Multiple Sclerosis Pain Explained: Trigeminal Neuralgia
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- Опубліковано 12 чер 2024
- 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.
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.
Then I'm super glad I made this video Linda!! I'm excited for you to be treated and get this pain under control!
Linda Madarik..You were so lucky not to have your good teeth extracted, I went to two different dentists and had good teeth taken out only to feel the pain was still there..worst pain I've ever known.
I hope you were able to finally find a way to control the pain ballinacrossrose?
Aaron Boster MD... Thankyou so much for asking, I really liked your video, you really described TN perfectly and you were easy to listen too, yes after many years of suffering and taking Tegrotol which i had severe side affects from I finally had Surgery, the surgeon explained that things could go wrong for example my face could have fallen on the right side or there was a possibility that I could be deaf in my right ear. I was passed caring and agreed to have the surgery, none of the things I mentioned happened I have permanent numbness on the right side but I can live with that, I will never forget the dark days I endured and will be forever grateful to the medical profession. Thankyou again.
Same thing happened and is happening to me. Already had 5 root canals in the last 7 months.
I am Wamiq, 29 years young. I was recently diagnosed with trigeminal neuralgia. The pain I went through occured in bouts, it was so severe stabbing pain that I had to fill my mouth with cold water to control it. I usually have dull pain all the time and when the bout occurs, it is in the form of stabbing pain, instead of an electric shock. Brain MRI has revealed an aberrant vascular loop around bilateral trigeminal nerve. My neurophysician has prescribed Carbamazepine 2/300mg and Adj. Gabapentin/Nortriptyline and the bouts are controlled significantly. I am a fighter, I hope to win over TN no matter at what cost, or atleast live with it without total loss of everything. I will not fade away with a mere face pain.
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
Trigeminal neuralgia has changed my life completely. It is nearly impossible to manage and I’ve seen 3 neurologists.
ugg!
This is by far the BEST video on Trigeminal Neuralgia I have seen. Thank you!
TY Meloney! #WeHaveMS
I agree!! Very informative and easy to understand, also straight to the points.
Thank u!
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.
#MSWarrior
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.
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.
Wow Vicki very vivid but definitely true .
I’m glad it helps you, I have to take carbamazepine and gabapentin, and nothing is working for me unfortunately. Have a good day
My husband had gamma knife surgery by Dr Warnick from Jewish Hospital in Cincinnati, Ohio. Immediate relief. Wonderful doctor. Great bedside manner.
Awesome and SO glad to read that that helped!
Electric shock in my upper lip when laughing. Feelings of something crawling on my chin, and "Brain Freeze" headaches over my eye.
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?
Thank you for another great video! Like so many people thought that it was a dental problem I went to the dentist and he sent me to an oral surgeon who decided it was best to pull all of my teeth. In about another week it started again, and I just figured that I had waited too long and damaged my roots. This has been going on for years now, but I didn't bother telling my primary doctor about it because of my other problems. Now that I've seen your video and read some of the comments I'm going to bring it up to her on Thursday and see what she thinks. She already has me on gabapentin and a few other meds for my pain in the rest of my body and the meds worked for a while with the body pain and made the tn less frequent. But now they don't help as much, maybe talking to her will help me find out what is going on with me. Keep up the good work Dr B!
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.
Howdy Brandi! I'm super glad you found this helpful! Have you looked into Gamma knife? Please give that mighty viking my warm regards!
Hi, I would like to know if you have been diagnosed with MS. I have atypical TN after extensive dental work too. I did an MRI for my head and I don't have lessions like MS patients.
I have had this for about 5 years and I thought it was in my head so I complained about the pain but was just diagnosed and that’s as far as it’s went. It is getting to the point I can’t function when the pain starts and last for weeks sometimes. Other times I might have 3 good weeks. I don’t know what to do I feel like people around me don’t think it’s real because you can’t see it. I really feel alone because no one I know has ever experienced this pain.
I can relate to that feeling. People think because "we look fine" we are just being babies OR when I had a very bad attack and went to the ER (headache and an TN attack its all on the left side of my face)
They treated me as I was drug seeking I was so upset I just left.
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.
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.
Thank you for watching and thank you for your comment Christina. I'm glad the gabapentin and tegretol are helping you.
the pain is unreal. Its everywhere. I try and describe it to people and they look at me like I'm nuts.
Thank you for making this video.
My pleasure!
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
My mother had MS and trigeminal neuralgia. I've been diagnosed with TN also but not MS, currently. I'm now no longer in remission, my pain has returned but its far more severe. I was relatively pain free or at least didn't require medication for maybe a year or so? Now it's back since I had a tooth cleaning recently. I suddenly developed severe pain on my left side teeth. They put me on gabapentin, it seemed to be helping. Though, even with the gabapentin the severe tooth pain on the left side was quite bad and I had to avoid ANY contact, aside from warm water or warm mouthwash, no eating solids or brushing. Last night I was having mashed potatoes, very carefully, and sadly I accidently had my tongue make contact with that top left side tooth. The shock of terrible pain also seemed to cause a shockwave over my face. It seemed to pass and after a few minutes I decided to try to carefully eat a little more. (I'm losing weight due to no solid foods and live on meal replacement drinks and baby food, cream of wheat, yogurt, mashed potatoes, that sort of thing. I tried eating so as not to make contact with my teeth.) Suddenly my tongue made contact with my top RIGHT teeth and there was that excruciating pain again. That's right, the SEVERE pain is now on my right side as well. I don't know how I'll eat now. My own tongue, just naturally moving inside my mouth, can cause a SEVERE unbelievably painful attack. I see a neurologist this week. I watched MS slowly kill my Mother and I'm very frightened this may be in my future. I'm so scared.
