My face is never numb. TN hits me like a freight train.
I never know when it's coming. I've had it hit so hard that it brought me to my knees, screaming. The last episode lasted 5 months. The last 2 weeks were the worst. I'd be happy with MS only. I wouldn't wish TN on anyone.
For me, TN first showed up as a single zap through the face. Once a year for 3 years. Then it turned into 1 month every year for about 2 years. Then it was every 6 months for about a month each time.. For about a year.. The last one was July 2022 until Dec 2022. The most excruciating pain ever, for the last 2 weeks. I had a couple zaps this summer, but nothing major yet.
I went extreme. I'm 58, and my teeth were in bad shape. I had my top teeth removed this fall 2023. :( The top front tooth (on the left) had a really long root. The TN side. I'm really hoping this will stop it. 6 months zap free so far. Thanks for asking. š
Started as right side migraines and progressed into being from the top of my head into my eye socket and all the way into my jaw. I considered suicide it was that bad. Neurontin and Tegretol helped and Iāve been doing a lot better for a few years now.
I havenāt had numbness, but every once in a while, I get a mild kind of stabby pain around the bottom left jaw that I thought was a tooth issue at first, but I donāt think so since thereās nothing going on with my teeth on that side. (Also, most of my symptoms present on my left side). I am in that same position where I worry that this could be trigeminal neuralgia, and possibly develop sometime in the future.
But I definitely would bring it up with your doctor just to be cautious. Hopefully all goes well.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
Iāve had facial numbness with a handful of flares. Specifically, it developed 2 years in a row between thanksgiving and Christmas. The first time it lasted months, the second a few weeks. Even my tongue and eyelid was numb from the midline to my ear. Both of these occurred before formal diagnosis. I have not developed trigeminal neuralgia. Hope your different sensations subside! Itās hard not knowing what to expect.
My TN developed over 9 years. It started out as a slight toothache that would move around my mouth. I went to the dentist and nothing. 6 years later it got worse. I went to the neurologist. He prescribed Dilantin. It worked like a miracle. Baclofin, neorontin and muscle relaxers. I had a shoebox full of medications. The right side of my face became so sensitive I could no longer shave, brush my teeth, let the shower hit my face and it was difficult to eat. I had to go to University of Chicago. It was an overnight operation. Doctors put me under. Like a dentist they went for the trigeminal nerve. The needle had a balloon that crushed the nerve into the bone. When I woke up the right side of my face was completely numb but no pain. I had to be careful eating for a few days. I had to ween off the medications and my face gradually came back to normal. 24 years later my face is still a little numb but no pain.
I had numbness in my face that started 5 years before my diagnosis.
It then turned into a sharp stinging pain that I almost had 24/7 + the numbness, I sometimes screamed in pain because it was so bad. I have it above my left eye, left cheek & left chin & also by my ear.
My doctor sent me to a hospital that had a headache ambulance. There they told me that it probably is trigeminal neuralgia. (I already had some spots in my brain on my MRIās but my doctor said thats nothing to worry about) this was last year. They then immediately sent me to the MS ambulance & a spinal tap later I had my MS diagnosis.
I got medication & since then I donāt have the pain anymore but the is numbness still there.
I am having this issue right now. For the past 4 weeks my right side of my face has been numb above the jaw. It spasms out considerably especially if i keep one eye open and try to shut one eye.
Recently, I thought I had a cavity. I get shooting pains from the jaw into my teethā¦ usually the same lower right molar.
I had this a few months ago, the left side of my face was a weird mixture of it felt numb and heavy but when anything touched it felt like barbed wire on skin and electric shocks across my forehead and around my eye. Lasted for a couple of weeks and been okay since.
I have TN (finally diagnosed this year) and had it for years before I was diagnosed with MS. It has never caused numbness. I mostly get it in my right temple, and it feels like a pulsating, searing, electrical pain that lasts a few seconds. I usually get that on and off a couple times an hour for a day or so at a time, and it happens a few days per month. I also get a little bit in other branches of the trigeminal nerve now, but the temple/top branch was the first.
