Dear all - first time here - please hear my symptoms and case -

General General TN & GPN (Old Site)
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hello all- would glad to hear you opinions - (sorry in advanced for my english).

i am a 34 yo guy... i was totally healthy about 1.5 years ago .

about a year and 7 month ago - i went to do a dental cleaning - which i felt uncomportable in my mouth afterwards - but nothing really bad.

then -i've done some dental fillings and than a "deep" dental filling on tooth no 37 (lower left side). after that - it all strated - amazing pain - that lasted till that day.

i insisted to have a root canal on that tooth - it didn't help.

the pain is also in the ear, throat on one side. there are areas in the GUMS that if only touched - makes the pain worse. sometimes i can even CLOSE my mouth... i go with a night-gurad (that's the word?) - and put it even during day time...

my upper mouth burns.. and the gums.. and teeth.

since than - pain pain all the time. went to a LOT of doctors (at least 50 doctors - in all fields) - i got lyrica (high doses) , and Elatrol

for 1.5 year - i fought - and wanted to find the cause for it and cure it. nobody can live with that constant pain 24/7 . nobody.

i was to several pain clinics. got injections.. radiofrequency - didn't help.

my MRI is ok . so i guess i'm not a canidate to ANY surgical procedures.

as for meds - i admit - i didn't try them ALL . i admit. "only" tried LYRICA and amitriptyline×¥

i slept better , but they didn't really do much for the pain.

maybe i "must" go back to meds. but i dread all those meds. they make the body feel uncomportable. i have bad memories from the meds.

a nightmare... i can't even write correctly... my brain is like on fire from bieng in this hellish situation.... if someone would offer me to end it all - i would take it - each way it will be

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Please read our "Face Pain Info" tab on the menu above. You appear not to have been tried on any of the anti-convulsive drugs (Tegretol, Trileptal, Neurontin, Baclofen), and you probably should have been. Given the circumstances surrounding first emergence of your pain, it is likely that you are dealing with what is called "iatrogenic trigeminal neuropathic pain" (e.g. caused by medical/dental treatment).

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Hi Nir, I left a comment for you on your page. :)

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thank you both.. i'll be happy to learn and hear more ... i feel like on the beginning of the road

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hi crystal - thanks ! i didn't even knew i've HAD a page :) i'llc check. i'm new to these all sites

crystalv said:

Hi Nir, I left a comment for you on your page. :)

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Nir

If you look at the top of the page to the black header you will see "MY PAGE" but I guess if you can read this you know that! Just trying to help J x

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hi all... i'm very new here.. .i didn't even knew i had a page... i'll try to look for it now.

GOD - i see black now in my eyes from all the pain and situation.

i have an appointemnt tommorow to remove the wisdom tooth - althout my doctors say it won't solve the problem (they do not want to take out the "problematic" tooth that started it all ) - they only willing to take the wisdom tooth- again - although there is no reason too . i'm very afraid - but even if there is a 1% chance it will solve the pain... maybe it should be worth it - instead of living 20 years with constant pain and wondering "what if"...

by the way - i've heard plenty of stories of people "removing" tooth after tooth and stilll with the pain.

but i've heard, personnally 3 stories at least of people who were in hellish pains, the doctors told them "it's mental" - and after many month - they discovered it was an infection in the tooth - the tooth was treated - and the pesons were completly healthy again.

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If you look in the subgroup "TN and Dental" you can find some good advice on dental procedures. All the best for tomorrow and come back to us about this.

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I hope all goes well for you tomorrow! :) Min

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thanks.. i'm not sure if i'll do it... really afraid....

fantasize about removing tooth for 1.5 year... but as a rational person also nows it probobaly won't help , and god forbide - that it won't increase the pain. don't know what will happen tomorrow.

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can you get out and function like this. my symptoms are similar. nothiing works. heading to hopkins.

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hello Nir

Don't give up yet. Did you try acupuncture? Also, vitamin B and foic acid helps to heal nerves. I have had this for 16 years, and many people have long periods of no pain or less pain, so you might not be suffering all the time in the future. I am sorry for your pain. Nerve pain is the hardest to have. In tabs accross the top of the website, go to "forum/discussions" and in the search box type "natural remedies" and discussions will show that have Chinese medicine remedies, Indian medicine remedies, and things you can do at home to lessen the pain a bit. None are a cure, but many seem to help make the pain more bearable. Welcome to the website. Also you can read the tab "Face Pain Info". There are many good topics in there that help us.

Best wishes, Sheila

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Hello, Nir.

It seems to me that our symptoms are very much alike. Two statements you made hit very close to home as far as what I feel on a day to day basis.

