I understand why it's called the suicide disease. I suffer from trigeminal neuralgia and have spent hours crying ..

This explains my symptoms 100%. I thought I was going mad. Thank you so much .

I haven't had pain that sent me to the ER but I have everything you've described. I hope you get relief.

I haven't got this disease. I found out about it by just researching on most intense pain a human is able to feel and this disease came up. I really hope I don't get this disease. Anyone who has it must be the strongest people in the world.

Did the same thing I did!! Unbelievable!! I ALSO had teeth removed that I believed were causing the pain. All dentists should know about this condition. It was a dentist who finally referred me to a neurologist.

What a sweet couple! Bless her heart!

I have TN, I'm getting to the point that I don't care what the doctors do as long as the pain stops

Thank you. I've been suffering with trigeminal damage for 25 years. People don't understand that it comes and goes although money never goes away long... wishing you the best

I experienced this 2 days ago my left half face was so in pain then the next day my right side of face! God bless us all

I have been experiencing similar, milder symptoms until today, where I'd equate the feeling to jamming a hot nail in between my upper and lower molars on my left side. My docs are thinking it may be the same thing. It brought me to tears and made me physically ill when the pain would occur. The attacks would last 3-5 minutes, with an onset of 20 seconds or so. Then I'd get 10-15 minutes of relief and the process would start all over.

I’m so sorry you have this. I’d love to hear a more recent update. How are you doing? I was diagnosed in April. I had been to several dentists and was scheduled for a root canal. I went to the ER and the doctor there diagnosed it immediately. I’ve gotten relief from medication. Thanks for sharing your experience.

I've gone to doctors for years now and shared that it felt like someone trying to pull out all my teeth with strings attached to a pickup truck. I was pointed to my dentist, to my orthodontist, to a dental surgeon- all over with no answers until my gastroenterologist said it might be this. I am sad that so many are living with this pain but it helps to finally have people who understand.

I'm not a suicidal person but this pain is unbearable. I almost took the whole bottle of carbamazepine. It doesn't work anymore. I'm trying to hold on for my 1 year old but it's hard. Feels like electrical shocks and my right side of my face feel like it's melting. Update: I had microvascular decompression surgery on February 8th. I've been pain free so far. I did have the sensation go through ky face but there wasn't any pain. J can just feel it happening. My tongue is numb. I have some numbing pain and soreness but I'd rather this than the pain. I was deaf in my right ear for nearly a month so my equilibrium was off and I had to use a cane. I'm at about 90% now. 🙌

Sometimes I have to concentrate so hard not to cry from the pain as it will only make it worse. I don’t brush my hair for weeks. Teeth hurt, jaw hurts, headache, pain behind the eye and in my temple and I can’t get any sleep - I would fall asleep for a second and get shook awake from the sharp stabbing in my ear. Only thing soothing me a little bit it is putting a hairdryer directly facing my ear canal - and even that only works for the first day. It’s honestly like having painful mini seizures because the whole right side of my face contracts and I can’t help it.

It took three years for me to get diagnosed and they pulled five teeth then told me it was cysts, then it was psychological and tried referring me to a shrink! I spent thousands and multiple dentists and trips to the ER, it even got to the point where my dentist refused to see me., it was embarrassing, i even contemplated suicide it was that bad until someone listened to me! It ruined my life 😪

Well I am glad she got a accurate diagnosis - you could go for years not getting one and go from doctor to doctor, ER to ER. Just awful.

Mine started in 1995 when I was 39 yrs old. Mine started like a bad toothache but dentist diagnosed TN and send me to a neurologist. Then the lightning shocks began and became more frequent to the point of a few an hr. I was working but it was making it near impossible. After many months of trying and in the end failing every med combo known including tegretol which became toxic to me in 3 mths, the glycerin injections etc which didn’t help and still the pain I opted for microvascular decompression. It was a God send and I got my life back. 13 yrs later the monster camping knocking on my door again. I refused to believe it Dentist confirmed, neuro confirmed. We threw every drug and combo at it because by this date I knew that other invasive procedures may make it difficult for other future procedures (nerve damage etc). 14 mths later 2nd MVD. All was well until the nerves work up 7 weeks later. I now have anesthesia Dolorosa (which made my TN feel like a cake walk in comparison it’s severe and 24/7 and life altering and I cannot work) because I’m one of the 1%. Only telling others because...don’t think it can’t happen to you. Weigh the risks carefully.

