Aa
I have atypical Trigeminal Neuralgia!
Hello to all,
Because till now, for my pains have helped me only two Neurologists (one from Germany,long time ago, and another one from Russia, also Chiropractor, both with shots between neck and shoulder muscle), I want to write, that I have atypical Trigeminal Neuralgia. It is not, that pain comes suddenly like from the heaven, but it hearts always. The worst pain is in the right eye (like a knife), right side of jaw bone. The pain comes from right side of back head (Occipitalis). There are four points, where I have most pains: right eye, occipitalis, between neck and shoulder muscle and also right shoulder joint, where I have benign tumor. In the last time, doctors say, it is all from muscles, that I have neck muscles and nerves, bunched up. It makes swollen also my chin (under chin).There are more diagnosis: Hypotireosis, Enthesopatia Levator Scapula, Sinusitis maxillaris, N.Occipitalis, N. Suprascapularis, 3 cm areal sclerosis on the right occipitalis Head CT), Vein, 10x11mm (MRI) on the head and benign tumor.I have now only drugs for evening: Rivotril, Naproxen and for sleeping.
Who can help me?
I don't work since May 2000, because of all this pains, and have tried suicide, more times.
Bobbie33
Because till now, for my pains have helped me only two Neurologists (one from Germany,long time ago, and another one from Russia, also Chiropractor, both with shots between neck and shoulder muscle), I want to write, that I have atypical Trigeminal Neuralgia. It is not, that pain comes suddenly like from the heaven, but it hearts always. The worst pain is in the right eye (like a knife), right side of jaw bone. The pain comes from right side of back head (Occipitalis). There are four points, where I have most pains: right eye, occipitalis, between neck and shoulder muscle and also right shoulder joint, where I have benign tumor. In the last time, doctors say, it is all from muscles, that I have neck muscles and nerves, bunched up. It makes swollen also my chin (under chin).There are more diagnosis: Hypotireosis, Enthesopatia Levator Scapula, Sinusitis maxillaris, N.Occipitalis, N. Suprascapularis, 3 cm areal sclerosis on the right occipitalis Head CT), Vein, 10x11mm (MRI) on the head and benign tumor.I have now only drugs for evening: Rivotril, Naproxen and for sleeping.
Who can help me?
I don't work since May 2000, because of all this pains, and have tried suicide, more times.
Bobbie33
Hello Bobb,
Thank you for advice.
I don't have any depression, only pains. I was in the Hospital, when I took sleeping pills. Just psychiatrist told me, all my pains are from the neck muscles. But there is also big Scapula (shoulder muscle), that is always swollen, and makes pressure on the neck nerves and muscles. He told me also, I should do some kind of exercise for muscles. That is not possible, after so long time, I have it.
I am searching further, what is the cause for atypical TN.
Kind regards, Ms. Bojana (Bobbie is my nickname)
Thank you for advice.
I don't have any depression, only pains. I was in the Hospital, when I took sleeping pills. Just psychiatrist told me, all my pains are from the neck muscles. But there is also big Scapula (shoulder muscle), that is always swollen, and makes pressure on the neck nerves and muscles. He told me also, I should do some kind of exercise for muscles. That is not possible, after so long time, I have it.
I am searching further, what is the cause for atypical TN.
Kind regards, Ms. Bojana (Bobbie is my nickname)
Hello,
I am so sorry for all your troubles. Is not to believe in all that.
I am collecting all about Atypical Trigeminal Neuralgia. There is a lots of causes for it. One doctor from Germany told me, that this nerve is somehow irritated on the way from the head to the face. Could be, because I have very long time Sinusitis maxillaris, but there is only swollen mucus membrane.
Another, Russian Neurologist, Chiropractor told me, that is because of Sinusitis, too. The last one, Psychiatrist (I took sleeping pills) told me, all is from neck muscles. I believe in the muscles, because drugs for muscle spasm help me. I take them in the evening, because during the day I am very sleepy.
On your place, I would see, what is wrong with the neck? There is one nerve coming from the C3, and causes Neuralgia.
Also, blood vessels on the head can cause ATN.
I have lost 4 healthy teeths during this time of searching cause for this pains.
I personally think, that Neurologists know very little about atypical Trigeminal Neuralgia. They all know about this: "tic doloreux" and nothing else.
Try to get this drug, Rivotril, 2mg! It is for muscle spasm, and helps also for Neuralgia. Don't go so much around Surgery. And don't think about suicide, please!
Kind regards, Ms.Bobbie, Slovenia
I am so sorry for all your troubles. Is not to believe in all that.