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
PS- dentist xrays show nothing!
Thank you once again for this info I'll b talking to my MS Doctor about this I'm praying I don't have this, but the symptoms I do have, I cant an won't let MS beat me, 20 yrs still fighting an won't stop Thank You Dr,Booster for all your expertise ☺
YW Richelle! #WeHaveMS
Dear Dr Boster, Thank you for your video's! I really appreciate it - I know how much time and energy it costs to make them since the lockdowns when I had to record weekly sermons...
Until now I've had several phases with TN - painshots coming in one part of one half of my face at the smallest movement. It's very painful but until now I could handle it because the pain only stays very short. I would describe it as a long, cold knife that hits me and disappears. Till the next movement or touch... People around me can see it happen, as my body tends to react like it would do with a real stab.
When it appeared, it could come for a few days, always combined with extreme lack of energy. Taking as much rest as possible feels good to do, then less attacks seem to happen. After some days that part of my face turns numb (which also comes when it's to warm for me) and no shooting pain appears any longer.
But maybe it isn't TN at all, as it doesn't stay? I wouldn't call it the worst pain ever either, I've experienced renal colics as worse, because that lasts longer. Whith those pain shots I don't really feel that I have to manage the pain, because it's gone as soon as it comes. And the time inbetween the shots is longer. I take them one at a time, and one shot I can handle. I try to focus more on the relief that it's over than on the pain, kind of the same mental technique they taught me for handling birth pangs. Of course this would'nt really work, if the shots came all the time and at a higher frequency.
Currently having the pain on my jaw area, ear and top of eye area on the right side of my face. Idk how to describe the pain but it hurts like hell & i cried from the pain. I used to have pain in the ear for years before got diagnosed with ms but i thought that’s just an ear infection. Now that i’ve been diagnosed with ms its all make sense now. Thankyou for the explanation about TN. This is the first time that all 3 hurts. I need to see my specialist tomorrow to discuss about the meds.
Dr Boster, I was going to ask about TN, on livestream, but you've already made the video about it. Good job!
@Aaron Boster MD
Oh and my story. I have neuropathic pain on my legs. It was painful to wear socks, clothes. It was painful to sleep and sit. So my neuro prescribed to me, Taita (Duloxetine) at first. I didn't respond well to it. So I was switched to Lyrica. That helped ease the pain, but it made me harder to concentrate, think, in short, it made me dumb (er). On subject of TN. I developed extreme, like a power struck, sudden pain on left side of my face. My neuro said, it's tooth problem, nothing related to MS (or potentially NMO). But once I started with Lyrica, those sudden painful episodes eased off. Now, they are just annoying reminders of what it was and what it can be. Need to report that to my neuro on our next session.
Glad you liked it!
#MSWarrior
My face has a toothache and it hurts to breathe through my nose and mouth because the nerves flare up.
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.
So how is the situation now? Are you better now?
how did it go?
Please more videos on this and emotional support for pain and also about feeling to die because we cant take the pain.
I was diagnosed with T.N last December and have been on carbamazepine since. When it flares up, it feels like I have been punched in the face with severe pain in my top right teeth, right nasal passage and cheek bone. Sometimes the right side of my top lip will go numb with intense pain.
lynne butters I haven’t been diagnosed with T.N, but I was diagnosed with MS last November and have been experiencing the exact same pain you described in my top right teeth, lip and nasal opening for the last few days. Any kind of pressure or touch to the area is like this excruciating pain that is almost unbearable, I’m not sure where to go or what to do too help with the pain 😔
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.
ouch!!! Hang in there!
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.
excellent video! I have had two microvascular decompression on both sides of my head. with tegretol, I maintained for about 7 years, however I have had massive problems on my left side. I have white lesions but was negative for ms. I was getting so groggy with tegretol that I was switched to trileptal. I am pretty good until I start getting stressed. this helped my family understand what I do go through. tysm!
I have a ver very small spot on the pons. snd I have it. They diagnose by verbal symptoms I belive.
Hi, ISince I was 34 years old. I have had T.N. No One would diagnose me though today after 5 years of this on/off pain today is the worst . Over the 5 years I have tried to not GOOGLE my symptoms, because of how many opinion of diagnosis are given and the endless list of, what disease or disorder in the world. 5 years ago I simply put my symptoms into the search engine and T.N came up. Exactly, one! Matching how I felt . After many trips to dentists I had a tooth extraction that was not necessary, Dr's here in Canada looked at me like I was imagining it!!!! doctor to dentist, dentist to DR's they did everything MRI, Cat scan. I mean everything but diagnose me with T.N. but still gave me TERITOL. but after that extraction the left side off my face was never the same. I stopped seeing anyone. Now 5 years later, I thought screw it I'm gonna see if I can find info on you tub. low and behold their so much more I have learned on you tube in 30 min than EVER. and one was that 'IM not CRAZY! Im done with meds. they dont work anymore! and being Canadian their are no surgeons here. Even my family Dr said theirs No one and walked out! So Now Im back at square 1! No relief I cant talk so I cant work, my children always think im mad cause im in Pain, talking too them through my teeth. It is truly debilitating and ruining my life! any ideas of what to do now? Thanks for your educational video.
