Trigeminal Neuralgia Community
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644083 tn?1282607775

sick of the pain

My mother has been ill for more than a year she has gone to more than 8 specialist.No one has come up with a solution,she has been told she has TMJ,her teeth are unaligned,and she has trigeminal neuralgia.She has had a facial MRI she wears a guard and takes pain medicine.My mother is not even 50 years old and has already given up on her life.She says the pain is no longer barable even when taking pain killers.Doctors have given her hydrocodine,lyrca,nurotin and many other medications.Let me start from the begining starting back in august 2007.My mother was dignoised with high blood pressure so she was given a medication to help her out.The couple of months my mother took the medication it made her feel dizzy and gave her headaches.So she went to a different doctor closer to our town and he gave her a different prescription for the blood pressure.She than a week later went to her dentist and had 2 mulars side by side removed.My mother than returned to work 1 day later,while at work she had some kind of seizure(Well we're not exactly sure what it was)she just starting shaking uncontrollably.She was taken to the emergency room were she was told it was nothing,that her blood pressure was fine.So my mother returns to the doctor ,who tells her everything is o.k. there is nothing wrong with her.So i made an appiontment for her with a different doctor in the city near our area.He told me that her shaking had nothing to do with the medication even though it was the wrong medicine.He told us that the blood pressure medicine that was given to her was the same medication from the first time,my mother is allergic to the medicine and thats why she was feeling dizzy and felt like she had hair on her tongue.He than gave her a different type of blood pressure medication.A couple of days later my mother started feeling pain in the right side of her face and mouth.She returned to the dentist who sent her to a specialist who removed a piece of bone that was growing out from her gums were she had the mulars removed.The specialist told her that the bone was really close to her sinus cavity.She came back home hoping the pain would subside,but it never did.She was than told to see a maxi facil oral surgeon,because they thaught her jaw might be broken.See when she was shaking one of her co-workers was holding her face.So she went and he told her to go see a TMJ specialist,she went to the TMJ specialist and he told her to see a nuerologist first.Of course we had to travel 6 hours from where we live to find a neurologist,he did an MRI and said that he was'nt sure but it looked like trigeminal neuralgia.So why were there i called the TMJ specialist and told him the prognosis,he than told us to see a friend of his why we were there.This doctor told my mother that it was not nerve problems,but it was TMJ for us to go back to the TMJ specialist.We returned home my mother even more depressed than before.at least when they told her it was trigeminal neuralgia it gave her some hope for a cure.We than returned to the TMJ doctor and he told her that it might be more than just one problem.He had a splinter made to help realign her teeth,he than sent her to another dentist who works with nerve damage in the face,but he told my mother there was nothing he could do for her.The problem is that she has pain on her right side all the time,but she gets pain on her left side every ones in a while.He told her that if it was trigeminal neuralgia that it would not go over to the other side of the face.She has since returned to the TMJ docotor who sent her to a maxifacial oral surgeon for a shot to block the pain.She went to this maxifacial docotor 3 weeks ago to get her shot.We found out while we were there that the shot was only to prove that there was no damage to the jaw disc.To say the the least the shot didnt relieve any pain it just made it worse.So once again we will return to the neurologist for another MRI,but that won't be for acouple of weeks.My mothers symptoms consist of pain all the time on the right side of her face which radiates from the upper jaw to the lower jaw.She sometimes has pain in the left side of her face.She has also had just that one side of her face swell up from the inside of the cheek to the outside,up into her ear.She has pain in her neck and shoulders and has problems with her mouth snapping shut.She says that sometimes it feels like she has water in her ear and sounds are really loud.Please if anybody out there can help it would be greatly appreciated,my mother would like to have her life back.P.S. my mother was adopted so we have no family background and she has never had a tetnis shot.  date is 10-7-2008
3 Responses
641819 tn?1240329530
I see that you've listed several meds there, but I don't see carbamazepine on it. Frankly I've found that drug the best for me. May be worth looking into. It's an anti-seizure drug like gabapentin, and took about 4 days to 'kick in' for me. But when it did? PHEW. Still have some pain, but waaay less.
Avatar universal
Sorry to hear about this.  I am in exactly the same situation.  I have TMJ and some terrible neuralgia going on here.  Its severe and I am in dire straights to because noone here in Ontario, Canada where I live is qualified to deal with this.  They don't have a clue as to what to do.  I have been boxed around all over the place and the only explaination was that I have some kind of compression they think from the TMJ joint.  It is causing the trigeminal nerve alot of pain and I am in constant agony, without letup... I know how she feels because I am feeling the same way like giving up. Here the medical proffesionals don't care to even read anything properly, they just give you drugs, drugs and more drugs.  Like if that is the answer to everything.  I can't do without a few of them but the anti-convulsants they gave me make me so sick.  Dizzy and I feel like I want to vomit all the time.  I am getting so sick it is hard for me to do anything anymore.  They tell me from an MRI, that my discs are badly displaced, on the one side especially.  And the Oral Surgeon said that it is too severely displaced for it to go back.  I was overwhelmed.  Everything I ever read about discsectomies has been bleak, and here they don't even graft fat in there, and it requires continious open joint surgery.  I am so afraid of all this, its terrible. I never knew stuff like this could happen.  THe nerve problem is horrible to deal with I get no relief until I sleep, and lately I tried another anti-convulsant, and I can't sleep hardly at all.  ITs frustrating really.  One makes me sleep all day and the other one I can't sleep enough.  Its like goldilocks and the three bears..I hope you Mom hangs in there.  Did they do a proper MRI of her jaw joints, at this point??  She needs to see what is going on in there, this can be causing compression, if her discs are badly displaced.  Would like to know how she is doing??  


467070 tn?1224628977
Yeah, it's deffinatly sounding like Trigeminal nerve damage/ irritation. She needs help right away, and some Tegretol asap. That is the only drug that will give her some type of releife . The pain in the ears goes along with it , tell your mom to use a warm to hot compress on the face / jaw area , and to try not to talk when it hurts real bad.
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