Multiple Sclerosis Pain Explained: Trigeminal Neuralgia

Multiple Sclerosis Pain Explained: Trigeminal Neuralgia

Learn about MS with me, Aaron Boster MD! I started this channel to help my own MS patients learn between clinic visits. I use easy-to-understand language to provide accurate and approachable Multiple Sclerosis education. So, if you’re impacted by MS and want to up your game, make sure to subscribe to my channel right now!

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ABOUT This Video: In this video I’m going to teach you about trigeminal neuralgia, an unusual pain syndrome oftentimes seen with Multiple Sclerosis.

The underlying cause of trigeminal neuralgia is damage to the trigeminal nerve, the 5th cranial nerve that is responsible for facial sensation. In MS, damage to the brain structures surrounding that nerve (such as the nucleus) can also cause trigeminal neuralgia.

Pain is describes a sharp, electrical "jolts" in the jaw/mouth, cheek or eye/forehead. Some patients first seek dental evaluation thinking the pain is from a bad tooth.

We can treat the pain of trigeminal neuralgia with “neuropathic pain medications” such as off label use of anti-seizure drugs. For medically refractory TN, we often consider a procedure called gamma knife.

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WHAT ABOUT YOU? What has been your experience with trigeminal neuralgia? How do you best describe it to others? Please leave your comments below!

Also, if you've been successfully treated for trigeminal neuralgia, please share with us what worked for you!

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These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a 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 or seen in any of our videos.

[lindamadarik]

I too went to a dentist. I was referred to an endodontist. Both were looking at the roots of my teeth as they suspected I needed a root canal. None of the tests indicate that there is any damage to the root. This is a recurring and excruciating problem, which I have not even mentioned to my neuro PA as I figured it was a tooth issue. So thanks for shedding some light on this issue as I honestly had no idea it could be related to MS.

[LindaStanley-gj]

I have Ms and trigeminal neuralgia in the left mandibular nerve. I did the dentist route as well, and an oral surgeon is the doctor who diagnosed me. I am currently on Tegretol for years now and have it under control. The pain left me in tears, it affected my tongue as well, couldn't talk, eat or drink without screaming and crying. Thank you so much for addressing this horrible Ms symptom. I was diagnosed with Ms in 1982, age 22, but the neuralgia did not start until 2013. 7:10 3

[tailsntrails]

Trigeminal neuralgia has changed my life completely. It is nearly impossible to manage and I’ve seen 3 neurologists.

[beverlytitchenell]

Wow.... so thankful to find this video and all the comments. I have MS (diagnosed in 2015) and this is my first experience with TN. I, too, visited my dentist thinking it was just horrible pain in an upper tooth. My dentist saw large cavity and filled it but the pain only worsened. She then told me that it looked as if the tooth may be infected up in the root, and needed to be pulled. She put me on a strong antibiotic for 10 days and made me an appt. with an oral surgeon. I took the full round of antibiotics but the pain didn't get better. I finally got the tooth pulled and the following night - after the extraction, the teeth and gums on the same side - but on the bottom - hurt so bad I thought I would loose my mind. Figured it was just a result of all the pressure put on my mouth from the extraction. It did get better after a couple of days. I went to see my neuro. after the extraction & we assumed all was well. Fast forward a couple of weeks - same terrible pain where the tooth was extracted - I figured it was a piece of tooth or bone still stuck up in there, even thought it had healed well. Back to oral surgeon for xrays and nothing was wrong. It had healed perfectly. Then the pain came back to the bottom too. Just excruciating. Constant throbbing with bolts of excruciating pain. I was given the diagnosis of TN yesterday by my neuro. I started this morning on a regiment of prednisone, am taking 10 mg of baclofen 3x a day, my usual gabapentin and tylenol around the clock. So far the pain is under control and I pray that it stays that way. Any help with this is greatly appreciated.

[reginacarroll]

I experienced Trigeminal Neuralgia at age 22. I had dental exams, skull X-rays, endontist referrals to no effect. It was a med student in the middle of the night in the ER who twigged. I was treated with carbamazepine with very quick resolution of the pain. No one connected this with the possibility that I might have MS. After a long and winding road of many seemingly unrelated symptoms I was diagnosed with MS at 37. Looking back trigeminal neuralgia was likely my first symptom of MS and was treated successfully with carbamazepine and dismissed as not significant with no follow up.

[miwito]

Diagnosed with Fibro after multiple low back disc injuries. With Central Sensitization, depression and anxiety with panic attacks. NOTHING sums up my experiences with my neck, face, tooth, eye, ear pain better than TN. My pain could be any one of those described in this video throughout my day - PAIRED with dizzyness/vertigo and issues with my eyes like blurry vision or sensitive to light/ hard to focus mentally on anything. Racing heart and tight chest out of nowhere throughout the day. I have tried many medications, and what has helped best is building a routine, waiting via. Resting, and positive outlook. Dont over research or you'll end up messing with your mood and head.

TRY LIVING LIFE WITH THE DISABLEMENTS. Inspire others. Love always

[vickieisabellalaurie]

Yes, it's horrendous! Feels like an icepick going through your skull clean through the roof of your mouth, while chewing aluminum. I've screamed and not ashamed to say, cried like a baby from an attack. Mine is controlled by carbamazapine and most of the time it helps.

[meloneyparker]

This is by far the BEST video on Trigeminal Neuralgia I have seen. Thank you!

