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Trigeminal Neuralgia (Facial Nerve Pain)


What were the symptoms of your trigeminal neuralgia (facial nerve pain)? Submit Your Comment

Comment from: jp1234567, 19-24 Female (Patient) Published: February 28

I am not sure if it is trigeminal neuralgia but I've had non-stop moderate to severe unilateral pain in my gums, jaw, ears, and the right side of my head for 6 or 7 weeks. It ranges from stabbing, gnawing, tense, icepick, to burning pain. I have had 2 root canals done on the same tooth and the pain did not go away. Chewing does not trigger pain, it lessens it. Deep heat rub helps about 60 percent of the time. Endodontist and orofacial specialist did not diagnose TMJ. MRI scan shows nothing wrong. Spent USD 2000 with zero results.

Comment from: Gra, 55-64 Male (Patient) Published: February 26

My trigeminal neuralgia started last week with extremely sharp stabbing pains in my lower jaw. I thought it was my wisdom tooth pressing the other teeth forward. I developed an abscess, which I treated with paracetamol, ibuprofen and two-hourly mouthwashes. I managed to see a dentist today. She could see no infection on the x-ray, though a few days ago the whole right side of my face was swollen and painful. This has since subsided, but the pain hasn't! I'm going to make an appointment with my general physician tomorrow.

Comment from: cowcaddens, 65-74 Male (Patient) Published: February 10

When I wake up in the morning and it's time to eat, I know when I open my jaw, I will have pain from my trigeminal neuralgia. I do it slowly, the shock starts from under my right nostril up the right side of my nose, then ending on my forehead, and then it goes parallel. My hair starts to rise like something blew on it, then I freeze for a moment, and then I try it again.

Comment from: auroral, 65-74 Female (Patient) Published: December 06

My symptom of trigeminal neuralgia is a shooting pain that starts at the right upper teeth area and feels like electrical jolts up my face towards the upper cheek, right eye and towards the upper part of my ear.

Comment from: PatsyB, 65-74 Female (Patient) Published: October 08

My trigeminal neuralgia is triggered by cold air and wind. Supermarkets or anywhere with air conditioning are out of the question. I have to check that people won't use air-conditioning or open a window, before I go in their car. It is painful for days at times and sometimes makes me sick.

Comment from: Lennie G, 25-34 Female (Patient) Published: November 08

I'm not sure what is happening to my mouth but my lower left side hurts so bad when I talk, eat, drink anything, kiss my husband, put on makeup, or if just the blanket rubs against my cheek. I went to the dentist and he extracted my wisdom tooth and the pain went away for about 2 days and then the pain returned. I went back and he extracted another tooth and the pain was worse. The dentist just tells me they don't know what is wrong with me and my general doctor looks at me like I am crazy. I am wondering if it is trigeminal neuralgia.

Comment from: Tina, 65-74 Female (Patient) Published: October 03

My trigeminal neuralgia is not facial. It started a week ago with a very sharp, electric shock like pain on the inside of my mouth right lower gum area. It comes and goes. I can feel small bumps.

Comment from: Frau Vogel, 65-74 Female (Patient) Published: September 25

Symptoms of trigeminal neuralgia in 2005 and 2007 were tooth pain, and constant pain in lower left jaw that lasted about a week. In 2008 the pain became lancinating, more painful, triggered by almost anything involving the left side of my face. Early episodes were during daytime, then the pain also woke me up at night. I have tried drugs, physiotherapy and massage, MVD (microvascular decompression) surgery, and acupuncture. Now I am getting some relief from bilateral pain with a combination of drugs and CBD.

Comment from: Kathy, 55-64 Female (Patient) Published: September 13

I've had migraines since childhood. Several years ago, I started getting attacks of severe pain in my face. The trigeminal neuralgia attacks didn't last long but the pain was worse than my regular migraines. Two years ago, they started hitting more often with more pain. Now they last up to two weeks and the pain is so bad, around my mouth, my tongue, lips, upper and lower teeth, jaw, eyes, cheeks, temples, and forehead! I just don't know what to do anymore. I'm in agony.

Comment from: RD, 45-54 Female (Patient) Published: September 04

I got a sudden pain on my lower teeth (molar teeth) and jaw. I thought it was tooth ache so I gargled with salt water morning and evening, and also kept a clove near my teeth. This went on for 2 weeks, but now I don't have teeth pain. I have some sort of pain on the left side of my cheek, and it comes and goes. My trigeminal neuralgia is bearable but it is irritating at times, and I can't focus on work. It is almost 1 month and 1 week, I haven't gone to see the doctor waiting for it to cure itself. Usually it becomes more after eating and brushing my teeth.


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Comment from: STACYC, 25-34 Female (Patient) Published: August 13

I was diagnosed with trigeminal neuralgia at the age of 26. I was sent away because I was 'too young' to have it. After a year I was finally taken seriously. My symptoms show every day, with a sharp stabbing pain in my lower jaw. It is incredibly painful when brushing my teeth. Eating isn't so bad, but can be painful. I find the pain is caused when I move my tongue around, so eating an ice cream or a lolly is out of the question!

Comment from: Maria, 55-64 (Patient) Published: August 13

I would just have non-pain like shocks to the left side of my head. Then I started getting painful shocks, sometimes in my eye socket or forehead, and then it was so bad I ended up in the emergency room. Can't touch your face, eat, brush teeth, comb your hair... start the journey in trigeminal neuralgia.

