Trigeminal neuralgia
A bit of an odd title for a blog I know, but sort of does what it says on the tin. On Friday afternoon I got an email from an old friend who had just been diagnosed with Trigeminal neuralgia.
I’ll be honest it was not something I knew much about apart from it being a symptom of multiple sclerosis in around 3% of cases and, of course, is one of the most painful conditions there around.
As I could not answer Jayne’s questions I thought it would be a good idea to ask our readers who have Trigeminal neuralgia a bit more about their experiences and how they manage the pain.
As background, Trigeminal neuralgia is a stabbing nerve or neuropathic pain (https://patienttalk.org/what-is-neuropathic-pain-do-you-suffer-from-nerve-pain/) which affects the face. The pain has been described as like being stabbed or an electric shock.
As well as the pain (which can last between a few seconds and a couple of minutes) people with Trigeminal neuralgia may also experience numbness prior to the pain and a dull ache during an attack. It should be noted that attacks of Trigeminal neuralgia come and go over time. Attacks may take place over a few hours but can go on for months.
The triggers really vary from cold breezes to facial movements such as chewing or even turning the head.
It is worth bearing in mind that for many people living with Trigeminal neuralgia can be very tough and in some cases can lead to depression.
Often doctors are uncertain as to what may cause Trigeminal neuralgia but in many cases it is a symptom of multiple sclerosis or a by-product of a tumour.
Current research suggests that surgery is the most effective treatment (successful in around 70% of cases) if use of painkillers has not worked as a first line treatment.
Going back to Jayne’s questions, she is interested in finding out the answers to the following questions:-
1)Please can you describe a typical Trigeminal neuralgia attack both in the short and long term?
2)How frequent are your attacks and how long do they typically last?
3)How firm was the diagnosis and who made the diagnosis of Trigeminal neuralgia?
4)Which type of Trigeminal neuralgia do you have? What was the cause of your Trigeminal neuralgia?
5)How do you treat your Trigeminal neuralgia and how successful have the treatments been?
Obviously any part of your Trigeminal neuralgia journey will be really useful for Jayne so it would be great if you could share your experience using the comments box below.
Many thanks from Jayne and me.
Ginabadina02 I too was prescribed trileptal after my first horrible attack in 2013, by my nero. Tho it was my dentist who dx it, I had horrible pain in my teeth back molars I thought I either had a infection or I filling feel out. After telling him my symptoms told me to see my neuro. The week in between was horrible I don’t normally take pain meds but it was the only thing cutting the pain. I laid on the couch for days, getting sleep periodically, wth one of those bean bag micowave for my face. I was already on gababentine, one the tripetal was taking I was finally pain free. I do get some lighter symptoms but have functioning life. Good luck I hope this helps.
1)Please can you describe a typical Trigeminal neuralgia attack both in the short and long term? I have type I and type II. So my pain is a combination of them both. I have constant burning from type II where it feels like someone is taking a hot iron to my face. I get sensations of an ice pick being stabbed into my jaw joint that is connected to electricity from type I. I get the feeling of razor blades slicing my lower jaw and cheekbone. I get a lot of pressure on my cheekbone which I have to mash down on. During an attack I can’t talk, smile, chew, brush my teeth, anything dealing with my mouth.
2)How frequent are your attacks and how long do they typically last? Before gamma knife and nerve blocks I would have an attack usually 5/7 days of the week. Some would last a day. Some would last ten.
3)How firm was the diagnosis and who made the diagnosis of Trigeminal neuralgia? At first the dr’s misdiagnosed me a million times. Finally one I got the diagnosis it was firm but when the meds didn’t work on me, and I stated to show signs of it being both types and bilateral, they started to waiver and even accuse me of it being psychosomatic.
4)Which type of Trigeminal neuralgia do you have? What was the cause of your Trigeminal neuralgia? Types I and II. for six years they had no clue as to the cause. They suspected MS, but I tested negative many times. They suspected Lyme, but I didn’t have that. They accused me of being nuts. I’m not. I already have SMA which has made me a wheelchair user since age 11. So the dr’s were blind sided. Then six years later I figured out and the drs finally agreed that I have EDS (ehlers danlos syndrome) which is actually common to have with SMA and it causes your joints to disintegrate. So the reason for my face pain is bc my jaw has been disintegrating since I was a child causing initially TMJ. Now it’s caused TN.
