Pretty sure i have type 2 TN PLEASE help me diagnose

1

For the past 4 years i have been suffering from UNBEARABLE constant face pain usually burning pain sometimes toothache but always constant without one second of relief. I have been threw many doctors who believed at the beginning that it was TMJ but after i'm sure its not that i just keep burning and burning all day long. Finally after years went to a few neurologists who said it was atypical face pain and didn't believe me in how much pain i really am. I am writing here so you can perhaps look at my case and say your opinion, i'm really convinced it's TN type 2.

So this is what happened: basically I started SINGING. I SANG and while i did that i pushed really really hard with all my face muscles i can while trying to hit some notes, i felt i was hurting myself but did it anyway. I started to feel really stiff in a lot of parts of my face on both sides. including: the temples. cheeks, outside muscles of the face and under the chin. All these places got really really stiff and by the time i stopped hurting myself they were already stuck in this way and i began feeling UNBEARABLE burning sensations all over my face, pretty much like my face is in an oven. Every time i open my mouth/talk/smile/sing it makes the pain worse but after i get some rest it goes back to whatever it was before, still UNBEARABLE burning pain but less, also felt severe pulsing in the temple area. I'VE been having this pretty much for 4 years now and when i read about type 2 tn I immediately suspected that this is what i have and maybe i can finally get some answers. I also feel like the stiff places are swollen and i can feel it and even SEE it.

Would love to get some opinions here,

Thanks,

Noam

2


Your described pain has many of the features of Type 2 Trigeminal Neuralgia or some form of trigeminal neuropathic pain. Did you have any form of dental work just prior to the emergence of the pain? Any facial trauma? What medications have you been tried on, Noam? With this type of face pain, the most likely to help you are in the family of tricyclic antidepressant drugs -- which have a cross action on neuropathic pain. Those meds include Amitriptyline and Nortriptyline, among 8-10 others.

Regards, Red

3

Hi Naom

I can relate to your pain, I have atypical TN, my pain is constant and my symptoms are that my face feels stiff and heavy, like it is made out of iron, I have pulsing, throbbing, burning, it feels like the muscles in my face are constantly moving though you can't see it, often like toothache, squeezing, poking sensations, like I have been hit in the face really hard. Do you feel any of these too? I can definitely relate to the severity of pain you are in, it truly is unbearable and I am so sorry you are in this amount of pain. I also have systemic lupus disease.

The good news is that there is a light at the end of the very dark tunnel you are in and you have come to the right place. There are lots different treatments to can try. As Red says amitriptylene may help, I am taking Lyrica, tramadol and amitriptylene and it has worked for me, I now have my life back. Hang on in there Naom, help is on it's way. Sandi X

4

Hello and thank you for responding.

Sorry for my bad English.

I think that i am a very special Atypical TN case.

I think that i kind of had a facial trauma, like I said i somehow by a very long period of singing managed by trying to sing too hard and stretching my face muscles, to make them get REALLY REALLY stiff. This includes muscles from inside the mouth, under the chin, both of my cheeks and temples and muscles from the outside of the face. They just got stuck like this and i had all my symptoms exactly in those areas and didnt know how to make them go away for years.

Richard,

I have had a lot of other symptoms too but most defanetly this way by far the worst, basicly my face was burning on both sides all day long. I think the stiff muscles are pressing on the nerves constantely and that's where the pain come from. Haven't tried a lot of meds just Elatrol and Advil and a couple more i cant remember. Cold water helps the pain, the burning usually goes away but comes back a a diffrent pain more like a crushing exploding pain. I did have some dental work when i was 15 but the pain emerged only and exactly when i started the singing and the stiffness came so i dont think it has anything to do with it.

Thanks for the info the opinion and the info on the meds.

Sandi,

My face also feels REALLY stiff, my pain feels also throbbing,pulsing and almost always burnin. Pulsing usually in my temple area but sometimes also in the face.Sometimes i do get a tootache pain also but usually not, for me its more like my whole face is on fire, and the temple area is the worst. Usually the pain gets worst at night and when im in how places. Even more interesting is that i can go into a hot room with no aircondition and immediately the pain goes up by tons and when i get out of the room it goes back close to where it was.

Thank you for caring so much and trying to help my righaway.

Noam

5

Hi Naom

My face feels like it is being crushed too, especially in my forehead. In the beginning I tried applying warmth to my face but this just made it worse. Then I tried cold and this worked well, I would keep cold jars in the fridge and press them against my face. Perhaps your pain is responding to warmth like mine. Your English is very good by the way! Sandi x

Noam said:

Hello and thank you for responding.

