Hi Everyone, I am new here. I have trigeminal neuropathy caused by a chemical exposure. I was diagnosed early last year and have been on the Gambit of meds . Now i am on Tegretol and a nasal spray lidocane and a few others.
Thanks Spyder
Hi Spyder,
What other treatments are you planning on trying? How have the meds helped or not helped?
Hope you aren’t having too much pain today!!
Hi Ally,
At first they thought that the pain was from allergies so they loaded me up with all kinds of allergy meds and different steroids then they gave me neurotin, This was bad,lol. I ended up wanting to fight at the drop of a hat.
I have gone to several ent’s and one neurosurgen(sorry for the spelling) with them all to tell me " We got nothing for ya" I am currently going to a pain clinic and my regular Neurologist .
When i was exposed Not only did i damage the Trigeminal nerve but the olfactory also. So i have alot going on.
I am currently taking Cymbalta, Tegretol and lunensta ( cant sleep). They just recently gave me the lidcane spray, which works for the sinus area but does nothing for the eyebrow up area and temple area. As we increase the Tegretol it seems to be taking the edge off the other areas .
We are talking about going to the Cleveland Clinic or the Mayo Clinic in Mn. In hopes they can help.
Thanks
Ugh, I hate the “we can’t do anything response” I know its best if they dont treat something they are uncomfortable with, but still. Sounds like you do have lots g0ing on. I contacted the Mayo clinic at one point and they told me no…good luck! What about a pain specialist? could you try a topical cream for the eyebrow area?
good luck!!
spyder said:
Hi Ally,
At first they thought that the pain was from allergies so they loaded me up with all kinds of allergy meds and different steroids then they gave me neurotin, This was bad,lol. I ended up wanting to fight at the drop of a hat.
I have gone to several ent’s and one neurosurgen(sorry for the spelling) with them all to tell me " We got nothing for ya" I am currently going to a pain clinic and my regular Neurologist .
When i was exposed Not only did i damage the Trigeminal nerve but the olfactory also. So i have alot going on.
I am currently taking Cymbalta, Tegretol and lunensta ( cant sleep). They just recently gave me the lidcane spray, which works for the sinus area but does nothing for the eyebrow up area and temple area. As we increase the Tegretol it seems to be taking the edge off the other areas .
We are talking about going to the Cleveland Clinic or the Mayo Clinic in Mn. In hopes they can help.
Thanks
Thats what worries me. We will go there and they will say the same thing but we have to try. I think because mine was a chemical injury , It sacres them. at this point any relief ,small or large , would help.
Ally Castellano said:
Ugh, I hate the “we can’t do anything response” I know its best if they dont treat something they are uncomfortable with, but still. Sounds like you do have lots g0ing on. I contacted the Mayo clinic at one point and they told me no…good luck! What about a pain specialist? could you try a topical cream for the eyebrow area?
good luck!!
spyder said:Hi Ally,
At first they thought that the pain was from allergies so they loaded me up with all kinds of allergy meds and different steroids then they gave me neurotin, This was bad,lol. I ended up wanting to fight at the drop of a hat.
I have gone to several ent’s and one neurosurgen(sorry for the spelling) with them all to tell me " We got nothing for ya" I am currently going to a pain clinic and my regular Neurologist .
When i was exposed Not only did i damage the Trigeminal nerve but the olfactory also. So i have alot going on.
I am currently taking Cymbalta, Tegretol and lunensta ( cant sleep). They just recently gave me the lidcane spray, which works for the sinus area but does nothing for the eyebrow up area and temple area. As we increase the Tegretol it seems to be taking the edge off the other areas .
We are talking about going to the Cleveland Clinic or the Mayo Clinic in Mn. In hopes they can help.
Thanks
Not to scare you, but I also contacted the Mayo clinic about my severe facial pain and they basically told me that they didn’t think they could help me. I thought about just going there as a walk in and seeing if they could do anything, but I decided not to. I hope you have some luck! Let us know!
spyder said:
Thats what worries me. We will go there and they will say the same thing but we have to try. I think because mine was a chemical injury , It sacres them. at this point any relief ,small or large , would help.
Ally Castellano said:Ugh, I hate the “we can’t do anything response” I know its best if they dont treat something they are uncomfortable with, but still. Sounds like you do have lots g0ing on. I contacted the Mayo clinic at one point and they told me no…good luck! What about a pain specialist? could you try a topical cream for the eyebrow area?
good luck!!
spyder said:Hi Ally,
At first they thought that the pain was from allergies so they loaded me up with all kinds of allergy meds and different steroids then they gave me neurotin, This was bad,lol. I ended up wanting to fight at the drop of a hat.
I have gone to several ent’s and one neurosurgen(sorry for the spelling) with them all to tell me " We got nothing for ya" I am currently going to a pain clinic and my regular Neurologist .
When i was exposed Not only did i damage the Trigeminal nerve but the olfactory also. So i have alot going on.
I am currently taking Cymbalta, Tegretol and lunensta ( cant sleep). They just recently gave me the lidcane spray, which works for the sinus area but does nothing for the eyebrow up area and temple area. As we increase the Tegretol it seems to be taking the edge off the other areas .
We are talking about going to the Cleveland Clinic or the Mayo Clinic in Mn. In hopes they can help.
Thanks
Thanks Katie,
I dont suspect they will say anything different, but i have to try. I am not sure anyone can really do much. I dont get my hopes up . I have had so meny Doctors in the past year in a half tell me “sorry” that I am used to it,lol. That way if they can , it will be a nice surprise. 
I’m wondering if I have trigeminal neuropathy as opposed to neuralgia due to my root canal. How can they determine a difference?
From what i understand and please correct me if i am wrong. Neuropathy is from a injury and neuralgia is from a unknown cause.
I know mine was caused by the chemicals i was exposed to. It effects both sides of my face and has Damaged my olfactory nerve also. Both ,I believe, are treated the same way except. MVD and gamma knife and the other surgeries will not work due to the type of injury.(atleast so far in my case)
The medication are the same.
robyn holder said:
I’m wondering if I have trigeminal neuropathy as opposed to neuralgia due to my root canal. How can they determine a difference?
You see that is my problem. No one wants to say that the root canal is the cause. All I know is that I did not have this prior to the root canal.
spyder said:
From what i understand and please correct me if i am wrong. Neuropathy is from a injury and neuralgia is from a unknown cause.
I know mine was caused by the chemicals i was exposed to. It effects both sides of my face and has Damaged my olfactory nerve also. Both ,I believe, are treated the same way except. MVD and gamma knife and the other surgeries will not work due to the type of injury.(atleast so far in my case)The medication are the same.
robyn holder said:
I’m wondering if I have trigeminal neuropathy as opposed to neuralgia due to my root canal. How can they determine a difference?
Robyn, I have been diagnosed with trigeminal neuropathy mine started after a root canal then they did another root canal on same tooth and then finally a 3rd root canal on same tooth, each time my pain got worse, now I am in dire pain all day everyday cannot talk or eat anything but liquids, I am wondering how you are doing?
Kathy