Rare Symptoms of MS: 12 Things to Know About Trigeminal Neuralgia

Trigeminal neuralgia is a term used for facial pain which begins in the trigeminal nerve. It usually occurs in people over the age of 50 and affects women more than men. However, it is more common in people who have multiple sclerosis (MS).

We’ve put together a list of facts about trigeminal neuralgia with help from familydoctor.org and the MS Trust UK.

MORE: Seven strange and unusual multiple sclerosis symptoms

  • There are two trigeminal nerves running down each side of the face. Each trigeminal nerve has three main branches: the upper branch reaches to the scalp and forehead, the middle branch to the nose, cheek and upper jaw and mouth, and the lower branch reaches the lower jaw and mouth.
  • Damage to the myelin sheath protecting the nerve is what causes pain for MS sufferers.
  • Pain may be triggered by everyday activities such as eating, brushing teeth, talking, head movement, breeze, air conditioning, hot or cold food, or may come up spontaneously without any trigger.
  • Pain can last for a few seconds or up to a few minutes. For some, the pain is constant.
  • Some report pain like an electric shock, whereas others report an aching or burning sensation.
  • The pain can range from mild to excruciating.
  • Flares can last for hours, days, or even months.
  • Dental pain or eye pain can sometimes be mistaken for trigeminal neuralgia, so if you experience pain in your mouth or eyes it’s wise to visit your dentist or ophthalmologist.
  • Over-the-counter pain medications are not effective for trigeminal neuralgia pain.
  • Trigeminal neuralgia is often treated with carbamazepine to begin with. Baclofen may be given to help relax the muscles.
  • If medication doesn’t work, surgery may be required to deliberately injure the trigeminal nerve so that it stops sending pain signals.
  • It’s estimated that between four and six people living with MS will suffer from trigeminal neuralgia. Usually, they’re over the age of 40.

MORE: Tips for managing cognitive health with multiple sclerosis.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

69 comments

  1. Jerry Cornwell says:

    I have found that chewing gum provides some relief from trigeminal neuralgia. When I have a recurrence of TN I start chewing sugarless gum and (with luck) the pain recedes after a few minutes but I continue to chew for most of the day. It works for me hope it will for you, at least its inexpensive.

    • Holly says:

      I have noticed that this helps, too. It has to be a harder gum though. But as long as I’m able to chew the pain is relieved. I have lost my lower teeth on the right side of my mouth though. So now I have to chew on the left side. Trying to get implants on the other side. This is all very frustrating. I have Ehlers Danlos.

      • Connie says:

        that is interesting, though Im not diagnosed with Ehlers Danlos, pretty sure my daughter has it and I have hyper mobile joints too.
        Could Ehlers Danlos be related to trigeminal neuralgia?

        • Darleen says:

          I hypermobile joints and my daughter has Ehlers Danlos. Both my daughter and I have migraines, and now that I’m over 50, trigeminal neuralgia. And yes, I have thought there is an association to these diseases

      • Dana says:

        Just wondering if you got the implants yet . One by one I had all of my teeth pulled on the right side (upper and lower) and with each one the pain became less. Now I notice that my gums hurt and inflame with my trigeminal pain. I figured my root canals had underling infection contributing to everything. I intended on getting implants but I have put it on hold . Just wandering if you went ahead with the implants and how your doing!! Thanks Dana

  2. Marie Evans says:

    Yes I have Trigeminal Neuralgia. I first had an occupancy when I was in a restaurant with my Sister it just came on so quickly and I had to get out of room it was excruciating thank goodness it didn’t last long but it still visits me 3/4 times a wk. I rub my gums with sensitive toothpaste. I was referred to L’pool hos for oral medicine. I was put on Carbimyzipine didn’t work for me got to a point I had to drink through a straw then was put on Gabapentin this was 4 yrs ago and now ime so pleased to say don’t get it now but instead I have end of tongue nerve pain quite bad, cold water eases it but keeps flaring up so in the process of seeing MS nurse to see what can be done ?

    • Veronica Moser says:

      I have been suffering for days with this pain. I went to dentist he couldn’t find anything on X-rays but said I probably had cracks in my teeth so proceeded to prep 2 teeth for crowns and pain is still there excruciating. Pain is up into my eye now. I am so glad to find this post so I can now know what is causing this – I asked dentist if itcould be my MS he said he didn’t know. Thank you for posting this it is 3 am now but plan to call neurologist first thing to see if I can get any relief!

