Trigeminal neuritis/neuralgia treatment: What works for you?

Posted by jenkob @jenkob, Aug 19, 2012

I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.

Interested in more discussions like this? Go to the Brain & Nervous System group.

So I had this pain 14 yrs ago, now having a recurrence and the same treatment is given. You may be under the impression that it is obsolete, but it is very effective. Injections into a nerve sound very painful, but luckily they are not.
There are some fancy-do-dah surgical procedures that actually remove part of the nerve…that would be the next treatment I have read about. I don’t think I’d go there–heard of the outcomes and I am not ready for that drastic measure.

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@jenkob

So I had this pain 14 yrs ago, now having a recurrence and the same treatment is given. You may be under the impression that it is obsolete, but it is very effective. Injections into a nerve sound very painful, but luckily they are not.
There are some fancy-do-dah surgical procedures that actually remove part of the nerve…that would be the next treatment I have read about. I don’t think I’d go there–heard of the outcomes and I am not ready for that drastic measure.

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thanks for the post. my experience goes back about just that far with tn. a year ago, i finally gave in to a tegretol generic, carbamazepine—because the pain intensity and frequency was racheting up. The drug has worked fairly well, but the pain has begun to return in its ‘changing week to week’ ways. Has put me back in that old fear mode, and I’m pretty sure I need to find another answer before too much time goes by—so I greatly appreciate your post (it was my reason for signing up) and the possibilities it presents.

Please, please, tell me about the procedure you mention: injections into a nerve. What’s it called? Do Mayo people do a good job? Could it be done in Arizona for me (I understand they have a clinic there, and it’s closer to Oregon)? I share the strong dislike for the ‘cut it out’ surgical mentality, btw! Again, Thanks!

p.s. i had not read Zane’s post before sending mine out.

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@zane

Were you treated at Mayo? If so, how long was the stay and what treatments did they do?

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I hear you, Zane (I didn’t know my just prior post was going to you). I just don’t want to get back into that ‘stopped working’ place you mention!!! And your apptmt isn’t til November! Huh? How could they have you wait so long? I keep putting it out there that someone is going to find a non-invasive (read that ‘no drug’ ‘no knife’) means for healing that which has stricken us. Just a thought in closing: you ever had concussions? or blows to the side of your head? do you have good posture (I don’t)? do you have scoliosis (I do mildly, always have)? Thanks! Let’s stay in touch!

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@zane

Were you treated at Mayo? If so, how long was the stay and what treatments did they do?

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Hi…just to follow up…the nerve blocks are tender, directly into the occipital nerve. Though it sounds painful it really REALLY is effective! Do not stop those meds either, they are specifically for trigeminal neuritis. I don’t want any surgery if possible. My pain started about 6 mos after a car accident. Initially I was treated for about 1 1/2 yrs with periodic nerve blocks and continued the meds as well. Eventually the pain resolved. I also have some scoliosis and have sought pain relief from massage therapists and chiropractors–they really help as well. As far as waiting for appointments–I got lucky and there was a cancellation 5 days after the initial onset of pain this time…I also spoke with the office manager impressing on her the severity of pain I was in…another thought: DO NOT SETTLE FOR A WAIT AND SEE NEUROLOGY OFFICE! Shop around and find someone that can see you in the next couple of days if you are in pain!!

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@zane

Were you treated at Mayo? If so, how long was the stay and what treatments did they do?

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So, jenkob and zane, my name’s Lee; live in Florence, OR. And jen, would like to know where to find your doc—just in case I want her/him tomorrow! (and not have to wonder about a guy who claims he can do, and can’t etc)

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Hi Lee, happy to meet you! My name is Jen and I live in metro Atlanta (GA). My doctor is in Decatur GA–Dr Weiss.

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@zane

Were you treated at Mayo? If so, how long was the stay and what treatments did they do?