Hi , how are you doing now , I was also diagnosed at age 29
Does anyone else that experiences TN have ear issues around the start of it? This is my second time with TN due to my MS each time I had ears popping and the feeling like water was in my ear prior to the onset of facial pain.
ouch!
Yes. I feel sensation in the ear as well. Did you find a cure
There is a neuralgia specific to a tiny nerve that goes to the ear, the name of which escapes me now, which I ran across several years ago during one of my deep dive research sessions (cause you know how it goes with Dr.s). Even though I have MS and it was only identified because of Trigeminal Neuralgia and/or Occipital Neuralgia, I get the impression they don't really want me labeled as having TN, one of my Neurologists actually balked at the idea that I had atypical TN. Atypical is basically it 'hurts' all the time but not so severely with periodic standard TN episodes for.... punctuation? LOL (got to keep laughing ' else it could kill us) Anyway, I'm not sure if the ear one is like so many diseases/conditions and more myth than not to them, or if it's just really rare (like everything they fail to report, ironies of many of our self created & self perpetuating mythological medical insanities that would be called conspiracies but for lack of intent or malice) I just try to remember to use lymphatic drainage massage to prevent possible exasperation of the issue and most likely an attempt to feel an element of control and I don't get the fluid sensation. Best of luck!
yes, I hav pain behind my rt ear
Hi Doctor
I have been diagnosed with TN. Tegretol works well for me. We have not discovered why or where it comes from yet. I have had Migraines since age 12, TMD since 2000, and bell's palsy on both sides in the last year, along with the latest trigeminal Neuralgia (TN).
Mine is nerve pain in my teeth, jaw, and cheek lasting at least 5 minutes. Episodes happen around talking, eating, and going outside in the cold weather. I have been to several doctors, dentist, neurologist, and ophthalmologists. I have even been through physical therapy.
It is so nice knowing I am not going crazy just making this up. The scariest part is waiting to see what is next.
thank you for your explanation.
Brenda
I have had issues with TMJD for 20+ years. I always assumed my face/ear/eye/neck/shoulder/back pain and migraines were from that. After getting a bite splint for severe degenerative TMJD 1 year ago, its all still there. That doc referred me to another doc for an MRI who then put me on Lyrica. It seems to help a lot and my RLS has gotten so much better. I sleep better than I ever have.
Was diagnosed of TN. Went to dentist, to EENT then finally to Neuro. Am now taking tegretol. I hope they could find a cure soon. TN attacks especially during PMS. Tegretol makes me so drowsy but have to take it as per MD's advice
Another great video, thank you. I have a “droopy smile” and permanent (?) left sided numbness from my neck to my head with occasional pain that felt like jaw pain. I was told it’s the fifth cranial nerve from a brain stem lesion. Thankfully, I’ve never had that excruciating jaw pain/shock.
Thank you for watching the video Karen, and thank you for sharing your experience. I'm glad you never had the shocking pain!
Thank you for sharing information. I started having pain over ten years ago. I thought it was a tooth so I went to my dentist and he pulled a tooth. The pain came back off and on and before you know it, it was back. I explained to my dentist the pain was horrible on my right side. He checked my teeth and thought it was a molar and pulled it. The pain was gone for alittle while and then it got worse. I could not even lick my lips or touch my nose or face on right side. I was in tears at work and went for an emergency apt with a different Dentist close to my office. He did xrays. He tapped each of my teeth and nothing. I explained the shotting pain when touch my lips or face and he said sorry its not your teeth. Look it up online TN. Finally after 2 teeth gone and months of pain. I have been taking gabapentin for years now. It helps but I still get electric shocks sporadically for no reason. I think I have a bad tooth but I'm scared to let them touch my face. How can I get tn to stop long enought for dentist to pull a bad tooth ? My gums have recedded because I can't always brush teeth on right side of my face. I need dental care but I'm scared because I have not been able to find a dentist who knows how to deal with TN. Tired of being in pain. Any suggestions of what dentist can do to stop TN long enough to get dental care done ?
I have TN. It first presented when I had a tooth cleaning. One cavity filled and two root canals later, I went to my neurologist for a routine appointment and he told me about TN. Mine presents atypically in that it is a constant pain ranging from dull to very sharp. I have tried both Vimpat and Trileptal with little to no success. Thanks for this video! I will look into more treatment options.
best of luck Leah! I hope you find something that helps asap!
Hi thanks for the great video, I have learnt from you that this is something that I am suffering from as well as migraine behind the same eye on the same side I am having the pain and I can also feel the pain in my upper front teeth, hit and cold trigger it also but it is there constant, the Dr has given me tramadol and amitriptyline as I am waiting for an appointment to see a neurologist as my GP thinks I have MS but says the neurologist will know more so just painkillers whilst I wait, on really bad days I am using cocodomol as well as the tramadol and sometimes gabapentin too! I literally rattle from all these pills but I can’t cope with the pain without them it hurts a lot!
I am learning so much on your channel thanks so much I appreciate all you are doing! 😊
Hi doc, Lo here. I had an episode, late 70s..it side of face numb. No pain. At that time, went to ENT w I dunno results. He could touch my it eyeball w cotton and I wouldn't blink. Yet another vague set of symptoms that said was neurotic. MS since 1960, age 13. 30 years to diagnosis. Nothing facial since. Lasted about a month. Am 71 now. Every day is an awareness adventure. You are AWESOME!]