[andrehilz]

Diagnosed with MS in 2004. A couple of years ago started to have TN symptoms. In two weeks have an Gamma Knife appointment in Tel Aviv. Hope this treatment helps.

[phielyne]

Hi Dr. Boster. I have to first say thank you for covering this topic. TN doesn't get a lot of attention so this was a welcome sight for me. I have Trigeminal Neuropathic Pain that began after extensive dental work. Most "classic" TN treatments are therefore not an option for me as my trigeminal nerve is irreversibly damaged in the maxillary branch. I have tried countless oral medications and what works best for me is the extended release version of Trileptal (or Oxcarbazipine), called Oxtellar. Because my pain is constant, keeping a steady level of meds in my system really seems to work best. I have seen many dentists, ENTs, neurologists, neurosurgeons and orofacial pain specialists in the last 6 years only to keep being told that there is no better option than oral meds for me. It is disheartening but I continue to hope that one day there will be a treatment for me, or maybe even a cure.
Again thank you for covering TN. And thanks for being the best MS doctor my husband (your favorite Viking) and I could ever ask for.

[christinagay]

I am newly diagnosed with MS (end of March) and I believe it was an episode of Trigeminal nerve pain that sent me to the ER and led to my MRI and ultimate diagnosis.
Again, I'm still figuring things out but I have daily pain and take Gabapentin and Carbamazapine daily to help mellow out the pain.
It is such a horrible pain, not one you could just live with or remotely function in any way. It scares me to have this and the idea that MS damage can cause such a horrible, unthinkable pain.

[msingh]

Firstly want to thank Aaron for the time and effort he puts into his channel. I’ve learned so much about MS here and it’s presented in a way that someone without medical background can understand.

I’ve got a dull numbness in my right cheek that is intermittent and appears to track along the maxillary nerve. There’s no severe pain. GP has made a referral to neurologist but the appointment won’t be in months. Has anyone experienced this as their initial MS attack?

[rxxs]

My Neuro spotted a small lesion on my trigeminal nerve. He diagnosed it as the cause for my five years of intermittent excruciating TN pain. First was Lyrica for a year until it failed. Next Tegratol for about two years. Finally in 2017 a fantastic neurosurgeon here in Sydney did a one day 'Ablation'? which has kept me numb faced but pain free for four years and counting.
TN was the most difficult challenge I've faced with my MS journey so far, and that includes permanent 'legal' blindness from severe optic neuritis in both eyes.

[ElizabethKarroll]

I had TN that started small in 2006 in the mandibular branch. Thinking it had to be dental related, I had a wisdom tooth pulled, 2 root canals which then needed 2 crowns. That didn’t work. I begged the DDS for novacaine, but they said no. I told my Neurologist about what was going on. They said TN. They put me on Neurontin. When it got worse they added elavil, then added Tegretol. I finally saw a Neurosurgeon in 2009. I opted for surgery. I did the radio frequency ablation in 2009. Once in a blue moon I feel it but it’s been mostly gone since 2009. I know that I have a couple of large plaques/lesions on my brain stem. I pray it never comes back. The shocking burning severe pain was the lower right lip, under the teeth & up my jaw. Intermittently, I couldn’t speak, eat or brush my teeth. It was worse than childbirth with no meds.

[tegan]

Please more videos on this and emotional support for pain and also about feeling to die because we cant take the pain.

[timothykosto]

I am a 79 year old female MS patient whose principal presentation is Trigeminal Neuralgia (TN). My MS history began with Optical Neuritis about 62 years ago. When TN presents the best treatment includes a near immediate infusion of 3 or 5 days of Solumedral followed by Predisone. Tregital and Neurontin succeeded in an unacceptable feeling of the loss of mind control over my entire self. Ampyra administered to improve ambulation succeeded in increasing the frequency and severity of TN. Gamma Knife offered no relief from TN and increased the frequency and severity of TN. At this age the long term effects of MS on energy, balance and cognitive issues are rendering me an invalid, TN attacks not withstanding.

[katydid]

My husband had gamma knife surgery by Dr Warnick from Jewish Hospital in Cincinnati, Ohio. Immediate relief. Wonderful doctor. Great bedside manner.

[tailsntrails]

I have type 2 trigeminal neuralgia which is extremely painful sharp stabbing and constant pain that never stops. I am not a surgical candidate and I have almost no relief from meds.

[krispardue]

Thank you for this awesome video. I go to NC Baptist hospital Wednesday to decided treatment. I've had MS 15 years, optic neuritis I over came now this. I also have had Myasthenia gravis since 10, I'm now 53. Treated at UNC. Ivig txs since 20 yo. But this TN is kicking my tail. I never imagined pain like this. Like a ice pick stabbing my inner ear constantly and also under my jaw. The tongue bed. It's crazy bad. I really want the microvascular decompression cause I never want this again. My neuro started me on 5 different anticonvulsants at one time...that in itself was a nightmare. Went to Baptist er and Drs took me off all but tregatrol. I've read we...i don't want on these kinds of meds. I still have ear pain. Even hurts when I blink.
I want relief and not the terror of wondering when it's going to hit again

[KatCameron]

I was just diagnosed with this. I called it my ice pick pain for months, a sharp, dull intense pain in my left temple. That pain became more and more frequent then spread down my face into my teeth neck and forehead. Confirmed lesion on my pon(previously diagnosed) was the cause of the eventual onset TN.