I’ve had it since I was 16,,No dr or dentist knew what I was talking about..62 now still suffering,, both sides have been shocking me last 3 days getting stronger 🤯😭

I can so relate .. too painful to scream sometimes just hanging on to furniture crying saying why won’t this pain go away why why why cry cry cry want to die but when it’s gone you think .. ok .glads that’s over .

I have found relief from my TG with tegretol but I fear when my pain no longer responds well. Hope you are still pain free and happy!

I suffer from Multiple Sclerosis have had it for 7 years, I have trigeminal neuralgia most of the time, to start with it affected my lower jaw but recently its started nipping at the cartilage of my ear which feels quite a lot like me sticking a bbq skewer into my head, through my ear. It's very painful, happens most nights, just have to get used to it, I'll have it forever! 😍

For anyone suffering this, your neck needs to be assessed by an osteopath or chiropractor because the neck can be involved. Cbd oil or medical marijuana can help specifically with nerve pain. Check for untreated infections of the ear too if the pain involves the ear.

First of all I've been basically cured for years. I've had bad toothaches and TG is MUCH worse. It's like getting severe electric shocks inside your face. I was at Full strength of gabapentin and oxcarbazepine was still getting seizures so I had cyber knife and that stopped the seizures, but it left the right side of my face feeling semi numb, this was a HUGE improvement over the pain and I don't regret doing it at all. It's been 8 years and I started having some slight tinkling but no pain so my Dr. Put me on a low dose of oxcarbazepine and I've haven't had ANY pain since, and that's been almost a year ago. I chose cyber knife over surgery because I didn't like the idea of having a hole drilled in my skull. I hope this helps someone as this is truly the worse pain to get.

I thank my lucky stars that I haven’t experienced this

What's the defrend between tmj and tragimnal nerulogia I have clicking jaw on right side also I have jaw pain and gum pain on my uper tooth

Im suffering from this and i feel like i have no hope

It can be absolute hell. Luckily, mine flares up infrequently enough that I've never sought surgical solutions. Mine is unilateral on the left side. I've always described it to others as a brain-freeze on my left side that lasts for hours.

Look into SASPGB or Self-Administered SPG Blocks for Treatment.

thanks for the video, i got this started on january 2nd, i am at the point where my meds wear off and the pain sets in before i can take the next dose of painkillers, its my own piece of hell

This is exactly my symptoms I was diagnosed today.

Mine goes back from forehead to back. It feels like an pressure ,absess that wants to explode. I have CRPS on top of this and nothing works. I have the CRPS so if I laugh cry goosebumps I’m in agony. It’s hell,both are nerve disorders.

My mom had this disease and she keeps on crying because its too painful and hard to handle She cant even eat properly. She cant even move her head because its too paniful. Can someone recommend me some medicine ? Cause I think what she is taking is not enough. And as a child I cant take it anymore seeing my mom in so much pain.

I've just been diagnosed with this never felt pain like it

I cannot wait for my appointment

It feels like my face is being burned with the tooth ache.

I feel similar and they keep telling me it’s anxiety but I don’t feel like it’s anxiety

Many people find relief like I did from upper cervical care I recommend getting your neck checked out to see if it's a misalignment impinging on the brain stem. Check out James Tomasi he has some good videos about it.

I experienced transient facial paralysis after dental appt, which went away in few hours of anesthesia becoming inactive. Now, I get very mild pain centered around ear, tingling a little to the jaw, sometime right temple. Do I have trigeminal neuralgia?

Trust me it’s going to come back. Mine came back 3 years after. I’ve now become convinced that this thing is demonic. 😢😢😢

Same! Begged my dentist to pull 4 teeth, but they refused. Left side for me.

Sometimes i feel like plucking my tooth out other times i just sit & cry. The pain medications don't work sometimes. I hate it taking control over my life like this

Can relate, it's ice pick pain.

Just got diagnosed today. Not looking forward to the rest of my life.

Thankyou for letting us know what you went through. I had 2 teeth removed (pointless) due to the pain. I am keen to ask how many people have underlying HEART conditions or high blood pressure etc. Trigeminal Cardiac Neuralgia.