Comment from: Bettybroadbent, 45-54 Female (Patient) Published: August 12

My pain has evolved since diagnosis of trigeminal neuralgia at 39 years old, 7 years ago. First, the ache was around my eye and in front of my ear with searing intermittent pains through my upper teeth. As it progressed, its range and intensity have expanded. My upper and lower teeth, ear, and eye consistently ache every day. Convection is my enemy and provokes intense quick bursts of electric shock on the entire side of my face, head, and neck. This disease crushes my soul.

Comment from: Christine W, 25-34 Female (Patient) Published: July 23

I have been suffering with daily left lower chin area and face pain for nine (9) years. I wish I could find a doctor who actually believes me or people who are suffering from trigeminal neuralgia. We also need to know you are not the only one.

Comment from: Marion , 45-54 Female (Patient) Published: June 12

I have been suffering from trigeminal neuralgia for at least 15 years after I fractured my jaw but recently it's been getting worse. I have good periods of remission, and just been told to double my medicines, but my mouth is getting really bad to the point I can't eat.

Comment from: ItchyBitchy , 45-54 Female (Patient) Published: June 06

I have been to a chiropractor, neurologist, dentist and acupuncturist for my trigeminal neuralgia. I had x-rays and a full MRI that both came back normal. I tried creams, soaps, neck stretches, Motrin, vitamin D, B12, anti-itch cream, Benadryl, rubbing alcohol, peroxide and praying but to no avail. My far left cheek just below my eye feels like there is a spider posted up in my face. Sometimes it graduates into my left ear. I tried CBD/THC oil and it calmed it a little bit. It puts me in a bad mood and it never stops.

Comment from: Smokee19, 45-54 Female (Patient) Published: June 03

I have been suffering badly with the same symptoms from trigeminal neuralgia as others here. It started last September 18. I thought I had toothache, could not touch my cheek or put make up on. I went to the dentist and he said the teeth are ok. Finally my friend told me about this and I went to the doctor who prescribed nerve relief tablets. I do feel better plus I have been using deep freeze gel which feels like a block of ice is on my face. The pain has been excruciating. If you suffer please do try deep freeze gel, no point suffering.

Comment from: Libby, 45-54 Female (Patient) Published: September 19

I have been suffering with trigeminal neuralgia for about 5 weeks. It started with extreme tooth pain but my sinuses and temple were also painful; like someone was stabbing me with an ice pick. I went to the dentist who found nothing but wanted to do a root canal and remove a few teeth. I figured I wouldn't do that if there is no cavity or abscess. So I explained this to my nurse practitioner and was put on gabapentin which made it worse. I take B-12 5000 mg with B-1/lysine and baclofen. I'm better after 3 days. I take them twice a day.

Comment from: Click, 75 or over Male (Patient) Published: July 19

My trigeminal neuralgia pain started in the back of my left ear and progressed to ear, eye and upper jaw/teeth on the left side. My left side upper lip is swollen. All areas painful to touch. I read all the other comments and not one mentioned chiropractic treatment. I went for my 1st treatment yesterday. The chiropractor only uses electronic stimulation and is certain his treatment will be helpful. He's been my doctor for 15 years and has kept this 82 year old body capable of gardening, building sheds, concrete planters, etc. I have every confidence that he can alleviate the pain.

Comment from: Betty , 55-64 Female (Patient) Published: May 15

My trigeminal neuralgia hits every day and it brings tears to my eyes. It started on my right side, awful hurting I can't eat, drink, or even talk. It feels like I'm getting shocked or tasered and it doesn't ease up. I can't take the pain much longer.

Comment from: AnneM, 65-74 (Patient) Published: April 26

I started with the face pain when I worked at my job - much of the time on phone. The phone would press on nerves on face/ear and caused the trigeminal neuralgia. Then I started to get horrid pain night and day along my cheek by the teeth and gums and onto the temple and ear area. I spent 5 months going to doctors and specialists and dentist. They all looked at me as if I were a crazy lady. Finally I listened to an elderly mother who said she had similar flare up but it did not last long. I used A535 heat cream extra strength. I applied the cream 2 to 3 times a day following the line of nerve. I started from the temple depression down my hairline to the front and back, around the ears, across cheek area, on gum lines and stopped midpoint chin. I did this for 2 weeks and it was gone. If it seemed to reoccur I did the procedure again quickly and again for a few days. I always have a tube and least little thing I apply it again. My doctor thinks it is crazy, but it works, perhaps the camphor.

Comment from: lou, 65-74 Female (Patient) Published: March 20

This flare up of trigeminal neuralgia has stayed longer and worse than before; repeatedly starts in my jaw, spreads over my ear and cheek and right eye with crying pain but if I cry it is a lot worse. Then it spreads up over my head covering the right side of my head, then it will lessen but not go away completely. A warm, not hot, compress seemed to help my eyes. We had a death in the family so I thought maybe stress, so tried to do calming things like lying down with oils of lavender, etc. Tylenol and aspirin are the only pain relievers I have taken. It seems to have spread to the other side but only around my other eye and cheek. I also had dizziness and problems with thinking and interacting with people.

