It's documented as such. But do these money grubbing idiots even have mercury silver dental amalgams on their radar??? NO!!!! TOOK ME ALMOST 20 YRS TO FIGURE IT OUT FOR MYSELF! TY VERY MUCH. SO KEEP YOUR EXPENSIVE BARBARIC SURGERIES AND TOXIC DISGUSTING MEDS.
My father had this and I searched everywhere for a solution, in the end, ozono therapy took away all the pain from the first few sessions. I know how heartbreaking it is to see someone going through this awful pain, so I'd like to help by sharing what worked for us.
After going to doctor and dentist, being on antibiotics for 2 years straight, I got diagnosed with this. Pain will knock me on my knees. Thank heavens I went to the ENT doctor, who diagnosed this.
I have it due to an aggressive cancer as a secondary cancer. Thing is that the pain is focused on the nerve it's self. For me it's more like getting hit in the head with a hammer from behind. Like everyone says it comes and I never know just when it's going to start up. It stays until it's ready to stop. Only to come back when it takes a notion. I take the seizure meds to keep the pain under control. I haven't bothered with surgery at this point. I have end stage Sebaceous Sarcoma Skin Cancer right now. I'm not expected to make it through this next month. It's a CANCER OF THE HEAD AND NECK. VERY RARE AND AGRESSIVE. I'm just waiting it out. More should be taught about this. Doctors have never been taught about this killer. People die before they can find help. I just found out 3 weeks ago, and my lymph nodes are clogged and swollen at the elbow area. clogged and we know what that means. I think it's in my pancreas now. It's been hurting like hello.
I had my surgery for this 20 yrs ago a surgery that was supposed to take an hour or so went to 6-8 I ended up getting TN bc of my now ex-husband.. I still have pain especially when it's cold or windy the sun light also effects it.. I did lose alittle hearing in my left ear. But with all that said I'm glad I did the surgery bc that pain is horrible that word doesn't even come close to pain I was in..
I've had TN for about four years now. But back in August of this year I discovered a technique that has reduced my pain by well over 90% - and now I'm completely of medication. All you have to do is massage the opposite side of your face where you're having pain. I was having pain in my teeth, chin, jaw, cheek, nose, and temple...so I just messaged all those areas on the opposite side of my face and got great results the same day. As the pain keeps trying to come back, just keep messaging the opposite side of where the pain is. THIS WORKS... YOU HAVE NOTHING TO LOSE BUT PAIN.
well this is my 3rd year having it now, i've had it in phases where it comes and goes for weeks at a time, there would be weeks where i wouldnt feel it and it would eventually comeback, it is very active right now. i tried getting help, in 2019 i saw a ENTt surgeon and they said it was a sinus infection which it was not. the pain got a lot more bearable so it did not go back, later in 2019 when it got mroe painful i saw a orthodontist and they said it was my wisdom tooth sinking in the nerve, and just recently 2 months ago i got all my wisdom tooth removed and the pain is still here. My first 2 weeks with this was unbearably painful, 10/10. right now its about a 5/10 when it triggers.
@@hummingbird2254 If you have silver fillings please have a 24 hr urine test for heavy metals. You could also have herpetic lesions on the ganglion, treat w valtrex.
Please listen to me, and do the following ...if you want to reduce the pain up to 95%. Whichever side your pain is on, massage the opposite side of where the pain is coming from.... do this every day and you will be amazed at the results. I've had trigeminal neuralgia for up to 4 years and the first day I tried this technique I reduced My Pain by 80%, now I'm completely off the medication and have very little pain. This works!!!! Remember, just massage the opposite side of your face from where the pain is coming from... if you're having pain on your left side, then massage the right side of your face.
mine came on from nowhere when I started my third year of university. I was on a liquid diet for a good few months, and when I got super desperate and crawled into A&E at 3am they accused me of drug fishing because there was no swelling in my jaw. Trying to get a full diagnosis in the UK is a pain though, I'm on the meds but theyre not helping me too much. I also am vulnerable to bad mental health so really could do without the 'suicide pain'
Not mentioned is Radiofrequency Rhizotomy where they burn the nerve. R.F. Rhizotomy uses the same procedure as glycerol rhizotomy. Which one is more effective, I don't know. This R.F.R procedure was done 4 years ago and eliminated my wife's pain till Mid-June 2021 when it suddenly and fully returned. She has MS where the nerve is exposed by the breaking down of its myelin sheath. Microvascular decompression is not a solution for this condition. She had the gamma knife treatment years before but it lasted only 6 months. She has had TN for over 20 years and has had experience with all medications or combinations thereof, and finally found Oxcarbazepine (Trileptal) alone to be very effective in keeping the pain away. She immediately resumed this medication, taking 150mg tablets: 1 at each meal and 2 at bedtime. She is currently pain free but will soon be speaking to a neurologist about having the R.F.R. procedure done again.
