerve damage, but he did not specifically say trigmenial neuralgia. He thought it was from the surgery. From what I have read I tend to think I might have atypical trigeminal neuralgia, because I have this constant burning. Although, I wouldn't call it dull. How can burning be dull? LOL. It really hurts. I will ask my neurologist more questions when I see him next week. I only have seen him once, because basically everyone kept telling me I was going to be fine. I had my surgery in March and I knew by November I wasn't going to be just fine. I made an appt. with the neurologist, but it took me six weeks to get an appt. This will be my first follow-up appt. since my first visit. Most of my pain is right in front of my ear, but occasionally I will have it down in my ear.

I also do not discuss my situation with people. I guess it is common not to discuss chronic pain. I don't think that the few select people that I discuss it with get it at all. My 17-year-old has proved to be very supportive. My husband is pretty good.

Thanks for all your help and support.

 
Old 01-31-2004, 07:52 AM   #3
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Re: Facial/Trigeminal nerve pain

Hi Michelle,
Yeah I think my T.N. is atypical too. More the constant pain than the jabs.

Let me know how the neurologist appointment goes - I hope you find more answers.
I am curious, you mentioned some pain relief with Neurontin. If you don't mind saying what is your dosage? I am still trying to figure out if this drug is doing a darn thing for me. And the doctor just keeps saying up the dosage.
It is so frustrating.
Take care.

 
Old 02-01-2004, 03:27 AM   #4
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Re: Facial/Trigeminal nerve pain

Right now I am taking 900 mg (three 300 mg capsules) three times a day. It was helping some, but not a whole lot. That is when my neurologist put me on the Keppra 500 mg two tablets twice a day. I have read on this board before that many people have to take over 1000 mg three times a day. You many not be at your optimium level yet. I will say that I have been on the Neurontin since October added the Keppra first of December. I am just now starting to feel somewhat like my old self. They pain is still there it is minimal most days, which is all I hoped for in the beginning. I know after two months on the Neurontin I still felt much of nothing. I didn't think I would see Christmas last year. What dosage are you on and are you taking anything else with the Neurontin? Hang in there.

 
Old 02-01-2004, 03:28 AM   #5
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Re: Facial/Trigeminal nerve pain

PS. Are you sleeping well? This makes a lot of difference.

 
Old 02-01-2004, 07:16 AM   #6
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Re: Facial/Trigeminal nerve pain

Hi Michelle,
Yes I am sleeping well with the help of Ativan (1mg at night). My doctor has also stressed the importance of sleep. I take three times as much Neuronton as you do (2700 mg) which is disturbing to me. Hopefully next time I can get the doctor to try something else. Though when I asked him last time it was the Lexapro. He didn't explain it was an anti-depressant, found that out when I came home and read about it. Don't really want all these "mood" mind-altering drugs, just pain relief.
Anyway, I am glad you are finding some pain relief. Thanks for the reply. Keep me posted.

 
Old 02-02-2004, 08:22 PM   #7
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Re: Facial/Trigeminal nerve pain

Quote:
Originally Posted by Ann123
Hi Michelle,
Yes I am sleeping well with the help of Ativan (1mg at night). My doctor has also stressed the importance of sleep. I take three times as much Neuronton as you do (2700 mg) which is disturbing to me. Hopefully next time I can get the doctor to try something else. Though when I asked him last time it was the Lexapro. He didn't explain it was an anti-depressant, found that out when I came home and read about it. Don't really want all these "mood" mind-altering drugs, just pain relief.
Anyway, I am glad you are finding some pain relief. Thanks for the reply. Keep me posted.
Maybe you can try some combination of medication like I do with the Keppra 1000 mg and Neurontin 2700 mg. It is just a thought. My Neurontin totals 2700 mg; it is just in divided doses (900 mg three times a day). Are you taking 2700 mg several times a day?

I have also heard of lidocaine injections being given in the face. I am not sure how it works. I plan on asking the neurologist tomorrow.

Have you noticed any weight gain from the Neurontin? I feel like I am gaining on it right now. Not a good thing because I tend to be on the fuller side.

I will keep you posted on my neurologist appt.

I pray things get better for you soon.