Comment from: Joey, 35-44 Male (Patient) Published: March 13

I bought myself a Phillips Sonicare toothbrush a year ago (February 2017). I noticed sharp electric shocks in the right side of my face while using the toothbrush. So I stopped using the brush and the pain went away. Until the beginning of this year (2018). Nonstop electric shocks in the right side of my face when eating, speaking, shaving, brushing teeth, kissing my wife, etc. Two of my upper teeth were very painful and sensitive, so I went to the dentist who performed one root canal and pulled the other tooth. Pain was still there. Now it feels like my lower and upper jaw up to my eye socket are burning for 5 to 10 minutes per day with “milder” shocks the rest of the day. Currently waiting for specialist as my family doctor thinks it may be trigeminal neuralgia. Currently I am on anti-seizure medication (carbamazepine) 50 mg per day. It is not helping with pain. Hopefully the doctor will increase dosage.

Comment from: Leona, 45-54 Female (Patient) Published: March 06

The trigeminal neuralgia started off as if I had a filling fall out. The pain continued to get worse during that day, with several minutes in between with no pain. By 5 pm I could no longer think or see due to the intensity of the pain. It feels like someone drilling into your teeth with no Novocain. I'm taking gabapentin and Vicodin for the pain. I'm a small business owner and full time student. I do not like feeling doped up; I wonder if this will ever get better!

Comment from: Terry, 65-74 Female (Patient) Published: June 06

My pain started with a headache, which I thought at first was a migraine or sinusitis. Then the teeth started hurting, then the back of my neck. After a week the whole right side of my head was throbbing, and I had sharp shooting pains. I went to Urgent Care and after I told the doctor of my symptoms she said it probably was trigeminal neuralgia and I should probably see a neurologist. Luckily I am currently taking gabapentin so I bumped up the dosage to 2 3 times a day, and take either a Norco (7.5) or Fioricet. Needless to say as you all know the pain is terrible.

Comment from: Corky, 55-64 Female (Patient) Published: January 31

I suffered with trigeminal neuralgia years ago and took medication for it. It got better and I stopped medication. Recently I started having the shooting pain again on right side upper cheek. About 2 weeks ago my right eyelid swelled. I thought it was maybe allergy. After a couple days it was fine. Yesterday the same swelling reoccurred, this time with a little numb feeling and tingling in the upper left under brow of right eye.

Comment from: 75 or over Female (Patient) Published: September 15

My trigeminal neuralgia started with ringing in my ears, pain behind my right ear, clear up the side of my face and across my forehead. I was sent to an eye, and ENT doctors, whom I seen several times. They wanted to get me hearing aids, said my dental work was causing it, and finally they referred me to a neurologist. I have been treated by her for 3 years. She prescribed amitriptyline, 2 at bed time (10mg) and it was a godsend. I didn't have any more trouble until a week and a half ago when it acted up again. I have seen her today and she upped the prescription by 5 mg. It is too early to tell if that does the trick, I just got them today. Like I read somewhere saying the pain is unbearable, it is and I can stand witness to that. I am an 83 year old and have never had such pain in my life and I have been through a lot.

Comment from: Mariee, 45-54 (Patient) Published: September 08

I recently went to the doctor because I have had numbness on my entire face when riding in the car with the wind blowing. After that I have experienced horrible pain in my eyes and over my eyebrow over into my ear. I have had trigeminal neuralgia episodes like this with a knife like pain in my ear many times before. This is the worst ever. It feels like sandpaper rubbing on my skin just to touch it, and kills just to blink my eyes. I hope I get an answer.

Comment from: Daw and, 55-64 Female (Patient) Published: July 29

I have recently suffered trigeminal neuralgia to the nerves in my face left side. The pain was along the top teeth, cheek, eye, and ear tingling. Very painful and is similar to tooth pain. I have also experienced migraine recently. I suffer with high blood pressure and take propranolol 160 mg. I wonder if these two conditions are connected.

Comment from: leseylou1970, 35-44 Female (Patient) Published: April 17

I've just been diagnosed with trigeminal neuralgia (TMN). I've tried gabapentin but had to stop after side effects and now been prescribed Tylenol. I'm going mad with the pain! I'm finding I've got pain now that has started at the back of the head behind the left ear and is so painful, it is only leaving me for a few seconds at a time before it's another attack, the pain then radiates all the way through the face. I'm only adding because I have hydrocephalus also and my shunt is also on that side (the same side my TMN has happened) so I'm just ruling that out. This pain has only been happening for the last five days but has been happening day and night since. No pain relief works either.

Comment from: Mary, 45-54 Female (Caregiver) Published: November 04

I suffer severe facial pains. It started after having a root canal done on the upper tooth on my right side.

Comment from: Ie, 25-34 Female (Patient) Published: September 06

I'm not sure if I have trigeminal neuralgia but I felt it again last night after maybe a year. I was asleep and suddenly I've felt that my face is so hard that I couldn't move any parts of my body, even my fingers, and can't say anything, even ask for help. It's so painful and it lasted maybe 5 minutes or less. After the pain, I relaxed myself and opened my eyes. Though I was really not sure if that was real or I was only dreaming, but I felt the pain so real.

Comment from: gem, 65-74 Female (Patient) Published: August 13

For the past 5 months I have been having what I call head pressure with pain on the left side of my head, coughing, sneezing, and bending over to pick up something causes pain. I had CT scans, lumbar puncture, and all negative. Neurologist says he can't help but I need to know what's going on. I am going to see an ENT soon to find if it is trigeminal neuralgia. So frustrating.

Comment from: Bitch63, 55-64 (Patient) Published: August 02

Right now my teeth on the right side of my mouth are acting up. My head felt like an electric storm was going on, my eye was always feeling like I needed to wipe, and neck and head all the way up to my eye hurt. I haven't been told what's wrong but I might as well be the doctor, I think it is trigeminal neuralgia.

