How fast did your trigeminal neuralgia come on and what do you think caused it?
Question posted by sara12345 on 12 April 2013
Last updated on 18 May 2024
How fast did your pain start, especially if it was severe? My trigeminal neuralgia came on severely within 2 days. The pain was between an 8.5 to a 10 at times (on a scale of 10). It felt like shooting pain. The slightest thing would electrify my teeth and gums. Even talking made it worse for about 2 weeks, until the medicine to treat it started to work. I still have some pain.
Does anyone have any ideas about what caused their trigeminal neuralgia? Did your pain just come on for no reason? If you too had severe pain, how long did it last? Or how often has the severe pain come back? I thought it was a side effect from another med, but the doctors don't think so. They told me to check with my Botox doctor (treating my migraines) to see if that could have caused it. I am a 61 year old woman. I've read where it happens more often to people over 50 years old and more to women.
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8 Answers
MA
Marysuep
12 May 2024
Thank you for your findings ironically a friend of mine was just telling me to try the majarno I know I spelt that incorrectly. I’m glad to hear you have relief . I’m praying after my next MRI and my neuro appointment on July 3rd that we can discuss using those meds. As I too would be treating multiple illnesses like high bp and diabetes (pre) . I’m always looking and searching for new ways to help with this disease . I’m always looking for new people to chat with who understand exact what we’re going through. I have a high pain tolerance but this pain it gets me on my knees I just want to scream . I have never felt anything like it. I wouldn’t wish it on anyone and when I hear someone has it I just want to cry for them because I know first hand what they’re going through .
Votes: +0
SA
sara12345
14 May 2024
I am very sorry to hear about your pain. Have you tried Baclofen for it? That did stop the terrible pain for me. But there is at least one other drug for it that I couldn’t tolerate. When you see the cost of Mounjaro (Zepbound is same drug for weight loss), you may not want it
SA
sara12345
18 May 2024
With not being able to get Mounjaro or its other name Zepboumd, my PCP told me about compounding labs that make for far less than half the manufacturer’s price. You do need a prescription for it. You mentioned that you were prediabetic. So was I and it brought down my A1c far below the pre-diabetes level. I couldn’t tolerate the pain from TN at all. I had to take 20 to 30 mg of Baclofen. I am on a lot of medications, but I hated Baclofen because it so weakened my muscles. And recently I discovered that I could go toe to heel which I hadn’t been able to do for many years. It was the Baclofen which also can cause dizziness and unsteadiness. Last year I was in physical therapy for my balance. Didn’t help me at all. But now I have no balance problems. You are able to take the other drug, I think gabapentin, which I couldn’t. I would be interested in what your MRI and neuro appointment shows. I no longer see a way to have a friend on here. Did they stop that? If so, too bad, because I would like to friend you.
MA
Marysuep
12 May 2024
I’m in remission at 90% pain free currently I’m taking 900 mg gabapentin and 15 mg Baclofen. It took a little long for my new dosage to take effect I went from 300 mg gabapentin to the current dosage . When I have flare up they’re so intense I can’t eat, drink ,talk, blow my nose ,smile cough sneeze forget about washing your face. I was diagnosed 7 years ago I dealt with the paint until a year ago I just couldn’t take it I was getting electric shocks every min and 100s a day I would cried which triggered them even more . I pray every day it’ll stop just a quick as it started. It’s scary because there’s not much info on this disease I been doing my own research . I won’t stop until I figure out what’s causing this to happen. I do know my triggers. Caffeine, alcohol, spicy foods, acidic foods, kissing , brushing my teeth, cold or hot temp. I can go on. I just want you and all who suffer from this disease you’re not alone.
Votes: +0
SA
sara12345
12 May 2024
I found another treatment for trigeminal neuralgia. I had allergies to gabapentin. I had to take 20 to 30 mg of Baclofen which significantly weakened my muscles, but I couldn’t stand the pain like electrical shocks in my teeth. I couldn’t get up off of the floor! After being on Mounjaro (the same as now Zepbound) I no longer needed the Baclofen! But it wasn’t from the weight loss which helped a number of other medical problems, because when I would have to go off of it for a week before a test that required an empty stomach, the trigeminal neuralgia would come back. It was the drug itself. I was thrilled! I now have full strength in my limbs and body. Some of you can get this drug at a reasonable cost if you have diabetes or someone I know gets it for $25/month. Otherwise it is very costly.
