Sparky Jaw: Researching Trigeminal Neuralgia

By Anita Williams

3 min read

I always called it 'sparky jaw.' Since I was a child I would have this incredible pain along my jaw. It felt like an electric cactus was stabbing my face from the inside. This feeling would come and go with no rhyme or reason. I thought that this was normal. I saw and heard about how it feels to bite into a lemon or tasting something sour. People would make faces and talk about the feeling in their jaw. To me, they were feeling the same thing that I was. It was not true then and is not true now.

What is trigeminal neuralgia (TN)?

I was experiencing trigeminal neuralgia (TN) without knowing it. TN can cause severe pain and impacts the trigeminal, or 5th cranial nerve, which affects many parts of the head and face. The pain can last from a few seconds to a couple minutes. My lifelong sparky jaw had a real name, and it was a symptom of my multiple sclerosis.¹

Is trigeminal neuralgia tied to MS?

I found out about TN the same way I learned about my other odd MS symptoms: Google. After being diagnosed I set up a shortcut I could use on a Google search. When I type “multisc” I get the words multiple sclerosis in quotation marks. I would then add “and” plus whatever symptom I may feel. Imagine my surprise when my search for “sparky jaw” returned an actual result. Multiple sclerosis is a weird kind of chronic illness! Because it can affect any part of the body, MS can be looked at as a cause of a variety of symptoms.

I should have not found myself slack-jawed, so to speak, at this new information. I tend to be a person who does not look to multiple sclerosis as an explanation for maladies. I have failed to get help for issues because of this failure. I could have learned more about TN earlier had I known I had it.

My TN research journey

Once I found the term “trigeminal neuralgia” I read as much as I could. I made sure to not only read the first few Google results and I avoided ads, prominently displayed or not. I wanted good solid information that I could use to better understand what had been happening my whole life. Searching is the easiest part of learning about something. The real work comes in deciphering what is good data and what is not. I did not have a problem with TN, because it is rare enough to not solicit the attention of the disinformation mob.

I learned a lot about this painful disease from what exactly it means to have it to what kinds of treatments are available. Research has been my friend from day one, and it continues until this day. It not only helped me to understand multiple sclerosis on the whole, but has guided me in finding out more about my own body and the weird stuff going on, like trigeminal neuralgia.

Moving forward with knowledge

Unfortunately, there is no real cure for trigeminal neuralgia. While this is somewhat devastating news, I am comforted by the fact that I know more about TN. I never knew this was a medical condition and part of the manifestation of multiple sclerosis. Having this knowledge has empowered me.^1,2

I would heartily recommend that we, as people living with MS, continue to research our disease. Not just research on a theoretical level, but on a personal one by looking into what ails us. You may get a surprise like mine or just be better educated. I did both, and now TN is a symptom I can live with because I know more.