I am collecting all about Atypical Trigeminal Neuralgia. There is a lots of causes for it. One doctor from Germany told me, that this nerve is somehow irritated on the way from the head to the face. Could be, because I have very long time Sinusitis maxillaris, but there is only swollen mucus membrane.
Another, Russian Neurologist, Chiropractor told me, that is because of Sinusitis, too. The last one, Psychiatrist (I took sleeping pills) told me, all is from neck muscles. I believe in the muscles, because drugs for muscle spasm help me. I take them in the evening, because during the day I am very sleepy.
On your place, I would see, what is wrong with the neck? There is one nerve coming from the C3, and causes Neuralgia.
Also, blood vessels on the head can cause ATN.
I have lost 4 healthy teeths during this time of searching cause for this pains.
I personally think, that Neurologists know very little about atypical Trigeminal Neuralgia. They all know about this: "tic doloreux" and nothing else.
Try to get this drug, Rivotril, 2mg! It is for muscle spasm, and helps also for Neuralgia. Don't go so much around Surgery. And don't think about suicide, please!
Kind regards, Ms.Bobbie, Slovenia
Hi,
Ask your neurologist about the possibility of an Indomethacin like responsive headache, and you need some help to get out of depression by a psychiatrist because there are so many advances in managing headache thes days.
Bob
Ask your neurologist about the possibility of an Indomethacin like responsive headache, and you need some help to get out of depression by a psychiatrist because there are so many advances in managing headache thes days.
Bob
Hi Bobbie,
I went to my new oral surgeon Md yesterday, after having been to Boston Harvard Dental School to have an evaluation by one of the few neurosurgeons nationwide who deal with nerve repair.I am very tired right now to get into all of this, but when I saw your plea I wanted to ans. forgive an spell checks etc.
june 2005 implant surgery/immediate agony.reported said it was the ill fiting denture. I believed him. My dentist believed him. Mar 29/ 2nd implant surgery/ unbeliavable agony. Aug massive implant infection/hospital/ he had lied in the admit papers, saying I was in pain for three weeks, and having panic. I knew nothing until I pulled all of my records. I never knew but was diagnosed with osteomeylitis. Thru two cat scans, and never told nor treated, also mandibular abscess. Home with picc line a month later a new abscess . Incredible agony. sypmtoms always reported, but never written. He was making up lies and I did not know it. When I caught him in a lie, I got my new guy who believed me from the minute he saw me he knew I was in serious trouble. the oral surgeon I had said I was a hypochrondiac and nothing was wrong, i wa making it up, and injecting myself with disease.
new catscan, revealed extensive osteomeylitis. I had sever facial pain, numb lower lip, numb pain, electric shock, pain increased with wind, cold, talking, eating singing(I am/was a classically trained opera singer who sang through her day) touch, brushing teeth are some of the triggers to send me into agony of uubelievable limits, alread having burning, deep, old, numb throbbing pain ever present, whith for three months tic, which I found to be Tic delaroux (misspell I know) which is part of the TYPICAL trigeminal neuralgia.
I researched like crazy, using firfox, and diagnoised my own once again. I diagnoised myself with everything. My new oral surgeon said I was absolutely correct yesterday with my diagnosis. He had done many injections, test etc himself. I have Oist traumatic trigeminal neuralgia. It is the worst form , because there is little that can be done. The nerves are so severely damaged(mental nerve right and left, and Inferioe alovear nerve right) so that they have degenerated, giving me what is know as "phantom pain". that is why the blocks still left me in pain, though not as much agony. I will be having th nerve cut, and bone graft from my hip to stabilize the jaw. Also will need 5 implants 4 months later, and after that facial reconstructiuon to contoU r my face to be what I was, by a plastic surgeon. I spent 2 month in a hyperbaric chamber to help heal the bone fracture that was NOT diagnoised, and had broken my jaw a year earlier from the infection, and it was not healing, the other OS did not even order other scans. So, I do not know if you have Atypical trigeminal neuralygia,not being a doc, but I do know that it sounds to me with all my research that you do. I have planned my suicide, and think about **** it every single day.Almost every minute. I am in such a rage, that is what keeps me alive. I dance the rage awawy. I allow only 2 hrs tear time a day, for I fear if I let it go, I will be dead,and will not get this freak nailed,or shamed by all his peers and the law. That cannot happen. I have it all set to go with enough stuff to do it the first time.and have given