My dentist thinks I have this as I too thought it was a serious tooth pain and yes it is extremely painful and uncomfortable. I’m on pain drugs every single day and sleeping is impossible without them. What procedure is the lady saying she had to fix it?

I suffer from trigemenal neuralgia and I had a terrible flare starting the night before last I went to dignity health hospital in laveen n treated by the quack Jason Daniel’s MD and always had a cocktail of toradol, zofran, and morphine to treat my flare when it’s this bad when asked what helps I told the er dr the cocktail n was told immediately I’m not giving you any narcotics n I was told I am an addict but I took the toradol n zofran which I prayed would help it didn’t I am now at another hospital and I’m here for a minimum of 3 days and I’m being treated with my tegretol, the cocktail when requested, hot packs by my request, and steroids bc the flare is that bad but I’m an addict lol let him tell it n he was trying to treat me for migraines not trigemenal neuralgia smmfh I feel this is medical neglect or malpractice either way I wouldn’t be getting treated at another hospital had he treated me with respect n treated my initial medical emergency not what he thought I had smmfh

I'm so very sorry to hear about your pain through this excruciating devastating Beast that was sucking her life away. Our dentist gave her several about 30 injections and told her to eat before the pain would come back. He said to call him when the pain started back up and meet him at his clinic! about 30 minutes he would repeat 30 injections of Novacane. The doctor said to find a specialist in Salt Lake City, Utah. Our after 2 1/2 miles from our place. This Doctor said she needed to see a doctor who was the best to see and. We took her to Pittsburgh who can pioneered these surgery. was in Pittsburgh. That doctor e found a Cra Nerve.

I'm a TN Survivor only if you've experienced the pain will you ever know what it's like...

Mine is on the left side. A sharp stabbing pain in my head and my jaw. It's almost unbearable pain.

that is my pain on my right side, when i had it on the left side it was burning pain, there must be a group for this disease, and a doctor who can help

My friend has a pain pump due to her trigeminal neuralgia

Has anyone ever had bleeding or feeling like a root infection above the tooth? I have been diagnosed with TN, but didn't expect to have blood coming out around my tooth with pain

I’ve been feeling this pain for about 8-9 years now. Been to many doctors for many reasons but they never seemed to find out what’s wrong. Today I did some more research and read about this. Described everything I’ve been feeling! But does anyone else experience swollen and painful eye? Or eyelid? My pain is on the right side. And it constantly feels like my right eye is trying to shut but my eyebrow is trying to pull it up. Constant tugging between the two and it is so painful. I’ve lost self confidence ever since this because my face doesn’t look or feel normal. Any recommendations for doctors to see in Arizona?

Her husband felt more pain than her it seems..

TN pain is much worst than a bad toothache. This lady got of easy. The pain is excruciating, like electrical shocks that are so painfull you think you will go crazy. God bless all those suffering with this horrible affliction. It is no wonder it is called the suicide disease. Many have taken their own lives due to the horrific pain. 😥🇨🇦😢

I got a lot of teeth pulled out as well I thought it was because my teeth were bad but I thank God that he is a healer in Jesus name.. We can still make it.. If anyone needs prayer please find me on facebook and ig alexisjesusbaby

Its extreme non stop nerve pain shooting all over your face. I have had it mildly and I thought I was going to die. I am so very lucky it stopped by itself but I cant even imagine going through more then a day of this. I would beg to be knocked out if I had this. You just cant function with pain like that.

please tell me what doctor you saw and where they are located

Is it possible to get this or symptoms of this from dental work. I recently got dental work done...to where anesthesia had to be administered but nothing too drastic. Just some teeth extractions and amalgams. After that is when I noticed slight jaw pain on my left side. I figured it was just my mouth recovering. Well...the left side of my jaw continues to hurt and shoots to my left ear. I get what feels like a strong ringing in my ear and jaw pain. My pain is not nearly as bad as others who have commented...but it still hurts. It happens mostly in the evening and my teeth seem very sensitive to cold food/drinks. As of this moment 2 Tylenols will take pain away...and sometimes I put an ice pack on my jaw. Just wondering what has happened to me because I have never before experienced this pain.

feels like someone is tapping an ice pick into my ear ..,. I’ve had it for 15 years … led to a diagnosis of M.S. … taking gaba, tegretol, and an anti anxiety med helps me…. also electric stim, acupuncture, cranial sacral massage, and heat. 🤕

I have extreme Tightness and pressure on side of my head. It feels like a Muscle contraction headache. Is this the same Trigeminal neuralgia?

