I'm almost 15 and have been suffering with tn for over a year. It is complete and utter agony which controls your life due to the fear of triggering another attack. Not many people understand it my local doctor barely knows how to help here in the uk.
I had trigeminal neuralgia for 10 long miserable years, it was absolute AGONY. You are locked into HELL with it. One day I tried chinese acupunture. It was an IMMEDIATE SUCCESS and I was cured. I have have been pain free for 9 years now. How I bless those needle in my face the chinese doctor put in.
im pretty shore i have this condition, i went through depression and panic attack it really did make me loose my mind. i now y they call it the suicide condition because ive been there.
i wanna no if tn or atypical can effect the sensors in your face because i get a strange high feeling its really weird.
Hello Everyone. My dad suffers from Trigeminal since 2005. He owned a gas station in my country, Venezuela for more than 15 years, so I guess the contact with gasoline helped a lot that syndrom to beging. To be honest he rules out any medical help because he had tried everything, with no good results. My question is: Are alternative treatments like accupuncture effective in these kinds of diseases? I`d like to have feedback, I´m really worried. Can´t stand seeing him like that!
Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
@nylawyer55 I'm so sorry for your daughter. The easiest way to describe TN pain, which is very specific, is the same feeling you get when a dentist hits a nerve in your tooth. It is only facial pain, but I get neck and shoulder pain from tensing up. If you would like to talk, I'd be more than happy-send an answer through this and we'll sort email addresses. I do so feel for her - and for you: I've had this since 20 and it's so hard for a parent to see.
PLEASE, if you suffer TN, get in touch with this #1 TN surgeon:
Dr. Tom Kopitnik, Mountain View Hospital & Neurosurgery
Casper WY 307-266-4000 VERY reasonable with rates and payments.
I'm 59 and my surgery recovery was unbelievably fast- out on 2nd day after surgery and back to life totally TN pain-free after 3 years of suffering! Contact me.
@flymasterA My 28 year old daughter is suffering terribly; tooth pain with no cause, migraines and neck and shoulder pain... could this be trigeminal? Doctors here in New York have not diagnosed it as such and are trying to treat all symptoms (all on her right side) as individual problems. She has no life and is suffering. What do you think? Thank you for your post.
@nylawyer55 TN isn't something that is diagnosed per say. Everything else is ruled out 1st. Then if the patient reacts favorably to tegretol, then it's a pretty sure deal- TN. All of my pain was in the jaw, lips, tongue, and chin on the right side. It's an unreasonable pain. After irritating the nerve severly, the brain can't distinguish the signals ad it transposes them as pain- unbelievable pain. They can be a micro-second long or minutes of agony. Mine pounded in rythym to my heart.
@nylawyer55 For the first step , she must ask doctor for Tegretol. If it helps, this is Trigeminal Neuralgia. Tegretol is THE BEST ! If not help,there is something diferent. Do not let dentist to pull her tooth out !!!
I just had the MVD surgery Thursday, after suffering 3 yrs w TN. My advice is to check out this route, and if it works for you and if you can get excellent surgeons who have a high percentage record of cure, then do whatever it takes to get it done. I 2nd. mortg. my house. Surgery at 2:30p, woke 7:30, walking the halls 9:30, released Sat. am pain-free! Dr. Tom Kopitnik is my HERO!!!
I've had Atypical Trigeminal Neuralgia (R. Maxillary) as well as severe migraines since September 1972 (for over 37 years). Neurologists here in Buffalo have ruled out MVD and Gamma Knife, due to my "atypical" symptoms (and non-responsiveness to Tegretol). It's nearly totally disabling, especially during the "attacks" which I have endured regularly, two or three times a month, often lasting for days at a time, since I was age 14. The isolation is profound, ten thousand days and nights alone...
@quill444, sounds like your symtoms/pain is nearly identical to mine. I've had it over 16 yrs. now...started when I was 34. Good luck to you finding something thats helps.
I suffered from this affliction. I was fortunate enough to have micro-vascular decompression surgery. This was immensely successful. I cannot thank my surgeon enough for the relief the surgery gave me. I will recommend this surgery to anyone suffering from TN. As the video claims: "There is no need for anyone to suffer from this type of pain" - no wonder it is called the suicide disease.