Have you found out about an MS symptom the same way? I would be interested to know.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Therry Neilsen Moderator & Contributor
Anita, I had a lot of jaw pain in my forties, and my dentists (plural deliberate) tried a LOT of things, including grinding down my teeth. They finally diagnosed bruxism, another jaw problem common to MS, and prescribed a night guard, which finally helped.
toddlius Member
I was dx'd with TN in my early 50's. I now take Vimpat tablets 3 times per day, as well as Carbamazepine as needed.
1. toddlius Member
 <inline-mention username="toddlius" user-id="4097714"/> says, "Yes, they both help. My usual pain is in my lower-left side of my lip when I eat. Or the inside of my left cheek. The left-inside of my cheek is primarily when something touches it, usually food. The meds make it so I can eat, being careful to keep everything on the right side of my mouth. I just swallow most food, chewing as little as possible." @Lori306289
2. Lori Foster Member
 I wish you were not in so much pain, @toddlius, but I am glad the medications at least allow you to eat. Sending the best of all wishes! - Lori (Team Member)
kimberlybthatsme Member
Anita, what a great article! I have had TN for years now and only recently found out the name of it. I use to think I was having infection within my jaw/teeth/mouth. To me it feels like someone has taken my skin, pulled it back and took a wire scrub brush to the raw nerves. It literally hurts to blink if my lashes touch my skin! Sometimes it's not that severe but most times it is. Luckily I only get it 3-5 times a year. It last anywhere from a few hours to a few days. My docs know about it but no one has approached me on what to do about it. I know there is no cure so I just figure I deal with it with the rest of the pain I deal with. My body rejects opioids so I'm on muscle relaxers and anxiety meds and some HTC oil and CBD oil but that's it for pain. I have discovered other wierd MS issues that my MS doc told me had nothing to do with my MS. One was when I lost my hearing. It was only in one ear but it freaked me out bc my hearing is off the charts. I felt like I was partially deaf. My PCP said I didn't have an ear infection so she had no idea why I couldn't hear. So when 2 docs said they had no idea, I went to Dr. Google and BAM! There it was....hearing loss was an MS issue (rare). It lasted just over a month and then I got it back. I never said anything to my MS doc...what's the point. MS has so many weird symptoms for me I usually just shove everything under that umbrella and move on. Hope your day is gentle. Thanks for writing this...and I learned how to google MS stuff! Thanks for that tip!
1. Lori Foster Member
 My heart goes out to you, <inline-mention username="asbailey1949" user-id="3947218"/>. I hope that some day the Trigeminal Neuralgia just stops and that you never get it again. Have medications done anything at all for you? Please know that we are here for you, even if you just want to vent. Gentle hugs! - Lori (Team Member)
2. Lori Foster Member
 Hi <inline-mention username="kimberlybthatsme" user-id="3958502"/>! I am glad you do not get Trigeminal Neuralgia symptoms more frequently and that you have learned to advocate for yourself. I hope it's a very long time before your next episode or that you never have one again. Best wishes! - Lori (Team Member)
Sonotemo Member
I will never forget the day I got my first shock. It’s been a little over two years now and I finally can say I’m not in pain DAILY!! I do have major anxiety because the shocks come and go as they please. I used to wake up my children screaming and crying in pain. TN has been the worst thing I’ve ever had to deal with. It’s made me very lonely and honestly it’s hard to have a social life when you can’t stick to plans or even make plans because you just don’t know if your face will go crazy. I’m 31 and it’s sad to say but I never leave my house without my medication. I’m praying the worse days are behind me. I also pray for us and anyone who has to deal with this rare disease. Thank You for your story ❤️
1. Lori Foster Member
 I am so glad it helped, @Lurch! Thanks for sharing! - Lori (Team Member)
2. kitsy Member
 <inline-mention username="Sonotemo" user-id="3969743"/> I am so sorry! TN can be very intense. I hate that it has left you feeling isolated. I hope that some of the comments to this article will lead you and your neurologist to a solution that helps alleviate the worst pain ever.
snowcap Member
What a great idea to post about your search tips! Surprisingly, a lot of people don't know simple things like using the quotation marks so you get results for only "multiple sclerosis" together and everything that has both the word "multiple" and "sclerosis" even if not together. So I bet this will be really helpful for many people!
TinaP303 Member
TN was my first symptom and is what led to my MS diagnosis. Fortunately I don't have a lot of flareups, but when they happen it is bad. I just want to remove my entire jaw....
1. Tamara K Sellman Moderator
 <inline-mention username="TinaP303" user-id="4096611"/> I'm glad you don't have a lot of flareups! I wish there were better ways to treat this symptom so that it's not so debilitating. (hugs)
tkosto Member
Perhaps those who suffer from TN and take Ampyra for walking and stability improvement ought to be aware the Ampyra promotes TN attacks. Good documentation is available from the MS society of Great Britian. In my case the TN has plagued me since 1984, the MS since 1965. While Ampyra provided great walking endurance and improved balance stability the increased TN attacks became so severe I did not respond to Solumedral, Gabapentine not Gamma Knife treatments. TN attacks are my worst symptom of MS. After discontinuing the Ampyra the solumedral could be used to control the TN. See for some details: <a href='http://trigeminalneuralgia-ronaldbrismanmd.com/Trigeminal-Neuralgia-MS.html' target='_blank' rel='noopener noreferrer ugc'>http://trigeminalneuralgia-ronaldbrismanmd.com/Trigeminal-Neuralgia-MS.html</a> or from the UK: Simon Webster Information Officer MS Trust Spirella Building Bridge Road Letchworth Garden City SG6 4ET Tel: 01462 476700 Fax: 01462 476710 The MS Trust's website - <a href='http://www.mstrust.org.uk' target='_blank' rel='noopener noreferrer ugc'>www.mstrust.org.uk</a>
Tamara K Sellman Moderator
Thanks for this information, <inline-mention username="tkosto" user-id="4096959"/> I hope it will shed some light for those who are struggling with these awful MS symptoms ~Tamara, community advocate
kitsy Member
I am so sorry for all of you who suffer the pain of TN. When I got my first shocks I was in the midst of getting a diagnosis, my neurologist prescribed Carbamazepine 2x/day and the pain wasn't nearly as bad. When I got TN on the other side of my face, my neurologist gave me a probable MS diagnosis and prescribed Carbamazepine 4x/day to dampen the pain. Eventually, the meds weren't enough so I've had 4 radiofrequency rhizotomy surgeries to help with the pain. Each time it took months to heal and then only lasted a few years. A couple of months ago Old Sparky was back. I can't take more Carbamazepine and I dreaded the surgery, so I began noting my triggers. I learned that caffeine is the worst followed by spicy and tart foods - my favorites! I dropped caffeine and all other dietary triggers and I am very happy to report that the pain is now minimal. I did Google "TN caffeine" after the fact and learned it has been shown in studies to trigger TN. 
1. Lori Foster Member
 That's wonderful, <inline-mention username="kitsy" user-id="4024886"/>! I never would have thought that dietary factors might contribute to TN. I am so glad the changes have helped. Thanks for sharing this! - Lori (Team Member)
sheila0313 Member
I found out about MS hugs the same way. Extreme pain in my side. Drs thought I was crazy bc there’s nothing in your side to cause that kind of pain. I suffered with it for Years wondering it it was just in my head. Then I read about it on this site and I couldn’t believe it. It was exactly what I had experienced. Even though there is nothing that can be done other than just comfort treatment it was such a victory to find out what it was!!!
westexer Member
I have been taking Tegretol daily for Trigeminal Nueralgia for close to thirty years now. Up until about 3 years ago I always still had issues with my lower back jaw, tongue and salivary gland on my right side. However, after much research, my doctors added a diagnosis of Glossopharyngeal Neuralgia as well. Damage to the ninth cranial nerve. They added Phenytoin to my daily doses of Tregretol and I got immediate relief and rarely ever have breakthrough pain from either the TN or GN anymore. Changed my life for the better! If you have trouble with biting your tongue or a stabbing pain underneath your tongue on one side or one side of your mouth consistently feeling dryer than the other, then look into GN. It rare and I've been told peole with MS are some of the very few that get it.
1. Erin Rush Community Admin
 <inline-mention username="westexer" user-id="3941133"/> , thank you for sharing this information! It could be really helpful for other community members! I am glad you are finally experiencing some sustained relief. Thanks again for sharing! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.

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