I love that statement "every day is an awareness adventure" that's powerful!!
Thanks Aaron. It look for it.
👍
I’m typing too fast. I need to catch that. Making errors.
No worries, we're tracking.
My TN journey got my MS diagnosed and left me with a tender/bruised feeling in my forehead like I spend my nights beating my head in cartoon like exaggerated frustraions. It also led me to "create" my "medical haircut" (still lack a catchy name) a few years ago when I discovered just how much the weight of my not excessively long hair was a significant pain factor agitator. My 'almost' "half head" shaved cut has grown to both sides in the Occipital Neuralgia area over time and it does increase the wind issue but it's still worth it compared to the hair weight issues and lidocaine cream application issues as well.
At the worst level, it feels like I have an ice pick in my ear and someone is constantly hammering at it. At its best, it’s a dull ache. Luckily, I can go months or years before an attack comes but once they hit, it can last for months and I usually have to go on disability until the flare up is over.
Exactly how I feel. The ice pick constantly stabbing my inner ear
People don't realize the pain
I had t.n in 20.19 it was painful the stabbing of pines in the right side of my face i could not shave probably and brush teeth was horrible
Now we need a video on overall pain management of MS - or is there one already? Thanks for this excellent resource which I am constantly sharing with others. #WeHaveMS community appreciates these mini-lessons.
Thank you for all your continued support Laura K! Here's a link to an entire playlist about managing MS and pain. If this isn't what you're looking for please let me know and I'll work on adding to it!
ua-cam.com/play/PL3a4GpjWLtCjbBZbtRG8alLnfmjdnEcwH.html
I too, went to a dentist in2017, and lucky for me, he knew exactly what was wrong with me by the symptoms I was experiencing. After medications failed to combat the pain, Ihad MVD surgery in 2019 and was pain-free for a little over a yr. It came back, and with each passing day, the pain gets worse. It feels like searing hot jolts of stabbing, shooting electrical shocks. The pain will intensify while I'm eating, brushing my teeth, or talking. I just wish there was a 100% cure for this.
Thanks for the video Doc. Ive had TN pain about 5 months now. It came on like a freight train. All 3 branches are affected. The middle being the worst. It usually is grinding crushing pain all over with stabbing pain in my eye. All being a 10 on the pain scale. Thankfully the Neoro Doc has it down to about a 4 on a daily basis now with the meds. The final dosages are 600mg of oxcarbazapine, 1500mg of gabapentin and 10mg of baclophin daily. Thanks again for bringing this to light. It is absolutely horrible pain.
I forgot triggers. Cool to cold breezes, talking too much, chewing, touching my face and stress. It seems when i get to stressing about over stimulation like traffic, too many people or unfamiliar places it gets to humming. Then calms down when i calm down...lol
Thank you for watching my video and thank you for taking time to share. I'm glad you've found a way to dial in the meds to control this awful pain.
Does your face sorta act as a "barometric gauge" for stressors?
Aaron Boster MD You got that right...lol. I forgot heat gets it going too. Heat also gets my ms symptoms going too.
Needless to say heat is NOT my friend...lol. When my face starts to hurt i know i need to change what im doing.
It's smart that you identify that as such and can act on it Fred!
Thank you Doctor! Trigeminal Neuralgia I had it for years before I was diagnosed with MS it is a hideous condition. 🧡MS Awareness🧡
Love your videos. TN = electric shock, electric cattle prod 3rd branch. Tegretol helped but eventually longer, more frequent exacerbations. Blessed that gamma knife 2-3 yrs ago successful. Left me with numbness right side of face/head, but better than the pain!
Amen to that Elizabeth! Thank you for watching and sharing your experience here! #WeHaveMS
Oh man; so this January I stumbled upon the term TN, and had a huge light bulb moment. My dentist and I have been baffled about my right lower jaw. For the last 10 years (with previous dentist) I have had severe jaw pain. I had a root canal and crown, pain would return. Moved, found this dentist, it was now years later, he thought the crown needed replacing, re-cleaned the tooth out, re-crowned it ($$$). Now, 2 years later, same dentist I went back with the same pain. He checked the surrounding teeth and did a huge panel xray, said everything looked fine, but we would just watch it. He said it might be a traumatic bite issue and kind of shaved my back tooth down a bit. Now that I know I have MS, I am highly suspicious that this is TN I am experiencing. It comes and goes. At it’s worst, it is worse than labor. Going to bring it up to my neuro office next time. Other times it isn’t as intense. Why do they not ask us about this kind of pain when we are going through the diagnosis process? In my research it is often an early sign of MS. Not one doctor ever asked me about dental/jaw pain or issues. Naturally, I assumed it was dental and didn’t think to bring it up.
wow! Thank you for sharing your (frustrating!!) experience Cassie. I'm excited for you to share with your Neurologist!
OMG! Your the only other person Ive read/heard of other than myself who rates the pain in comparison to labor... Pain scale 1- 10 doesn't even come close to the pain. I have 3 children and when I was asked how bad my pain was, all I could say is I would give birth all over again! at least I know that pain will go away! So sorry to read of your M.S. Prayers
A ceiling beam fell into my head and face and I started having pains immediately but was like a headache and facial pain
As days went on it got worse and I thought it was a dental problem
Went to dentist to find out it wasn’t, went to dr and complained and the nurse practitioner gave me some meds also.