Thank you for your comment! I've been suffering from TN for 3 years and the surgery is my last hope. But I've hear MVD is not a panacea, as not all patients have the nerve-vein conflict. I got severe exposure while practicing winter swimming and no idea whether MVD or Gamma-knife would be best solution. What caused YOUR TN?
The cause of my TN was nerve-vein conflict. Like bikerbarbie1964 I too had reached the max level of meds to treat my TN. Life was unbearable. I'm not a Dr. but my surgeon got it right by performing the MVD surgery. It is now 10 years later and I'm still pain free. It is a big decision to make, but I had got to the point where I simply had to take the decision and have the operation. I've not looked back since.
Great to hear that! As an experienced sufferer, I am truly happy for you! Just wonder whether ordinary exposure could also become a cause for the nerve-vein conflict? 1. Could anybody with relevant experience of being exposed please answer my question? 2. What kind of diagnostics should I take up to define the degree of nerve damage/or vein-nerve compression? MRI?
@gismosesse After 12 years of nightmare, I decided to go to MVD ! Come home after MVD and 3 days in hospital , and I am ALLREADY pain free and HAPPY ! People , don't suffer and waste your life...
I've had this pain for a few yrs. went to doctor he suggested Migraine meds. Went on those, it subsided the pain, then went to dentist had root canals of upper right teeth only to have them eventually removed. Have had no pain since in my right side though I hear it can recur a few yrs later. Recently was in a severe auto accident. Neurologist found brain lesion thru MRI that suggest MS ..It's all starting to make sense to me now..GET checked for MS ( Multiple Sclerosis)
I just want to add that I am now on the list for MVD surgery, as it has the highest success rate, although my meds needed to increase over time for almost 12 years I had a lot of relief, with only breakthough episodes of bad pain, unfortunately I'm now at max. meds with no relief at all and my quality of life is almost zero., this is the month I'm hoping for surgery, there is hope, just try to hang on, I know it's very hard.
Could you please share what was the reason for you TN? Was it due to the severe exposure (as in my case), or functional nerve disorder due to the conflict between the nerve and the nearby tissues/blood vein? Please, be so kind and tell!
Not sure of the cause, it just started for no apparent reason, if there is a vien or tissue problem, it's not showing up on the MRI, I did suffer a head injury in a car accident, but it was the front of my head, so I have seen the surgeon and now he wants me to see a 4th Neurologist, I would think you suffered nerve damage? How did that happen? In the case of nerve damage I don't know if MVD would help, what do the doctors say?What kind of drugs have they offered?
Traditional drugs, including vast amounts of B-vitamin. In case it is nerve damage, the Gamma-knife, I guess, will help, although I'd prefer MVD. It's getting worse all the time, in the beginning I had pain-free periods lasting 6 months, now it's 1,5-2 months. Don't want to be on meds anymore, tilting to radical solution - cutting the nerve...
I have trigeminal nueralgia and went through the mis-diagnosis process, a very smart oral surgeon guessed at what it was, if your having trouble finding relief, in the first stages of this disease, tegrotol will usually relieve the pain immediately or gabapentin is the other one, so if the teeth don't appear to have a problem, ask for one of these medications, if they relieve your pain, you have your diagnosis. Unfortunately over time, they tend to need to be increased.
I pretty much have given up on ever finding true help for my husband. He feels like a guinea pig, and has such a horrible case. Constant burning pain in the background with the horrible Ice pick, hot poker strikes into his temple and eye. He even loses his vision in his right eye sometimes, and no one can figure out why. This is why we have given up, and he just badly wants to die and go to heaven where the pain will be gone.
in my 7+ years of experience with unremitting intense pain, ignorant if not altogether incompetent doctors and loss of almost all things and people that i hold dear, the best advice that i can give, is to PRAY; and hopefully find the RIGHT doctor. DON'T GIVE UP!
In order to help me out with an argument i'm having, would you say that cluster headaches are the worst pain known to man, or is it Trigeminal Neuralgia?
