"a Pain That Can Take Away Your Smile!"

Went to the Dentist in 1990 and had a root canal.  Horrible throbbing pain after few hours.  Returned to Dentist by way of husband at 12:00 midnight. 

Said nothing looked wrong.  Kept calling my Dentist several weeks until the pain finally went away.  Moved to another state and was diagnosed with TMJ.  All my beautiful crowns were removed teeth with fillings, just in case I was allergic to metal, etc.  Pain did not go away, but I ended up with a partial because I could not stand it in my mouth, most of the time.  Went to all kinds of doctors, neurologists and they couldn't explain it.   Finally, went to an emergency room late at night and a nurse said "Honey, I know what is wrong with you.  My friend has it.  It is called Trigeminal Neuralgia.  I explained all my pain and it was just like her friends.  Sent to her doctor.  Doctor confirmed but wanted me to do surgery.  The surgery, Gamma Knife, I think frightened me so I opted to go to another doctor I had heard about through a friend.  He considered himself a problem solver and he was.  It took several weeks but he is my complete doctor.  He cured my migraines that just made the TN worse, put me on high blood pressure medicine, stopped my periods, Tegretol, Neurontin, Valium, etc.  I was having every symptom.  Burning in temple, cheek, shocking, throbbing like tooth ache and it got in my mouth so my daughter fed me with my Mother's food syringe.  My Mother had an illness and we had to feed her with a syringe

Anyway, I stayed almost pain free for four years but it is back, however because my doctor lowered my medicine back and forth, I am on full strength again and it is working on my TN.   I think it is getting quiet.  he had given injections in my  face that helped but do not know what. 

This illness can stop your life and make you want to give up.  I am the keyboardist at Church and God has totally gotten me through this illness along with a very supportive family and friends.  You have to fight.  Learn how to now wash one side of your face or wash it by going up rather than down.  Brush your teeth, carefully, and keep you teeth together and do not blink.  it sound  crazy but it helps me.  There are so many  things you can do.  Do not let the cold wind hit your face.  I have so many stories, you wouldn't believe me.

Please people understand that this illness is serious and hurts like you can not explain.  It people do not stand my you.  Trust me , I would be gone by now.  My blood pressure goes way high and my mood sometimes just saps me of my energy.  I'm getting better by enduring the pain and if people look at me when tears are flowing down my face and I cant touch them, I just go on.   Years ago I would scream from the pain.  Now I can almost stay quiet.  God is giving me the strength.

I am giving my family instructions on when I get old because I am truly so frightened about getting old with this illness and no one who knows how to care for me.

I could write more but it seems I have not made a very good impression with my first remarks.

Lydia Marie 

LydiaMarie LydiaMarie
61-65, F
9 Responses Feb 19, 2010

Same exact thing that happened to me, going to the dentist. It always seems to be the dentist. Had TN for 4 years too! Had taken drugs given to me by my TMJ specialist. Taking medication for TN is only temporary. My specialist referred me to a Dr. that specialize in TN. That Dr. said that there are 2 ways to choose from. GAMAKNIFE which is not evasive: a chance of about 80 to 87 percent chance of going away, or MICROVASCULAR DECOMPRESSION which is evasive: a chance of about 87 to 95 or 100 percent chance of going away, that require surgery. I chose the evasive one that requires surgery. It was suppose to be a one day stay at the hosp, became a 3 week stay due to complication. But food never taste so good. I had an no more pain right after the surgery. I could eat, talk, wash my face, and even could handle wind, and touch my face without no more pain. It's really up to you on what you like to do. I did this because, its either try and deal with the pain or take a chance on no more pain.

sorry for reposting this - but with the internet - old info slides away.......<br />
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I have been surprised at the reluctance of people to try the capsaicin - as it is really a 'no-brainer' - in that you can't make the condition worse - and with luck it will cure it in about a week of treatment, (especially if the trigger areas are in the mouth (oral mucosa)). Obviously the medical fraternity (or some of the less ethical) don't like this. If the capsaicin doesn't work - then you have the resources of the medical world to turn to. Issues most of the people I've dealt with have - is 1) getting the stuff, 2) getting a suitable mouthguard made up, 3) they don't like chili and 4) they are dead scared of triggering an attack by using the treatment (in my experience, despite the fact that it does hurt - it doesn't trigger an attack - and as each successive treatment hurts less - so you know how you are progressing).<br />
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For a more detailed account - go to the blog in www.austrop.org.au.<br />
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IF I can find the time - I will try and get the treatment published in a reputable medical journa.<br />
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Cheers<br />
<br />

im crying now thinking of the times my husband has heard me cry myself to sleep,and i know he feels helpless.i hold his hand and think of better times,when we met inthe nightclub 20 years ago and i was pain free,i love my children and my husband,but if i was single,im not going to say it but you know what i would have done to end the pain,all TN suffrerers know what i mean,,,

Lydia what you wrote makes me want to cry so much because my mum suffers from this horrible pain. Hers started when she went to the dentists and they took a tooth out and since then her life changed for the worst. She has suffered from this pain for years now and only last year they diagnosed her with TN, she is going in for an operation and I really hope it works. I see her suffering everyday and she has lost so much weight because of it. She just sits there when the attacks happen but I know if we were not around she would have commited suicide because she explained to us the pain is like you are dying your heart stops. <br />
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People don't know what it is they just think it is a tooth problem but until you don't live with someone suffering from this pain others won't understand how it destroys a persons life. They can't do anything because they are afraid. My mum crys herself to sleep it is so horrible listening to that, you feel so powerless and wish you could do more. Lydia like you my mum trys to focus on controlling the pain and like you God will get her through this it will get all of you through this.<br />
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Everyone who is suffering from this I pray you all find some kind of a solution or some kind of relief from this pain.

I really appreciate sharing all the characteristics of this disease, at the main time my wife is suffering this type of illness, to all of you guys out there, please can anyone here share the names of the medication that being prescribed....or is their any other ways to care this illness in order to avoid the pain or any attack..severely...Thank you...

I really appreciate sharing all the characteristics of this disease, at the main time my wife is suffering this type of illness, to all of you guys out there, please can anyone here share the names of the medication that being prescribed....or is their any other ways to care this illness in order to avoid the pain or any attack..severely...Thank you...

I realized recently that heating my body through exercise (better) or even a hot tub makes the pain go away. I feel so happy to have an antidote. When the pain starts, I just go for a run. I'm posting this hoping it helps someone else.

I could not have said it any better. This disorder has turned my world upside down and I am trying to accept what I cannot change. Thank you for a great insight into your world.

someone like me....this is such a scary disease