Comment from: Sarah, 19-24 Female (Patient) Published: July 08

I don't know if it is trigeminal neuralgia but the pain started yesterday. It started at the right side of my face, mostly temples and then the pain involved my head and it has also started in my neck. I don't know the reason.

Comment from: Stella, 35-44 Female (Patient) Published: September 26

I don't know if what is going on with me is trigeminal neuralgia but this sharp pain starts on the right side of my forehead to my eyebrow then the middle of my face in a straight line. It comes and goes but very painful. I already have fibromyalgia but no pain medicines. I don't know if I should make a doctor visit or wait to see if it goes away.

Comment from: Roger ferrell, 65-74 Female (Patient) Published: September 26

Symptom of my trigeminal neuralgia is if I touch my face it is painful for a couple seconds then it goes away.

Comment from: Copy, 45-54 (Patient) Published: September 25

I am not sure if it is trigeminal neuralgia, I have stabbing electrical shock pain, I feel suicidal, and I am at a loss. I can't go outside because of intense pain.

Comment from: Mario, 55-64 Male (Patient) Published: September 17

I am not sure if I have trigeminal neuralgia, here are my symptoms. I have sharp extreme pain upon putting food or water into mouth, on the left side near my ear, and I started with numbness 5 months ago. Pain goes away within a minute, with no problem after the initial shock. No pain chewing at all. From time to time the left side of face [ear] and neck feels a nagging pain. Dentist thinks it is TMJ (temporomandibular disorder), but I don't agree. He gave me exercises but now I'm getting worse and there's a knot on the left side of my neck now.

Comment from: Aaron, 25-34 Male (Patient) Published: August 28

I recently rubbed my left eye, and I started to feel a nerve in my forehead from my left eye. It does not hurt, but it never happened before. I did recently get a root canal, like two weeks before this started happening. It kind of worries me in case it is trigeminal neuralgia. I would like to know if nerve damage does something like this also.

Comment from: Robin, 35-44 Female (Caregiver) Published: August 10

I have this pain that starts from my chin, goes all the way up the side of my face near my ear, and up to my forehead. It's just a burning pain. I haven't been to a doctor yet and I'm wondering if it possibly could be trigeminal neuralgia.

Comment from: Maryalice, 65-74 Female (Patient) Published: September 07

I had what was called burning mouth syndrome. A friend told me to try gabapentin. It worked great for my tongue but I realized that I also had pain inside my entire mouth, back of my tongue, sometimes my ear and throat and it moves to the other side. I cannot eat anything without experiencing a good deal of pain. The pain increases as the day goes on. Just the brushing of my teeth to the inside of my mouth is very painful. I don't have an electric type of shock. I have a pain that is constant and nothing relieves it. I have an appointment with a neurologist later this month. I have many auto-immune diseases such as scleroderma and Sjogren's disease. I wonder if it is trigeminal neuralgia.

Comment from: Rick...., 65-74 Male (Patient) Published: October 20

I suffered from trigeminal neuralgia from 2002. At first thought it was my teeth. But no; it came and went. I started getting it bad in 2011. The doctor gave me everything going and I ended up taking an overdose of different tablets. The pain in my head was unbearable and I ended up in hospital. There they gave me oxcarbazepine and gabapentin. Wow, I had instant relief; the doctor had not even heard of it. Even though in 2013 I had surgery on my brain to separate a blood vessel (artery) that was touching my trigeminal nerve. I lost nearly 2 stone after the operation; I am not bad now.

Comment from: Maryna, 45-54 Female (Patient) Published: January 17

At first I thought it was a toothache or maybe an abscess or gum disease. I tried rinsing my mouth and started taking pain tablets. The pain became unbearable yet I couldn't pinpoint exactly where it was. After a visit to the dentist that didn't reveal anything I consulted my doctor. I was sure I had cancer as it was so painful. Luckily my doctor knew what was wrong immediately and explained neuralgia to me. I am now taking tablets and feel that it is helping already.

Comment from: oallieb, 55-64 Female (Patient) Published: November 03

I just started having this severe pain in my lower left jaw area. I went to the endodontic because I just knew it had to be my teeth and he could not find anything wrong. He told me it could be some type of neuralgia, so I looked up this site. After reading all this I think this is what I have. Sunday and Monday the pain was horrible then Tuesday no pain at all, now today it has started again not as bad as Monday but it is there waiting to take over. So I think I will make an appointment with a neurologist. Thanks for all the info!!

Comment from: gwlemons, 55-64 Male (Patient) Published: November 01

I was diagnosed with TN about 4 years ago at age 51. Out of nowhere I started having intense pain on the left side of my face and after a week of this I went to my doctor who then passed me on to a specialist. I have been on six different meds and wound up taking Lyrica. I was up to 9 pills a day (75mg each). After 6 months of this one day it just stopped hurting. That was almost 2 years ago. Within the last 2 months though i have been experiencing mild pain again up until this last weekend when the headaches started getting worse and worse. I really do not want to wind up in bed for days as mine is constant pain, it hurts all the time and on both sides of my head. I started back with Lyrica but it is really driving me nuts with the side effects. Hopefully I can get this under control and go back to being normal!