Sorry for my bad English.

I think that i am a very special Atypical TN case.

I think that i kind of had a facial trauma, like I said i somehow by a very long period of singing managed by trying to sing too hard and stretching my face muscles, to make them get REALLY REALLY stiff. This includes muscles from inside the mouth, under the chin, both of my cheeks and temples and muscles from the outside of the face. They just got stuck like this and i had all my symptoms exactly in those areas and didnt know how to make them go away for years.

Richard,

I have had a lot of other symptoms too but most defanetly this way by far the worst, basicly my face was burning on both sides all day long. I think the stiff muscles are pressing on the nerves constantely and that's where the pain come from. Haven't tried a lot of meds just Elatrol and Advil and a couple more i cant remember. Cold water helps the pain, the burning usually goes away but comes back a a diffrent pain more like a crushing exploding pain. I did have some dental work when i was 15 but the pain emerged only and exactly when i started the singing and the stiffness came so i dont think it has anything to do with it.

Thanks for the info the opinion and the info on the meds.

Sandi,

My face also feels REALLY stiff, my pain feels also throbbing,pulsing and almost always burnin. Pulsing usually in my temple area but sometimes also in the face.Sometimes i do get a tootache pain also but usually not, for me its more like my whole face is on fire, and the temple area is the worst. Usually the pain gets worst at night and when im in how places. Even more interesting is that i can go into a hot room with no aircondition and immediately the pain goes up by tons and when i get out of the room it goes back close to where it was.

Thank you for caring so much and trying to help my righaway.

Noam

6

נועם היי, קוראים לי רוית ואני סובלת מכאב נוירופטי שנובע מפגיעה מטיפול שיניים, והכאב שלי הוא שריפה 24/7 באזור השן המטופלת כבר כמה שנים טובות, הכאב שלך באמת נשמע כמו כאב פנים אטיפיקלי.... אני מציעה לך לדבר עם הרופא שלך על סימבלטה או נוטרילן, אלה כאבים שאדוויל לא מספיק להם ולא יודעת אם יש כדור שמספיק להם בכלל. האמת שאם הכאבים שלך נובעים משרירים שלוחצים על עצב, טיפולי סוטוקס לכאב היו יכולים לעזור לך, אני רק לא יודעת כמה יש פה בוטוקס לכאב בארץ....תקרא קצת בתיבת חיפוש על בוטוקס, יש איזה מישהי שזכור לי שהשרירים לוחצים לה על העצבים לפי הרופאה שלה ובוטקס מקל עליה...שוב הטיפולים בחו"ל. תעשה אמ אר איי, פרוטוקול טריגמינל נרב, כדי לראות אם לוחץ לך איזשהו כלי דם על שני העצבים שלך מימין ומשמאל. אולי גלי רדיו יכולים לעזור לא יודעת זו אלטרנטיבה שכדאי להתייעץ לגביה עם מרפאות לשיכוך כאב בבתי החולים בארץ. או בלוקים עם סטרואידים ולידוקאין, שוב השאלה כמה בלוקים מוכנים לתת לך, סטירואידים זה לא דבר שמזריקים על בסיס יומי. אתה לא הראשון ולא האחרון שקיבל אבחנה ראשונית של טי אמ ג'יי, הם אומרים את זה לכולם בהתחלה...טוב יש הרבה לבדוק ולעכל ותאמין לי צריך להתעדכן וללמוד כאילו לקחת עכשיו איזה קורס באוניברסיטה כדי להבין, כי יש הרבה בורות אצל רופאים. אתה בטוח שלא היה לך אולי איזה הרפס לפני, איזה וירוס ויראלי או זיהום קצת לפני, כמה חודשים לפני? שיכל לפגוע לך בעצבים? כי למען האמת משירה? על כזה עוד לא שמענו

תרגיש טוב רוית

7

yes of course, i just wanted to deliver the answer very quickly, and it is things you all know of, but sure you are correct very much. it should be transparent

Hi Noam, my name is Ravit, i suffer from 24/7 burning pain, in the area of a tooth i did a dental procedure on. I think your pain indeed is atypical, I offer to you, to talk to your doctor about Cymbalta or nortriptyline (notrilan), advil is far from being enough, if there is something enough...