      • April says:

        I had this terrible pain after a root canal. Dentist couldn’t find any reason for it. I didn’t know but I had MS at the time. Later it turned into electrical shocks in my face or just random swelling. I looked it up and diagnosed myself which a neurologist later confirmed. It’s very common that people with MS suffer from TN. It’s amazing to me that more dentist aren’t more educated about this. Please describe in detail to your neurologist what you’re experiencing. I’m on tegretol and it helps.

      • Lily says:

        The dentist told me the same (small cracks in my teeth) and gave me antibiotic cover. Thank goodness my GP was on the ball with this but still early days. I could not believe the level of pain.

        • Gale Miller says:

          I have pain in my right leg during a TN attack? I don’t know if it’s really weakness? but it runs to the arch of my foot I even feel it in the fatty part of my palm by my thumb and I put pressure on it with my summer whatever object I can find and sometimes? That can help a little bit I had a cyst in my trigeminal nerve that had to be removed did not help just rerouted pain! I don’t know if that answers your question but maybeit’s a milder case of what I have cuz I guess it does feel kind of weak in my arm?

          • Dana says:

            OMG! I have the exact same thing!! It’s getting hard to walk .even pain in my inner thigh. My face neck shoulder and r arm ache and the pain in the thumb area . Have you been diagnosed with MS by any chance??

    • Stephanie S Romine says:

      Marie, does the gabepentin work, I have such severe nerve pain on my upper left j aw and face, so painful, then yesterday it was extreme. I wear dentures thanks to dent a lot implants that went very wrong, lost my good teeth also, when I take out my top denture, the pain is bad after awhile. But yesterday it was so extreme I couldon’t sleep.I have a Dr appt on monday. Ihave been diagnosed with MS, and just wondering if this is nerve pain from the MS and if that med that you are on works. Thank you

  3. Richard Parker says:

    I have had TN for approximately 3 years nefore the operation to correct it. There is a very good reason why physician’s call it the “Suicide Disease”.
    Anyone that has had it knows that you are not nearly describing it’s effects. Excrutiating, does not cover it. It xomes unexpectantly, and can omly be managed with pain, and seizure medicine for a time. Tou will need one of rhe operations to alleviate it. That’s a fact.
    When the pain happens, it is lightning fast, intense, makes you drop what ever you are doing, and drool, scared to take another breath, or swallow. The medicine is Tegretol. I was drinking it right from the bottle, before the operation, kust to avoid an occurence of the pain, if you can call it that. More like an electrocution, in the area, for me, it was the upper teeth on one side. A LOT more needs to be said on this. Do your research on this, and get one of the highly successful operations. I had a Percutaneous Balloon Rhitzotomy. Problem gone, which was a bloid vessel touching and pulsating on the trigeminal nerve. I’d be flad to tell more of MY story if any one is interested. Don’t delay on fixing this problem. Find an excellent Brain Surgeon, and procedure with above 90% success rate.

    • Beverly L Miller says:

      I am so glad your surgery was a success. I had microvascular decompression surgery. The surgeon was “supposed” to be one of the best brain surgeons. However, look up the term “anesthesia dolorosa”. It is called the neurosurgeon’s nightmare. When there is a so-called problem caused by the surgeon, you wake up with a WORSE problem than when you first began. I WANTED the MVD because the pain was so bad. Seven years later I only wish I had known what this surgeon would do to me. In addition to the pain, the numbing of the mouth includes my throat. Have choked many times. When you are screaming in pain, you are willing to do most anything – that is what I did. Anesthesia Dolorosa is very rare. I was sent to Duke Medical Center in North Carolina to see if they could “undo” some of the problems caused by the first procedure. Unable to help, and they are the best. Any comments appreciated about living with Anesthesia Dolorosa. Aside from the pain, the depression it causes is the worst!

    • Rose Browne says:

      I had a Rhyzotomy it at Mass General in Boston and you’re right it has been fantastic. No pain since and believe me I know what you mean about the pain. I was on the floor crying more than once. So now here’s to the success rate. I have had MS since 2009

      • Kathy says:

        Hi Rose,
        Could you please tell me the name of your surgeon or doctor at Mass General? I want to find someone in Boston area that is an expert.
        Thank you

    • TNgirlwithTN says:

      Thank you. I was just diagnosed w tn1 and tn2. Mri this week. Neurologist in 3 months. Woooooo hooooo

    • Victoria says:

      I started looking up my symptoms because I originally thought it was a tooth ache then Gum pain and as the area grew it now affects my ear it travels from my lower jaw, upper jaw ,check bone, all the way up to my Temple and it is only ony left side of my face. It feels like my gland under my jaw is swollen as well. But the pain rarely comes on during the day unless I am stressed it seems. My pain disrupts my sleep 5-7 times a night I wake up suddenly with this burning excruciating pain and I can’t.move

    • Kevin says:

      I heard someone with TN describe it as demonic and i think that’s a better term for it no human being should have to go thr such a pain. I have had it for 5 years and recently had a flare up that is so bad i have been put on 3 more medications and trying to go to work is absolutely insane. I am having several tests being ran currently to see why it has progressed to such a magnitude everyone reading this who has TN may God bless you and your families i wish only thr best for you.