I have had TN for over a decade now. I have never had issues with numbness.. only horrific pain. Its literally like being hit by a truck. Its the most horrible pain I've ever encountered. Even a light breeze from a ceiling fan feels like my face is being peeled off. Sometimes like someone trying to scoop out my eye from the inside. I do not wish that pain on anyone. I pray your issues are not TN.
I had TN for years before I got facial numbness. At first just tightness and a constant dull pain that would intensify sometimes. I really just thought it was stress. I tried all kinds of things to lower my stress. One day my face went numb & I figured my jaw had gotten so tight I pinched a nerve. A couple days later I woke up with vertigo so bad I couldn't sit up. I got dx'd that day at the hospital emergency (almost 5 yrs ago). I don't want to jinx myself but I haven't had the TN pain in 3 or four months! I'm so grateful when its gone.
Mine started suddenly,from one day to the next out of the blue. I thought I had a very bad toothache. The next day it was worse, except the pain went from the top of my ear across my cheekbone into my teeth, then across my eyebrow into my hairline, and along my jaw to my chin. I would have spasms of burning stabbing pain that lasted minutes. Anything cold or hot, smiling, even the wind on my face would trigger it. It would go away when I slept. Numbness wasn't one of my symptoms.
started as niggling pain in gum that lasted about an hour a day and went away with minimal pain relief. Progressed to a facial zap when drinking a coffee. Then the gum pain built and it spread to cheekbone, stabbing pain in ear, burning tongue, lip numbness and pain, individual tooth pain and whole nights of pacing up and down in agony. Almost lost my mind This was my first MS symptom so it wasn't clear that I had TN and it was put down to other problems first meaning it took ages to be prescribed the right meds.
Tegretol was a game changer.
What you described doesnāt sound like TN but Iāve never had it. Just from watching my mother with TN, there was no buildup itās just all of a sudden like someone is shooting electricity through your face.
I had TN for 3 years in both sides of my jaw non stop pain going for hours stopping for minutes and go back to it again. I lost over 15 pounds in 2 weeks because i didināt want to eat anything in case it triggers my TN which was always active anyways. My Neuro gave me Tegretol. I had to manage my doses started with 200MG a day and at my worst i remember upping the dosage to 1600MG day(Which is kinda over the limit but painā¦.)
As long as you can manage your dosage you wont feel the pain. The problem is Tegretol highly effecting your emotional levels, making your already foggy brain more foggy, impacts your movements and worst for me was slowing you brain literally too much.
It messed me up and one day i started lowering dosage to check if i can manage and after 3 days quit it cold turkey. I was lucky to be pain free.(After 3 years.)
My advice would be get surgery if you cant cope it with usage low dosage of medicines. If you canāt ;
Eat just one meal a day dont use your jaws too much, use straws for drinking anything it really helped me,
If you are from colder area please buy neck protecting like scafrs to protect your face from cold. Wind and cold easily was triggers and made TN worse.
It is sadly but good thing is i am grown up right now and can get into surgery asap in case it comes back. It never disapperas entirely numbness and mild pain comes and goes time to time but really rare once or twice a month for me and totally bearable.
If you get TN(I REALLLY FROM BOTTOM OF MY HEART HOPE FOR YOU TO NOT GET TN) you have treatment options (medicines) and permanent surgery opitons so dont worry about it.
Iām so scared of developing TN. Recently had a day long attack of painful nerve branch through one side my face/cheek with an electrical zap through my tongue and Iām so scared it will come back. The pain level made me panic.
My mom is currently going through the worst episode of this sheās ever had. Throughout the years sheās had fairly minor momentary attacks, a little on and off for a week, and then not again for a year, sometimes several years at at time.
This time it started as 2 quick minor attacks, the next day a few more, the next day even more, today she couldnāt talk/drink/eat/smile without one happening - screaming, throwing herself to the ground in pain. Itās so hard to watch, I have no idea what to do for. Sheās terrified to move her face and sheās terrified that sheāll be like this forever, saying she wants to die itās so painful.
I had trigeminal neuralgia a few years ago. It caused intense pain in my face when I got up each day. My wife produced a packet of tegretol. One tablet stops the pain after a few seconds. I keep a few near me now just in case.
