Share this:
jenkob

Trigeminal neuritis/neuralgia treatment:

Posted by @jenkob in Brain & Nervous System, Aug 19, 2012

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

Om Lee likes this
rena

Posted by @rena, Jul 6, 2011

Hi, my concern is with trigeminal neuralgia. I was diagnosed 7 years ago and have taken gabapentin and lamictal for it until recently when my primary physician had me stop the gabapentin completely and cut the lamictal dosage in half. The pain/attacks have multiplied exponentially in severity and frequency brought on by something as simple as a light breeze or brushing my teeth or talking. I know it seems like the obvious solution is to start back on the meds but it was another serious health concern that led the dr to having me stop them. I am considering an appt at the Mayo Clinic and am interested in hearing from those who either suffer from this condition or have been treated for it as well at the Clinic. Thank you for your help to all who reply.

bren

Posted by @bren, Jul 6, 2011

After suffering with the pain of trigeminal neuralgia and the side effects of drugs like Neurontin and Trileptal, I opted for a Gamma Knife Radiation procedure. In a month, I was off the pills and as the year progressed and scar tissue built up I was pain and pill free. It's been 4 pain free years and I would do it again if needed.

websketch

Posted by @websketch, Aug 17, 2011

You are quite lucky the gamma knife worked as it's not the procedure that is often successful. I had the gamma knife and then mvd and still have pain just not as frequent or mind bending and have the entire right side of my face in pins and needles mode most of the time and now the sneezing has restarted, which is controlled by the Trigeminal nerve. Good luck to you! I hope it lasts a very long time :0)

nancym

Posted by @nancym, Jul 15, 2011

Sorry that you are suffering so. I was diagnosed in 1999 and have had the stereotactic radiosurgery and an MVD. Unfortunately, neither have had great outcomes. I had a few good years after the radiosurgery, but the pain returned with a vengeance and I then opted for the MVD. I now have occipital neuralgia as a result of the MVD. I currently am taking Cymbalta, Topamax, Amitriptyline (to sleep), Fentanyl patches and Vicodin as needed. Some days are okay and some are not. I recently retired to try to manage the pain without stress and I'm not even 50 yet. And I loved my job! I meditate and try not to live mired in my pain. Life is too good to miss! Some days, mine is a little lacking though... ūüôĀ

Mayo Clinic has a truly respected reputation. I wish I would have sought counsel there. My suggestion would be... to be sure you trust who is doing whatever you do and ask a LOT of questions. Take someone with you to hear all of the answers. Sounds simple, but can be oh, so important.

lanitawynnyoung

Posted by @lanitawynnyoung, Jul 16, 2011

I agree with you wholeheartedly, I have a similar story, however, I have also been dx with Sjogren's and Fibromyalgia. But I suffered with the trigeminal neiuralgia for years and wish I had all the money I have paid out for it. Also, I had to medically retire at 49. Getting to the right doctor is key to your health and your life quality! I have had shots in my face, around my right eye and every kind of treatment imagineable and more. My pain was helped with Botox shots in my face, eye and trapeziod muscle. It took about 3 times and now my pain is manageable. I wanted to have the surgery I was in such pain, but the MD I was seeing did not believe me and actually scolded me for wanting to have the surgery. You must have a doctor who believes you when you tell them what symptoms you have.

NancyM likes this
jwhite64

Posted by @jwhite64, Dec 3, 2012

Hi, I too suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don't think we are alone with our suffering.

zane

Posted by @zane, Aug 23, 2012

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

jenkob

Posted by @jenkob, Aug 24, 2012

No, I was not treated at Mayo. I have been to my local neurologist and he treated with nerve blocks into my occipital nerve, about 5 Kenalog injections. Started and still on Gabapentin (Neurontin) and Epitol (Tegretol).

zane

Posted by @zane, Aug 24, 2012

I've had an MRI, MRA etc ... I'm on the same medications, but they have stopped working. This is normal according to Mayo. My neurologist wanted to have a doctor in his complex do a nerve block procedure, but I read on the Internet that the procedure they wanted to perform was obsolete and would need to be repeated every 3 months if it did work. I'm tired of the pain. I have an appointment at Mayo in November, but I'm afraid they will start all over with the same testing. I want some type of procedure done to permanently address it. Even if it causes some numbness - that has to be better than the pain I have had for the past 9 months.

Om Lee likes this
omlee

Posted by @omlee, Aug 27, 2012

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!

jenkob

Posted by @jenkob, Aug 27, 2012

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!!

omlee

Posted by @omlee, Aug 27, 2012

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

zane

Posted by @zane, Aug 27, 2012

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

jenkob

Posted by @jenkob, Aug 28, 2012

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.

jenkob

Posted by @jenkob, Aug 24, 2012

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.

omlee

Posted by @omlee, Aug 27, 2012

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‚ÄĒbecause 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‚ÄĒso 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.

jenkob

Posted by @jenkob, Aug 27, 2012

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.

omlee

Posted by @omlee, Sep 6, 2012

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‚ÄĒbut 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‚ÄĒbut 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

jenkob

Posted by @jenkob, Sep 6, 2012

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!!

omlee

Posted by @omlee, Sep 6, 2012

Hey Jen‚ÄĒ 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‚ÄĒwhether 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!

jenkob

Posted by @jenkob, Sep 6, 2012

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

nomore

Posted by @nomore, Dec 11, 2012

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.

zane

Posted by @zane, Feb 12, 2013

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.

lamerex4 and jarvis288 like this
janett18

Posted by @janett18, Oct 28, 2012

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?

alexsimon

Posted by @alexsimon, Oct 31, 2012

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.

yearock

Posted by @yearock, Nov 4, 2014

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.