Back and forth back and forth, I was finally put on carbamenzipine
I am in sooooo much pain until I just want to die during these attacks
I never ever experience any pain like this until after that accident
One thing I have learned with mine (trigeminal neuralgia pain) is that I used to often leave my beard the classic 2 weeks sometimes even 4 weeks...but as I shorten the face shaving time like almost every 2 days is much less active I still get them but they are much less scary and painful
Thank-you doctor it is not an imaginary condition.👍
you're right, it's quite real.
@@AaronBosterMD Best explanation I've ever gotten.
Are you familiar with other types of trigeminal neuralgia? I have the one where I have constant, but very debilitating, pain. I kept being told I had sinus infections to the point I had septum and turbinate surgery. Then, the dentist said I had tmj. Eventually I got to a doctor who successfully diagnosed me. I had gone to the ER in incredible, worst pain of my life. I feel like that's saying something coming from a veteran army paratrooper who's back and hips are well destroyed, and am covered in tattoos. After 7-8 ER trips where they'd do a CT, some basic blood work, and tell me it was a migraine with anxiety. Even a neurologist came to the ER and told me nothing was wrong, it was a migraine with anxiety. I went back to the VA one more time after that and begged them for help. Say what you want about God. I'm really not religious. But, this was so bad I figured nothing would hurt at this point. I sat in my car and prayed for half an hour or so before I went. I told God, buddy, I don't know if you're there, but I can't handle this on my own and need some divine help or I was legitimately afraid I'd hurt myself. By then, I'd had this going on for about 2 months with zero relief or even explanation of why. Let me tell you, I know why they call it the suicide disease. If there was no treatment, no question I'd bite a bullet. That's not a life worth living. Sitting in unbelievable pain, in a dark room, completely unable to move, even getting up to use the bathroom induced pain so severe it was nausea inducing, can't even talk to your kids because the sound is too much, going outside to play with them is impossible because the temperature change on my ear is again nausea inducing type painful, playing my drums is a long lost source of joy for me, eating is painful, everything is painful, and not pain you can grit your teeth and get through. It brings you to your knees.
Anyways, after a good 7-10 ER visits with no answer, I tried one more time. I prayed in my car, and have never done that. I told God, I can't do this anymore. I will kill myself if this is my life now. I went in, and met a Dr Morris at the Seattle VA ER. He graduated top of his class at Yale Medical School. He works ONE DAY, count it, one day, at the Seattle VA ER. He got me as a patient and said, why are they doing CT scans on you? This is clearly not a bond problem or stroke. You need an MRI. I will try to give you one tonight, but we're at the VA emergency department and it's almost constantly running. I'll be honest, you with a "headache" isn't going to be triaged that high to get in it tonight. But, I'm going to try. Tried he did, and got me in the MRI. Then, comes out and says, your superior cerebral artery is looping around your trigeminal nerve, as I thought. He put me on oxcarbazepine because I also take Suboxone.
Thing is, you have to taper the dose up over 2-3 weeks. Then, once you're on the higher doses, takes another couple weeks to work. What worked to bridge me until that started working was baclofen, and klonopin. I still take them on bad days.
Was curious if you've ever treated this kind of TN? I think it is called type 2, or traumatic trigeminal neuralgia. It's a constant, dull ache. Makes me wonder if every sinus or ear infection I've thought I've had in my life, was just this.
I'm up and can't sleep. I just sent an email for an emergency dentist appointment. Just before watching this. I'm in so much pain
I have TN but havnt been diagnosed with MS. Had a brain MRI but no sign of it. Although my legs often go numb and arms. Even my face and tongue go numb alot
I was just diagnosed today...yikes 😳. I'm back and forth with the dentist going crazy with antibiotics... didn't work... Finally went to my doctor and I'm like wait what...I'm learning much as I can but the pain I wouldn't wish it on my worst enemy...
I was diagnosed with TN six months ago. It started with pain in my teeth in my left side, I had a root canal but the pain got worst. I have the pain in my upper and lower jaws, my teeth, my ear, my throat, sometimes my tongue and nose hurts. Sometimes the pain is all the time, but it is like electric shocks, very painful. I have been treated with lyrica and tegretol at the beginning but these medications didn’t agree with me. At the moment I am taking Duloxetina, it doesn’t stop the pain but it is a lot less, secondary effects are also less.
Hello Dr. Boster,
When this pain hit me the first time I went to my dentist first, cause I thought there was something wrong with my teeth. But they were ok, so I saw my neurologist and she said it could be trigeminal neuralgia. I am taking Lyrica against the pain and Tramadol as needed. She also gave me Zolmitriptan which helps when it occurs first. To keep the pain lower Tramadol (drops, liquid) helps a bit, but still paralyzes me many many hours. But there are times that it happens fast and goes away fast too.
Triggers are hot food, hot drinks, chewing itself, cold wind.
I am using coolpacks on my face and go to bed or sofa for hours. no movement makes it little better.
Lyrica is not the best for me, but we are still trying medication that helps me best. My liver counts are bad so I ahve to be careful with medications anyway.