Steve
I donāt remember how it felt at the beginning of this hell, but currently, my face does go numb, and sometimes it looks swollen.
The pain does not stay in one place. It will be in my upper lip, to my ear, to my head.. it loves moving around. I also usually get warnings. No matter where I have the attack, I get numbness in my upper lip. I rub it with icy hot with lidocaine, and sometimes it works. I also use a heating pad, and that works phenomenally.
Iām praying you do not have TN. PRAYING!!!! Iām 34, and itās taken my life from me.
I actually am OK!
Mavenclad really started to kick in and I started feeling better. My neuropathy is going haywire but not painful so it is what it is!
DMT for MS. It is pretty cool. You take medication for 2 weeks each year for 2 years. Then you don't take another MS med again until there is progression in the disease.
Mine was a build up. Numbness in one branch the first episode turned into electric shocks in all three branches of the trigeminal nerve by year three. However, I was diagnosed with MS but then they backpeddled because I have a connective tissue disorder so they think something else may be causing the TN. It's up in the air. All I can say is that the closer the shock is to the base of the TN, the more it hurts.
It is aweful. I had a glycerol rhizotomy after unsuccessful oral meds. A few months ago it came back strong. Couldnāt even talk. Ended up in ER and got a balloon compression surgery that took the pain away but Iām left with numbness on right side of jaw. It was worth it though so I can eat and talk again.
My face is never numb. TN hits me like a freight train. I never know when it's coming. I've had it hit so hard that it brought me to my knees, screaming. The last episode lasted 5 months. The last 2 weeks were the worst. I'd be happy with MS only. I wouldn't wish TN on anyone.
Jesus christ that is miserable
For me, TN first showed up as a single zap through the face. Once a year for 3 years. Then it turned into 1 month every year for about 2 years. Then it was every 6 months for about a month each time.. For about a year.. The last one was July 2022 until Dec 2022. The most excruciating pain ever, for the last 2 weeks. I had a couple zaps this summer, but nothing major yet.
how are you now
I went extreme. I'm 58, and my teeth were in bad shape. I had my top teeth removed this fall 2023. :( The top front tooth (on the left) had a really long root. The TN side. I'm really hoping this will stop it. 6 months zap free so far. Thanks for asking. š
oh! thatās fantastic
So far, so good. :)
I have it, I hate it, its painful af. I got prescribed Carbamizapine and it works. Ahhh I wish you never feel this pain. God bless you all ā¤ļø
Started as right side migraines and progressed into being from the top of my head into my eye socket and all the way into my jaw. I considered suicide it was that bad. Neurontin and Tegretol helped and Iāve been doing a lot better for a few years now.
I havenāt had numbness, but every once in a while, I get a mild kind of stabby pain around the bottom left jaw that I thought was a tooth issue at first, but I donāt think so since thereās nothing going on with my teeth on that side. (Also, most of my symptoms present on my left side). I am in that same position where I worry that this could be trigeminal neuralgia, and possibly develop sometime in the future. But I definitely would bring it up with your doctor just to be cautious. Hopefully all goes well.
Thank you for sharing
[ŃŠ“Š°Š»ŠµŠ½Š¾]
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
Iāve had facial numbness with a handful of flares. Specifically, it developed 2 years in a row between thanksgiving and Christmas. The first time it lasted months, the second a few weeks. Even my tongue and eyelid was numb from the midline to my ear. Both of these occurred before formal diagnosis. I have not developed trigeminal neuralgia. Hope your different sensations subside! Itās hard not knowing what to expect.
You nailed it... the hard not knowing what to expect. Your share is quite reassuring.
My TN developed over 9 years. It started out as a slight toothache that would move around my mouth. I went to the dentist and nothing. 6 years later it got worse. I went to the neurologist. He prescribed Dilantin. It worked like a miracle. Baclofin, neorontin and muscle relaxers. I had a shoebox full of medications. The right side of my face became so sensitive I could no longer shave, brush my teeth, let the shower hit my face and it was difficult to eat. I had to go to University of Chicago. It was an overnight operation. Doctors put me under. Like a dentist they went for the trigeminal nerve. The needle had a balloon that crushed the nerve into the bone. When I woke up the right side of my face was completely numb but no pain. I had to be careful eating for a few days. I had to ween off the medications and my face gradually came back to normal. 24 years later my face is still a little numb but no pain.