Comment from: kmbckmn, 45-54 Female (Patient) Published: April 12

My first attack occurred on August 16, 2007. I was 43. I was and am active, I train horses. It took 3 months to be diagnosed and finally was prescribed carbamazepine 200 mg. After the loading period I was up to 5.5 pills per day and spent most of my time a walking drunk for the next two years. Afraid to decrease the dosage for fear of the pain returning. I have been on maintenance of 2 pills per day and have been mostly pain free until this past weekend. Saturday started out fine but by mid day the pain had increased, by bedtime it was worse and by 2 a.m. it was unbearable. Sunday was spent in bed waiting for it to go away. Thankfully by Sunday evening it had mostly disappeared leaving me exhausted. I am self employed thankfully and taking it easy today. I have no idea why it came back or how it left. Just very glad I can get back to myself.

Comment from: Ln, 25-34 Female (Patient) Published: August 27

I am happy to find this page, everywhere I looked was just depressing but reading positive things on this page has made me crawl out of bed. I have been crying for two days after being diagnosed with trigeminal neuralgia, afraid how I'm going to live with this. But reading this makes me feel better. I am on carbamazepine, fingers crossed.

Comment from: Kp, 55-64 Female (Patient) Published: July 30

I am missing my niece's wedding whom I love so much because of trigeminal neuralgia. I know others must have missed out too, or maybe I am just weak. I'm in my mid-50s, female.

Comment from: priyanka jaiswal, 25-34 Female (Patient) Published: April 28

I have left side nerve pain, I wonder if it is trigeminal neuralgia.

Comment from: vanessa, 45-54 Female (Patient) Published: October 22

When I first found out about trigeminal neuralgia, I thought I was crazy. I had TN about for about five years. I had the surgery and it worked for three years. The pain is back again and I am taking carbamazepine 100mg, two pills, three times a day and gabapentin, one pill, three times a day. So far, so good.

Comment from: jctomes, 55-64 Female (Patient) Published: May 08

I developed TN four years ago when I was diagnosed with bilateral brain tumors. Both have since been removed, but I am in worse physical shape than before. When my neurosurgeon removed the trigeminal schwannoma, he said that the tumor had all but destroyed all three nerves. I have had daily pain for four years without any breaks. I am not a candidate for any further treatment.

Comment from: Lynn, 55-64 Male (Patient) Published: May 07

It started in December went to the dentist for a check-up. The dentist said that I had decay on tooth #19, but it had a bridge connecting my wisdom tooth. He had to remove bridge and drill on the wisdom tooth. From that day on I've had two root canals one on the wisdom tooth and one on tooth #14. I have had so much pain on left side of mouth that they say now I have neuralgia. I am taking 3 gabapentin a day.

Comment from: Hunter, 45-54 Female (Patient) Published: March 22

I was in a car accident where my face hit the steering wheel, breaking my nose and cheek bone. Now I have numbness in the right side of my face. I've started to experience nerve pain felt like an electric shock running through my eye. My therapist said it was just my nerves trying to rejuvenate. I was drinking coffee three weeks ago and out of the blue I had this pain that I can't describe. I couldn't talk, eat, or drink, then it went away. I thought it was my wisdom teeth. I went to my doctor in tears and she told me that I have TN. Now I'm on medications to manage the pain. My life has completely changed. I don't leave my house without my pain meds. This is no fun at all.

Comment from: Kaye, 65-74 Female Published: February 11

I also had TN for 10 years. I was taking all kinds of medications. You name it, I took it. They all started not working and making me nuts. I was forced to do something else. I chose vascular depression surgery at USC. For one year I had just a hint of pain once in a while. Not often. Nothing like before. Now it has been 8 years without pain.

Comment from: kathy, 55-64 Female (Patient) Published: November 20

My TN was caused after removal of a pituitary tumor. I was treated with narcotics and also have atypical face pain and cervical involvement. I was moved to a warmer climate with no stress and it was gone, but now after two surgeries and anesthesia in my mouth and a lot of stress again it has started again. I am on my sixth major cycle and this one is over two weeks looking for some relief and some new doctors in Arizona.

Comment from: Sue Py, 55-64 Female (Patient) Published: November 19

I had trigeminal neuralgia about 10 years ago, which when diagnosed was treated successfully with carbamazepine. After a few years the attacks seemed to have stopped so I was able to discontinue the carbamazepine. Since then I have been on Lyrica for lower spine pain, not related to TN and think that was probably controlling the TN attacks. I have now just had a couple of weeks of TN. I checked with the dentist and he couldn't find any dental causes. I am up in the night writing this as I have just had an attack. I found that a hot pack on that side of my face helped just now, so that's worth a try for anyone else.

Comment from: dag, 65-74 Female (Patient) Published: October 05

I developed a sharp "electric" pain down the right hand side of my nose from the corner of the eye down to the base of my nose! I usually feel it more in cold weather. When I touch it I feel as if I get a painful electric shock! My doctor thought it was sinus trouble and sent me for a scan but the consultant said he "thought" it was neuralgia and didn't offer any treatment!

Comment from: karen40, 35-44 Female (Caregiver) Published: July 20

I found out I had trigeminal neuralgia (TN) about 4 years ago. I had surgery it went away, then returned about three months now. I had surgery the same doctor did it I am still going through pain. My face burns so bad. I went back four times to this doctor and he can't tell me why my face burns so much in the same area where he did the surgery. I don't know what else to do I am hurting so bad and this doctor doesn't believe me that I am hurting after surgery. Not the same pain like before this one burns. I have no pain medication.