@phocjame trigeminal nueralgia is the suicide disease, does that answer your question, I don't doubt cluster headaches are very painful, but no painkiller will relieve the pain of trigeminal nueralgia, have someone put a burning electrical prod into the side of your face and you will have your answer.
try the diamond headache clinic in chicago. see dr. freitag if you can. i have the worst case of occipital neuralgia with a glassopharyngeal tear. he diagnosed me correctly in a very short time. unfortunately the insurance co. wouldnt pay for treatment. but, i think i wouldve gotten better treatment there than the myriad of clinics and hospitals i've been to since my injury in 2002.
i am experiencing a sharp pain behind me right ear. i was doing some research and i want to believe that i am in the early stages of this terrible condition. when i grind my teeth this similar pain takes comes to me. It hasnt developed into an excruciating pain as of yet but it really has me thinking and at the same time a bit scared. I will set up a visit to the doctor tomorrow to see if i can get diagnosed.
i know it is rarely condition and become worst when you get an attack ! and the even more worst thing is that it keeps you horrified of a scary situation of an stimulation of a pain and your medication and the stimulation keeps you occupied
Please accept my apologizes for the user name shown on my comment from yesterday. I've never commented on youtube before, and I was on my son's computer, and that's the silly name he uses.
I have TN due to nerve damage during my total joint replacement of my right TMJ. It's been 2 yrs. now so the dr. says the nerve will not recover. I have been in pain 24/7 since the surgery. I'm never without pain, just different degrees of pain(I take pain meds everyday, and lyrica). I'm looking for anyone else who has a case similar to mine. Know anyone?
Right now I'm taking scheduled lyrica w/ ultram prn. I was in the hospital when first diagnosed with TN - I had a GI bleed from taking 800mg ibuprofen every 4 hours for 3 days w/ little relief from the pain & unable to eat or sleep. I had 4 kids natural - 2 in a birthing center, and I can honestly state that the TN pain is far, far worse than labor. I absolutely dread another attack - I keep hoping that my first attack was my last. Is that possible? Or am I being unrealistically hopeful?
Just been dx with this... Pain would last for hours, not minutes... It affects the whole right side of my face, my mouth, my tongue... I taste blood when there isn't any... It's horrible... At first, I thought it was a horrible toothache... My poor kids watched me cry as it throbbed... Doc put me on lyrica... I'm 46... I understand you go through periods of remission with this and I am apparently in remission... I live in fear of another attack...
I am so sorry to learn of your diagnosis. My wife had periods of remission, that would not really be remissions, the pain would just be under control usually through massive amounts of painkillers, which left her other vital organs at risk. Ultimately surgery was the best option for her. She had Glycerol, Gama ray and Microvascular decompression.
there's an 80% shot of being cured for life. I would recommend however taking it slow, try the meds, then the smaller operations and then see where you are. Take it like a step ladder. Ultimately it took my wife 5 years to get to a cure, during that time she graduated college and landed her first job. I won't lie it's a horrific struggle, but family and friends and a good medical team can pull you through this. Good luck!
@ch0828a Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
@ch0828a Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
Hey, you hit the nail on the head when you said the pain is "under control" - if I miss a dose of the lyrica I feel the throb start... Sometimes the throb is slightly worse and I fear it will worsen so I take a pain pill but I try not to do that since it's nothing compared to a flare-up (is that what the exacerbations are called?)... I thought a remission was when the pain was gone or mostly gone - your wife's pain stays? Does that happen to everyone eventually?
@bubblybabs Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
my mom suddenly felt pains in her head at one point... she went to the doctor and it turns out it's Trigeminal Neuralgia, I almost want to cry when I see my mom in that pain she goes through... Apparently it's not curable and it hurts me to know that she has to live with this sickness for the rest of her life.
Friends, if you have Trigeminal Neuralgia make sure your doctor is focused on treating TN as a major part of their practice. My finacee went through 50 different docs before getting her MVD at Hopkins. One of her prior Brain Surgeons did needle proceedures that did not take. He was a general Brain Surgeon, at JHU they actually have a focus on TV, it is important to find docs that focus on this illness, it makes a HUGE difference. Hopkins, Mayo and other major hospitals focus on TN.