      • Maria Alff says:

        Oh, I suffer also about 4 1/2 years now. And what it does to my family is killing me. I cry thinking how wonderful my husband and daughter have been. This past year, since April 2018 I can’t count my hospital/ER visits. My episodes leave me unable to eat, drink or talk. Had glycerol shot and later Gamma Knife-neither worked. Neurosurgeon wants to do MVD. Have to make a decision, but we’re so undecided. I pray for everyone with TN.

    • Cindy Perkel says:

      Hi, I was diagnosed a little over two years ago. Given Carbamazepine and Gabapentin. Did it work? Yes and No. I take it daily and for the most part, No pain. But when the flare up comes it seems like there is no relief at all from the medicines. Debilitating pain to say the least. Can’t brush teeth, can’t blow nose, can’t eat and mostly I can drink through a straw, standing up and/or walking can be painful, also painful to take the very medications that may give me slight relief. I am on the third day of a flare up and had to leave work the first day of the flare up, now will probably have to call off today. I am hoping that this flare up ends soon. I am going as a walk in to see my doctor this a.m. I have not yet considered the surgery, have read up on them but afraid of the results. I am afraid it will leave me with a droopy face and the possibility of it not working. Plus my doctor says you only go for surgery if medications no longer work. Well, I am getting to that point I’m thinking. Your thoughts?

    • Hi Richard, i had my first attack yesterday and its changed my life,again.I have been thru and still suffer extreme Chronic pain. As i was have my nails done yesterday, I was absolutely terrified as when the girl was filing my nails it wanted to scream but i was to terrified to even breathe as it felt like she was filing my nail beds that had been badly burnt and every movement she made i could feel it in my teeth, and then the right side and front teeth exploded with electric shock after electric shock. The my body went into spasm tremors and my neck was like it was fused together and inside my neck was strongs spasms.It was like a electricity cable had come apart in my body and was sparking shocks behind my eye behind my teeth into my temple, causing blinding pain behind my right eye then sparked off and hit a big fluid filled ball of pain in my temple. I cant remeber when it stopped i think i fell asleep for a instant while my arms and legs where having spasms and my whole body was stiff as a board, i cant remember breathing, or if anyone noticed. I felt like i passed out! Then tears were runing down from my right eye, even tho my tear ducts dont work. My whole body hurt from my swallon fingers to my burning swallon tows. I am terrified as i have so may health issues. My sister has MS and many of my health issues sjorgens disease ruematiod arthritis, complex dystrophy syndrome osteo arthritis all come under connective tissue dysorder. I also have cirrhosis of the liver from a blood transfion, a Aquired brain Injury. I couldnt even remember hoe to spell it the other day. My whole right side is in Extreme pain, swollen burning joints 24/7 and i feel like i am constantly going to pass out from what feels like being so tired.And on and on it goes. I am still in major shock. I am a extremely one tough 55 year old and live on my own. When i found the reason for my newest issue, its shocked me more than all the others together. Today i keep having cramps want to pass out, and i can feel that feeling you get when you h ave a seizure. Sorry for massive essay. Oh yes, i am having eye surgery next month, i have been on and just finishing my fourth lot of antibiotics for a virus like the flu and chest infection and coughing like whooping cough. sorry again i will stop. i really need help! I have dealt with everything life has thrown at me, BUT THIS? Scared, cathy-anne

      • Anna says:

        I’ve had TN type 2 for 9 years maybe 10. I’ve been pushing myself to keep going for so long and not let it win. I call it the monster in my head that hardly sleeps. I’ve had 3 MVDs, gamma knife and a rhizotomy. They have all had different results and helped for less than 2 years. I’ve taken every seizure med and just found out I have osteopenia from them. So you all should take vitamin D and have your levels checked. I started using an electric acupuncture pen when I can to keep the pain manageable. I went to a chiropractor who treated me with one and it was amazing. I bought mine off amazon and it cost a little more than a visit to the chiropractor! I also trained in holistic energy healing and was able to skip having surgery last year…now I’m not saying I’m pain free. I soooo wish but most days I can at least think of some thing other than how bad my eye, cheek, teeth or jaw hurts. I would be happy to tell anyone about the procedures I’ve had or training. I haven’t been on a TN group or site in years I would get so depressed reading posts. What we have is horrific but I’m not letting it stop me and I’m hoping for the very best for you all💖

  4. Beth says:

    I get the pain mostly on the right side of my face at night when I’m sleeping with my head on the right side. It is very painful but will go if I sit up for a while or turn my head.
    I thought I had an ear infection before diagnosis.