5)How do you treat your Trigeminal neuralgia and how successful have the treatments been? at first I tried 26 different types of anticonvulsants. Tegretol helped the shooting pain the most but it wore off. Gabapentin helps the burning pain the most but both neither did enough to give me real relief. I had microvascular decompression craniotomy surgery, but that didn’t help, as it doesn’t with anyone who has type II or bilateral. The most successful treatment was gamma knife surgery which eliminated the striking pain and most of the burning pain. That lasts 4-6
years and you can only have it done twice in a lifetime. Then I have bimonthly nerve blocks on my trigeminal nerves and that really helps the burning pain. I’m also on a daily opioid regiment and the butrans patch was the best but I was allergic to it and had to stop bc of chemical burns. Hope this helps.
If you need to talk or learn more my email is Ariella.barker@gmail.com and my blog is Shiksappeal.wordpress.com
Do you grind or clench your teeth. I do and it really doesn’t help. My dentist made me a gum guard which helps at night. I have TN now so you have my sympathy
1)Please can you describe a typical Trigeminal neuralgia attack both in the short and long term?
stabbing, lightning bolts, burning, crushing
2)How frequent are your attacks and how long do they typically last?
everyday; sometimes just brief zaps lasting only a few seconds but most of time longer. burning and crushing is always there
3)How firm was the diagnosis and who made the diagnosis of Trigeminal neuralgia?
very firm, my family doctor and then neurologist
4)Which type of Trigeminal neuralgia do you have? What was the cause of your Trigeminal neuralgia?
both, classic and atypical; unclear what the cause is ( assuming it is MS, still waiting on the official diagnosis)
5)How do you treat your Trigeminal neuralgia and how successful have the treatments been?
tried multiple anti-seizure meds and even lyrica, currently take
robaxin, baclofen and tordol (my body is funny with meds so I’m limited)
Hi, I wish you all much luck! Having suffered with Type 2 Trigeminal Neuralgia for over 6 years now with pain mostly in my left eye and jaw everyday, I have had great luck with Topirimate, 150mg a day. 50mg morning and 100mg at night. I also take 40mg of Fluoxetine per day.
For breakout pain I take up to 150mg of Diclofenate or I can take Sumatriptan if I have a bad migraine coming on. It depends on the day and/or the weather. Changes in weather just about kill me most of the time. I also have two bad vertebrae in my neck, C4 and C5 which may be part of the cause of this whole thing as I’m only 52 years old.
I am hoping soon to be evaluated by a new team of Doctors and possibly undergoing an MVD and getting cured of this horrible condition once and for all!!
I found a lot of help and support on Ben’s Friends Network, you can find them online by searching for them. A superb group of people!
God Bless!!
Jeff
Being a nurse and having MS for many years, I almost immediately knew what was happening when my TN symptoms started a couple of months ago…it had to be a relapse. Suffered through the night sometimes screaming into my pillow. Extra pain meds and gabapentin kept me from completely losing it. Called my neurologist the next morning and was sent for three days of intravenous steroids. Pain and symptoms went away that day. Came back only one time since, but was very mild and short. I cannot imagine going through life with that misery. Wishing you comfort and relief!
I was just reading your post about just getting diagnosed with ms 3 weeks ago. My husband suffers from it and I understand the frustration you feel and how scarey it is. On Facebook there are many groups to attend and it helps to talk to those who know what you are going through. My husband went from walking like he was drunk and pushed himself to get better and now you can’t even tell and is back at work which is very physical. He was on copaxone at first and it made him worse with 2 relapses. They switched him to gelyania which is a pill he takes every day and he hasn’t relapsed in 2 years. I also suffer from Fibermyalgia and deal with chronic fatigue. If you ever need to talk you can always look me up on Facebook. I will pray for you and I understand the journey you have ahead of you. Like my husband says he may have ms but ms doesn’t have him. Take care.
I just went though this at thanksgiving time. After trying gabapentin. Tegretol final got it under control. The pain as so bad I wanted to cut my head off. I had gamma knife surgery on March 11 th at the Cleveland clinic. I have now started to ween off the drugs a d believe the. Surgery ha ssss worked you can learn more about this procedure on line.