I am so sorry to hear you have it. Do you need help finding another place to go? There are folks out here who want to help. My fiancee went through 50 doctors over 5 years in 3 major cities before we learned of Johns Hopkins. You have to find the right doctor for you, let me know if you want help.
We who have TN have always been rejected. The doctors just think we want pain meds or we are just lonley and want attention. If we could just take a TENS unit and hook it to thier faces and turn it on high,then they would know the pain of TN.
I agree very much with you lefttwtoright. My TN has been getting worse lately and I'm on pain meds for it, but it doesn't seem to be helping as much anymore. I told my doctor this and suggested an increase in my meds. She wouldn't do that, and on top of it, said that now we have to meet once a month regarding my meds. I left feeling worse & like I was being treated as someone just looking for drugs for kicks. NOT the case. i'm in serious and severe pain!
I'll keep your friend in my prayers. Keep hope and definitely refer your friend to Johns Hopkins. My fiancee 8 months since her surgery and pain-free.
I have been suffering with Trigeminal Nueralgia and this last attack was the worse one that I ever had. I had never felt pain that extreme. I have MS and I am trying to see what else is out there besides drugs that make me so out of it. Thank you for showing me that there are other options and Hope.
Glad to help Susan, my girlfriend has been suffering from TN for 5 years, she's had a couple of operations: gamma knife and 2 glycerol injections. The first glycerol injection cured her until a case of shingles brought the whole TN condition back with a vengance. I've been researching other options for her and the Trigeminal Center at Johns Hopkins looks promising, so we're going to take her there next month. Good luck with your treatment and feel free to keep posting comments. Chris
Chris that is exactly what happened to me. I got a bad cold and then a cold sore and that is when the TN struck with Lightning rods across my cheek and Jaw. I
My girlfriend had Microvascular Decompression at Johns Hopkins on Wednesday, she is not feeling any pain from TN at all and the post operation pain isn't much compared to TN. The staff at Hopkins were pros and very caring. Will keep posting as things progress.
I have suffered TN for over two yrs,,,,I like this docter, most do not understand how painful Can we say EXCRUCIATING!!!I I want this procedure
msthang705 1 month ago in playlist Favorite videos
I'm almost 15 and have been suffering with tn for over a year. It is complete and utter agony which controls your life due to the fear of triggering another attack. Not many people understand it my local doctor barely knows how to help here in the uk.
1997everything 2 months ago
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I had trigeminal neuralgia for 10 long miserable years, it was absolute AGONY. You are locked into HELL with it. One day I tried chinese acupunture. It was an IMMEDIATE SUCCESS and I was cured. I have have been pain free for 9 years now. How I bless those needle in my face the chinese doctor put in.
LotusReach 4 months ago
im pretty shore i have this condition, i went through depression and panic attack it really did make me loose my mind. i now y they call it the suicide condition because ive been there.
i wanna no if tn or atypical can effect the sensors in your face because i get a strange high feeling its really weird.
sixeye666 10 months ago
Hello Everyone. My dad suffers from Trigeminal since 2005. He owned a gas station in my country, Venezuela for more than 15 years, so I guess the contact with gasoline helped a lot that syndrom to beging. To be honest he rules out any medical help because he had tried everything, with no good results. My question is: Are alternative treatments like accupuncture effective in these kinds of diseases? I`d like to have feedback, I´m really worried. Can´t stand seeing him like that!
atergonomico 11 months ago
This has been flagged as spam show
Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
leslovesmusic 1 year ago
@nylawyer55 I'm so sorry for your daughter. The easiest way to describe TN pain, which is very specific, is the same feeling you get when a dentist hits a nerve in your tooth. It is only facial pain, but I get neck and shoulder pain from tensing up. If you would like to talk, I'd be more than happy-send an answer through this and we'll sort email addresses. I do so feel for her - and for you: I've had this since 20 and it's so hard for a parent to see.
