Trigeminal neuritis/neuralgia treatment:

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.

Liked by Om Lee, lady1lake

@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?

Jump to this post

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

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@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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@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 Jen— thanks much for the prompt response, and thanks for clarifying! First, to briefly give you a better picture of my experience: I am sure I could NOT have gone 12 yrs with constant pain! My symptoms were such that one never knew when the spasms would occur. Gee, how best to describe? They would always be changing—whether in intensity, duration, time of day or nite, number of spasms each day or nite, location (always on left side of head/face, mainly cheek by ear.

They might occur for two weeks, then be off for a week or two or for three months, but not so long off after the first few years; they might occur every 3 minutes (honest) for six hours in bed at nite, during the last few years; especially painful ones might occur but four times a day; the afternoons for some reason were generally and mostly pain-free til i went to bed, being awakened with jolt, for such apparent reasons as unconsciously biting my lip, moving my tongue, moving suddenly in the course of a rather active dream. Well, you get the picture, friend.

Increase in the intensity of spasms brought me to the realization I could not avoid drugs any longer about a year ago; but my 200mg/twice daily is apparently wearing off, hence my present day exploration.

So, to make sure I hear you: after 14 years, in August, the painful spasms returned; in 14 years, after the first, you’ve only had the recent ‘needle’ procedure; you continue to maintain the same drug dosages.

And, please tell me, during that 14 years or recently as your body’s undergoing a re-settling, do you/have you received occasional ‘warnings’, little nerve blips, that weren’t painful but maybe scary to a mind that has learned to live with the fear of pain?

I appreciate your sharing so very much. And, if you would like to exchange by email directly, please let me know. Best for you!

Liked by zipmac

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@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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Lee-Just happened to be able to quickly respond…you’re welcome! Sounds to me like you have had a very difficult and confusing time of it. I mean not knowing when these events would hit you–blindsightedly.

My occurrences were very different than yours…14 yrs ago (6 mos after car accident) I started Neurontin, then got the nerve blocks. After a few months added Tegretol and did more nerve blocks. Then Dilantin started and more nerve blocks…all over a 1 1/2 yr period. Over that time there was a waxing and waning of painful episodes. Then was able to STOP all meds/treatments.
I don’t recall any warnings/nerve blips, etc.

In mid-August I had severe and unrelenting pain–right sided throbbing, stabbing and mostly facial-temple, mandible and maxillary regions. I tried Hydrocodone but it only took the edge off the pain, up to 2 tabs every 4 hrs, and was making my stomach ill. Was able to stop the Hydrocodone entirely after the nerve blocks and starting the 2 meds.
email: kobleurjs@aetna.com

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I had surgery 2yrs ago. Microp(spelling). No pain until recently. Now low pain. I suffered very much before meds didnot help. Has anyone had to do surgewry again?. Iam 81 & also have institial lung diswase.

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I had the microvascular decompression surgery on December 17th at Mayo in Rochester. Operation on Monday – released Wednesday morning. It took over a month to back off the carbamazapine and gabepentine I was taking, but I have absolutely no more pain. My left vertebral artery was pressing against the trigeminal nerve and 3 tributaries from the artery had wrapped around the nerve as well. They had to pinch the nerve several times to get everything separated which can sometimes lead to side effects. All I notice is a slight ‘fuzzy’ feeling on the tip of my tongue and the center of my upper lip. I can live with that versus the extreme shocking pain I was experiencing in spite of the prescriptions. I’ve reflected quite a bit on how people must have dealt with this ailment before all the medical techniques known today were available.

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I am new to this community. My PC thinks I might have trigeminal neuralgia. The right side of my face up to my temples is horribly painful. The pain is more of a burning than electrical as described. I have been waking up with horrible headaches in the front of my head. I have also had migraines off and on for a long time. I have been diagnosed with reaumatoid autoammune disease for 1 year and a half.

The pain I am experiencing now off and on is excruciating. Is there anyone else out there experiencing this?

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@janett18

I am new to this community. My PC thinks I might have trigeminal neuralgia. The right side of my face up to my temples is horribly painful. The pain is more of a burning than electrical as described. I have been waking up with horrible headaches in the front of my head. I have also had migraines off and on for a long time. I have been diagnosed with reaumatoid autoammune disease for 1 year and a half.

The pain I am experiencing now off and on is excruciating. Is there anyone else out there experiencing this?

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Dear Janett18 –
Mayo Clinic has some information available about Trigeminal Neuralgia available here: http://www.mayoclinic.org/trigeminal-neuralgia/ also some inforamation availabel about migraines: http://www.mayoclinic.org/migraine/

The Face Pain Association also has some good resources available: http://www.fpa-support.org/

If you are interested is requesting an appointment to see a Mayo Clinic physician in MN, FL, or AZ please click on the “Request an Appointment” button on the upper right hand corner of your screen.

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I have had trigeminal neuralgia for a little over 30 years. Until now, I have been able to control it adequately with Trileptal. However, now the effective dose is greater than the toxic dose, so I am considering surgery. I would love to hear from anyone who has had experience with any kind of surgery for trigeminal neuralgia. I would like to know how well it worked, and if the pain returned eventually. Many thanks to all who can pass on information to help me make decisions.

Liked by zipmac

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I just joined the discussions here. I had the disease TN. on the right side of my face. The Neuosugeons from UC Davis in Sacramento Ca, (after many surgeries) finally gave me a brain Ritzotomy that cuts 2 out of 3 branches in my face. It ended the pain. I now have numbness and Anastesia Delrosa or burning face syndrome as a complication.. My question is can the TN come back on the other side of the face? I have pain when I chew on the left side.

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@Restless67

I just joined the discussions here. I had the disease TN. on the right side of my face. The Neuosugeons from UC Davis in Sacramento Ca, (after many surgeries) finally gave me a brain Ritzotomy that cuts 2 out of 3 branches in my face. It ended the pain. I now have numbness and Anastesia Delrosa or burning face syndrome as a complication.. My question is can the TN come back on the other side of the face? I have pain when I chew on the left side.

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Hi @Restless67,
Welcome to connect.
In this post @ruthanne speaks of getting gamma knife treatment for her tribiminal neuralgia https://connect.mayoclinic.org/discussion/seeking-advice/?pg=1#post-26435 Hopefully she’ll join this conversation thread.

I can imagine that pain on your left side would lead you to worry about TN coming to that side of your face. Have you spoken to a neurologist about the new pain? How are you managing the anesthesia dolorosa?

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