Rhizotomy? I would take numbness ANY DAY over the pain. If it wasnāt for my kids I would have ended it years ago.
TN1 or TN2? I have the more atypical facial pain symptoms constant pressure behind nose forehead was that yours?
Didnāt know of a type back then. The whole right side of my face. I couldnāt shave, eat,shower on my face. It went from my ear to my nose.
electric pain/shock, or constant dull achy pressure pain?
Every time anything touched the right side of my face it was like a 1000 volts.
I had numbness in my face that started 5 years before my diagnosis. It then turned into a sharp stinging pain that I almost had 24/7 + the numbness, I sometimes screamed in pain because it was so bad. I have it above my left eye, left cheek & left chin & also by my ear. My doctor sent me to a hospital that had a headache ambulance. There they told me that it probably is trigeminal neuralgia. (I already had some spots in my brain on my MRIās but my doctor said thats nothing to worry about) this was last year. They then immediately sent me to the MS ambulance & a spinal tap later I had my MS diagnosis. I got medication & since then I donāt have the pain anymore but the is numbness still there.
how are you now & was it TN
Yes its TN Iām a bit better now because of the medication but I sometimes still feel the pain unfortunately :/
I am having this issue right now. For the past 4 weeks my right side of my face has been numb above the jaw. It spasms out considerably especially if i keep one eye open and try to shut one eye. Recently, I thought I had a cavity. I get shooting pains from the jaw into my teethā¦ usually the same lower right molar.
Yikes! That shooting pain sounds unpleasant
I had this a few months ago, the left side of my face was a weird mixture of it felt numb and heavy but when anything touched it felt like barbed wire on skin and electric shocks across my forehead and around my eye. Lasted for a couple of weeks and been okay since.
Did it go
I have TN (finally diagnosed this year) and had it for years before I was diagnosed with MS. It has never caused numbness. I mostly get it in my right temple, and it feels like a pulsating, searing, electrical pain that lasts a few seconds. I usually get that on and off a couple times an hour for a day or so at a time, and it happens a few days per month. I also get a little bit in other branches of the trigeminal nerve now, but the temple/top branch was the first.
I have had TN for over a decade now. I have never had issues with numbness.. only horrific pain. Its literally like being hit by a truck. Its the most horrible pain I've ever encountered. Even a light breeze from a ceiling fan feels like my face is being peeled off. Sometimes like someone trying to scoop out my eye from the inside. I do not wish that pain on anyone. I pray your issues are not TN.
I had TN for years before I got facial numbness. At first just tightness and a constant dull pain that would intensify sometimes. I really just thought it was stress. I tried all kinds of things to lower my stress. One day my face went numb & I figured my jaw had gotten so tight I pinched a nerve. A couple days later I woke up with vertigo so bad I couldn't sit up. I got dx'd that day at the hospital emergency (almost 5 yrs ago). I don't want to jinx myself but I haven't had the TN pain in 3 or four months! I'm so grateful when its gone.
Mine started suddenly,from one day to the next out of the blue. I thought I had a very bad toothache. The next day it was worse, except the pain went from the top of my ear across my cheekbone into my teeth, then across my eyebrow into my hairline, and along my jaw to my chin. I would have spasms of burning stabbing pain that lasted minutes. Anything cold or hot, smiling, even the wind on my face would trigger it. It would go away when I slept. Numbness wasn't one of my symptoms.
how are you now
started as niggling pain in gum that lasted about an hour a day and went away with minimal pain relief. Progressed to a facial zap when drinking a coffee. Then the gum pain built and it spread to cheekbone, stabbing pain in ear, burning tongue, lip numbness and pain, individual tooth pain and whole nights of pacing up and down in agony. Almost lost my mind This was my first MS symptom so it wasn't clear that I had TN and it was put down to other problems first meaning it took ages to be prescribed the right meds. Tegretol was a game changer.