Restless67

Posted by @Restless67, Dec 25, 2015

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.

colleenyoung

Posted by @colleenyoung, Dec 28, 2015

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?

Restless67

Posted by @Restless67, Dec 28, 2015

Hi Colleen

Thanks for your reply. I haven't seen a Neurologist since my Ritzotomy surgery 5 yrs ago. That is where they have to 'cut' 2 out of the 3 nerve branches. The blood vessels hit that nerve thus causing the TN pain. I had tried EVERYTHING. (including the Gamma knife) to no avail. All the surgeries I had.... didn't work!

Finally they did the Ritizomy. It is hard to explain the Anathesia Delrosa. If you look it up, it will help you understand somewhat. (Try looking up 'burning mouth syndrome also.)

Do you have AD? Not everyone has it. Did you get nerves cut?

I have chronic back pain also, so thru' a managed pain clinic, I use Oxycodone for my pain. I also use a Lidocaine 2% external gel for the mouth pain when it burns too badly. I have good days and bad days. The cold weather makes a difference. (I live in Calif, so I don't what my excuse is.)

I do not recommend opiates however. A mouth guard is what I am going to look into for the AD or burn mouth pain so I quit chomping on my inner cheek. I don't know what I will do if I haveTN coming back on my left side now. I take Lamictal pills instead of Garabenten. Lamictal calms the cheek pain. It doesn't make me too sick like the rest of the pills

Best of everything!

Lana

colleenyoung

Posted by @colleenyoung, Dec 30, 2015

Hi Lana,
I should've introduced myself. I'm the Community Director here at Connect. I don't have TN or AD. Knowing how challenging it can be to manage anesthesia dolorosa, I was wondering how you deal with it. Thank you for the details. It sounds like your managing it in multiple ways. Thank goodness you live in warm climate so you don't have the extra burden of cold winters making it worse.

Is the pain on your left side persisting? Do you plan to see a neurologist?

colleenyoung

Posted by @colleenyoung, Tue, Feb 2 at 9:16am CST

Hi @Restless67,
How are you doing Lana? It's been awhile since we've heard from you.

I just wanted to let you know that we've been continuing with the updates to the Mayo Clinic Connect website. As I was reviewing the discussion threads I found this long and helpful thread of other members of Connect sharing about their experiences managing trigeminal neuritis/neuralgia. I moved your messages to join this group so you can share with them.

By adding the @ symbol before a person's username you can tag them into the conversation. I hope the @yearock @zane @jenkob and others will return to join the discussion again.

Colleen
Connect Community Director

cagon

Posted by @cagon, Sun, Mar 13 at 10:58pm CST

l am new to this blog still trying to explore my option with dealing with TN. I have seen a neurologist staring in January. The pain is unbearable pain is in all three branches mostly 2 and three. Taking 1200 mgs of Tegretal daily. I have good days and bad. Saw a doctor who recommended surgery as my best option. Not ready for this looking at RFL any other ones have this done with success? I cannot drive the side effects are terrible. I need to get back to work soon. Any ideas?

Restless67

Posted by @Restless67, Mon, Mar 14 at 12:46am CST

Hi Cagon,
I feel sooo bad for you because I was once in that particular hell! I couldn't take the oral meds so I had 2 mac degeneration surgeries where they put teflon on the blood vessels so that the nerve could be protected. Some say it works. I had 2 that didn't. I had a gamma knife procedure that didn't work either. So after 5 years of horrible stabbing pain I finally asked for a Rhritzomy....where they finally cut the nerve so that they didn't touch anymore aganist the blood vessel. It is the only procedure that finally gets rid of TN.!! Your mouth is numb and there maybae some complication, but it beats the suicidal thoughts you feel when you get searing thunder pain stabbing thru' your face. Talk to your doctor about that option.

cagon

Posted by @cagon, Mon, Mar 14 at 11:33am CST

Thanks my plan is radio frequency lesioning I still need to speak with the neurosurgeon. it seems less invasive than the others. I hate to hear the different procedure you went thru and they didn't work. my face swells and gets really hot before the pain hits.. It started above my eye and forehead and has made ts way down to the cheek and jaw over the last few months. My lip and inside mouth kicks in and there is no way to brush teeth or eat. Can't touch side of my face or drink shearing pain. Sorry don't mean to be long winded no one understands this I think they think I am just crazy.

i

007007

Posted by @007007, Fri, May 20 at 12:27am CST

ANYONE WITH THIS DREADFULL. ISSUE

colleenyoung

Posted by @colleenyoung, Fri, May 20 at 1:05pm CST

Welcome @007007.
I moved your message to this ongoing discussion thread about trigeminal neuralgia where you can connect with other members such as @Restless67 @cagon @calebba @jenkob @zane @omlee @nomore.

How long have you been dealing with the pain? What treatment has helped?

Please login or become a member to post a comment.