Jolene. You.are strong to endure all of that pain got diagnosed with MS 3 weeks ago. I am not dealing with it very well. Although I don’t experience what you have I can relate to medication not working. My neuro put me on Tysabri and it has made EVERYTHING worse. I hope one day they find good treatment for MS and all.our symptoms.
This was the first real and most painful sign of my MS. I tried painkillers, but it didn’t touch it. Neurontin helped, but only a little. I described it as lava being poured on my head and face with knives stabbing in random places. I also had optic neuritis at the same time. The only thing that helped was acupuncture. After 4 months of extreme pain, I finally went to see an acupuncturist and the pain was gone entirely after 5 sessions. That being said, to this day, when I have a twinge, I wait for the pain to come behind it.
Good luck, I don’t wish this on anyone
I was diagnosed with MS because of trigeminal neuralgia. The pain was so awful that I thought I would lose my mind. I had been to a dentist and ended up with a root canal to try to help the pain. At that point it wasn’t that severe so I thought I may need the root canal. Shortly after that every time I looked down the stabbing pain became severe. I was eventually put on Gabepentin and Tegretol. That helped the pain stay away, but I was a drugged out zombie for a year.
I had surgery where a needle was inserted through the cheek to the base of the skull. A balloon is blown up and the trigeminal nerve was destroyed. I actually had to gave the surgery twice. The second time worked well – I actually have a numb face and pretty deadened taste buds, but for me it was well worth being pain free.
Every once in a while it feel twinges of pain returning, but so far with a bit of neurontin it goes away.
I think surgery was the best option for me. Life drugged us wasted.
Jolene, Try the Trileptal ( generic ), although I take some gabapentin (Nuerotin) I don’t think it helps at all. My Nuero said Trileptal is the best drug for it right now. It takes a while to build up strength though. (((hugs)))
I have had TN for past 5 years. I went through the ringer of dentist, sinus specialist, neuro, pcp. I had surgery on my cervical spine and thought it would help..NOT. Finally was diagnosed and started on gabapentin which helped in the beginning. I was then put on tegretol which DID help but I had an allergic reaction and had to stop. I was put on the gabapentin again 3600 mg a day. It helped a little. Now my new neuro reduced the gabapentin to 1600 mg a day and added Dalantin. Mine is on the right side (and starting on the left here and there) It affects my ear, jaw, cheek and eye. It drops me to my knees when it’s at it’s worst. Sometimes it last seconds, sometimes it lasts twenty minutes. I have the episodes everyday. There are times when it’s almost constant for days at a time. It’s the most horrible relentless pain I have ever experienced. Wishing pain free days for everyone.
Hi Jayne,
I have had TN for about 15 years and started with it when I was 26. Mine started in the lower jaw but now I can also have flares in my upper jaw as well. In the beginning I would only flare for I brief instant while eating and it would go away right away. When it progressed I had pain for longer and more things would start the stabbing, burning or lightning like attacks.
My diagnosis would be different for most in that I worked for a dentist as a dental assistant so I was able to have a through exam and x-rays. He had been my dentist since I was 17 so he also knew my medical and dental history. Since I had no dental problems or any other thing he could see as a reason for the pain, he suggested I see my Nuero. about it. From my symptoms the Nuero. thought it was most likely TN and we started treatment with anticonvolsants. At first I just took meds when attacks would flair and stopped meds when disorder would go into remission. I had one remission that lasted as long as 1 and 1/2 years.
At this point when I have attacks they can be triggered by stress or just start on there own. It effects me by not being able to talk, eat, get breezes on my face, touch on outside of my face, kissing, making expressions, and in some cases touching the inside of my teeth with my tongue.
However there is hope. Anticonvolsants can take some time to start working so now I take meds all the time and have not had a bad attack in at least a year. I take gen. Trileptal 600mg, gen. Nuerontin 300mg, Baclofen and Paxil 3 times a day. They do make me very sleepy but unfortunately I am disabled so I don’t have to work anymore. The last med we added was Paxil and it really helped me with my anxiety level and deppression.
Best wishes TN sis
Thanks so much for your replies – I appreciate you all sharing… like yourselves, the pain was excruciating – in my case t3 (lower jaw) and came in waves lasting only a second or two but was continuous for over 48 hours, when I was given naproxen 500mg and some epilepsie tablets which made it more bareable … it ached like ear/tooth ache for 5 days after…. out of interest, what tests were done for the diagnosis?