I had an orthodontist stab me with a needle in the trigeminal nerve on purpose during the time he was taking my braces off. He did this because I reported him for saying he hates the police. Now I'm living with head and teeth pains. Will the pain ever go away?

My foster mom is sewing with this now. And it’s to the point she can’t talk. Any suggestions??? Please. She’s already been in and out of the hospital and been prescribed a bunch of different medications but nothing is helping her and it’s getting worse

I think I have this and it hurts so bad

My symptoms were like being plugged into the mains, never had pain like it. The medication I was given was a barbiturate for epilepsy. After taking it for about a week, I made a suicide attempt. A side effect of the meds apparently.

I feel this same thing!! RECENTLY STARTED from dental cavity fillings! I’m only in my 30s. Anyone else?

For the past year I've had a dull sore type of pain on all the spots she explained... Is this how it starts ???

Please someone tell me if I have this or occipital nelogia I'm confuse here is my story how started I start getting headiche on top of my head on right side senstive on top of my head all the nerves was hurting on back of my head and right side I had pain all round the eye evrything was senstive on right side I couldn't touch it it was hurting I was so bad it was about to kill me 🤔now everything change I feel like somone screw my brain with screwdriver some time I get eye pain I have pain on my back gum my back teeth was senstive I took the teeth out still my gum hurts little often I get pain on back of my head on lower part when I lay down on my left side I feel preasure and pain on right side of my head doctor dont help me please someone tell me witch one is it

i have it as well but i have it on the top of my head but mines not as bad as what she gets, people who never had it... its painful.

Yes!

Salman Khan must consult Dr. Joseph.

Has anyone tried ketamine? I am doing that next week for my first appointment . It sounds possible and “”nothing to lose” I hope.

Radiation isn't intrusive?

it feels like my mouth is inverted from this i need help so bad :(

I now know why this pain is referred to as the most excruciating pain known to humankind.

I call it my hell on earth

I have trigminal neroulgia it’s not nice at all I accidentally overdosed on painkillers I rang up nhs I told them how meny painkillers I been takeing I was told to take no more as over toxicated myself the pain so bad giving birth to 10 baby’s would be better then having this

But how did they treat it???

💙

What type of a doctor analyzes this?

Actually I had ALL of MY TEETH OUT!!!!!!!!!!!!!!!!!!!!!!!!!!! BECAUSE as this Lovely Hispanic Lady who reminds me of my Mother with Iberian Ancestry said, "The Pain Didn't Go Away after I had 3 Teeth Out". For me, After 5 consecutive Dental Infections (or so I thought) THE FIFTH was So Horrific that I had the remaining 19 Teeth out in the Chair to manage the Risks to my Damaged neck via the Biomechanical Forces. It was BIBLICAL. More recently with me Acquiring knowledge & a couple of specialists alluding to a Lesion in my Pons causing TRIGEMINAL Nerve Root Pain. I feel aggrieved that I couldn't have a PROPER NEUROLOGICAL DIAGNOSIS before that . Because my children are EMBARRASSED to be with me & NOW im getting ICE PICK Headaches which i believe are derived from the same THING. In my PONS. If id had a Gun during that Fifth Tooth. I WOULD HAVE BEEN ANOTHER Gruesome STATISTIC OF The Suicide Disease.

I still work and work through the pain. I want to scream. ambesol has become my best friend

i have trigeminal neuralgia

Did you use apple AirPods

They don't call it suicide pain for nothing. She is downplaying it a lot. It's like an electric freeze shock on the nerve. You don't want it.

I wish it only felt like a bad toothache.

..Occipetal, combined with trigeminal, means: stay alive; it's, spiritually-speaking, your fakkin' doctorate.. (Don't give up!)

If you hold your tongue on a 9volt battery for 2 minutes you will feel my pain...right above my eye...on tegretol...

If it's a virus it's difficult to treat like Herpes for some people relief with b12 and most of people get relief from having a pricing in middle of ear.

I too myself had a lot of teeth removed thinking it was a toothache

I live with it sucks