Published: June 04

I have been told that the use of Botox is very effective in managing the symptoms of TN. I'm currently researching any medical papers on this.

Comment from: 45-54 Female (Patient) Published: April 11

Mine started after a car accident.

Comment from: bunnee, 55-64 Female (Patient) Published: April 10

I was on flight to Vegas when a sudden tingling pain on top left of my head started going down my face. Next I had a burning pain striking the left side of my nose then striking my eye. I thought I was dying or having an aneursym. It lasted for about three minutes and included severe pain and burning. I have never felt such excruciating, striking burning pain in my life. I was prescribed gabapentin which I had been on already for my back but doctor increased from 300mg to 900mg.

Comment from: 45-54 Female (Patient) Published: March 21

I felt a sensation in my face. Then, I started getting pain in my mouth. I thought it was a toothache. Then thought I had a headache. I wasn't sure what was paining me. I visited the dentist on three occasions. However, nothing was found with the teeth. I decided to visit the doctor as I started to get pain in the ear as well. This is when I was diagnosed with trigeminal neuralgia.

Comment from: Debbie, 55-64 Female (Patient) Published: February 22

I've had TN since 2004. It came out of the blue. I had brain surgery in 2009 and I was doing well until about six months ago when it started up again. I sit all day waiting for the next zapping pain. I can't ear or wash my face or hair, or brush my teeth. I can't go outside because of the cold air and the wind. It's been very hard to live this way. I just want to live a normal life again.

Comment from: 65-74 Male (Patient) Published: February 17

I had my first TN attack about six months ago. I thought it was something having to do with teeth. I had no symptoms for six months, then I had an attack that lasted for two days. I was diagnosed by my dentist. TN pain is a pain like no other. It's like taking a taser to the face.

Comment from: DM, 65-74 Female (Patient) Published: January 10

I started out having this pain in my face when I was in my 30s. Never knew what it was until I was much older and read about it. I finally noticed that I would almost always have an attack right after I wore pierced-ear earrings. I stopped wearing the earrings and now have very, very few attacks. I did have one minor attack recently near my jaw, but an extra-strength Tylenol mostly took care of that. This is miserable stuff.

Comment from: Les, 55-64 Male (Patient) Published: December 27

I started out with a sinus infection that wouldn't go away. The next thing I know I'm having strong pain behind my left ear and down the left side of my throat. My left eye was also droopy and I had pain above the eye, maybe a slight numbness on the left side of my face. The doctor put me on Carbamazepine 200 mg. I have been increasing the dosage every three days but so far no decrease in pain but also no increase. No other symptoms so far and I see a neurologist in three weeks.

Comment from: jujubeee, 45-54 Female (Patient) Published: December 27

OH MY GOSH, this was pain WORSE than childbirth! I had a TN attack in all 3 areas. It starts as a toothache in the back of my mouth on the top. Then it gets worse. Once it started with an itchy nose. The pain BOLTED through my face and it felt like someone was reaching in and trying to pull my teeth out from the inside. Then my eye and cheek pulled and it felt like a CLAMP on my forehead on the left side. It was SURREAL.

Comment from: Andrea, 55-64 Female (Patient) Published: December 13

I began experiencing the pain of TN when I was in my forties. At first I thought it was the result of a bad root canal but my dentist proved to me it wasn't. I went to my GP and he suggested TN and explained the treatments and I decided that the complications were not acceptable. Another doctor suggested it was the result of shingles although I had no visible outbreak. I would explain the symptoms as a half mask of tingling shocks on my face and behind my ear. Occasionally it continues up in my scalp and sometimes hot stabbing pain down my neck. Most of the time it feels like my face is being drawn backwards into a grotesque smile. Cold compresses on my neck and behind my ear occasionally relieve the constant pain. Any injuries on my face or in my mouth like dental work exacerbate the intensity of the pain so I warn the dentist before any dental work. I have also developed tendonitis in my shoulder which is sometimes agony as it joins the pain up to my head. I take Tylenol, drink calming teas and avoid stress. Rest is vitally important to maintaining my ability to tolerate the pain because any medications you take can harm other organs.

Comment from: Donna, 65-74 Female Published: December 13

My pain started 11 years ago. It felt like labor pains-slow starting, rising to a crescendo then slowly fading to dull. Oddly if I rinsed the area with cold water, the pain subsided for a bit.

Comment from: supergos, 45-54 Female (Patient) Published: November 01

I was diagnosed with TN about 4 years ago. I was lucky that my nurse also suffered with this awful condition. My doctor was able to diagnose me during my first visit! I do not share all the symptoms that are listed here. When I have an attack, it feels like I have the worst toothache ever, both top and bottom - only on the left side. My jawbones also hurt like mad both top and bottom.

Comment from: Loo, 7-12 Female (Caregiver) Published: October 26

My daughter who is 10 years old has the symptoms of TN and we are in the diagnosing phase. It is really scary. So far nothing is helping, she just started on Gabapentin, which is making her dizzy and feel off with no relief as yet.

Comment from: Sadie, 45-54 (Patient) Published: September 06

I had neck pain for a while and I thought it was due to sleeping wrong. Then I had suffered headaches from day to day. It was one evening at work I had stabbing pain in the left side, back of my head. I stayed at work thinking it was just another headache. The next morning they come more often and more painful. These sharp shooting pains in my head. I went to doctor and he started me on carbamazepine 100 mg. twice a day. Pain is gone, but I feel like a walking Zombie. I can't go on like this! I go back to doctor in a week, and hopefully he will have more answers for me.