If you have spasms or muscles problem, check here in the search box - Botox, it seems to help people with spasms, i read of some women here that it helped greatly. But i don't know if we are so advance in owr country with Botox for pain, so check it.

Demand MRI - trigeminal protocol, to see maybe there is a compression on both sides, to do MVD surgery

There is some other options like Radio Frequency, nerve blocks with corticosteroides and lidocaine, go to a pain clinic. You are not the first and not the last that doctors seems to initially suspect with TMJ, i heard of that so much before, and experienced it.

You have a lot to learn and grasp... Believe me it's becoming to me, just like i took some big course in the university, and you should understand what you are dealing with, cause unfortunately there is a lot of ignorance among doctors. Are you sure you havent had some viral or infection disease, just before that, even mounths ago, cause tell you the truth, singing?!? it's a first

(private talking in messages between me and Noam) Since than we talked a little bit, and Noam told me he came here just to try to understand the horror that he felt from that sensations, which was in the past, it seems that he got better with physical therapy, working on is face

Ravit

8

Thank you Ravit. Your courtesy is appreciated. For Noam, I would add that I believe Ravit is correct in observing that TMJ is very often diagnosed for almost any kind of face pain. In my personal opinion, too many dentists have a financial self-interest in treating TMJ, so they don't look as closely as hey should for signs that face pain is neurological in origin rather than structural. We learned quite a lot along those lines, from a demographic study of our membership early this year. Among 1900+ members, we found 645+ records in our database that indicated a dentist was the first medical practitioner seen. In fewer than a quarter of those records, did the patient indicate that the dentist both recognized that the pain wasn't dental, AND referred them to a neurologist. That level of dentist training is candidly awful. There is great need for better training.

Regards and best,

Red

9

Thank you all for the help.

Any more opinions anyone? I would really like to know for sure it's ATN

10

I have tried amitriptylene and it does help, doesn't take away the pain completely but makes it less intense.

Does this mean that it is in fact ATN?

11

I think only a face pain specialist, OR a pain management specialist,neurologist, or other physician WITH EXPERIENCE in treating types of facial pain can make a definitive diagnosis. having said that, it certainly sounds consistent with neuropathic pain.

12

My story is different, but two neuros, a gp and a pain specialist all said TN 2. Then I went to an ENT and he said TMJ. I have ear pain and he didn’t even look in my ear! The ENT was the weirdest fella and I suspect he was afraid I would sue one of my dentists and didn’t want to truly listen to my story. Have you been to a neurO? For what it’s worth, I lean toward TN 2 and my prayers are with u. Keep looking for a good doc and avoid speaking negatively about other docs or even mentioning other dx s. hang in there.

13

Hello everyone after years of being in unbearable pain and many more other symptoms I have finally managed to find the problem and it is in fact because my case is VERY special possible to solve. In a few months or weeks i am going to be pain free and then I will write my exact story. From what it seems it was ATN and many other stuff too.

14

from what I’ve learned, the distinction b/w TN2 (ATN) & neuropathic pain is hard to determine. i believe it’s based on whether they think the nerve pain is due to actual nerve damage. so Nomad could certainly be correct. good point.

15

Mrl. You reminded me that recently one doc said “neuropathic pain” and not ATN. I didn’t start with pain, but a dental procedure seem to start it. What seems to be the diff between ATN and neuropathic facial pain??? Btw, can’t wait to read the rest of your story NOAM!

16

from my understanding, neuropathic pain is from a damaged nerve; ATN is the nerve/brain responding inappropriately by sending pain signals.

17

MRL, your understanding is basically on target, though there are ambiguities in what we know in medical science.

It is conceivable that ATN actually "is" some variety of neuropathic pain due to nerve damage. But if that is true, we still don't understand the mechanism by which this damage occurs or have a reliable diagnostic tool for making this diagnosis. Neuropathic pain can almost always be traced to a discrete event or cause or mechanism, whereas the dominant characteristic of ATN is that it is "ideopathic" (e.g. without outward explanation).

For purposes of treatment, the same meds are used on the two. But when nerve damage is verified and discrete, very few neurosurgeons will attempt MVD or other surgeries, out of concern for adding damage to an already damaged nerve. In the case of ATN, the resistance is less solid -- and there are some papers which appear to demonstrate a degree of success for MVD against ATN.

I hope this clarifies somewhat a very cloudy set of issues...

Regards, Red

18

thanks for the nice clarification, Red. was hoping you’d weigh in :slight_smile: