Well, after almost a year of my neurologist telling me that I did not have TN, he finally admitted that I MIGHT. By the way, my MRI turned out clear.
Even though I've suspected all along because of the info from this site, I still nearly fainted when he mentioned TN and brought out a picture of the trigeminal branches. He believes me when I tell him that my tooth pain and face/head pains are on both sides.
He mentioned Tegredol (sp) but said he'd like to wait a couple of months to see how I'm doing before he puts me on it because the pains I have are NOT constant and although they are painful, they are not so painful that I can't tolerate them--so far.
The teeth pain is so annoying and since I don't have meds, I've tried Lidocaine mouth rinse. It didn't help and seemed to make it a little worse; I don't know why. Any ideas of what else might work?
The doctor had me take a blood test for inflamation anywhere in the body yesterday.
Has anyone tried any over-the-counter meds like Advil for tooth/face pain? Any suggestions are appreciated.
I'm scared and didn't get any sleep last night. Wishing all of us a pain-free day.
I am so glad that you are at the diagnosis phase. For me it was a lot like hearing someone say that your not crazy!! My diagnosis took three years and three root canals!
I just wanted to comment on your neurologist’s reasoning for not putting you on Tegretol. According to Johns Hopkins Neurology, and my experience as a patient there, part of the diagnostic protocol for TN IS to put you on Tegretol, or some other drug in that class. If the teeth and face pain disappear, it is probably TN. TN is one of the only conditions,presenting with those symptoms, that responds to that type of medication.
Not a doctor, and yours might have a different plan in mind. Just wanted to share my understanding and experience as I related to your post. Keep fighting for the answers. So many dentists and doctors are really unfamiliar with this condition.
Good news, sort of! at least you have a diagnosis at last and you can start to move forward and try to get this under control. At the same time gutted that you have it, double edged sword i suppose. Relief as Stefanie says in that your not crazy. When it first started and I didnt know what it was i thought am i imagining this or just being a massive hypochondriac but then you get the confirmation and its wow im not making this up, and then it sinks and its gutted i have this, what do i do now? you have been dealing with this for a year already and are familiar with the site so you know whats going on already. hopefully they can get it under control and you can get some relief, all the best.
I am so glad that you are at the diagnosis phase. For me it was a lot like hearing someone say that your not crazy!! My diagnosis took three years and three root canals!
I just wanted to comment on your neurologist's reasoning for not putting you on Tegretol. According to Johns Hopkins Neurology, and my experience as a patient there, part of the diagnostic protocol for TN IS to put you on Tegretol, or some other drug in that class. If the teeth and face pain disappear, it is probably TN. TN is one of the only conditions,presenting with those symptoms, that responds to that type of medication.
Not a doctor, and yours might have a different plan in mind. Just wanted to share my understanding and experience as I related to your post. Keep fighting for the answers. So many dentists and doctors are really unfamiliar with this condition.
I have bilateral atypical tn in my teeth, tongue, jaw, cheeks and ears. I am alarmed that you have been dealing with this for so long with NO medication!
I agree with what Stefanie said about it being protocol to try those meds as a way of diagnosing TN. But anti-seizure meds don't always work for atn. Sometimes tricyclic anti-depressants work better.
As for pain killers-try them but unfortunately them don't usually tend to help, even really strong ones.
Are you on any medication for your pain? Or have you found anything that helps? There are little things can help a bit but quite honestly you need to be put on some medication. I have had my ups and downs with this and the pain is like nothing in the world! Sometimes heat can help--warm bath, hot water bottle, compresses. And other times cold helps--popsicles, milk shakes and smoothies. Everyone is different. Voltaren Emugel can help a bit when I message it around my jaw and cheek. Some people use Oragel.
I also find that stress and lack of sleep make the pain worse so it is a vicious cycle that just keeps getting worse.
Hi justjane, thanks for responding. It sounds like you are going through a rough time with this TN too. I have had pain in my tongue occasionally, but mostly my teeth. I've tried Oragel and Lidocaine mouth rinse along with Tylenol or Advil, but nothing really works.