Horacechicken 1 year ago
PLEASE, if you suffer TN, get in touch with this #1 TN surgeon:
Dr. Tom Kopitnik, Mountain View Hospital & Neurosurgery
Casper WY 307-266-4000 VERY reasonable with rates and payments.
I'm 59 and my surgery recovery was unbelievably fast- out on 2nd day after surgery and back to life totally TN pain-free after 3 years of suffering! Contact me.
flymasterA 1 year ago
@flymasterA My 28 year old daughter is suffering terribly; tooth pain with no cause, migraines and neck and shoulder pain... could this be trigeminal? Doctors here in New York have not diagnosed it as such and are trying to treat all symptoms (all on her right side) as individual problems. She has no life and is suffering. What do you think? Thank you for your post.
nylawyer55 1 year ago
@nylawyer55 TN isn't something that is diagnosed per say. Everything else is ruled out 1st. Then if the patient reacts favorably to tegretol, then it's a pretty sure deal- TN. All of my pain was in the jaw, lips, tongue, and chin on the right side. It's an unreasonable pain. After irritating the nerve severly, the brain can't distinguish the signals ad it transposes them as pain- unbelievable pain. They can be a micro-second long or minutes of agony. Mine pounded in rythym to my heart.
DonObeWan3 1 year ago
@nylawyer55 For the first step , she must ask doctor for Tegretol. If it helps, this is Trigeminal Neuralgia. Tegretol is THE BEST ! If not help,there is something diferent. Do not let dentist to pull her tooth out !!!
Bokicazver 9 months ago
I just had the MVD surgery Thursday, after suffering 3 yrs w TN. My advice is to check out this route, and if it works for you and if you can get excellent surgeons who have a high percentage record of cure, then do whatever it takes to get it done. I 2nd. mortg. my house. Surgery at 2:30p, woke 7:30, walking the halls 9:30, released Sat. am pain-free! Dr. Tom Kopitnik is my HERO!!!
flymasterA 1 year ago
A combo of Radio frequency and glycerin rhizotomy saved my life. Thank You Dr. Carson and Carol James.
MysticalMom1313 1 year ago
I've had Atypical Trigeminal Neuralgia (R. Maxillary) as well as severe migraines since September 1972 (for over 37 years). Neurologists here in Buffalo have ruled out MVD and Gamma Knife, due to my "atypical" symptoms (and non-responsiveness to Tegretol). It's nearly totally disabling, especially during the "attacks" which I have endured regularly, two or three times a month, often lasting for days at a time, since I was age 14. The isolation is profound, ten thousand days and nights alone...
quill444 2 years ago
@quill444, sounds like your symtoms/pain is nearly identical to mine. I've had it over 16 yrs. now...started when I was 34. Good luck to you finding something thats helps.
preston45922 1 year ago
I suffered from this affliction. I was fortunate enough to have micro-vascular decompression surgery. This was immensely successful. I cannot thank my surgeon enough for the relief the surgery gave me. I will recommend this surgery to anyone suffering from TN. As the video claims: "There is no need for anyone to suffer from this type of pain" - no wonder it is called the suicide disease.
gismosesse 2 years ago
Thank you for your comment! I've been suffering from TN for 3 years and the surgery is my last hope. But I've hear MVD is not a panacea, as not all patients have the nerve-vein conflict. I got severe exposure while practicing winter swimming and no idea whether MVD or Gamma-knife would be best solution. What caused YOUR TN?
Msgrailfish 2 years ago
The cause of my TN was nerve-vein conflict. Like bikerbarbie1964 I too had reached the max level of meds to treat my TN. Life was unbearable. I'm not a Dr. but my surgeon got it right by performing the MVD surgery. It is now 10 years later and I'm still pain free. It is a big decision to make, but I had got to the point where I simply had to take the decision and have the operation. I've not looked back since.
gismosesse 2 years ago
Great to hear that! As an experienced sufferer, I am truly happy for you! Just wonder whether ordinary exposure could also become a cause for the nerve-vein conflict? 1. Could anybody with relevant experience of being exposed please answer my question? 2. What kind of diagnostics should I take up to define the degree of nerve damage/or vein-nerve compression? MRI?