@@muhammadsaabirkhan429 She has had MS for 45 years. Her TN started 25 years ago with periods of remission and several periods where she had to rely on medication.
@@muhammadsaabirkhan429 The Trileptal 150 mg tablets were taken at first at 900 mg /day ended her pain, 600mg wasn't enough. She has now gradually cut down to 600mg/day and experiences only mild sensations occasionally. She plans to remain at this level until no sensations are experienced. Thanks for asking.
Yes, if course it returned. Did you get your money back? So why would you do it again??? These money grubbing barbaric Drs make me sick. Took me 20yrs to find out I had mercury poisoning from silver fillings. 😡
My pain is more in my upper left jaw, not really facial. Then in the recent year, the pain moves from the upper jaw to lower jaw. It can be so severe I can’t eat or brush my teeth. Is this TN or does it involve different nerves?
Thank you for your question! While the exact cause of trigeminal neuralgia isn't always clear, research suggests that there may be some familial or genetic factors involved in certain cases. We recommend discussing this with a neurologist or specialist, as they can provide more personalized insights based on your family history. You can learn more and find a specialist at Johns Hopkins by visiting www.hopkinsmedicine.org/neurology_neurosurgery/.
I was recently diagnosed. Mine is only when I sneeze, cough or laugh really hard. My MRI came out negative of tumors. Has anyone ever heard of those triggers. I don't get a straight answer from my doctor. Any info will be helpful. Thank you.
Hi Mary, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408.
Also a product called. D. M. S. O. A sulfur product. Hos when applied dIly twice a day. Half water half. D. M. S. O. Good luck. God bless. It works. Best ever.
Hi Anne, It is not known when the artery begins having contact with the nerve, as that is not the only reason for the pain. There are some people who have TN and do not have a vessel contact, and others who have vessel contact but no TN.
Stretches out like an old enter tube. Get's a bubble in it. When blood pressure rises, blood pushes the bubble out. To much pressure and you got an aneurism. Full blown and your dead.
@@JohnsHopkinsMedicine so then it cant be reason for tn it means as if people whom artery is in contact with trigeminal nerve then they must get tn symptoms too..Reason is somewhat different and what makes artery to come in contact with trigeminal nerve ?? And normally where is artery position with trigeminal nerve?? Can you explain a little?? Is normally artery and trigeminal nerve is close to each other or not??
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Can anyone tell me... I suffer from episodic cluster headaches. Is TN the same thing? This is always so confusing and I'm in the middle of an episode... The pain is suicidal...
One of my neurologist suggested injecting medication into several spots on my head. How the heck can that help if the nerve is inside the skull? Is my neurologist just wacko? Plus, none of the 5 drugs they’ve given me have worked, and I have a seizure disorder that has no know cause. I’m on Keppra for it, and Gabapentin for a cough disorder already. Shooting drugs into my head sounds like a good way to cause me to have a seizure or bad side effect. They already said I am hypersensitive to medication. I was already on 12 drugs before this Trigeminal crap started. I also have TMJ on both sides. They ruled it out as being the culprit. MRI is clear except for an abnormality in the lower right quadrant. Should I be concerned about that?
Hi, thank you for reaching out to us Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request a second opinion and get an appointment at one of our hospitals, please call 888-872-1408.
Hi, [7/8 10:01 AM] Sara Feldman Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
if there is no further treatment for me Bags can't do more Amidas can't do more Singh can't do more Rajah over Pain clinic snubbed me That's 5 doctors 50 days later What else Im leaving as leave and suffer year
I had it done after years of truly terrible pain, and medications (oxcarbazepine) that only worked sporadically, when I could no longer live like that I opted for the MVD. Woke up totally free of pain for years, THAT WAS FOUR YEARS AGO. No reoccurrence, no residual side effects except a happier life. And by the way: I am in my 80's so I do not think that age needs to be a factor in opting if you are otherwise healthy.