What is Voltaren Emugel and where would I get it? Thanks for the suggestions you provided. I'm wishing all of us pain-free days and nights ahead.
Yeah I have had a rough time for sure. I am doing really well right now though. I still get flare ups but things have been pretty well controlled with Amitriptyline. A week ago I switched to Nortriptyline bc of side effects and so far so good :)
I put a link to some info on Voltaren. It is an anti-inflammatory gel. In Canada it can be bought over the counter. This only helped a wee wee bit. There are other creams out there. I wonder about Capsaicin Cream but it is made from chilli peppers so I'm not sure about putting that on my face! lol
Keep on fighting for treatment. No one should be in this pain if there is something out there that can help
Hi jane. I have used the 'hot pepper' capsacian cream,i use it in the form of 'dragon balm',thats what it is called in the Uk. It can help,sometimes i use the voltarol,and sometimes the dragon balm,one works sometimes,and the other doesnt,and vice versa. go on,give it a go,you may be suprised .Barb
hi jasmine,my pain is in my teeth,and my teeth almost feel like they are on ice,i constantly 'suck my gums',not a good idea as it becomes habitual,and makes any pain worse.I do get pain in the r/s face. My pain changes,but there is always a niggle in the teeth and jaw.I take nortriptyline,it worked wonders at first,but now have extreme dry mouth.I have cymbalta here to try but havent tried it yet as am on anti biotics ,so will wait. I havent had an official diagnosis,but after reading lots of posts about meds working 'only' on TN and ATN,then it has to be that i guess.
Jasmine said:
Hi justjane, thanks for responding. It sounds like you are going through a rough time with this TN too. I have had pain in my tongue occasionally, but mostly my teeth. I've tried Oragel and Lidocaine mouth rinse along with Tylenol or Advil, but nothing really works.
What is Voltaren Emugel and where would I get it? Thanks for the suggestions you provided. I'm wishing all of us pain-free days and nights ahead.
I suffer from extreme dry mouth as well. My friends always make fun of me because I always have a huge glass of water or green tea with me. I also use sugar free mints. I just got home from Africa on safari and those mints saved me. There is something about the sweetener they use that keeps my mouth moist.
I also take Cymbalta. As someone noted above, it does not take the pain away, but seems to dull my reaction to it if that makes sense.
Wow, an African safari, how exciting! I'm glad to see that you are living life to the fullest even with this dreaded TN! Good for you.
Stefanie (Rice) French said:
I suffer from extreme dry mouth as well. My friends always make fun of me because I always have a huge glass of water or green tea with me. I also use sugar free mints. I just got home from Africa on safari and those mints saved me. There is something about the sweetener they use that keeps my mouth moist.
I also take Cymbalta. As someone noted above, it does not take the pain away, but seems to dull my reaction to it if that makes sense.
Yeah, teeth pain really is nasty. It can sure ruin a good day! Thanks for your response. I wish you better days ahead.
barbara said:
hi jasmine,my pain is in my teeth,and my teeth almost feel like they are on ice,i constantly 'suck my gums',not a good idea as it becomes habitual,and makes any pain worse.I do get pain in the r/s face. My pain changes,but there is always a niggle in the teeth and jaw.I take nortriptyline,it worked wonders at first,but now have extreme dry mouth.I have cymbalta here to try but havent tried it yet as am on anti biotics ,so will wait. I havent had an official diagnosis,but after reading lots of posts about meds working 'only' on TN and ATN,then it has to be that i guess.
Jasmine said:
Hi justjane, thanks for responding. It sounds like you are going through a rough time with this TN too. I have had pain in my tongue occasionally, but mostly my teeth. I've tried Oragel and Lidocaine mouth rinse along with Tylenol or Advil, but nothing really works.
What is Voltaren Emugel and where would I get it? Thanks for the suggestions you provided. I'm wishing all of us pain-free days and nights ahead.