We are willing to pay for it because of the trigeminal neuralgia, almost cured my sleep apnea (latest study finds it improves that), cut my blood pressure med in half, reduces the sugar craving in everyone (mine was extreme), no more severe arthritis pain in my knees and least of all, I lost 1/3 of my weight with losing 57 lbs effortlessly. BUT the biggest plus was no more muscle weakness. I had to tell about it.
AM
Amy Allen
4 April 2018
I began having the electricity pulse through the right side of my face about 2 years ago. The pain was so intense that I dropped to my knees! The pain lasted only a few seconds, but it was definitely a 10 plus! I had been to the dentist and had numbing shots for a crown, so I thought maybe the dentist has injured a nerve with the shot. I went back to have him check my teeth and make sure I didn't have a problem there. He referred me to a neurologist. I was given the diagnosis of TN and subscribed gabapentin. This has helped tremendously, but only if I stay on the meds regularly. I would love to talk to someone who has had any surgery or treatment to alleviate their TN pain.
Votes: +0
RT
RTM21
22 March 2015
Hey everyone, I feel for you and pray for you. I don't know if I have TN, but since last August I would have a shocking, electric type pain whenever talking. Came out of nowhere, still don't know why. I saw so many doctors and they thought I was crazy. An oral surgeon decided to perform a biopsy on the area (inner gums around the upper left back molar). Since then, the area is super sensitive to touch but I don't have that shocking pain when talking. The new pain feels like a stabbing pain. I saw a neurologist who kind of blew it off and just gave me Tegretol. I took it one night and haven't since. Waiting to see another neurologist. Just curious, do my symptoms sound like yours or anyone you've come across? Thank you.
Votes: +0
SA
sara12345
23 March 2015
Yes your pain does sound like mine. But I never heard of a biopsy helping the pain. In your case if it did stop the electric type pain, that's terrific. Tegretol is one of the medications used to treat TN. You don't say why you stopped taking it. You didn't say whether it was because of side effects or that it didn't help. But one night is not long enough to tell if it works. There are other meds that help TN too. So if there was a problem with the Tegretol, you should let your neurologist know and they will prescribe another medication. Good luck to you. The pain is terrible.
RT
RTM21
23 March 2015
I think mine came on from medicine too. I felt pain in the upper left gums whenever I spoke. Only on the inside of the gums by the back molar. If I tried touching the area, I felt no pain. I saw numerous professionals, mainly people specializing with the mouth. I saw an oral surgeon who thought the area was kind of inflamed so she performed a biopsy. The pain when talking kind of dulled out (still there, but not as severe), but the area is very sensitive when touched. The reason why I took tegretol for one night was because the neurologist who prescribed it kind of just gave it to me without really having a diagnosis. He thought I was crazy haha and was like, "Here, you can try tegretol." I was cautious about taking the med without a TN diagnosis because tegretol has a long list of side effects. I am going to see two more neurologists and try to get an MRI too. Where do you feel your pain? Mine is felt by the upper back left molar --> Inside gum area and slightly the back gums of that molar. Thank you for your timely reply.
FR
Freya52
12 Oct 2013
Just reading all these posts I was diagnosed yesterday no MRI have pain left side of my head my ear mouth eyes and brow. I was knocked out at work in May by my car boot at work by a member of my staff. I have one week left they are making me redundant could this have anything to do with the pain I am now in
Votes: +0
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adunlea
13 April 2013
Mine started suddenly about 4 years ago, while I was having my hair done of all things! At the time I had no idea what it was, but was lucky that my GP recognized it immediately. The MRI showed no signs of tumor or MS, and I started on Tegretol (low dose) but I didn't find it effective & went off it almost immediately as I don't like to take conventional medicine if I have a choice. I then explored the specialty dentistry side, as I had recently had a wisdom tooth removed (same side) and I was convinced there was some connection-but they couldn't find anything. The TN started being episodic so I learned to identify the site & treat it that way, ie, when it was by my hair I didn't go out without at hat or scarf in case the wind would blow it & had accupuncture, etc. The episodes got steadily worse and closer together. Last autumn I had a really bad patch where the sensitivity was in the roof of my mouth.