my husband my orders . the ONLY REASON why I have not done it by now is my husband, puppies, and kitties, AND THE HOPE I HAVE BEEN GIVEN from this surgeon, and my LAWSUIT AGAINST THIS FREAK WHO DID THIS TO ME AND .ALL HE CARED ABOUT WAS HIS REPUTATION(HE IS A HOT SHOT ON ALL KINDS OF BOARDS)and his ego made him write the most ridiculous things in my records, easily proven wrong, which gets me my lawsuit, which in CT only 1 percent of malpractice vcases areeven taken. this freak does not even know that I have a healed huge fracture, or PTTN> he said I was making it all up.And was very dramatic. Unfortunately nothing will give back to me what has been taken, or what I have to face. I promised my husband I would try to hang in there until the surgery is over, and the lawsuit are done. I want him set up for his life. If then I cannot tolerate the pain, I am gone. I have had no pain meds for this for nearly 2 years I have suffered alon, until my new doctor. I 6 weeks out of this time in animal like pain which is called primal. I could not stop wailing, and out of cntrol until I collapsed. No memory past a point. This was every 2-4 hurs. He called me "wanting drugs". yes indeed. I who do not take an aspirn unless I am in a bad way. And all the docs who have had me in the past know this about me. I have tons of pictures becasue I wa so darn nosey, not ableto see under my face. Thank goodness for being nosey,i would have nothing to show what happened, just paper work. Photos as 8 by 10 glossys make a horrible presentation. . So all I can say is get yourself to another doctor. One who know about this. It is acknowledged universaly by Physicians as the most painful 'DISEASE" KNOWN TO MANKIND. iT IS ALSO CALLED THE "SUICIDE" DISEASE" because many people have killed themselves with this uncontrolled. Nothing is wrong with you, you are in agony, and not geting treated. I still have not pain relief, I will not take the drugs. they are ineffective against Post traumatic TN, and I am allergic to tegretol whihc could help a bit, maybe. I was called mental, and being a woman, are we shocked? Two men that I met in the Hyper baric chamber were diagnoised within 3 months with tiny(their words) fractures after tooth extraction. I was in there 21 months later. Telling isn't it. The kicker is, the OS who did this to me, was admired by my dentist. So he played him like a tune. He NEVER TOLD HIM THE RESULTS OF MY CAT SCANS. AND MY DENTIST WAS THE REFERRING DOC. Please try top find someone to help you. Maybe someone here can refer you to someone in your area. Do know, I UNDERSTAND . I told my husband that my death would be the kindest thing I could do not for only me, but him. He would heal, I would stop the agony. but I need more time to try the surgery out, and get through the lawsuit that we will win, and he will lose his license. I would prefer to mutilate him as he did me, but that is not acceptable if I plan to live for the time being. No God Blessing you, I do not believe in that anymore, or prayers either. I tell my friends it you want to go ahead,it won't hurt,maybe it will work, so what the heck. I gave up long ago. I say to you, GET A DIAGNOSIS AND TREATMENT PLAN. GOOD LUCK, AND DO NOT LAY DOWN UNTIL YOU GET THAT AT LEAST.
I went to my new oral surgeon Md yesterday, after having been to Boston Harvard Dental School to have an evaluation by one of the few neurosurgeons nationwide who deal with nerve repair.I am very tired right now to get into all of this, but when I saw your plea I wanted to ans. forgive an spell checks etc.
june 2005 implant surgery/immediate agony.reported said it was the ill fiting denture. I believed him. My dentist believed him. Mar 29/ 2nd implant surgery/ unbeliavable agony. Aug massive implant infection/hospital/ he had lied in the admit papers, saying I was in pain for three weeks, and having panic. I knew nothing until I pulled all of my records. I never knew but was diagnosed with osteomeylitis. Thru two cat scans, and never told nor treated, also mandibular abscess. Home with picc line a month later a new abscess . Incredible agony. sypmtoms always reported, but never written. He was making up lies and I did not know it. When I caught him in a lie, I got my new guy who believed me from the minute he saw me he knew I was in serious trouble. the oral surgeon I had said I was a hypochrondiac and nothing was wrong, i wa making it up, and injecting myself with disease.
new catscan, revealed extensive osteomeylitis. I had sever facial pain, numb lower lip, numb pain, electric shock, pain increased with wind, cold, talking, eating singing(I am/was a classically trained opera singer who sang through her day) touch, brushing teeth are some of the triggers to send me into agony of uubelievable limits, alread having burning, deep, old, numb throbbing pain ever present, whith for three months tic, which I found to be Tic delaroux (misspell I know) which is part of the TYPICAL trigeminal neuralgia.