@@Mx2Z May I ask where you had MVD done? My mom has suffered from TN for 2 years and her TN pain recently got more excruciating that pain medications no longer works well for her. She is considering surgery but she is afraid of the complications.
The most painful thing you will experience in your life, you won't even wish it to your worst enemies.
very true
Exactly, that explains how much it hurts.
It's documented as such. But do these money grubbing idiots even have mercury silver dental amalgams on their radar??? NO!!!! TOOK ME ALMOST 20 YRS TO FIGURE IT OUT FOR MYSELF! TY VERY MUCH. SO KEEP YOUR EXPENSIVE BARBARIC SURGERIES AND TOXIC DISGUSTING MEDS.
Amen
The worst!
After 40 years of this condition I now will get a surgery for this condition. Wish me luck.
Any silver dental amalgams? They won't tell us that may be a cause. It was for me.
How'd it go?
Had ur surgery done
My father had this and I searched everywhere for a solution, in the end, ozono therapy took away all the pain from the first few sessions. I know how heartbreaking it is to see someone going through this awful pain, so I'd like to help by sharing what worked for us.
After going to doctor and dentist, being on antibiotics for 2 years straight, I got diagnosed with this. Pain will knock me on my knees. Thank heavens I went to the ENT doctor, who diagnosed this.
Fire from within is how one lady described it
You don’t know real pain until you face TN
I have it due to an aggressive cancer as a secondary cancer. Thing is that the pain is focused on the nerve it's self. For me it's more like getting hit in the head with a hammer from behind. Like everyone says it comes and I never know just when it's going to start up. It stays until it's ready to stop. Only to come back when it takes a notion. I take the seizure meds to keep the pain under control. I haven't bothered with surgery at this point. I have end stage Sebaceous Sarcoma Skin Cancer right now. I'm not expected to make it through this next month. It's a CANCER OF THE HEAD AND NECK. VERY RARE AND AGRESSIVE. I'm just waiting it out. More should be taught about this. Doctors have never been taught about this killer. People die before they can find help. I just found out 3 weeks ago, and my lymph nodes are clogged and swollen at the elbow area. clogged and we know what that means. I think it's in my pancreas now. It's been hurting like hello.
@@CarolynDenison you could very possibly have a herpetic virus w lesions on the ganglion. Some cancers are viral you know.
Wow I'm so glad there has been WAY more options to treating TN as opposed to 10yrs ago. 👏👏👍
I had my surgery for this 20 yrs ago a surgery that was supposed to take an hour or so went to 6-8
I ended up getting TN bc of my now ex-husband.. I still have pain especially when it's cold or windy the sun light also effects it.. I did lose alittle hearing in my left ear. But with all that said I'm glad I did the surgery bc that pain is horrible that word doesn't even come close to pain I was in..
I've had TN for about four years now. But back in August of this year I discovered a technique that has reduced my pain by well over 90% - and now I'm completely of medication. All you have to do is massage the opposite side of your face where you're having pain. I was having pain in my teeth, chin, jaw, cheek, nose, and temple...so I just messaged all those areas on the opposite side of my face and got great results the same day. As the pain keeps trying to come back, just keep messaging the opposite side of where the pain is. THIS WORKS... YOU HAVE NOTHING TO LOSE BUT PAIN.
well this is my 3rd year having it now, i've had it in phases where it comes and goes for weeks at a time, there would be weeks where i wouldnt feel it and it would eventually comeback, it is very active right now. i tried getting help, in 2019 i saw a ENTt surgeon and they said it was a sinus infection which it was not. the pain got a lot more bearable so it did not go back, later in 2019 when it got mroe painful i saw a orthodontist and they said it was my wisdom tooth sinking in the nerve, and just recently 2 months ago i got all my wisdom tooth removed and the pain is still here. My first 2 weeks with this was unbearably painful, 10/10. right now its about a 5/10 when it triggers.
You need to see a Neurologist.
I had all wisdom teeth removed and an unnecessary root canal. TY again idiots.
@@hummingbird2254 If you have silver fillings please have a 24 hr urine test for heavy metals. You could also have herpetic lesions on the ganglion, treat w valtrex.