  5. Robyn says:

    “Tic douloureux” French for Suicide Disease as anyone with full blown TN will attest – the pain is unbearable! My neuro has me on Neurontin to control the pain. I asked why he had me on this rather than carbamazepine and he advised me that carbamazepine affects the liver. Using Neurontin also allows me to keep 100 mg. capsules on hand for times when the pain breaks through my maintenance dose of 600 mg. 3x/day. One can take up to 3600 mg. daily if necessary but must be titrated up, so use caution when starting or stopping.

    Do note that my dentist had NO clue why I was complaining about such terrible pain and once I had dx’d myself, I learned that most dentists don’t have a clue about Trigeminal Neuralgia. Shameful!

    As the nerves we don’t want firing such as the trigeminal nerve somehow often find ways to regenerate, I’m not rushing to surgery anytime soon.

  6. Mike W says:

    Yes, I had a flare-up about 2 weeks ago. Mainly on the right side and my scalp gets very sensitive to touch. Lasted 3 days and feels like being stabbed with an ice pick hooked up to electricity.

    • Judy says:

      I was told I had a Atypical neuralgia… I have constant burning, prickling that also, feels like my skull and 1/3 of my face is connected to a tens machine.. can’t have Tregetol due to a reaction Stevens Johnson Syndrome after a month of use. Neurologist says virtual you have to live with it. Neurosurgeon is concern about the risk factor with microvasular decompression….

  7. Becky Brown says:

    Thursday morning out of the blue I had jaw and teeth pain couldn’t figure it out thought I had something wrong with my teeth was going to call my dentist. But I waited took some ibuprofen it didn’t help so I took some Topiramate and it helped a little tiny bit. Talk to my husband when I got home and he said to look up trigeminal neuralgia. Looked it up and lo and behold people with MS have that symptom also. Called my doctor on Friday explain my symptoms by this time it was from the top of my head to my throat behind my ear in my ear my cheek my nose my temple both upper and lower teeth and my jaw. They called in a prescription of Gabapentin right away told me to take it as soon as I got it and I did. They said one pill at night for a week and if it doesn’t get better start on two pills a day. As impatient as I am and the pain was so awful I took two the next day one in the morning and 8 hours later I took one in the evening. And that helped the funny thing is is it lets me sleep at night with no pain this morning I woke up I had soreness all over my the right side of my face but no pain until I ate something then the pain started again it said hello I reared its ugly head and said I’m still here. So I just took a Gabapentin but I hadn’t taken one since three yesterday afternoon. I never knew that trigeminal neuralgia existed with Ms patients I never heard of it before until my husband suggested it. He’s more on top Ms than I am.

  8. Irene says:

    Its irene again. In south africa our doctors get very upset if we suggest it maybe a disease that you read about and therefore became aware. They feel you telling them their jobs, so its not easy for me, right now, so il appreciate any feedback.

  9. Colette says:

    The pain of trigeminal neuralgia is the worst pain I have ever experienced. At first I thought it was a sinus infection. Then I thought I had rotten teeth. All left side. Even the roof of my mouth was numb. All I can say is this is the most excruciating pain I have ever encountered. Taking a steroid therapy at this time. Carbamazepine I see is not a good option since it elevates the liver enzymes. I’m currently on Aubagio. The liver values are high with this medicine and now I have to find another. There are no terms to describe the pain of trigemenial.

    • Gayle says:

      Collette, you have the same problems that I do, I am now taking Gabapentin and it helps greatly. Have had 2 Gamma Knife treatments and 1 Thermal Rhizotomy that has done little to help and made the entire right side of my face numb. I still get flare ups almost daily and take Tramadol to keep them at a manageable level. I also have MS and take Aubagio for that.

  10. LOIS MATTHEWS COLETTI says:

    I have been suffering from this on and off for about a decade. I have had two glycerol rhizotomies, the second of which caused extensive numbness. Since then when it has flared up, I’ve used first tegretol, but that became ineffective with time, then gabapentin with lamotrigine. My pain management specialist did a SPG nerve block and later an ablation. But no long term relief. In fact I had the ablation again and I have the worst pain ever with only minor relief from meds. I’m going to ask for a FIESTA MRI to see if I have the problem of an blood vessel wrapped around the trigeminal nerve. I’ll see what the doctor says. See him on Weds. this week (Dec. 13, 2017).