Have a wonderful day, Dr. Boster! Greetings from Germany. Britta
Thank for for sharing your insights into how you manage your TN Britta! I hope that today finds you well!
I've had tn for about 5 years it started with little electric shocks while washing my face then out of the blue while bitting in to a sandwich I was actually brought to my knees I think only people who suffer with tn can explain the pain, went to doctors sent me to dentist and opticians all clear went back to doctors said I think you could have tn wanted to put me on anti convulsent drugs which I declined but the pain was getting more frequent so I did some research and found a drug called amatriptyline an anti depression that works on nerve pain, started on 10 mg and the pain went for about 3 weeks but it returned so kept upping the dose to 60 mg after a few months although the pain had only eased decided to cut down tablets by the time got down to 10 mg pain had gone, had 2 years pain-free only for it to return this year back on medication and it definitely takes the edge off the pain anybody suffering with this as my sympathy.
Mine started before I was diagnosed with ms. Tiny and quick electrical flashes in my face. I would have them for a week or so and then it stopped. It progressed to what felt like an electrical storm in my face that lasted for several minutes. It was excruciating. Then it went away again. Fast forward post diagnosis it started again for what seemed like 2 days straight with brief breaks. I contacted my neurologist who has started me on Trilyptal. It has helped but not completely so she increased the dosage. It’s not completely gone but I have developed a “precursor” : I feel like my left nostril is running. When I feel this I turn my head to the right and look up. It stops it from starting.
I knew if anyone would have this video up it'd be you. My mom has experienced this a few times. I said "why you mom" she said "Matt it's just something the Nazi's created because they hate Jewish people" so that's how she copes with her pain along Neurontin and Gabapentin. Ugh... pain usually gets better after a few days to a week.
I recommend to here with her MMJ card to get THC lozenges after this past time and the pain was gone in 30min through sublingual use. She called me crying to tell me that. I'm glad it worked and worked well.
I have TN and have gone through a microvascular decompression surgery. There was a vein that had rubbed against the myelin sheath and eventually gouged into the nerve. The surgery was partially successful as i regained the ability to speak and several trigger spots on my face disappeared. However, the nerve didn't fully heal and i still deal with it today. If it's ok to say, I have a channel that talks about day to day living with TN. Its called Trigeminal Neuralgia Hacks With Brainger Ron. It's set up for those recently diagnosed and for their loved ones. Since its another page, I completely understand if the creators of this page remove this comment.
I like the coat. thanks for the video. my symptoms are that I feel both pain and a sensation of numbness in and around my forehead, eye, and cheek. my eyes really hurt ad looking at light is painful. I also have a hot rash at the same time and the ringing in my eyes gets worse. this is just the symptoms WRT to TN. I have more. I'm finally trying to get into JHU to get some help.
TN - AKA the railroad spike to the cheekbone. Thought I dad a bad tooth, but the dentist said my teeth were fine. I was diagnosed with sinus infections, many, many of them. Finally went to an ENT, ended up having surgery to correct whatever weirdo mess my sinus cavity was in. I can breathe lots better, but my face never stopped hurting. Got referred to a neurologist. First thing they said was Trigeminal Neuralgia. MRI to peek at the nerves showed lots of MS-like lesions. LP w/O bands kinda agreed. Tegretol then Topamax keep the very worst pain at bay, but I hurt 24/7/365. I didn't register the pain of a cracked tooth that ended up decaying so badly that the root was dying. This stuff isn't for wimps.
Thank you for this video I have a question I had attacks yesterday on the left side of my face. I woke up this morning with the left side of my face drooped... I do have multiple sclerosis... Can they be related I hadn't had pain yet this morning.. Just the facial droop...
I was recently diagnosed with TN but I don't have any new lesions on MRI. Is it possible for TN to not show up on MRI and still be considered MS progression? MS is so confusing!
As always, thanks for sharing your knowledge!
for me, TN feels like my head and face are constantly in a vice. like I'm being experimented on with electroshock therapy. like someone is hammering a hot nail into my ears. like my teeth are being drilled into with no novacaine. it feels like my jaw is breaking and like someone surgically installed a painful device in my head. it has heightened my migraines to an unbearable level. basically, it's not called the suicide disease for nothing. currently, I am barely managing the pain with gabapentin. I still feel it almost all the time, it's constant for 2.5 years now. I have TN bilaterally as well as occipital and glossopharyngeal neuralgia
I have been diagnosed with TN pain, and it is horrible pain, it feels like a never ending brain freeze or taser zaps to me! There is also a sensation of crawling under my skin on the scalp and left facial cheek. I am in misery from it. :( My doctor wants to do surgery on me, but wants to check my brain for MS or tumors.
I have yet to be diagnosed with MS, I hope I do not have it, but I have similar symptoms, I have pain when I move my eyes left or right, I have a zapping sensation when I bend my head down toward my chest. I have dizziness issues and tightness in my ribs and chest. As well as patchy spots on my body where it is numb other spots tingle.
Best thing I have found that helps with the TN is muscle relaxers, cbd oil and Neurontin , I am still waiting on a date for surgery, due to CV19 everything is slow :(
I have had a small intestine kink, and kidney stones, and on a level of ouch, I would have to put the TN between the two, its worse than the kidney stones, it is on par with or worse than the kinked intestine.
What really bothers me with my TN though, is it is constant, zap , zap, zap. burn, burn, burn, itch itch itch. Most people I heard from that suffers from it, it comes and goes it last a few min and stops. it is maddening.