Please listen to me, and do the following ...if you want to reduce the pain up to 95%. Whichever side your pain is on, massage the opposite side of where the pain is coming from.... do this every day and you will be amazed at the results. I've had trigeminal neuralgia for up to 4 years and the first day I tried this technique I reduced My Pain by 80%, now I'm completely off the medication and have very little pain. This works!!!! Remember, just massage the opposite side of your face from where the pain is coming from... if you're having pain on your left side, then massage the right side of your face.
mine came on from nowhere when I started my third year of university. I was on a liquid diet for a good few months, and when I got super desperate and crawled into A&E at 3am they accused me of drug fishing because there was no swelling in my jaw. Trying to get a full diagnosis in the UK is a pain though, I'm on the meds but theyre not helping me too much. I also am vulnerable to bad mental health so really could do without the 'suicide pain'
Please read my posts, may help.
I have had Trigeminal neuralgia hurts reallly bad I am having a lot of pain as I speak just keeps getting worse.
Please try and get help with it
I had this before , I did hijama (wet cupping) and taking amytriptyline and feeling so much better.
@@kalsoomafridi133 what up is wet cupping and where is this performed?
Please read my posts. I fought this 20 and won the battle.
Not mentioned is Radiofrequency Rhizotomy where they burn the nerve. R.F. Rhizotomy uses the same procedure as glycerol rhizotomy. Which one is more effective, I don't know. This R.F.R procedure was done 4 years ago and eliminated my wife's pain till Mid-June 2021 when it suddenly and fully returned. She has MS where the nerve is exposed by the breaking down of its myelin sheath. Microvascular decompression is not a solution for this condition. She had the gamma knife treatment years before but it lasted only 6 months. She has had TN for over 20 years and has had experience with all medications or combinations thereof, and finally found Oxcarbazepine (Trileptal) alone to be very effective in keeping the pain away. She immediately resumed this medication, taking 150mg tablets: 1 at each meal and 2 at bedtime. She is currently pain free but will soon be speaking to a neurologist about having the R.F.R. procedure done again.
hi how long does your wife have multiple scerolsis for?
@@muhammadsaabirkhan429 She has had MS for 45 years. Her TN started 25 years ago with periods of remission and several periods where she had to rely on medication.
@@lestergarnier6209 morning
hw is she now
@@muhammadsaabirkhan429 The Trileptal 150 mg tablets were taken at first at 900 mg /day ended her pain, 600mg wasn't enough. She has now gradually cut down to 600mg/day and experiences only mild sensations occasionally. She plans to remain at this level until no sensations are experienced. Thanks for asking.
Yes, if course it returned. Did you get your money back? So why would you do it again??? These money grubbing barbaric Drs make me sick. Took me 20yrs to find out I had mercury poisoning from silver fillings. 😡
My pain is more in my upper left jaw, not really facial. Then in the recent year, the pain moves from the upper jaw to lower jaw. It can be so severe I can’t eat or brush my teeth. Is this TN or does it involve different nerves?
I've been living with it for a long time and Im only 35 been going thru this since 2016
My face blew up when I was first diagnosed with it
I live in Adelaide Australia and I can't get a diagnosis.
Is there a genetic link? Both my mother and I have it.
Thank you for your question! While the exact cause of trigeminal neuralgia isn't always clear, research suggests that there may be some familial or genetic factors involved in certain cases. We recommend discussing this with a neurologist or specialist, as they can provide more personalized insights based on your family history. You can learn more and find a specialist at Johns Hopkins by visiting www.hopkinsmedicine.org/neurology_neurosurgery/.
For the last one they don’t tell you the risk which is very dangerous. That’s why I didn’t get the surgery.
Please don't get the surgery. Do read my posts, might help.
I was recently diagnosed. Mine is only when I sneeze, cough or laugh really hard. My MRI came out negative of tumors. Has anyone ever heard of those triggers. I don't get a straight answer from my doctor. Any info will be helpful. Thank you.
Hi Mary, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408.
If you have TN but no vessel contact, what are other reasons to have TN?
Please see my posts.
It’s not only one side of the face for some.
Also a product called. D. M. S. O. A sulfur product. Hos when applied dIly twice a day. Half water half. D. M. S. O. Good luck. God bless. It works. Best ever.
What causes the artery to suddenly come in contact with the trigeminal nerve after a life time of this not being so?
Hi Anne, It is not known when the artery begins having contact with the nerve, as that is not the only reason for the pain. There are some people who have TN and do not have a vessel contact, and others who have vessel contact but no TN.