    • Larry Hayes says:

      It would appear they can’t tell you for sure. I have tried to be “repaired” several times but they just say they can’t tell where the problem is. I do NOT have MS but have had Level 1 TN for 20 years and now have Level 2 TN for the last 10 years. I am getting too tiered to continue fighting this pain. it has ruined my life and made me get so close to giving up you have no idea.

  11. Diane says:

    WOW! This article said it’s estimated that between four and six people living with MS will suffer from trigeminal neuralgia. More people than that have commented on this article…lol.

    I spent over 2 years suffering from intermittent tooth pain in an upper back dental crown. My dentist, after taking multiple X-rays and listening to me describe the pain, said he was honestly seeing nothing that could be causing the pain. The fact that my pain would last for a couple of days, and then be gone for a month or so, was very unusual for any type of issue that could be causing the type of pain I was having.

    I finally came across an article about trigeminal neuralgia a few months ago and ran it by my dentist. He said it was highly plausible with my MS that it was the cause of my intermittent pain. I was thrilled to at least have some type of explanation for what I swore was a cracked tooth or abscess. Sometimes just knowing what it is makes it a tiny bit more tolerable.

    • Diane, did you have a cone beam, 3-D, x-ray, taken by your dentist? This is the only type of x-ray where dentists can see cracks in a tooth and many other pathologies that other x-rays don’t. Most general practitioners do not have cone beam machines as they are quite pricy. Personally I would go to a root canal specialist for this x-ray and proper interpretation. When you have a bad flare up have an oral surgeon anesthetize your mouth. This is much less expensive than going to an ER.

  12. Monica says:

    Hi everyone! I have been diagnosed with MS 18yrs now. For as long as I’ve had MS this nerve pain in my face is nothing I have ever experienced for. I went to get my tysabri medication last Friday and literally the next day I started to feel these pains. I thought oh this is nothing and will go away but, has only gotten worse. Now today is Wednesday, I cannot sleep at all bc now any slight movement sends this excruciating pain around the left side of jaw, tooth with no cavities, electric shock type feeling that lasts for 30 seconds or longer! I don’t know what to do bc now I’m loosing sleep and is a stay at home mom to my 3 year old daughter. I can’t handle the pain anymore!!
    I can definitely relate to a lot of your stories but at this time I’m just trying to distract my self from it happening again. I’m just trying to stay positive until I can call my doctor again in the morning.

    • Yve says:

      I have MS and experiencing eye pain, headache and pain in cheek and jaw. My GP diagnosed me with Trigeminal neuralgia but have an appointment with my neurologist to see why he suggests.

  13. Carson says:

    I’ve had MS for 18 years, the pain in my jaw was worst than child birth I told my doctor. It nothing I’ve ever experience. I went running to my dentist nothing, told me it was my MS. I’ve been on three different medicines. Called Dr again today, no answer yet. I heard about the surgery. How long does one have to try meds.Before Dr will consider surgery
    I am not on any MS medicine I can’t take any of them so far. But my Dr always seems to push me to a new one, I told him no, because of PML. My 2nd great grandmother died from MS, my grandfather died from PML. That’s why I don’t take any. Do we have to put up with this pain? It’s awful pain. What are we suppose to do.

  14. Lindsay says:

    So, I’ve had jaw pain for 4 moths now. Dentist says teeth are fine. Just this last couple of days, I’ve had face drooping, pins/ needles in the ride side of my face, severe headache. Ct scan showed nothing, neither did blood tests or ecg. Could my problem possibly be this? I can’t open my mouth more than about an inch and am now really struggling to eat or brush my teeth. X

    • Sue says:

      Sounds like it is TN. I struggle to eat and brush my teeth on my right side. When I had my MRI they had to focus on the Trigeminal nerve area. I have 2 blood vessels pressing on the nerve. One on each side. My dentist actually said I must have TN and sent me on. I’m taking Carbamazepine and Gabapentin. I find eating warm foods and drinks help. No spices or citrus. Carbs work well right now. Good luck! Sending prayers.