My experience is pain in my lower jaw, lower and upper gum/areas of roots of teeth, and sometimes combined with pain to just keep my eyes open. I have the painful sensation that I’m clenching my jaw throughout the day, even though I am not. Often, upon the first bite of a food item, I will experience a jolt of pain, almost like my jaw is locking and an overwhelming shooting of pain through my jaw, upper teeth/gums, and lower teeth/gums... I have to wait a while before I’m actually able to begin chewing my food. My normal PCP shrugged it off as possible stress or grinding of teeth at night, so I may have to ask my Neuro for their opinion.
I have MS and I have trigeminal neuralgia for 3 years. The pain is almost constant. I am being followed by a neurologist. I am taking 4 different meds plus botox injections and nothing helps.
I waited a year once to see a neurologist and all he did was hold my jaw move it back and forth and tell me its not T.M.J back then I didnt know about T.N.
My experience with TN starts with a sudden sharp pain starting at the forehead shooting and spreading out over the cheek and down to the chin. It doesn't last long but feels like forever.
I haven’t been diagnosed, but I remember one morning at work, me and my work buddy was talking on break on a windy day in the winter and sharp gust blew through the open window of the work van I had a very quick but excruciating paint like a knife or electric shock travelling down my cheek and along my upper jaw the pain was so bad I was left drooling and confused for a few seconds I rang my Gp they said it was dental I went to the dentist, they did a filling on my upper jaw, Same day pain happened again when I bent down the pain was so intense I feel to the floor, I rang the dentist they had me back and removed the tooth, and another infront of the previously worked on tooth, a couple of days went by no pain, I thought well we got to the bottom of it, middle of the night I was woke up with an excruciating headache I went downstairs for some water and pain killers, on my way back up stairs bang! It hit me again my wife found me on the stairs sobbing with pain clutching my face and heavily breathing, that was my last extreme attack of a pain in which you was have been describing, I have since had very quick stabbing/electric shock feelings in the same area but luckily I have. Not had one as bad to make me fall to the ground with pain, I’m currently suffering from tremors, and extreme fatigue my legs shake when I try to walk down the stairs, my walk has also become quite clumsy and slow, my doctors have put me on a drug called primidone, they worked with the tremors for two days, and then my tremors where back, upped my dose same again worked for a day or two and then they came back, I’m not on 550mg of primidone a day my tremors are still here slight more controlled until I become fatigued and then all hell breaks loose and they come back stronger than ever, apologies for the poor grammar I am autistic and have a number of learning difficulties text is one of my short falls
I have had the sharp pain in tooth and everytime it happened i almost went to the dentist cause i assumed it was a cavity but it goes away. But i am gaving an electric shock pain starting at the base of my neck up into my scalp and by my ear on one side. I cry almost every time just because it scares the sh** out of me.
Ive had 2 mris of my brain its clear. So im trying to figure out if i need to push for the spine mri. My insurance keeps deniying it. But im losing my mind with these symptoms and its been 2 years of numbness pain and weakness.
Thank you❤
I’ve been suffering with this pain off and on for a year, self treating with painkillers but now it’s getting bad and I can’t sleep at night with it, and the painkillers aren’t working. Due to see a doctor next week.
I have experienced pain underneath my eyes along my cheek bones. Also on a few occasions my jaw has actually locked closed, now I’m not sure if this is related to trigeminal neuralgia or not but it’s very scary.
Why aren’t dentists more educated? I have had two root canals, and two extractions that were most likely unneeded due to the pain still being present. I finally had a dentist tell me it was TN. Only after years of pain and several dentist. Even two MRI’s. I’m waiting now to see neurologist. My pain is constant, throbbing, mainly left_side, upper. Headaches, also. I’m taking Gabapentin and ibuprofen. Even ER visits to military hospital they kept referring to my pain as a “toothache”. Doctor gave me a shot of lidocaine and it did nothing.
I was diagnosed with MS i 1978). I am 68. I have Trigeminals Neuralgia. The worst of it is when I fefl it on my scull i 'm on Lyrica.,Copaxone. and Ducolex and Neurontin. Neuralgia is
I went to my chiropractor today because the top of my head and side of my face felt tingly and “off” last night and again this morning. Then, I felt as if I’d had an injection of liquid fire inserted near my ear, that crept across my cheek. Chiropractor confirmed nothing was out of place in my neck and suspects TN. Follow up w neurologist on Monday.
i want to know why my Trigeminal neuralgia attacks me it attacks my chest and arms too.M suffering since 2014.M taking oral medications, but recently the oral medications r not working anymore.
I have been on t carbamazepine and gabapentin and they just put me on a new medicinemostly is diabetic and for anxiety and depression and so far it's not working they don't think I have a messed up my symptoms are kind of leading to it my left side hurts and my and yeah it's like electric shocks all the way down to my feet hurtI am very fatigued and having visual disturbances not like dizziness but like my eyes just feel like they're weird you know like sucking in and out try to explainbut hopefully the doctors will figure out what's wrong with him soon and maybe get another MRI cuz it's been about a year I've been dealing with this
I have constant aching in the temple area and headaches 5 days out of 7 when I wake up as well as scalp and forehead pain. All on the left side. No insurance so no doctor. I have been taking Gabapentin for almost a year for another problem and that sort of helps but it never goes away. It's so weird. Constant tenderness in the temple area and forehead and hair pain. All on the left side. I do not get the stabbing pains except when the headache comes. One tooth an upper molar - feels like it's sensitive all the time - different ache than an abscess. Any thoughts, Dr Boster? Thanks!