Comment from: AWilliams, 45-54 Female (Patient) Published: August 23

I was first diagnosed with TN in 1999 at the age of 40. Went to various Neurologists in the US and was placed on different drugs for over 6 months. The drugs did not help at all with the pain and they caused major side effects including rashes, sleepiness to the point of not being able to drive or work. I had Gamma Knife Surgery in Atlanta, GA and was pain free for 10 years. The symptoms came back and I had a second Gamma Knife surgery two years ago. Now the pain is slowly coming back. I am now living in Melbourne, Australia and I am scheduled to see a neurosurgeon tomorrow to see what other options are available. The Gamma Knife surgery was wonderful. It was an easy procedure with just slight numbness in the face as its only side effect. I understand that I cannot have a third gamma knife procedure but I would take it if it were available. The last pain-free 12 years have been wonderful and I would urge any sufferer to investigate this procedure. Good luck to all who suffer from this horrible condition.

Comment from: 45-54 Female (Patient) Published: August 11

I had a head injury on the right side of my head in the hairline area over 5 years ago. I've seen a few doctors for the severe pain I get in the injured area on my head. Doctors say I have permanent nerve damage to the trigeminal nerve. The injured area is numb, but gives me such severe shooting pain. The doctors are not agreeing that the same branch area of the nerve is damaged. My symptoms are all on my right side. They start from the injured area with a sharp shooting pain and goes down my right cheek with a tingling, pins and needle sensation that goes down to the corner of my mouth. I have a slipped disk in my neck from the injury also. I am on medicine to try and stop the pain from happening but it isn't always working. I'm still trying new things to help the pain. One option was Botox.

Comment from: 55-64 Female (Patient) Published: July 11

I have experienced trigeminal neuralgia beginning with unexplainable back molar pain, only on the right side of my face for 15 years. It has grown into swelling at the right base of my neck, tender to the touch during an attack and severe strikes of pain, around my eye, my jaw, my temple and a few times, in my right eye. I can feel like I will "pass out" for a moment. My treatment is NOT to use drugs with side effects. Apply cold immediately to your trigeminal neck area. Lie down. Deep breathing seems to increase oxygen intake and help as well.

Comment from: burning, 65-74 Female Published: June 20

I have been having a burning between one side of my nose and cheek area. Sometimes, I also have pain in the temple area. Teeth ache at times. This has been going on for a couple of months now. I went to my doctor a couple of days ago and she told me it was facial neuralgia. No tests were done and no medications were given. The burning was happening a few times a day for short intervals but is just now happening for a better part of the day and lasts longer and longer.

Comment from: pumpkin1136, 55-64 Female (Patient) Published: June 15

I remember the pain like it was yesterday, as nothing compares to the pain stabbing through my eye into my head. The pain was so severe that I became irrational. Treatment was for trigeminal neuralgia and encephalitis. While in the hospital, the illness led to shingles on my lower abdomen and hips, which still recur several times a year.

Comment from: Lee SCHOFIELD, 55-64 Female (Patient) Published: June 08

Typically, my symptoms are severe tooth ache, earache, blurred vision, nausea, severe headache, pain in the glands around my neck which is very sore to the touch and pain in the back of my neck. I have been a sufferer for around 27 years. It has been suggested by a specialist at a pain management clinic I have attended that the cause of my TGN is nerve damage from past dental treatment.

Comment from: maddy jacobs, 35-44 Female (Patient) Published: June 02

I am 44 yrs old and I have been diagnosed with multiple sclerosis about 6 months ago. About 2 months ago I experienced these horrible shocking pains in my face. Never in my life would I have known such pain if someone explained it to me. My neurologist knew straight away it was trigeminal neuralgia so she put me on Gabapentin capsules.

Comment from: Hummingbird, 55-64 Female Published: May 06

I am a 59 year old female. I noticed what seemed to be nerve pain in my left cheek a few years ago and then the pain seemed to travel down the side of my face until it finally disappeared. During this time it is very painful, but not unbearable, where even 1 hair brushing up against the cheek causes pain. I take ibuprofen and eventually it goes away. I seem to be experiencing this 2 to 3 times per year.

Comment from: Gail, 55-64 Female (Patient) Published: May 05

I experienced a sharp stab of pain above my ear on the right side of my face, completely out of the blue. I cannot pinpoint a specific area that is sensitive to touch, but it is very painful when I open my mouth widely (top of the jawbone) or move my jaw to the left. I also experience earache of varying intensities, especially at night when lying down. Sleep deprivation has become an unwelcome visitor. My GP has diagnosed the condition as neuralgia for now and administered a cortisone injection which did bring some relief. She also advised me to continue applying arnica oil to the. I seem to fit the profile as I'm a female in my early 60s with a history of myasthenia gravis. I live in hope that the neuralgia will disappear as quickly as it came.

Comment from: [email protected], 75 or over Female (Patient) Published: April 27

About 3yrs ago I got a terrible headache. I could not touch my head. In all of my 82yrs I never got a headache like that, in fact I never get many headaches so this was very surprising to me. I decided to make an appointment with a neurologist. He gave me an MRI and came up with the conclusion that I had trigeminal neuralgia. I did not know what that was so I started to read and try to discover what this disease was all about. He prescribed Lyrica and not long after my pain was gone. I was very surprised and happy. But about 8 months later I got a pain in my jaw. It was much worse than the one in my head. I could not eat and the pain got worse. I had two events where the pain was horrible. It had me in tears. I could not believe it. So back to the neurologist I went. He explained how this nerve comes down from your head to your jaw. He prescribed carbamazepine. At first it helped some but later I had to take more than one and I still had the pain. I could not chew and could not drink anything cold. I did not want to go anyplace for fright that I would get that horrible pain. I notice that in the summer the pain goes away but returns in the winter.