  15. Robert Firestone says:

    I have had MS since the summer of 1997. It caused Tinnitus in my left ear. Not super loud, but enough to keep me awake all night. I went to see my ENT doctor he couldn’t find anything wrong but I then went through the extensive hearing tests (which I had just done two weeks earlier). The new tests showed an 80% drop in my hearing on the left side (where the Tinnitus was). I then went to see a Neurologist. I had several MRIs of the brain. He couldn’t see anything. Changed Neurologists who immediately saw a lesion on the MRI film and told me it could be MS, but as I had been able to ignore the Tinnitus for a few years, did not think I should start taking any medication. Until the fall of 2012, I had about a half dozen mor MS attacks. Each one was confirmed with an MRI showing a new lesion in my brain. Each attack was the cause of a rather mild attack each one lasting a week or less. In the fall of 2012, I had a dream. I was watching a man holding a stainless steel rod in a fire until it was white hot. The man turned around and stuck the rod in my lower right jaw and the pain was unbelievable. That woke me up and the pain was still there with a 100,000 volts added to the pain. I screamed. Normally I can’t scream because my vocal cords won’t allow me to get that high of a sound (but they did that one time). With a lot of pain (any tounge movement or jaw movement exacerbated the pain) I told my wife to call my Neurologist (at was about 2 AM). She did and he called my pharmacy (luckily a 24 hour pharmacy) and placed an order for carbamazepine. It was a ten minute round trip and I was in agony until she returned. I took one pill and within minutes, the pain was gone. I had trouble tolerating medication for a couple of days but when I was able to tolerate it, its effectiveness began to lessen. Over the next year, my Neurologist began adjusting the dosge of carbamazepine and added gabapentine. When I reached 5 doses of each pill daily, I was able to tolerate it and my pain only flaredonce or twice a week. The side effects of the drugs were terrible I was always a little dizzy, my sense of balance was terrible and wlking became very difficult. In July 2016, my wife handed me an article taken off the Internet that my Neurologist had handed to her and she had forgotten to show it to me. The article was about Trigeminal Neurology and MS. It mentioned a treatment called Gamma Knife and I told her ‘THIS IS ME’- I called my Neurologist. He agreed that it was possible and gave me contact information for a Neurosurgeon in the area. I made an appointment and took my stack of MRIs which were now on a DVD. The Neurosurgeon showed me the root of the Trigeminal nerve and I could see an MS lesion right across the middle of the root of the nerve. We made an appointment for the Gamma Knife procedure right then. On August 12, 2016 I had the Gamma Knife procedure. There wer three doctor involved. My Neurosurgeon, an Oncology Anesthetist, and a Nuclear Physicist whose part was to adjust the Gamma Knife machine for the correct spot to focus the radiation (130 different beams which did not affect anything except the spot on which they were all focused. After the procedur I had to wean myself off the drugs. I immediately dropped from five doses of Carbamazepine and Gapapentin per day to four doses and ove the next four weeks dropped one daily dose each week. then stopped. I was totally pain free, but stilll had to deal with the effects of the drugs. I was 5 inches shorter, and had a herniated disk on my spine that had brushed against the inal cord and caused the sciatic nerve to weaken and ccause both my left knee and left ankle to collapse about once a week. Then 16 months later, Trigeminal Neuralga stuck again. My neurologist had retired, so I called my new Neuroligist who presribed a new version of Carbamazepine. this was Oxcarbepine. The pain this time was a fraction of what the original Trigeminal Neuralga attack had caused. I called the Neurosurgeon and made an appint with him and the Oncology Anesthetist. I had another MRI and gave my Neurologist one copy and took the other to the meeting with the Neurosurgeon and the Oncologist Anesthetic during the meeting all three doctors got on a conference call. It was determined that ther wa a new MS lesion slightly away from the root of the Trigeminal Nerve which would affect where they would focus the Gamma Knife. I had my second Gamma Knife procedure on March 30, 2018. As of today, (May 1, 2018) I have been able to lower the dosage of Oxcarbepine by about half, but it is taking longer to be pain free. The neurosurgeon told me that there would not be another Gamma Knife procedure. They would go to somthing else if the pain did not go away completly, or if it got worse. He said we would discuss those other option if and when it became required.

  16. DAVID JACKSON says:

    “It’s estimated that between four and six people living with MS will suffer from trigeminal neuralgia.

    4 and 6 out of DH

  17. Nicola says:

    Wow ty guys for sharing u jurneys I’m highly medicated on all the drugs u say my doctor won’t tell me if it’s ms I think nothing showed except white matter in my neck I lose balance I do jerking on days to times a month I have brake threw pain I call it I have a few more deasises I think that set it off if that’s possible I have endometriosis of the utarus were cells internal attack me on menstrstuin days or 2 week before I have chrones and ultasive colitis I’m sure its ms tonight my sister rang she was in hospital same symptoms in ear though she was having a stroke I’m like that 2 times s month minimum anyone else like me in a bit scared also xxx