I researched like crazy, using firfox, and diagnoised my own once again. I diagnoised myself with everything. My new oral surgeon said I was absolutely correct yesterday with my diagnosis. He had done many injections, test etc himself. I have Oist traumatic trigeminal neuralgia. It is the worst form , because there is little that can be done. The nerves are so severely damaged(mental nerve right and left, and Inferioe alovear nerve right) so that they have degenerated, giving me what is know as "phantom pain". that is why the blocks still left me in pain, though not as much agony. I will be having th nerve cut, and bone graft from my hip to stabilize the jaw. Also will need 5 implants 4 months later, and after that facial reconstructiuon to contoU r my face to be what I was, by a plastic surgeon. I spent 2 month in a hyperbaric chamber to help heal the bone fracture that was NOT diagnoised, and had broken my jaw a year earlier from the infection, and it was not healing, the other OS did not even order other scans. So, I do not know if you have Atypical trigeminal neuralygia,not being a doc, but I do know that it sounds to me with all my research that you do. I have planned my suicide, and think about **** it every single day.Almost every minute. I am in such a rage, that is what keeps me alive. I dance the rage awawy. I allow only 2 hrs tear time a day, for I fear if I let it go, I will be dead,and will not get this freak nailed,or shamed by all his peers and the law. That cannot happen. I have it all set to go with enough stuff to do it the first time.and have given my husband my orders . the ONLY REASON why I have not done it by now is my husband, puppies, and kitties, AND THE HOPE I HAVE BEEN GIVEN from this surgeon, and my LAWSUIT AGAINST THIS FREAK WHO DID THIS TO ME AND .ALL HE CARED ABOUT WAS HIS REPUTATION(HE IS A HOT SHOT ON ALL KINDS OF BOARDS)and his ego made him write the most ridiculous things in my records, easily proven wrong, which gets me my lawsuit, which in CT only 1 percent of malpractice vcases areeven taken. this freak does not even know that I have a healed huge fracture, or PTTN> he said I was making it all up.And was very dramatic. Unfortunately nothing will give back to me what has been taken, or what I have to face. I promised my husband I would try to hang in there until the surgery is over, and the lawsuit are done. I want him set up for his life. If then I cannot tolerate the pain, I am gone. I have had no pain meds for this for nearly 2 years I have suffered alon, until my new doctor. I 6 weeks out of this time in animal like pain which is called primal. I could not stop wailing, and out of cntrol until I collapsed. No memory past a point. This was every 2-4 hurs. He called me "wanting drugs". yes indeed. I who do not take an aspirn unless I am in a bad way. And all the docs who have had me in the past know this about me. I have tons of pictures becasue I wa so darn nosey, not ableto see under my face. Thank goodness for being nosey,i would have nothing to show what happened, just paper work. Photos as 8 by 10 glossys make a horrible presentation. . So all I can say is get yourself to another doctor. One who know about this. It is acknowledged universaly by Physicians as the most painful 'DISEASE" KNOWN TO MANKIND. iT IS ALSO CALLED THE "SUICIDE" DISEASE" because many people have killed themselves with this uncontrolled. Nothing is wrong with you, you are in agony, and not geting treated. I still have not pain relief, I will not take the drugs. they are ineffective against Post traumatic TN, and I am allergic to tegretol whihc could help a bit, maybe. I was called mental, and being a woman, are we shocked? Two men that I met in the Hyper baric chamber were diagnoised within 3 months with tiny(their words) fractures after tooth extraction. I was in there 21 months later. Telling isn't it. The kicker is, the OS who did this to me, was admired by my dentist. So he played him like a tune. He NEVER TOLD HIM THE RESULTS OF MY CAT SCANS. AND MY DENTIST WAS THE REFERRING DOC. Please try top find someone to help you. Maybe someone here can refer you to someone in your area. Do know, I UNDERSTAND . I told my husband that my death would be the kindest thing I could do not for only me, but him. He would heal, I would stop the agony. but I need more time to try the surgery out, and get through the lawsuit that we will win, and he will lose his license. I would prefer to mutilate him as he did me, but that is not acceptable if I plan to live for the time being. No God Blessing you, I do not believe in that anymore, or prayers either. I tell my friends it you want to go ahead,it won't hurt,maybe it will work, so what the heck. I gave up long ago. I say to you, GET A DIAGNOSIS AND TREATMENT PLAN. GOOD LUCK, AND DO NOT LAY DOWN UNTIL YOU GET THAT AT LEAST.
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