Msgrailfish 2 years ago
@gismosesse After 12 years of nightmare, I decided to go to MVD ! Come home after MVD and 3 days in hospital , and I am ALLREADY pain free and HAPPY ! People , don't suffer and waste your life...
Bokicazver 9 months ago
This has been flagged as spam show
I've had this pain for a few yrs. went to doctor he suggested Migraine meds. Went on those, it subsided the pain, then went to dentist had root canals of upper right teeth only to have them eventually removed. Have had no pain since in my right side though I hear it can recur a few yrs later. Recently was in a severe auto accident. Neurologist found brain lesion thru MRI that suggest MS ..It's all starting to make sense to me now..GET checked for MS ( Multiple Sclerosis)
44bugaboo 2 years ago
I just want to add that I am now on the list for MVD surgery, as it has the highest success rate, although my meds needed to increase over time for almost 12 years I had a lot of relief, with only breakthough episodes of bad pain, unfortunately I'm now at max. meds with no relief at all and my quality of life is almost zero., this is the month I'm hoping for surgery, there is hope, just try to hang on, I know it's very hard.
bikerbarbie1964 2 years ago 2
Could you please share what was the reason for you TN? Was it due to the severe exposure (as in my case), or functional nerve disorder due to the conflict between the nerve and the nearby tissues/blood vein? Please, be so kind and tell!
Msgrailfish 2 years ago
Not sure of the cause, it just started for no apparent reason, if there is a vien or tissue problem, it's not showing up on the MRI, I did suffer a head injury in a car accident, but it was the front of my head, so I have seen the surgeon and now he wants me to see a 4th Neurologist, I would think you suffered nerve damage? How did that happen? In the case of nerve damage I don't know if MVD would help, what do the doctors say?What kind of drugs have they offered?
bikerbarbie1964 2 years ago
Traditional drugs, including vast amounts of B-vitamin. In case it is nerve damage, the Gamma-knife, I guess, will help, although I'd prefer MVD. It's getting worse all the time, in the beginning I had pain-free periods lasting 6 months, now it's 1,5-2 months. Don't want to be on meds anymore, tilting to radical solution - cutting the nerve...
Msgrailfish 2 years ago
I have trigeminal nueralgia and went through the mis-diagnosis process, a very smart oral surgeon guessed at what it was, if your having trouble finding relief, in the first stages of this disease, tegrotol will usually relieve the pain immediately or gabapentin is the other one, so if the teeth don't appear to have a problem, ask for one of these medications, if they relieve your pain, you have your diagnosis. Unfortunately over time, they tend to need to be increased.
bikerbarbie1964 2 years ago
I pretty much have given up on ever finding true help for my husband. He feels like a guinea pig, and has such a horrible case. Constant burning pain in the background with the horrible Ice pick, hot poker strikes into his temple and eye. He even loses his vision in his right eye sometimes, and no one can figure out why. This is why we have given up, and he just badly wants to die and go to heaven where the pain will be gone.
fourbluesixpink 2 years ago
in my 7+ years of experience with unremitting intense pain, ignorant if not altogether incompetent doctors and loss of almost all things and people that i hold dear, the best advice that i can give, is to PRAY; and hopefully find the RIGHT doctor. DON'T GIVE UP!
4315u2 2 years ago
In order to help me out with an argument i'm having, would you say that cluster headaches are the worst pain known to man, or is it Trigeminal Neuralgia?
phocjame 2 years ago
@phocjame trigeminal nueralgia is the suicide disease, does that answer your question, I don't doubt cluster headaches are very painful, but no painkiller will relieve the pain of trigeminal nueralgia, have someone put a burning electrical prod into the side of your face and you will have your answer.
bikerbarbie1964 2 years ago
@phocjame The 10 times worst is TRIGEMINAL NEURALGIA !!!
Bokicazver 9 months ago
@Bokicazver Woah, that's an old post. But thank you for responding anyway :)
phocjame 9 months ago
try the diamond headache clinic in chicago. see dr. freitag if you can. i have the worst case of occipital neuralgia with a glassopharyngeal tear. he diagnosed me correctly in a very short time. unfortunately the insurance co. wouldnt pay for treatment. but, i think i wouldve gotten better treatment there than the myriad of clinics and hospitals i've been to since my injury in 2002.