1) "the pain is also in the ear, throat on one side. there are areas in the GUMS that if only touched - makes the pain worse. sometimes i can even CLOSE my mouth..." .

2) "my upper mouth burns.. and the gums.. and teeth."

It has taken me 8 years to get to where you are in 1.5 years. Maybe, the difference lies in the fact that whatever causes my pain was not pinpointed as being caused by a dental procedure, or any other specific trauma.

You also say, "i fought - and wanted to find the cause for it and cure it. nobody can live with that constant pain 24/7 . nobody." and also "my brain is like on fire from bieng in this hellish situation."

Recently, my condition has worsened to the point that merely speaking triggers flare-ups which last for hours. Like you, I'm looking for answers, and have been for years now.

For quite a long time, opoid medication helped me to live a more normal life. Recently, no doctor will prescribe anything strong enough to help me with the levels of pain I am now experiencing, so I live in almost 24/7 pain.

Red knows about facial pain and all of it's many distinctions inside and out. He's somewhat of a specialist, not a doctor, but the most knowledgeable person I know on the subject. I think his advice to you is sound.

I've already tried most of the medications he has listed, but if you have not tried anti-convulsive drugs, you should give it a try.

I've tried almost everything I know of and am now wondering about Motor Cortex Stimulation (implants).

Being in the same boat, I have no useful information for you, as I am on the same slippery slope as of late. However, I had to respond to your post, if for no other reason but to tell you that you are not alone. It can feel hellish. It sounds to me as if you have many Type II symptoms, regardless of how it was caused. The reason for your pain allows Red to further categorize your condition as "iatrogenic trigeminal neuropathic pain", but if you have not joined our TN Type II group, I would like to see you join. Although I started the group, I learn a lot from being a member.

As a spiritual person, and a sister to you in pain, I will be remembering you in prayer. We may be of different beliefs. I don't know. But, since the healthcare system is currently failing me, I've turned to my God for comfort. My children also help get me through. I relate so much with what you say. The pain your feeling in your mouth breaks my heart, because I suffer with the same symptoms and it's maddening, no doubt.

Just let this letter serve as one of kinsmanship and support.

Remember, one day at a time . . .one at a time, friend.

Your friend,

Stef

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im sorry that you have worsened. I wwould like to join you and all other members, especially when so many of us live with the frustration of not having answers or ways to relieve the pain.

i do know my worst trigger the cheek and it has worsened. i do now that its on the supra orbital nerve and thats why my eye tooth hurts. soon to be pulled with others.

my right side, and i always blame the scar tissue there as the cause but maybe i am not correct. Its my starting point and the neck area that brings me there.

Latelty the Temple and cheek seem to start a nerve path spiraling down. I really hate the cold.I would not wish this on my enemy.

Since I am able to travel searching for answers, I promise I will post anything new.

Hoping you and everyone else feels even a little better.

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i am sorry that you are in such pain. i dont know if you have tried narcotics, i am using the fentanyl patch and more and im still searching. you are in the right place and everyone tries their best to help. glad you have joined.

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Medicines like codeine, morphine (opiates) seem to be the most effective pain control for this. After your body adjusts to them for a few days, there are few to no side affects. I couldn't bear the side affects of tegretol, neurontin, etc. Within 3 dys, they caused liver damage, so the Dr. took me off of them. Glad he did.

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may i ask your dose,

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Elaine, I'd rather not say in public. The dose is also to control pain from a number of other conditions. But I can tell you the doc gave me 10 mg. (the weakest) long acting capsules so I can take a small amount on good days, and a higher amount on bad days, so I don't get tolerant to it. I take between 10% and 30% of the dosage the Dr. prescribed. The 12 hour capsules are great. The 12 hour pills often don't dissolve so your pain is there even when you tok the meds.

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dear Elaine - no - can't function... i'm like a zombie.. i can't imagine that i even live... just go minute by minute

elaine48 said:

can you get out and function like this. my symptoms are similar. nothiing works. heading to hopkins.

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i must say - for me it is otherwise - i was twicwe to the ER and got morphine shots - that did n o t h i n g . the eased the pain in all my body EXCEPT the tooth - it was terrible...

but each is diffrent.

thanks.



Sheila said:

Elaine, I'd rather not say in public. The dose is also to control pain from a number of other conditions. But I can tell you the doc gave me 10 mg. (the weakest) long acting capsules so I can take a small amount on good days, and a higher amount on bad days, so I don't get tolerant to it. I take between 10% and 30% of the dosage the Dr. prescribed. The 12 hour capsules are great. The 12 hour pills often don't dissolve so your pain is there even when you tok the meds.