Thanks,
Michelle

 
Old 02-03-2004, 02:23 PM   #8
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Re: Facial/Trigeminal nerve pain

Oh, no , lol, I am only taking 2700 mg total per day. sorry about that, read your original post wrong. Yes, I might ask my doctor about Keppra. You know, I haven't really noticed weight gain as an issue with the Neurontin. Been on it since July '03. But I have heard people say that about it. That seems to be a nasty side effect of a lot of these drugs, doesn't it? Take care.

 
Old 02-09-2004, 07:20 PM   #9
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Re: Facial/Trigeminal nerve pain

[QUOTE=Michelle W]Maybe you can try some combination of medication like I do with the Keppra 1000 mg and Neurontin 2700 mg. It is just a thought. My Neurontin totals 2700 mg; it is just in divided doses (900 mg three times a day). Are you taking 2700 mg several times a day?

I have also heard of lidocaine injections being given in the face. I am not sure how it works. I plan on asking the neurologist tomorrow.

Have you noticed any weight gain from the Neurontin? I feel like I am gaining on it right now. Not a good thing because I tend to be on the fuller side.

I will keep you posted on my neurologist appt.

I pray things get better for you soon.

Hi Michelle,

Hope your neurologist appt went well. How are you doing?

 
Old 02-10-2004, 07:51 PM   #10
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Re: Facial/Trigeminal nerve pain

Hi Ann,

I am doing okay right now. I am not pain free, but the longer I seem to be on the medication the better I continue to progress. My neurologist wanted me to stay on the same dosage since I am making progress. I meant to ask him a couple of questions such as about the facial lidocaine injections and about my diagnosis such as atypical trigmenial neuralgia, but I forgot. I guess I need to make a list, because I get to asking questions then I get side tracked. I am sure you understand.

We recently signed a contract to sell our house, so I have been busy working on getting items packed. It has been keeping me busy.

How are you doing? I hope things are going okay for you. Thank you so much for asking about me.

Sincerely,
Michelle

 
Old 02-12-2004, 04:41 PM   #11
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Re: Facial/Trigeminal nerve pain

Hi Michelle,

I am happy to hear that you are doing okay and things seems to be progressing for you. Good luck with the house sale. Keeping busy can be helpful. I am doing okay - about the same. Take care.
Ann

 
Old 03-29-2004, 06:07 PM   #12
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Re: Facial/Trigeminal nerve pain

I suffered horrendous pain seemingly located in the ear. It started out as flashes of pain throughout the entire left side of my head & face then seemed to localize itself in my ear.

Many months of seeing doctors, going to the hospital emergency because of the pain finally resulted in tests being scheduled. To make a long story short, by the time I finally got to see a neurologist after about six months of pain (national health care here in Canada has long waiting lists).

Prior to seeing the neuorologist I searched the internet for any info on TN and read that sometimes chiropractic can be helpful. I spoke to my chiropractor who said she has worked with TN and gave me a treatment. The pain was eliminated by 80%. One more adjustment and the pain disappeared.

When I finally got to see the neurologist and he did various tests he determined that I had TN that responded favourably to chiropractic.

Every once in a while I get twinges of the TN and I just go to the chiropractor so she can work on that area ... so much better a solution than drugs and/or drilling holes in the skull (which is one of the procedures doctors do for TN). No way Jose!

Last edited by Wee Mousie; 03-29-2004 at 06:07 PM.

 
Old 04-01-2004, 05:25 PM   #13
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Re: Facial/Trigeminal nerve pain

Quote:
Originally Posted by Wee Mousie
I suffered horrendous pain seemingly located in the ear. It started out as flashes of pain throughout the entire left side of my head & face then seemed to localize itself in my ear.

Many months of seeing doctors, going to the hospital emergency because of the pain finally resulted in tests being scheduled. To make a long story short, by the time I finally got to see a neurologist after about six months of pain (national health care here in Canada has long waiting lists).

Prior to seeing the neuorologist I searched the internet for any info on TN and read that sometimes chiropractic can be helpful. I spoke to my chiropractor who said she has worked with TN and gave me a treatment. The pain was eliminated by 80%. One more adjustment and the pain disappeared.

When I finally got to see the neurologist and he did various tests he determined that I had TN that responded favourably to chiropractic.

Every once in a while I get twinges of the TN and I just go to the chiropractor so she can work on that area ... so much better a solution than drugs and/or drilling holes in the skull (which is one of the procedures doctors do for TN). No way Jose!
Thanks for sharing your story. I am thinking about looking into some other types of treatment.

 
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