[Mike H]

Hi everyone-

Here are the bullet points-

* Pain started about five months ago.
*Stabbing pain behind the eye followed by dull aches in temple and jaw.
* Visited emergency room, got cat scan, was told by ER doc pain was from new reading glasses.
* Saw Optometrist, no growths behind eye, was cleared
* Visited emergency room again, CAT SCAN was preformed, came back negative, was referred to a neurologist.
*Neurologist diagnosed me with stress headaches, was prescribed tramadol. It did nothing.

*Visited TMJ Specialist Dentist. He diagnosed me with pre-trigeminal neuralgia. He prescribed Tegretol. Tergretol took away 99% of pain.

*Had MRI with and without contrast, all came back clear.

*Saw new neurologist, confirmed diagnosis of pre-trigeminal neuralgia.

* I am am insisting on knowing how I got this.

*Currently awaiting a CTA scan on friday.

* I have become completely depressed and convinced that I am going to die from this.

*Please help me.

[EE03]

Originally Posted by Mike H

Hi everyone-

Here are the bullet points-

* Pain started about five months ago.
*Stabbing pain behind the eye followed by dull aches in temple and jaw.
* Visited emergency room, got cat scan, was told by ER doc pain was from new reading glasses.
* Saw Optometrist, no growths behind eye, was cleared
* Visited emergency room again, CAT SCAN was preformed, came back negative, was referred to a neurologist.
*Neurologist diagnosed me with stress headaches, was prescribed tramadol. It did nothing.

*Visited TMJ Specialist Dentist. He diagnosed me with pre-trigeminal neuralgia. He prescribed Tegretol. Tergretol took away 99% of pain.

*Had MRI with and without contrast, all came back clear.

*Saw new neurologist, confirmed diagnosis of pre-trigeminal neuralgia.

* I am am insisting on knowing how I got this.

*Currently awaiting a CTA scan on friday.

* I have become completely depressed and convinced that I am going to die from this.

*Please help me.

You won't die from this so rest easy on that note. If you haven't already done so, read through the stickies at the top of the thread. There is a lot of valuable informtion in there and a lot of good links to sites with reliable information. Personally, I haven't heard of a "pre-TN" diagnosis, but that doesn't mean anything since I'm not a medical type of person. On the plus side, at least you've gotten a diagnosis right away(early on) since it took me years to get one and I underwent a lot of useless treatment including antibiotics, steroids, and multiple scans. We all struggle with not knowing why we get this condition and the medical professionals can't tell us why we get it, so I appreciate your frustration, but you probably won't get an answer. A positive response to tegretol also indicates that the pain you're experiencing is nerve related and that helps the doctors make the diagnosis. As for the depression, we've all been there. You need time to accept the diagnosis and all that comes with it. Consider ordering a copy of the book "Striking Back" that is sold by the Trigeminal Neuralgia Asso(TNA). and I think its also available through Amazon. If you browse the threads on this board, you'll see a lot of people mentioning it and its full of great information regarding all aspects of this condition. The TNA's website is full of great information also and its another place to start getting more information. While its hard to find other people who know the pain of this condition, you're not alone on this board. There are support groups sponsored by the TNA so be sure to check and see if there are any in your area when you visit their website. I'm sure others will post their thoughts when they see your post. Take care and get information. EE

[Burntmarshmallow]

I have to second that..you wont die from this . . . and too unless your like me and have had you lower jaw snapped in half ..you will most likely never know how you got this. not many do know how they got T.N. or bi lat or atypical.

I have heard of Pre T.N and know of others with that DX . meds seem to pretty much take all the pain away and it is controlled fairly well with Teg or neurotin .. or another type of anti seizure meds . so best idea is to stick with the med your on as it is helping you take the pain away.
T.N. can come from MANY things a sinus infection ..damage to the nerve ie auto accident like me or dental work where the nerve was aggravated or damaged, can get this from having a bout of shingle even , gosh the reason how we got t.n. is very hard to find . with few exceptions such as auot accident or something like that.
do not work yourself up into a huge depressive fog okay. just relax a bit. I think you are lucky in a few ways as you have gotten dx already and have found a med that is working great for you. you have no idea how MANY MANY others go year after year praying and hoping to get a correct diagnose... after having lots of mouth / teeth work done .. spending to much $$$ only to find out much later it was not teeth and they did not need any pulled out or root canals etc...
All the things EE03 mentioned about the Striking Back book and the stickies up top is the best advice. knowledge is power so keep getting info and keep posting and asking questions. we are here to help and support... things are gonna be okay really just take things one step at a time. and I have to ask .. even if you do figure out how you got pre t.n. ... is that going to make it go away???? nope.!! so dont fret okay it is more important that you found all of us here and that you are on a med that is helping you. try to look at it that way okay?? yup it is not so fun learning you have it but ya gotta find the good in it too. Hope you feel better in body , mind and in spirit and too that you have a low pain great weekend. let us know if you have questions or just wanna vent or talk. we are here and we understand what most other non
t.n-ers dont. plus we care tons .