4315u2 2 years ago
i am experiencing a sharp pain behind me right ear. i was doing some research and i want to believe that i am in the early stages of this terrible condition. when i grind my teeth this similar pain takes comes to me. It hasnt developed into an excruciating pain as of yet but it really has me thinking and at the same time a bit scared. I will set up a visit to the doctor tomorrow to see if i can get diagnosed.
munoz1051c 2 years ago
i know it is rarely condition and become worst when you get an attack ! and the even more worst thing is that it keeps you horrified of a scary situation of an stimulation of a pain and your medication and the stimulation keeps you occupied
vindee2512 2 years ago
Please accept my apologizes for the user name shown on my comment from yesterday. I've never commented on youtube before, and I was on my son's computer, and that's the silly name he uses.
TinaN CT
TNfromNervedamage 2 years ago
I have TN due to nerve damage during my total joint replacement of my right TMJ. It's been 2 yrs. now so the dr. says the nerve will not recover. I have been in pain 24/7 since the surgery. I'm never without pain, just different degrees of pain(I take pain meds everyday, and lyrica). I'm looking for anyone else who has a case similar to mine. Know anyone?
TinaN CT
suphoebetchhead 2 years ago
does anybody know a good doctor in new york area
breakawaygirl1986 2 years ago
Right now I'm taking scheduled lyrica w/ ultram prn. I was in the hospital when first diagnosed with TN - I had a GI bleed from taking 800mg ibuprofen every 4 hours for 3 days w/ little relief from the pain & unable to eat or sleep. I had 4 kids natural - 2 in a birthing center, and I can honestly state that the TN pain is far, far worse than labor. I absolutely dread another attack - I keep hoping that my first attack was my last. Is that possible? Or am I being unrealistically hopeful?
bubblybabs 2 years ago
Just been dx with this... Pain would last for hours, not minutes... It affects the whole right side of my face, my mouth, my tongue... I taste blood when there isn't any... It's horrible... At first, I thought it was a horrible toothache... My poor kids watched me cry as it throbbed... Doc put me on lyrica... I'm 46... I understand you go through periods of remission with this and I am apparently in remission... I live in fear of another attack...
bubblybabs 2 years ago
I am so sorry to learn of your diagnosis. My wife had periods of remission, that would not really be remissions, the pain would just be under control usually through massive amounts of painkillers, which left her other vital organs at risk. Ultimately surgery was the best option for her. She had Glycerol, Gama ray and Microvascular decompression.
ch0828a 2 years ago
Everyone is different, but as we researched, the patients with the highest sucess rates tended to be the patients who got MVD.
ch0828a 2 years ago
there's an 80% shot of being cured for life. I would recommend however taking it slow, try the meds, then the smaller operations and then see where you are. Take it like a step ladder. Ultimately it took my wife 5 years to get to a cure, during that time she graduated college and landed her first job. I won't lie it's a horrific struggle, but family and friends and a good medical team can pull you through this. Good luck!
ch0828a 2 years ago
This has been flagged as spam show
@ch0828a Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
leslovesmusic 1 year ago
This has been flagged as spam show
@ch0828a Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
leslovesmusic 1 year ago
Sorry, what is MVD?
bubblybabs 2 years ago
Hey, you hit the nail on the head when you said the pain is "under control" - if I miss a dose of the lyrica I feel the throb start... Sometimes the throb is slightly worse and I fear it will worsen so I take a pain pill but I try not to do that since it's nothing compared to a flare-up (is that what the exacerbations are called?)... I thought a remission was when the pain was gone or mostly gone - your wife's pain stays? Does that happen to everyone eventually?
bubblybabs 2 years ago
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@bubblybabs Our daughter who suffered from TN is now completely pain free thanks to a treatment at the Laser Med Center in Myrtle Beach SC. It is non invasive, pain free and has no side effects. Please visit them lasermedcenter, you can be pain free too. Please, please call them.