I was like a drooling fool on the couch for a few weeks as eating, drinking, closing my mouth, talking, swallowing, etc, caused terrible pain. At that point I started taking Lyrica, but found no relief (aside from the incredible cost!). I finally got the brainwave to try some Bonjella on the roof of my mouth, which would give me about 10 mins of relief so I could eat (soft foods), drink, etc. When this episode was waning, I changed neurologists & had another MRI. The new neuro was incredible, going through every piece of the MRI with me and explaining to me exactly what we were seeing. He tells me that my particular type of TN is 'idiopathic', which is good in the way that it can go away, but bad in the way that surgery doesn't help as it does when there is a protrusion. He also asked me to try Tegretol XR, & has let me manage the dosage myself (he knows I'm not keen). That has been a big help, but I've never gone over 1200mg/day, and that was on the very odd occasion. We are reserving judgement on surgery until I get to a point where the Tegretol & the pain management isn't helping. I am ok at this point, but I can honestly say that I haven't had a completely pain free day in over a year. I tend not to eat on the left side of my mouth, rarely get my hair cut, am very gently while washing my hair or putting cream on my face, etc. I rarely go out where there is a big group as the noise vibration can set it off and I have Reiki treatments every 2 weeks. It really is about management at this point, but it's a horrible diagnosis, so I'm sorry for you & feel your pain. Reading, research, & asking questions of - and challenging - your neurologist are key to being able to live with TN (I actually fired my first neuro for not being responsive when I was in a crisis!). There is a facial pain speciality center at UCLA which I would love to go to, but as I live in Ireland at present, I won't be able to go until I take a trip back to California. I also stopped looking at support groups and am careful what I read with regard to 'support' as I found that I was getting down by reading what could happen... maybe a head-in-the-sand approach, but I didn't find that way helpful, so now I stick to clinical facts, positivity, energy work, & spiritutality - - and live for the day when the TN has left the building! Take care and best of luck. Anne
Votes: +3
SA
sandra4453
13 April 2013
Interesting because my TN started only last year after I had a wisdom tooth pulled also (11 months prior) and also on the same side. I've only had 2 episodes, the last one was the day before Thanksgiving (lasting over a week). I always thought there was a connection but dr. says improbable. I developed 'dry socket' after the wisdom tooth came out so that added complication led me to suspect that maybe there was a connection with TN and the wisdom tooth.
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adunlea
13 April 2013
I firmly believe there is a connection! I had never had a tooth pulled before and found it pretty violent -- which says to me that of course a delicate little nerve could be damaged! And, if it's not MS or a tumor, why wouldn't it be something like this? My Reiki person agrees that it feels 'mechanical' , so I'm of the opinion that it will repair and go away! Always the positive thinker :)
SA
sandra4453
13 April 2013
My doctor said it would most likely stop (eventually!) also. One of the first things he told me when I was diagnosed was that women in my age category (I just turned 60) were likely candidates for this, that there's a high percentage of (mostly) women who get this condition ... who knows? All I know is the pain was/is debilitating, felt like every tooth on one side was abcessed. My entire face on that side felt like it was going to explode. Good luck to you and all those suffering with this.
SA
sara12345
14 April 2013
To Adunlea, Thanks so much for your information. So as I understand you, the main things that are now helping you are the Tegretal XR, which I'm assuming you take it on an "as needed basis"? Or do you need to take it steadily? I think that my doctor ruled that out because it was too close in the family with the Trileptal which caused me terrible side effects. For 1 thing causing my migraines to become severe every day. But also do I understand that the Reiki treatments help you? Is that where someone does massage on you? Exactly what part of the body do you have done with that? Also, someone working on your hair can set it off? A simple hair cut?