  18. Nicola says:

    I smoke canibis also helps after infliximab treatment for chrones theses ms type symptoms came worse does anyone else know what happened I’m on tegrotol gabapentin anatriplin works sometimes sometimes not I’m in constant pain with all my deasises each day any specialist Endo ms pain around my body daily xxx

  19. Nicola says:

    Forgot to say I have TN as u caj tell I medicated highly can’t type or make Sence can anyone else tell me why this happened is it faulty geans xx

  20. Pam says:

    My husband was diagnosed with TN in July of 2018, but he never had dental pain, burning/ice pick feeling on the right side of his head; arms burning, facial/scalp itching and scaling. He is on 200 mg of extended release carbamazepine 3times a day, 600 mg of gabapentin, 3 times a day and 20 mg of baclophen 3 times a day. His arms and head have quit burning, as long as he takes his meds on time but the itching and scaling are ridiculous! Does anyone else have these problems? Also, when he brushes his teeth, he complains about having trouble about his hand being spastic and not being able to keep the toothbrush in his mouth at times?

  21. Adam Muheua says:

    Please help!
    – Am 55 yrs old have been diagnose with Hemicrania Continue/TN/cronic sinusitis.
    – Suffered for 30 years
    – Have been on different anti-epileptic drugs – all of them (like prednisone, Sumatriptan, Botulinum, Jurnista, Lithium carbonate, Verapamin, tegretol, Cymbalta, Vimovo, Fluoxefin etc. – No help
    Indometacin – no help
    – Now only on pain killers – (Combination of painkillers and antihistamine drugs brings slight temporary relieve)
    Symptoms:
    – Burning sensation mainly in the left nose
    – Pain mainly left side of the head
    – Blocked nose
    – Pain nostrils
    – Sometimes can feel the pain in the teeth (left side)
    – Pain eye sockets
    – Tender when pressing on the affected ares
    – More when sleeping/during/after sleeping
    – Pain 24 hrs for 30 years
    Triggers:
    – Stress
    – Cold air/breeze
    – When angry
    – Perfumes – no. one trigger
    – Sleeping – no. two trigger
    – Alcohol
    – Traveling

    Please help!

  22. Jane says:

    Thank you for all the information guys. It’s a horrible thing to happen. My husband has MS. He was doing really well on a plant based, oil free diet as recommended by OMS (overcoming MS). His symptoms have struck when we have been rather sloppy and careless with the no oil part of the diet. I think this is why he is in so much pain.just wanted to say maybe you could look at OMS and try it for yourselves. Good luck x
    Jane

  23. Vickie says:

    Need to be evaluated for a CSF leak. No one knew I had a leak and I felt I was dying. If you have a leak the brain falls/drops and lowers an artery on the Trigeminal nerve. The electric shocks to my face were definitely a cause for thoughts of suicide.

    I also had Chiari. Each time I got a leak I got Trigeminal, Chiari, headaches, difficulty walking, & poor hearing. I did research & learned about CSF leaks.

    No one could find the location of my leak except Dr. Schievink at Cedars Sinai in Los Angeles, CA. After finding each CSF leak, Dr Schievink at Cedars Sinai did a leak repair and the CSF fluid pressure accumulated again floating the brain back up taking the pressure off the artery on Trigeminal Nerve and removing the suction of the cerebellum that caused Chiari. The cerebellum went back to original position.

    Had 5 CSF leaks repairs and a syrinx surgery. Since 2015 no longer have leaks, Chiari, or Trigeminal Neuralgia, and severe headaches.

    At Cedars Sinai, Dr. Schievink has a Foundation for CSF leaks and a special myelogram for detecting leaks. I live in Florida but I flew to Cedars Sinai because he is the best for CSF leaks and I was deperate. With my first leak I had less than 2cm of CSF fluid pressure in my spinal cord when a myelogram was done. Normal pressure for CSF was 10cm-20cm. (2009).

    Check with Neurologist to get a myelogram to see if your CSF fluid pressure is low and you could have a CSF leak. CSF controls much more than we understand.
    (I went to Dentist 5 times wanting my teeth pulled due to the terrific pain, Trigeminal Neuragia, which he refused to do as nothing wrong with my teeth or jaw).

    It may not happen for everybody this way, but it did for me. I did not have MS. I am a RN & I did my homework for my situation. Blood patches were not done for my leaks. They can usually be done in your own area, but I wanted surgical repairs. It’s your choice. I was very lucky. Not everyone is. I also had a great surgeon.

  24. Tammie says:

    I had my first really painful tn attack ( I mostly experience a lot of numbness ) it lasted 2 days off and on . During the 2 days my cheek on the left side ( where most pain was,) was red and on the 3rd day the pain had subsided but my skin on my ck feels as dry as if I had a major sun burn on it. It’s Still completely numb , redness is gone but the skin feels so dead . I don’t ever hear anyone talk about this happening to them . And I alone with the symptom ?