leslovesmusic 1 year ago
my mom suddenly felt pains in her head at one point... she went to the doctor and it turns out it's Trigeminal Neuralgia, I almost want to cry when I see my mom in that pain she goes through... Apparently it's not curable and it hurts me to know that she has to live with this sickness for the rest of her life.
leonharts 3 years ago
i'm so sorry
JUDYFAN61 3 years ago
It's okay, you're among friends who've been there, done that.
ch0828a 3 years ago
yes i need help please forgive my comments, i'm sorry this is wwhud please remove those comments
JUDYFAN61 3 years ago
Friends, if you have Trigeminal Neuralgia make sure your doctor is focused on treating TN as a major part of their practice. My finacee went through 50 different docs before getting her MVD at Hopkins. One of her prior Brain Surgeons did needle proceedures that did not take. He was a general Brain Surgeon, at JHU they actually have a focus on TV, it is important to find docs that focus on this illness, it makes a HUGE difference. Hopkins, Mayo and other major hospitals focus on TN.
ch0828a 3 years ago
im 16 n i have it ._.''
just left a restaurant after i took my first bite.. sigh...
dolefruitycup 3 years ago
CAROL JAMES IS A JOKE
wwhud 3 years ago
Why do you think that wwhud?
ch0828a 3 years ago
SHE REJECTED ME i HAVE IT
wwhud 3 years ago
I am so sorry to hear you have it. Do you need help finding another place to go? There are folks out here who want to help. My fiancee went through 50 doctors over 5 years in 3 major cities before we learned of Johns Hopkins. You have to find the right doctor for you, let me know if you want help.
ch0828a 3 years ago
We who have TN have always been rejected. The doctors just think we want pain meds or we are just lonley and want attention. If we could just take a TENS unit and hook it to thier faces and turn it on high,then they would know the pain of TN.
lefttwtoright 3 years ago
I agree very much with you lefttwtoright. My TN has been getting worse lately and I'm on pain meds for it, but it doesn't seem to be helping as much anymore. I told my doctor this and suggested an increase in my meds. She wouldn't do that, and on top of it, said that now we have to meet once a month regarding my meds. I left feeling worse & like I was being treated as someone just looking for drugs for kicks. NOT the case. i'm in serious and severe pain!
j7609 3 years ago
My best friend in the whole world has tn and it literally breaks my heart
actsnoblemartin28 4 years ago
I'll keep your friend in my prayers. Keep hope and definitely refer your friend to Johns Hopkins. My fiancee 8 months since her surgery and pain-free.
ch0828a 4 years ago
aww god bless you. her name is april.
god bless you and her fiancee :)
actsnoblemartin28 4 years ago
I have been suffering with Trigeminal Nueralgia and this last attack was the worse one that I ever had. I had never felt pain that extreme. I have MS and I am trying to see what else is out there besides drugs that make me so out of it. Thank you for showing me that there are other options and Hope.
Susan
Suezala 4 years ago
Glad to help Susan, my girlfriend has been suffering from TN for 5 years, she's had a couple of operations: gamma knife and 2 glycerol injections. The first glycerol injection cured her until a case of shingles brought the whole TN condition back with a vengance. I've been researching other options for her and the Trigeminal Center at Johns Hopkins looks promising, so we're going to take her there next month. Good luck with your treatment and feel free to keep posting comments. Chris
ch0828a 4 years ago
Chris that is exactly what happened to me. I got a bad cold and then a cold sore and that is when the TN struck with Lightning rods across my cheek and Jaw. I
Suezala 4 years ago
It's such a terrible affliction, I wish the best for your treatment.
ch0828a 4 years ago
Chris, I am going to contact this place because they sound like they really know a lot about this. I wish you the best also.
Susan :)
Suezala 4 years ago
My girlfriend had Microvascular Decompression at Johns Hopkins on Wednesday, she is not feeling any pain from TN at all and the post operation pain isn't much compared to TN. The staff at Hopkins were pros and very caring. Will keep posting as things progress.
ch0828a 4 years ago
I am so happy that she got relief from the pain. Thank you for letting me know. I wish you two the best and thank you for sharing.
Susan :)
Suezala 4 years ago