It is a most terrible pain condition. Thanks for sharing your experience. This pain is on top of daily headaches, which are often severe caused by a major stroke over 4 years ago. I'm taking 3 different meds daily plus wear 2 opiate patches, plus get nerve block, trigger point injections and botox injections--all to treat the migraines, but none of these did anything to help the trigeminal nerve pain. Sara
SA
sara12345
14 April 2013
To Sandra, Thanks for your comments also. I sincerely hope that we all get over this soon. Interesting that you are 60 years also to my 61 years. Sara
AD
adunlea
14 April 2013
Unfortunately it seems I can't cut out the Tegretol XR completely, because as soon as I do, I get an 'attack'. I can however cut it down to 100mg/twice a day. And yes, something as simple as wind, or someone moving my hair, or the vibration from talking loudly can trigger it as my particular weakness seems to be concentrated in the upper left branch of the nerve. I was 48 when it first happened, a bit younger than most, but I've read of lots younger, so I'm just thankful I didn't have it when my children were young as I don't know how I would have coped! Reiki is energy work, so it can be almost hands-off (just right near the body) if necessary; my practitioner also does Reflexology on me-it just depends on where my particular need is in a session. After a session I sleep like a baby :) Reiki is basically a balancing of the energies that flow throughout the body, identifying any blocks (which can occur for any reason) and freeing those.
If you chose to get Reiki, I would encourage you to see a Reiki master - so check qualifications. Accupuncture seems to be favored by many sufferers, but it only helps me when the top (head) part of the branch is sparking rather than the face. I have friends in California who are chiropractors and they have been talking about something called Quantum Neurology, which they think would help me, but as I'm living in Ireland I have no access to that at the moment. If you are located in the States, I would encourage you to look into it as it sounds like it could help with our condition. As you can see, I am a huge fan of trying alternative methods of healing before relying totally on prescription drugs! Making a study of my own body/condition has actually been more useful than all the articles I've read as it seems that the symptoms are unique to each person & attack, so that is probably your best bet for now.
SA
sara12345
14 April 2013
Adunlea, Thanks so much for all of your further detail. I greatly appreciate it. Amazing that the Reiki does so much for you. I thought that you said that the 2nd neurologist told you that the surgery wouldn't help you, so why are you still considering it? Maybe I didn't understand you correctly on that part of it. Thanks again. Sara
AD
adunlea
14 April 2013
There are several different types of surgical procedures for TN, but because there isn't a protrusion with mine, it isn't as simple I guess. I am really hoping to go to the Skullbase Institute at UCLA as I know they have cutting edge technology that they use with regard to TN. I believe they use a surgical scope now, which is so much less invasive that cutting a big hole into the skull! I'm always looking, asking, reading, etc., so when I find something that will work for me, I'm going for it, but I'd need to be really sure when it comes to brain surgery. Luckily for me, my new neurologist is fully on board with my questioning mind and he has spoken to different surgeons (neuro, macrofacial, etc) about my case. Ireland is such a small country that I won't just accept hearing from one surgeon that 'it can't be done'! We really have to be our own advocates, don't we?
SA
sara12345
15 April 2013
Yes, we do. When I read on-line, either by Mayo Clinic or NIH, there were a whole bunch of different surgeries as well as a localized radiation treatment to destroy the nerve, I believe. So there are variety of ways to approach it. Good for you for not giving up. Now that I've had 3 bad falls on our wood floors in the last 8 days, I'm beginning to wonder if maybe I really have MS. Really weird. We'll see.
AD
adunlea
15 April 2013
Hopefully not! I've often thought that having TN as a result of MS is so terribly, horribly unfair :( The problems (or so the neurosurgeon tells my neuro) with the many surgeries are not only their effectiveness long-term, but their side effects. When my doc first started talking about partial facial paralysis, I thought, 'well, compared to TN, that sound ok', but when he really went into detail, it didn't sound so great :( And I guess what the maxiofacial guy (I think I spelled this wrong in a previous post) told him was that the nerves are so incrediby small that it's a tough area to work on. I thought the Gamma Knife sounded good when I first heard about it, but again, the effectiveness is in question. I'll keep digging though!
SA
sara12345
26 April 2013
Adunlea, That's depressing about the surgical risk factors. But hopefully they will make some improvement. Sara
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adunlea
26 April 2013
I firmly believe they will (I'm annoyingly positive!). I'm really looking forward to seeing the crew at UCLA; it will be nice to speak to docs who know all about this precise condition rather than ones who read about it in textbooks or hear about it from time to time. I'm hoping that they will present some ideas, insights, etc, that I haven't heard so far. Roll on October :)
SA
sara12345
26 April 2013
Also Adunlea, I read where a tooth absess (sp?) could cause TN pain which gives credence to your tooth connection to the pain.