@@JohnsHopkinsMedicine Thanks
Stretches out like an old enter tube. Get's a bubble in it. When blood pressure rises, blood pushes the bubble out. To much pressure and you got an aneurism. Full blown and your dead.
I seen on a video that it could be from cranial instability in the c1/c2 vertebrae
@@JohnsHopkinsMedicine so then it cant be reason for tn it means as if people whom artery is in contact with trigeminal nerve then they must get tn symptoms too..Reason is somewhat different and what makes artery to come in contact with trigeminal nerve ?? And normally where is artery position with trigeminal nerve?? Can you explain a little?? Is normally artery and trigeminal nerve is close to each other or not??
I have no facial pain, but jaw pain like stabbing tooth pain and burning sensation in the mouth. Can this also be trigeminal neuralgia nerve pain?
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication.
If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Can anyone tell me... I suffer from episodic cluster headaches. Is TN the same thing? This is always so confusing and I'm in the middle of an episode... The pain is suicidal...
Maybe ! You should consult a neurologist
One of my neurologist suggested injecting medication into several spots on my head. How the heck can that help if the nerve is inside the skull? Is my neurologist just wacko? Plus, none of the 5 drugs they’ve given me have worked, and I have a seizure disorder that has no know cause. I’m on Keppra for it, and Gabapentin for a cough disorder already. Shooting drugs into my head sounds like a good way to cause me to have a seizure or bad side effect. They already said I am hypersensitive to medication. I was already on 12 drugs before this Trigeminal crap started. I also have TMJ on both sides. They ruled it out as being the culprit. MRI is clear except for an abnormality in the lower right quadrant. Should I be concerned about that?
Hi, thank you for reaching out to us Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request a second opinion and get an appointment at one of our hospitals, please call 888-872-1408.
Please read my posts. It may help.
Any silver dental fillings? Test for heavy metals.
@@JohnsHopkinsMedicine ie NO FREE MEDICAL INFO
@@stj971 no heavy silver, maybe 2 regular fillings for small cavities. I finally see the neurologist on the 14.
It’s killing me !!!!!
I have that and pain in my tongue
Did you ever get to someone who figured out what was causing the pain in your tongue ?
Very hard to figure out..
No help, no drug in the presence of neuralgia of the trigeminal nerve, when the pain of neuropathic origin. Stone Age medicine.
I m also suffering from this for almost 2 months. I need your h😢
Hi, [7/8 10:01 AM] Sara Feldman
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication.
If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Mine was caused by gangstalkers and gaslighters.PTSD seizure.
Mine is the nerve. Not tumour
Can hormone fluctuations effect the frequency or severity of TN?
I think mine flares up the most during menses…
After forty years of trigeminal disease I'm getting ready for gamma knife.
Did you have the Gamma knife procedure ?
Take. Neuro. Mag. O Eva threes and a good multi. V. Then take litium oratate. It works for pain.
I worry about B vitamins. Kinda proceeded an attack for me so I’m nervous.
if there is no further treatment for me
Bags can't do more
Amidas can't do more
Singh can't do more
Rajah over
Pain clinic snubbed me
That's 5 doctors
50 days later
What else
Im leaving as leave and suffer year
My pain in right side of my face
Been there. Please read my posts. Might help.
@@stj971what posts?
Sir, is MVD surgery safe?
I had it done after years of truly terrible pain, and medications (oxcarbazepine) that only worked sporadically, when I could no longer live like that I opted for the MVD. Woke up totally free of pain for years, THAT WAS FOUR YEARS AGO. No reoccurrence, no residual side effects except a happier life. And by the way: I am in my 80's so I do not think that age needs to be a factor in opting if you are otherwise healthy.
@@Mx2Z May I ask where you had MVD done? My mom has suffered from TN for 2 years and her TN pain recently got more excruciating that pain medications no longer works well for her. She is considering surgery but she is afraid of the complications.
@@TamNguyen-qo5sb dont go for surgery , it is safe for someone and not for others.Try ayurvedic or homeopathy once
@@sameer-nb2jv Test for heavy metals if you have silver fillings. Also herpetic lesions on ganglion.
Meds dont work anymore for me. Uggh
Hi, how are you now??
Please read my posts. They never worked for me. I found the causes of mine.
Mine was caused by stress and smoking i quit smoking and got rid of stress. Im healed now. Thank god.