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I believe what triggered mine was an incident I had overseas. I felt/heard a ‘pop’ in the back of my neck and a ‘fire’ up the back of my head to my forehead. This happened about 7 pm and it only lasted a few seconds. Later – around 3 am I awoke and tried to get out of bed. I had severe balance problems and collapsed on the floor. I was taken to a doctor where he discovered I had extremely high blood pressure as well. After 3 prescriptions and about 5 days I flew home and my family doctor has had me on blood pressure medications ever since. the MRI showed I had a collapsed right vertebral artery, so 10% of my blood flow was affected to areas of the brain that deal with short term memory and balance. I read on the Internet that a collapsed vertebral artery can cause trigeminal neuralgia on the opposite side of the face – exactly where mine is. I saw a specialist in Iowa City – he said I was suffering from ‘dementia’ – it was all in my head – I was just imagining the pain. What a joke! Then I saw a local neurologist. He spent 5 minutes with me and claimed the collapsed right vertebal could have been that way since birth. Right … That’s when my family doctor got me the referral to Mayo. I’m not imagining the pain! I am an intelligent adult; I serve on city council; I participate in community theatre; I teach a Sunday School class; I have 6 kids, their spouses and 8 grandchildren I interact with on a regular basis. At 56 I have a lapse of short term memory occasionally that I recognize. I think it is because of age and the lack of blood flowing to my brain that controls short term memory.

I did fall off a ladder in August 2011 and smacked the back of my head, but the trigeminal neuralgia started in mid-December.

I do have a question for those on a combination of tegretol & gabepentine. Do you experience slight spasms in your shoulders, elbows, and wrists? I’m taking 200 mg of tegretol 3 times per day and the same with the gabepentine. I recently increased the dose to that level and did not experience these before.

Zane

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@zane

Were you treated at Mayo? If so, how long was the stay and what treatments did they do?

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Yours is a unique situation Lee, I can only say that….it doesn’t appear to me to be ‘all in your head’ or that you are imagining pain. Pain is a real condition! In addition to neurology, there are pain management doctors out there. Not sure if one is close to you or not but you might seek assistance from them. Neurologist–well you could see another and make sure you tell all the details of your situation. Mayo might help–I have never been there but have heard only good things!
I am currently taking Gabapentin 600mg and Epitol (Tegretol) 200mg each of them three times per day.
I would make sure you tell your MD that you are reducing the dose.

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Hello again, Jen,
Hope you have the time to share more. To briefly reacquaint you: I’ve had the TN pain, left side, for maybe 12 yrs now, and it was getting stronger/more frequent a year ago when I FINALLY said enough and went to meds. I take 200mgs of carbamazepene (tegretol) twice a day.

After about a year now (of peace from pain—but not from fear), I’m getting signs it is wearing off, having some, but not many, spasms of the 20 second variety that hurt, but only once a day and not for a week or so now.

Something has to change, before things get worse. I’m checking out the alternatives, and it seems my options are:
1. To increase the med dosage. I notice you take two drugs, and I wonder if your intake has been increasing over time?? I also wonder just how the amount you take allows for you to function in the work-a-day, social worlds?

2. I also understand your local neurologist has treated you with nerve blocks into your occipital nerve, about 5 Kenalog injections. And this was the first time in 14 years? While you were taking the drugs all during the meantime?

I did not want to explore this avenue in Ore-Wash-Calif, looking for a specialist neuro doc until I better understood your experience. I don’t like drugs! My body has never taken to them well at all, and I have some side effects, memory in particular, or is that just because i’m 65—but I don’t like the pain and having my life taken away from me, even more! If you have had pain relief for 14 years, with drugs and periodic nerve blocks, then I’m listening with great big ears!

3. Microvascular decompression. I have just returned from a consultation with a neurosurgeon at the Oregon Health Sciences Univ in Portland. You might guess his recommended remedy; yes, it’s surgery, low level but surgery nonetheless. They take an MRI. IF it shows an artery and nerve squeezing together, then their objective is to place tiny
sponges’ between the nerve/artery. Of course, this involves cutting thru the skull just behind the ear, then entering the brain thru a 1 inch hole. They note this does have a risk component, though small (5% that something ‘bad’ is gonna happen), and it takes a couple of weeks before you’re up and running around again. [Incidentally, if the MRI doesn’t show such, then there are the more drastic surgical measures they said they did not want to talk about til after the MRI] !