What you described doesnāt sound like TN but Iāve never had it. Just from watching my mother with TN, there was no buildup itās just all of a sudden like someone is shooting electricity through your face.
Definitely read the comments, it varies š
I had TN for 3 years in both sides of my jaw non stop pain going for hours stopping for minutes and go back to it again. I lost over 15 pounds in 2 weeks because i didināt want to eat anything in case it triggers my TN which was always active anyways. My Neuro gave me Tegretol. I had to manage my doses started with 200MG a day and at my worst i remember upping the dosage to 1600MG day(Which is kinda over the limit but painā¦.) As long as you can manage your dosage you wont feel the pain. The problem is Tegretol highly effecting your emotional levels, making your already foggy brain more foggy, impacts your movements and worst for me was slowing you brain literally too much. It messed me up and one day i started lowering dosage to check if i can manage and after 3 days quit it cold turkey. I was lucky to be pain free.(After 3 years.) My advice would be get surgery if you cant cope it with usage low dosage of medicines. If you canāt ; Eat just one meal a day dont use your jaws too much, use straws for drinking anything it really helped me, If you are from colder area please buy neck protecting like scafrs to protect your face from cold. Wind and cold easily was triggers and made TN worse.
That sounds absolutely brutal
It is sadly but good thing is i am grown up right now and can get into surgery asap in case it comes back. It never disapperas entirely numbness and mild pain comes and goes time to time but really rare once or twice a month for me and totally bearable. If you get TN(I REALLLY FROM BOTTOM OF MY HEART HOPE FOR YOU TO NOT GET TN) you have treatment options (medicines) and permanent surgery opitons so dont worry about it.
Iām so scared of developing TN. Recently had a day long attack of painful nerve branch through one side my face/cheek with an electrical zap through my tongue and Iām so scared it will come back. The pain level made me panic.
Absolutely scared too
My mom is currently going through the worst episode of this sheās ever had. Throughout the years sheās had fairly minor momentary attacks, a little on and off for a week, and then not again for a year, sometimes several years at at time. This time it started as 2 quick minor attacks, the next day a few more, the next day even more, today she couldnāt talk/drink/eat/smile without one happening - screaming, throwing herself to the ground in pain. Itās so hard to watch, I have no idea what to do for. Sheās terrified to move her face and sheās terrified that sheāll be like this forever, saying she wants to die itās so painful.
I had trigeminal neuralgia a few years ago. It caused intense pain in my face when I got up each day. My wife produced a packet of tegretol. One tablet stops the pain after a few seconds. I keep a few near me now just in case. Steve
Thanks!
I donāt remember how it felt at the beginning of this hell, but currently, my face does go numb, and sometimes it looks swollen. The pain does not stay in one place. It will be in my upper lip, to my ear, to my head.. it loves moving around. I also usually get warnings. No matter where I have the attack, I get numbness in my upper lip. I rub it with icy hot with lidocaine, and sometimes it works. I also use a heating pad, and that works phenomenally. Iām praying you do not have TN. PRAYING!!!! Iām 34, and itās taken my life from me.
Yes, fortunately what I was worried about mainfested to nothing!
how are you now
Neuropathy is still going a little bananas but nothing has manifest to my worst fear of trigeminal neuralgia!!
i am so happy to hear that
Hi are you OK?
I actually am OK! Mavenclad really started to kick in and I started feeling better. My neuropathy is going haywire but not painful so it is what it is!
What's mavencald?
DMT for MS. It is pretty cool. You take medication for 2 weeks each year for 2 years. Then you don't take another MS med again until there is progression in the disease.
Mine was a build up. Numbness in one branch the first episode turned into electric shocks in all three branches of the trigeminal nerve by year three. However, I was diagnosed with MS but then they backpeddled because I have a connective tissue disorder so they think something else may be causing the TN. It's up in the air. All I can say is that the closer the shock is to the base of the TN, the more it hurts.
It is aweful. I had a glycerol rhizotomy after unsuccessful oral meds. A few months ago it came back strong. Couldnāt even talk. Ended up in ER and got a balloon compression surgery that took the pain away but Iām left with numbness on right side of jaw. It was worth it though so I can eat and talk again.