Comment from: justanotherpatient, Published: March 21

At first, it was misdiagnosed as burning mouth syndrome. Then, after two years of workups by various specialists, a neurologist diagnosed it as trigeminal neuralgia. One symptom I have not seen mentioned is thick mucus with a postnasal drip.

Comment from: kelly, 35-44 Female Published: March 17

My symptoms first started years ago , which was a stabbing pain in my top back teeth then slowly would spread through my face and temple , never going past the centre of my face(I only suffer on the left side). A cold breeze or brushing my teeth would make it ten times worse. I always thought it was a dental problem til I went to the doctor thinking I had an infection, which is the first time I`d ever heard of trigeminal nerve. At the moment I've only taken pain medication which makes me sick. I find a heat pack on the face helps a lot. My episodes can last up to two weeks so, if anyone has got any suggestions for managing the pain that would be awesome. I find this condition debilitating at times.

Comment from: Mags, 45-54 Female (Patient) Published: March 02

I've suffered with this condition for about 5 years now. It started when I was 39. My pain is not on my face. Mine is around my head with very sharp pains that last about 60 seconds at a time and sometimes staying for a week or more. It's very uncomfortable, though pressure seems to help a bit.

Comment from: mary, 55-64 Male (Patient) Published: February 22

I have had pain since I was 50. No one could diagnose it until 12 years later. No Doctor can give an answer the pain goes to my neck and into my chest.

Comment from: Keith, 65-74 Male (Patient) Published: February 07

My TM attacks lasted over 20 years, often twice each week and lasting between 30 - 40 hrs each time, mine was chronic earache, always starting at low level but developing into the most awful, unbearable pain before suddenly going off. I do not like taking painkillers, with the frequency and extent of the dreadful pain I would have become addicted. I found that when the pain was severe, usually at night when there was no question of sleeping, it was marginally less painful if I sat in a chair and slightly easier still if I stood. If the weather permitted I would go for long walks, for no reason other than the slight relief I got by standing up. Sadly, sometimes I might be 3 miles from my bed when the pain suddenly went off - the relief was unbelievable - but I had a long march back to my lovely bed usually at 4 in the morning, to be up at 7am for work. I was over 50 when I ''grew out'' of these attacks having been diagnosed in my early 30s. I recall when the consultant told me what I was suffering with and also that there was nothing that could be done to cure me or ease the pain, I instantly burst into tears, I was a fully grown man in a Harley Street clinic. Any fellow sufferer has my greatest sympathy, it is the worst pain ever, but don't give up, it will eventually go away, I haven't had an attack for over 15 years but I will never, ever forget the extreme pain I had to put up with.

Comment from: sarah, 55-64 Female (Patient) Published: January 18

I have had TN for 3 yrs now in all three branches on my left side, and occasionally on my right also but it's not as bad on the right. I went thru all the miseries of seeing dentist and physicians most of us go through. I was recently got diagnosed with Fibromyalgia after taking yrs to diagnose. I've tried so many medications I can't remember them all. I am so happy when I hear some fellow sufferers can find treatment that helps them! The medication helps to keep it where I can bear it, but the pain is constant.

Comment from: MANOJ, 45-54 Male (Patient) Published: July 26

Acute facial pain starting from gum and passes across nose to head. Problem in chewing and even to talk. Sinusitis operation done, ANA DNA test done, MRI done, CITI SCAN done, for last 12 years no relief.

Comment from: Katrina, 35-44 Female (Patient) Published: April 26

I have had pain for about 3 years but only recently have been diagnosed with TN. Most of the time I feel like I have something seriously wrong with my upper teeth/jaw and have asked for a Dental X-ray at every visit, only to be told my teeth are fine. If a dentist suggested dentures I am sure I would have agreed. At times the pain gets much, much worse extending to my lower jaw, sinus (had them checked too), nose, eye socket and temple. For me it feels like the whole side of my face has been crushed or smashed. Thankfully my skin doesn't hurt so I can usually hold my face - not that it stops the pain.

Comment from: Mary, 55-64 Female (Patient) Published: March 02

Two months ago I started having pain in my lower left side molars. After seeing my dentist twice, an ear, nose and throat doctor and today an oral surgeon, I am diagnosed with trigeminal neuralgia?. Next I will see a neurologist. Three weeks ago I was started on neurotin and it is helping with my overall face pain. What I have found that helps the most is 800 mgs. of prescription ibuprophen. If that doesn't give me relief I might take 1 percoset also but only for the worst attacks. I hope as my neurotin is increased, I will no longer need to use any narcotics.

Comment from: john a qld aus, 55-64 Male (Patient) Published: January 14

To start off it begins as a numbness near the ear very light almost unnoticed, then a tingle on the cheek for maybe 6 to 10 days before the first episode hits, firstly a small event lasting just a half second progressing to much longer pain of 3 seconds and longer. Pressure near the ear helps sometimes. As I have meds(carbamazepine 200 and endep 10) from previous attack, I have started to take these and hope to get some relief soon. This is my 3rd event since 2006.


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