AD
adunlea
27 April 2013
I'm still wondering (after hearing so many of these types of stories) why the medical community argues so strongly about dental procedures not having anything to do with this! It's on my list of things to address with the folks at UCLA in October - a very long list, they won't know what hit them :)
SA
sara12345
27 April 2013
Adunlea, Good for you! Sara
TH
thats me
26 Jan 2021
Hi Adunlea, So sorry to hear all you are going trough, which I can somehow relate to while I my self is diagnosed with TN as well, I'm pretty new to it so don't have that much experience and diagnosis yet, but wanted to hear two parts of what you shared.
First one is about acupuncture, was it helpful at all, if so, did it took away all the pain or only the excruciating one? (I had today my first acupuncture appointment - which was very painful at the time, and triggered a lot of the pain which I didn't had for a while),
Second, about your meds journey, did it make you pain free or also just the excruciating pain? And about the dosage, till you got to this dosage of up to 1200 mg per day did you feel some relief or was basically the same till you got to the right dosage?
I am now on in the process of figuring my right med between Oxcarbazepine and Carbamazepine with the dosage and side effects.
Hi My trigeminal neuralgia came on about 14 years ago. It started out a little at a time.I was in my forty's. I fell on my nose and I thought that was the problem. Years passed. Pain lasts any where from 15min. to over an hour. Then I was out in the summer heat. And I was hit with a strong shock. I thought then it was my teeth. So I went to the dentist because I got shocked anytime I put my teeth together. He told me to see a neurologist . The neurologist checked me for lupus, and MS. So I had two MRI's . Turns out it was Trgeminal Neuralgia and MS. I have lesions in my cerebellum. Which can't be fixed. I am using Tegretol. Which is a up and down life with medication. But there are two good sites where you can get more info: LivingwithTN and TheTN network. I wish you best wishes in finding your answer because I feel your pain.
Votes: +2
SA
sara12345
14 April 2013
To funwithjess, Thanks so much for your response. So sorry to hear that you have been battling this disease as well as ms now. And thanks for your recommendations, but googling TN Network did not bring up anything to do with Trigeminal Nerve. I did find the support group one. Wish you to the best. Sara
SA
sara12345
14 April 2013
BTW, my pain is pretty much continual. When it was 8.5 to 10, it was for hours at a time.
MA
MacIntosh12
13 April 2013
Dear Sara, Do you have neuropathy or is it neuralgia? Is there a difference? If there is a difference, could you or would you please explain it to me? I know that your mouth is affected, but do you have any burning or a stinging sensations elsewhere on your body? I'm so sorry that I'm not answering your questions and just asking more, making it more confusing, I'm certain. I want to pipe in here, yet I don't know if what I am experiencing is neuralgia or just neuropathy. Lara p.s. I'll google the difference asap, so I don't sound so ignorant again!! Bug hug X
Votes: +1
MA
MacIntosh12
13 April 2013
Sara, I've googled neuralgia and think I've a rudimentary understanding of what you may be experiencing. I believe I have "neuralgia" all over the lower portion of my body, but neuralgia seems to affect the face, for the most part.
I'm glad you asked this question. I wish you pain relief! Lara
SA
sara12345
14 April 2013
Lara, Thanks so much for your question and concern. These are 3 sources on trigeminal nerve pain:
Wikipedia- Trigeminal neuralgia (TN), also known as suicide disease,[2] is characterized by episodes of intense pain in the face, originating from the trigeminal nerve. It has been described as among the most painful conditions known to mankind
Mayo Clinic: Episodes of severe, shooting or jabbing pain that may feel like an electric shock
NIH: TN is characterized by a sudden, severe, electric shock-like, stabbing pain that is typically felt on one side of the jaw or cheek.
It is only felt on the face or jaw and is different from simply neuralgia according to my internal medicine doctor. Sara
MA
MacIntosh12
14 April 2013
Thank you my sweet friend, for the information you provided. I feel I've a wee grasp on what you are experiencing, yet I can't say I truly understand how horrible it has affected you and others. Love, Lara
