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

General General TN & GPN (Old Site)
21

dear Cleo -

mine also was said to be cause maybe by the njection - but how can one be sure >

Cleo said:

I have trigeminal nerve damage caused by an anesthetic injection. It is considered iatrogenic but i never had a doctor use that actual term. In my case the needle pierced my jaw bone and crushed my nerve. dysesthesia - hyperaesthesia is the actual type of nerve pain my last doctor gave me for a crushed lingual nerve. I think constant unrelenting nerve pain usually means the damage is worse vs occasional flair ups in these cases. Iatrogenic can also mean a nerve severed by drill during an extraction or damaged by overfill during root canal or a simple filling including displaced implants....

22

hi stef... i've read every word .

thank you so much.

i'm so tired and in pain to answer.

but just wanted to tell you thank you. i've read it all.

thank . you

this site do much confuses me...i'll try to join the TN II group....

by the way... you said :

"no doctor will prescribe anything strong enough to help me with the levels of pain "

did you think of medical marijuana ? i am not a smoker - and i hate the idea (really really do. and tried it - my pain doctor here prescribed it to me - and i think it has made my pain worse - BUT - maybe for you it can help ?


thank you for the answer,

you touched me,

nir


Stef said:

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

23

can you get out of the house with all of this pain? my greatest wish. our conditions are very different. can we speak privately? red has ny number.

Nir Morita said:

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.

24

Nir I'm so sorry that even the morphine did nothing. You might ask your Dr. about trying a combination of 2 anti-seizure meds and a muscle relaxant, and if those take care of part of the pain, maybe weaker opiates would help with the rest of the pain. I have heard such good things about Oxcarbamazapine, brand name is Trileptal in n. America. Not sure what it would be in Singapore.

25

dear all - thank you all so much... this side is a bit confusing to me... i try to reply to each.. but im' not sure i reply to the right place.. so please understand...

26

dear Shiela...

many thanks ..

and - by the way - i'm not from Sinfgapore :) from Israel !! :)

and about all the meds.. you are right.. .but i so much afraid starting new adventures with more meds... the last time with the Lyrica and Elatrol... the withrawl side effects were horrible. on the other hand ..pain all the time is horrible ...

about Trileptal - i've heard good things also - i first heard it's like Tegretol - but with less side effect - but now i read it's not the same "family" as tegratol... so i don't now... anyway many thanks.



Sheila W. said:

Nir I'm so sorry that even the morphine did nothing. You might ask your Dr. about trying a combination of 2 anti-seizure meds and a muscle relaxant, and if those take care of part of the pain, maybe weaker opiates would help with the rest of the pain. I have heard such good things about Oxcarbamazapine, brand name is Trileptal in n. America. Not sure what it would be in Singapore.

27

Nir there was a discussion recently on Trileptal/Oxcarbamazapine (known by both names) on the board if you want to look it up by the search engine on the top right. I wish you well my friend

28

Oh sorry Nir!

Just a few minutes before I talked to you, I was talking to a person from Singapore and that place was still stuck in my mind. I had a head injury a few days ago, and my brain is not working well. It's becoming very embarrassing. Trileptal is an anti-seizure medicine lilke Tegretol, and they contain almost the same chemical, carbamazapine, but they added an oxygen molecule to it, hence, oxcarbamazapine, which makes it have fewer side effects.

Kind regards,

Sheila

29

hi nir,

please refrain from any more destructive procedure like radiofrequency. if your nerve is damaged because of the dental filling, procedures designed to injure the nerve will only make the pain worse.

there are two doctors in israel, both of whom are very well versed in trigeminal neuropathic pain. i am going to private message you their contact information.

vesper

30

Vesper, you are right about those doctors. The most information I ever learned about TN, before this group was formed, was from interviews on Youtube from those Israeli doctors. They seemed to know more than anyone else at the time. I just found them by typing "trigeminal neuralgia treatments" in the search box at youtube.

31

ae all of us who are atypical trapped, so to speak. im not even sure abbout recconstuctive surgery as an option. it is a hoid feeling and i would tavel in a heatbeat for any help.

Sheila W. said:

Vesper, you are right about those doctors. The most information I ever learned about TN, before this group was formed, was from interviews on Youtube from those Israeli doctors. They seemed to know more than anyone else at the time. I just found them by typing "trigeminal neuralgia treatments" in the search box at youtube.

32

Elaine, I don't think a surgeon would touch you, because more surgery means MORE scar tissue. There isn't a surgery to help atypical, but I say never give up, beccause tere are so many different meds (anti-seizure meds, muscle relaxants, anxiety drugs that settlr nerve reaction, painkillers) and so many different combinations of them, different dosages. You just have to be diligent in trying them, then telling the doc to please try some other combination or different dosage, until you find what's right for you. There are also natural remedies that help with the pain but may not heal the problem. I know its exhausting, but you need that hope that your remedy will be found, and that you can help do something about it. Have you tried sublingual vitamin B with folic acid? Everyone with nerve pain should be on that. It heals damaged nerves. Sublingual means under the tongue. You can get dissolving tablets or liquid. They sink into your blood stream through the large veins under the tongue, rather than being destroyed by your stomach acid when people take vitamin B pills. It's something you can do in addition to other remedies you try.

Blessings, Sheila

33

Nir, I just wanted to say that it is important to get good pain control. It can feed upon itself making it worse as time goes on. Also causing depression as well. I want things to get better for you I really do. Maybe you can go to a different doctor who can take a different approach. I am taking Trileptal and have been on it for a month now. It is working well for me. I also take Topamax and Effexor. I have taken Tegretol Lyrica Neurontin Baclofen Cymbalta, I think that's it. I have to say that the Trileptal for me is the best as far as not making me LOOPY. I know this is scary for you and hard to accept. I have had this for seven years now. I still have my moments when I am blue. Thank goodness for Effexor!! I won't let it win.This is my life. Best wishes to you. Sincerely. Min

34

you have a great attitude, if i could regain some of the things wrong, id be elated. what scaes me if, what if i dont. the doctors dont agree and some things can t be proven. this is a tough one.

if only i could prove the vagus nerve.

35

i appreciate your thoughtful nesss, but in 8 yeas i have tried just about anything.

Sheila W. said:

about everythingElaine, I don't think a surgeon would touch you, because more surgery means MORE scar tissue. There isn't a surgery to help atypical, but I say never give up, beccause tere are so many different meds (anti-seizure meds, muscle relaxants, anxiety drugs that settlr nerve reaction, painkillers) and so many different combinations of them, different dosages. You just have to be diligent in trying them, then telling the doc to please try some other combination or different dosage, until you find what's right for you. There are also natural remedies that help with the pain but may not heal the problem. I know its exhausting, but you need that hope that your remedy will be found, and that you can help do something about it. Have you tried sublingual vitamin B with folic acid? Everyone with nerve pain should be on that. It heals damaged nerves. Sublingual means under the tongue. You can get dissolving tablets or liquid. They sink into your blood stream through the large veins under the tongue, rather than being destroyed by your stomach acid when people take vitamin B pills. It's something you can do in addition to other remedies you try.

Blessings, Sheila

36

i feel like i m existing not living. even if you remove the pain the tightness needs to be addressed. the adhesions are the issue, sleeping most of the time and being stuck at home isnt enough. i dont think this is living and the tunnel looks bleak. I love all of you but i miss too much of the world. it becomes too hard with so many obstacles. If none of this can be repaired, I may be to broken.