I have had TN for 34 years. I first went to a few dentist. I even had a back tooth pulled. I went to top specialist in Boston who told me point blank, they could not help me. That was many years ago. I went to a TMJ specialist who said I had TMJ. I had TWO OPERATIONS. First one did not work, 2nd one the Dr. Said usually works. It did not. It Left me with a drooping eye because he cut facial muscles. The surgery that is out now where they insert a Teflon pad between the two nerves does not work according to my Neurologist. Relief only last a few months.
My pain is Severe lighting bolts, over & over again. It is on my left side of the face, left side of the head. They are so bad that my left foot involuntary jumps as the pain is shooting in my head. They last for 20 minutes all the time, yes, sometimes I cry with the pain. When it finally subsides it leave me with an ear ache.
I have tried EVERY medication available over the years. I have started on Tegretol -XR. It is definitely helping me. I was on the generic form & that only made me sick.
I wish you the best. My advice is to start on Tegretol-XR first. I would not advise surgery, my opinion only.
Good Luck,
God Bless.
Mine started in my head first, lightening bolts going thru my head. It could happen for seconds or minutes, then go away. Later on, I started getting the face pain…usually a burning or ache on the side of my face. I had brain surgery in 1985 and TN was diagnosed in about 1997. I take 1200 mg Tegretol mg daily. I also have a seizure disorder and depression, so I take a lot of medications. The most triggers for me are cold breezes and a change of the weather or stress. Other times, it just happens. I will go for months without a attack and it starts again. I think I’m lucky. I know others that never get a break.
Jane… 1) My TN is a little different than “normal” TN. Mine is in my head instead of my face, normally towards the crown of my head. It’s like lightening bolts zapping me every few seconds and can last for days at a time. During the attack and for about a week after, it literally hurts to touch my hair in any way and my head is tender. My neurologist (I have MS) diagnosed it very easily and prescribed Tegretol every day for it. It seems to help slow down the episodes, which were 4-5 times a month and now are only 1-2. Unfortunately, there isn’t a pain med that touches it and I am very testy when it is happening. However, please know as well that I have low/no tolerance to medications and many of them do exactly opposite of what they would do for someone else. I can usually tell when an attack is coming because I get migraine like visual auras & blind spots an hour or so before. I hope this helps, somewhat!
I had a very painful shooting pain down my face whilst asleep which woke me and left me with an ache down my face for a long while. This was 3 months after a very nasty MS relapse which also got me my MS diagnosis.
I had drunk a bottle of white wine before bed and I never have since which has also resulted in no more TN – I pray.
It was so painful, I never want to experience that again!
I have Trigeminal neuralgia for I believe 5 or 6 years now… when I first got it no one know what it was.. I was young and didn’t have nothing else wrong wit me.. and my case it is different then others mine doesn’t come and go it stays I have constent horrible pain… nothing works to help it no pain meds… the only thing that works is tegrotol.. I have to take it everyday otherwise I get an attack… I now have ms was dx about 2 years after my first case of tn…
First time I suffered with this was April 2011. Thougt had an abcess tooth. Turns out it was the most painful symptom of MS I had ever expeirenced. Actually cried at my office because of the pain. Couldn’t eat, drink or sleep – if my teeth touched I screamed and cried more. My neurologist sent me to the hospital for an intense high dose steroid infusion. Everyone was stunned that it did not help. Ended up adding prednisone, baclofen, and vicodin to my medication regiment at home. After three more days, finally started eain up. Sadly, my MS symptoms began to occur more often after this episode. Since then, I have had this particular flare up occur about half a dozen times… but I now can feel it begin in my jaw or teeth. I call my neurologist immediately and start taking prednisone, baclofen and vicodin again. If I catch it right away, I’m usually better within two days. I wish no one to suffer this pain though… it makes my other symptoms seem like a walk in the park. 🙁
Weird – my Mom’s name is Jayne (with the y) and she has had trigeminal neuralgia for what seems like forever. She’s taken Neurontin without help. She had a laser type surgery, it failed. From what I understand, there is a surgery where they open your skull and burn the nerve – and that is pretty much the only way for it to stop. I’m sorry about your friend. Believe me though, after watching my Mom crying in pain whenever she tried to take a bite of food – find a great neurosurgeon and get it permanently taken care of ASAP. Best wishes.