With people my age and good body condition, they say 90% of the time this leaves one pain free for 10-12 years. This is probably the best that can be said for such a procedure, including the fact that the meds are bye-bye, which is a big plus in my book.

Could you kindly shed more lite on how many injections you’ve had over the years, and about how you feel you’re affected by the meds you take? I feel this would really help with a decision i feel will have to be made in the near future. My best health wishes for you, Jen! Lee

REPLY
@omlee

Hello again, Jen,
Hope you have the time to share more. To briefly reacquaint you: I’ve had the TN pain, left side, for maybe 12 yrs now, and it was getting stronger/more frequent a year ago when I FINALLY said enough and went to meds. I take 200mgs of carbamazepene (tegretol) twice a day.

After about a year now (of peace from pain—but not from fear), I’m getting signs it is wearing off, having some, but not many, spasms of the 20 second variety that hurt, but only once a day and not for a week or so now.

Something has to change, before things get worse. I’m checking out the alternatives, and it seems my options are:
1. To increase the med dosage. I notice you take two drugs, and I wonder if your intake has been increasing over time?? I also wonder just how the amount you take allows for you to function in the work-a-day, social worlds?

2. I also understand your local neurologist has treated you with nerve blocks into your occipital nerve, about 5 Kenalog injections. And this was the first time in 14 years? While you were taking the drugs all during the meantime?

I did not want to explore this avenue in Ore-Wash-Calif, looking for a specialist neuro doc until I better understood your experience. I don’t like drugs! My body has never taken to them well at all, and I have some side effects, memory in particular, or is that just because i’m 65—but I don’t like the pain and having my life taken away from me, even more! If you have had pain relief for 14 years, with drugs and periodic nerve blocks, then I’m listening with great big ears!

3. Microvascular decompression. I have just returned from a consultation with a neurosurgeon at the Oregon Health Sciences Univ in Portland. You might guess his recommended remedy; yes, it’s surgery, low level but surgery nonetheless. They take an MRI. IF it shows an artery and nerve squeezing together, then their objective is to place tiny
sponges’ between the nerve/artery. Of course, this involves cutting thru the skull just behind the ear, then entering the brain thru a 1 inch hole. They note this does have a risk component, though small (5% that something ‘bad’ is gonna happen), and it takes a couple of weeks before you’re up and running around again. [Incidentally, if the MRI doesn’t show such, then there are the more drastic surgical measures they said they did not want to talk about til after the MRI] !

With people my age and good body condition, they say 90% of the time this leaves one pain free for 10-12 years. This is probably the best that can be said for such a procedure, including the fact that the meds are bye-bye, which is a big plus in my book.

Could you kindly shed more lite on how many injections you’ve had over the years, and about how you feel you’re affected by the meds you take? I feel this would really help with a decision i feel will have to be made in the near future. My best health wishes for you, Jen! Lee

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Hey Lee–so let me answer your questions (to the best of my ability!) Seems you have had this pain constantly over 12yrs, and my pain is since mid-August after being pain-free for 14yrs. So, the meds I am on now have not been increased. I don’t like taking meds if I don’t have to but these meds are REQUIRED! Again, I am on Neurontin (Gabapentin) 600mg 3 x day and Epitol (Tegretol) 200mg 3 x day. When I feel spasms, it is likely that a dose is due. Otherwise I take some Advil/Aleve/Ibuprofen and it helps some. Personally I recommend the meds–the pain was unbearable! The surgery you describe seems drastic and I am not going under the knife any time soon! I have looked up info about such surg on WebMD and recommend you search there as well. Don’t take just one doctor’s opinion into consideration, please!!

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