I've had trigeminal neuralgia for years. Most of the time it is muted as long as I don't chew or talk too long. Often, though, it savages my head for a day or two. It has made me afraid to fly as I wonder about air pressure and the neuralgia. I have two questions - I know I have a lesion at C2 and can't figure out exactly where the nerve would contact the spinal cord...is it near there?? Also, has anyone figured out how to fly with TGN? Thanks again for an informative and sensible video.
28 years with MS and guess what just started? Trigeminal neuralgia. 🤦🏼♀️ Omg the pain! It's worst if I close my mouth all the way, or lying down. I noted tho, it seemed to start from clenching my jaw (caused by medication ) or possibly brushing my back teeth really well.
I have atypical facial pain a more consistent full acne in the face compared to TN , had brain scans went to see a neurologist ms specialist to rule out MS . Mine is more like burning aching bruised feeling
The antiseizure medicine oxcarbazepine as well as a muscle relaxer. That is the only thing that helped me. My neurologist told me both could help these. I bore it. I wanted to call him and say this isn't working. I'm ok now, but I still take my medicine. That pain is so horrible!
Can the inability to independently control the opening and closing of one's eyes fall under this condition? Is the pain generally on both sides of the face?
I have trigeminal neuralgia. I started having what felt like
Ike shocks on the right side of my face about four years ago. I was in a car accident and suffered whiplash but I’ve also both sides of my jaw joints replaced. I have pain often when I’m chewing and I have to stop and hold onto my face. I also have shocks when I’m dry needled at 𝙿𝚑𝚢𝚜𝚒𝚘 in my neck always the shocks are on my right. There a couple of spots on my right side of my face that if I press or sometimes just touch that gives me shocks. I now have been having balance issues such as I can’t walk heel toe in a straight line and I can’t.stand straight with my eyes closed or I’d fall down . We are wondering if I have MS.
Can trigemenal neuralgia cause facial swelling? Because after so many flare ups ive noticed my face is always puffy in my cheek bone area as well as my eyelid
I have bilateral TN due to MS lesions.
My symptoms are mostly extreme burning. Still trying to find procedures or medicine to help. I have had a bilateral occipital block and lateral stellate ganglion block. The first time it seemed to help a lot and the second time not at all.
Pain started about Feb.4, 2019. Being treated by tablets of oxcarbazepine. The tablets help with pain, but affect my balance which is already affected by MS.
yuck!
I have secondary reoccurring multiple sclerosis,
My question is I also have spinal stenosis
I'm in constant pain with my back
Should I get an operation to eat alleviate the pain in my back
Or is there a chance that if I have an operation, would I die on the table???
Just watched this video again, looking for ideas how to improve/alter my anti-trigeminal regime (big THANKS for this video!!!). In the meantime here is my TGN pharma-history: started with Gabapentin (neurontin) 3x 300mg, after a month upgraded to 4x 300mg, a few months later altered to 3x 400mg. After a year added Timonil (tegretol) 2x 100mg (1-0-1). This combo worked rather fine for about 2 years. Once the pain started to surface more often and stronger (soon it became a wakeup-to-sleep thing with variations, but no respite) I altered Timonil to 2x 100mg (1-1-0). Later added Duloxetine 2x 60mg (1-1-0) which cut off the worst top-levels of pain, but only that. Now considering upping the Timonil (tegretol) dosage and frequency.
PS: European versions for all four medications mentioned in this video (depakote, tegretol, lyrica, neurontin) are directly (on-label) dedicated to treat neuropatic pain/tgn right as their secondary target after seizures. So they are not being used here off-label actually, as off-label usage would be rather uneasy here in the EU.
Is TN sometimes a precursor to MS even if a compression was found?
I don't know officially if this is my issue . Or I should say one of my many issues . But I have recently been experiencing this unbelievable pain on the right hand side of my face . It's not like an electrical pain or shock . It's more like someone punching me in the side of my face right in front of my ear that then sends pain into my jaw and all of my teeth on that side . And sometimes this will go on for 10 or 15 minutes and then will slowly subside . And has happened on some occasions three or four times in one day . And this is something I do intend to confer with my physician about . But I actually am so glad that I saw this video . Because I was having so much trouble believing that that kind of pain in the side of my face, that radiates into my jaw could possibly be an MS issue . So my curiosity is. Like other symptoms of MS, that can vary from one person to another. Can this particular issue also take a different format in the way it expresses itself ? This is something that I now will definitely have to read more about . Thank you for this video it's another eye-opener for me .
#WeHaveMS
My hair feels like it's pulled out of my scalp and continued be pulled over days .left side very sensitive all the way to jaw line . Can this be TN????
I recently found out from the ed department I have trigeminal neuralgia I was missed diagnosed of dermititis I had this for 4 months shock like bolts on my left side of my face and forehead now I just today was referred to the neurologist center I have been taking gabapentin now for almost 6 weeks I start 3 pills 3 times a day tom so far I haven't seen much improvement so I hope the neurologist will help me 3-20-24
When i would step a certain way id have these shocks from chin/lip up to forehead. Neurontin helped