  25. Please help says:

    I have been living with TN for two years. I am a dental hygienist who had dental work done I had three root canal come on the top and two on the bottom. I had the bottom retreated where they did find canals left untreated. My pain is in the right side burning pain that never goes away.. my bottom teeth feel weird in the socket when I suck my cheeks together . My top tooth hurts occasionally. My right side is burning constantly. I feel like I have a ear ache sometimes. And my teeth that were treated hurt still with the burning feeling. I am in the dental field and am dumb founded a endodontist sent me to a neurologist. They took xrays at the endo said clinically he can’t see anything they put me on the same medicines many of you are on. I’m not getting relief at all and still want to pull my teeth out. I don’t know what to do I don’t want to live this way.

    • Helen says:

      I would strongly suggest seeing a surgeon who performs trigeminal surgery (ask your neurologist for referral). Trigeminal pain becomes worse over time. Medications become less effective. I have had trigeminal since 2000. I have MS which makes treatment a challenge. I have had 4 surgeries. Each one was successful – unfortunately no treatment is permanent and pain free becomes shorter after each surgery. Now on low dose gabepentin. Some burning and numbness but I can deal with that.

  26. Donna Wallace says:

    I have atypical trigeminal neuralgia. I have been everywhere—Cedars, UCLA, Johns Hopkins. I cannot take the drugs because I itch to death with everything. The doctors day they can do nothing. Recently, I was diagnosed with fibromyalgia by a specialist, Dr. St. Amand, in southern CA. He says people with Fibro can have trigeminal neuralgia. He has a special protocol, which has been successful with many people. I was doing well on it, but, now, I am itching, perhaps from the drug, Gusifenesin, which is over the counter and usually has no side effects. I really hope it’s not that. Most people think of Fibro as only a muscle, joint, and fatigue condition, but it has many other symptoms. Do some research if you think this might be you.

  27. Yvonne M Koulikov says:

    Was I happy to find this site!!
    For over 5 years I suffered these “attacks” as I called them that no one seemed to be able to diagnose. It would come on suddenly, starting in my temple and within minutes would radiate to my eye, jaw, the entire right side of my face. It was electrical shock pain and excruciating! The attack would take about 3 minutes to become full blown and initially last about 6 – 7 minutes. The cycle would last about a month with the frequency, duration and intenisty increasing with every attack. At the most severe point in the month, I would have an attack that woul last about 30 minutes, and would come every 2 hours or so. Then I would go a month without an attack and then the cycle would start again. I was totally diabled when these attacks would occur, screeming with pain (and I have a very high pain tolerance), drooling, felt as though a knife was going right trough my eye and ear. I had suggested MS as 7 of my family members have MS but I was told I don’t “present” as an MS patient… These attacks all while trying to work and raise my children. I have not had an attack in over 5 years, miraculously, but now have terrible joint pain, fatigue, graves disease and sjogrens. I am now experiencing eye pain and occaisional numbness on the same side. I would love to hear from others who had a remission period and how they were diagnosed. I am going for am EMG this week for numbness and pain in my toes. I would not wish TN pain on my worst enemy.

  28. Amanda Hartman says:

    I have had three KNOWN neurological issues before experiencing those: Fibromyalgia, Dystonia, and (new as of 2018) Intracranial Hypertension Headaches caused by REPEATED Lumbar Punctures made necessary by Fungal Meningitis (officially diagnosed in 03/2018). It appears that I have TN2, which is a more constant pain. After a wicked series of “migraine”-type headaches (on my right versus my traditional left side), for six days, I came down with THIS pain. I, actually, diagnosed myself, and my Neurologist confirmed the diagnosis the following day. NOTHING IS WORKING to take the pain away, though the anti-convulsant blend he has me on DOES lessen in for manageable periods. I’m trying to get into the TN Clinic at UCSF here in CA. Has anyone ever been there? Also, those, who recommend chewing gum… would you characterize your TN as TN1, or TN2? My prayers go out to all of you, who have struggled; this is pure torture.

  29. allan smith says:

    i have suffered with a form of neuralgia for many years which caused me pain on the top of my skull and over my right eye and right cheekbone.two or three times a year lasting for several days.i am in my early 70`s and last week for the first time i was struck with a burning, electrifying, horrendous pain in my gums, teeth, upper & lower right jaw, right cheekbone and nostril. to ease this pain i hold an ice-block on the low r/s back of skull, this works for me.

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