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

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Permalink Reply by Richard A. "Red" Lawhern on February 10, 2012 at 1:09pm

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). 

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, Living With TN

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Permalink Reply by crystalv on February 10, 2012 at 7:20pm

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

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Permalink Reply by Nir Morita on February 11, 2012 at 4:44am

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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Permalink Reply by Nir Morita on February 11, 2012 at 4:44am

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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Permalink Reply by Jackie on February 11, 2012 at 4:58am

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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Permalink Reply by Nir Morita on February 11, 2012 at 8:56am

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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Permalink Reply by Jackie on February 11, 2012 at 10:52am

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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Permalink Reply by Min on February 11, 2012 at 10:58am

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

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Permalink Reply by Nir Morita on February 11, 2012 at 11:50am

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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Permalink Reply by elaine48 on February 11, 2012 at 11:58am

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

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Permalink Reply by Sheila W. on February 11, 2012 at 12:21pm

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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Permalink Reply by Stef on February 11, 2012 at 3:26pm

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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