PEACE
BMW

[sadie324]

mike h,

I feel like we have very similar stories and I felt just like you did, like I was going to die. I'll post my story on here its kinda long but basically its how i got to find out that i had TN & we seem to have similar stories in that it was taking forever to get diagnosed ...

If your like me it took three years to finally be diagnosed and begin some form of a treatment (that didn't work until I gave in to do the brain surgery)... Here's a bit more about my story & the long adventure I went out to figure out what was wrong with me:

In the fall of 2008 is when I first started to feel any kind of pain & that pain was to me "tooth pain." I started taking ibuprofen & putting orajel on my teeth when the pain would come on & ofcourse I thought it was solving my problems. This all continued on for a year until October of 2009 when I had the worst pain I had ever felt. At this time I was a college student and was at my part time job having what was one of the worst attacks I ever felt. The next morning I finally decided to make a dentist appointment at some place I had never been because I was away at college. Needless to say the dentist looked at me like I was crazy and kept telling me nothing was wrong with my teeth.. I had no cavity but could potentially need a root canal because of a teeth dying. He recommended I continue taking ibuprofen and then go see this specialist to have my teeth drilled. After talking to my dad he thought that was a little extreme since my pain had stopped & thankfully I listened to his advice and did not go to this specialist.

December of 2009 rolled around & the pain was still there. It was a come and go kind of pain and something I had learned to live with. Most people who live with TN would probably think I'm crazy to still have not continued my search for the answer to this but the problem with my TN diagnosis was also that I lived 2 hours away from home during the school year & also six hours away from home in the summer because I worked at a beach then. So as I was home for Christmas break my mom & sister insisted I go see my PCP about this finally & I did. Needless to say it left me empty and even more upset about my pain ... He insisted that my pain was being caused by my sinuses and I needed to be taking Claritin-D & using a nose spray everyday; desperate, I went along and tried this with no results.
March of 2010 I went back to my PCP over my spring break and explained how his last diagnosis obviously was not right. So we went on to the next thing & that was grinding of my teeth. Hundreds of dollars later wasted on mouth guards & moldings of mouth guards that would cause me even more attacks I was still in pain.

From May 2010-August of 2010 I chose to live with my parents back in my hometown for the summer before I returned once again to college. This was my least painful time of my life where I had minimal attacks if any (which I now came to find out was probably a remission session I was in ).

In September of 2010 TN came back with a vengeance & worse then ever. Once again to the PCP I went, but this was not before I had tried to diagnosis myself with what was going on.. I felt around my tooth area to find that my jaw was cracking and slipping so I thought maybe I had TMJ.. The PCP agreed and decided I needed to be seen by an oral surgeon. During this time my PCP put me on an arthritis medicine to help with the inflammation before my appointment which once again had no effect on me. Finally my oral surgeon appointment was coming up and the night before I left school to head home for the appointment my sorority sister who is also a nursing student came running up to me telling me she finally knew what was wrong with me. She explained how she had to find a neurological disorder for her class & came across TN which fit all of my symptoms. I just couldn't believe it & couldn't stop obsessing the whole night over the fact that every description I read described me.
The next day I went to my oral surgeon appointment, which I must say was the worst experience and day of my life because of the doctor. We went into the room and he asked me to explain what was going on & I said I do not have TMJ I have TN & he started laughing at me.. I obviously started crying because my pain was so bad that at this point I hadn't slept or ate because of attacks. He does his exam and finally agrees with me & tells me I need to go get a head CT done of my brain to check for MS & a tumor. He tells me I need to get a referral from my PCP for a neurologist and he will help me.

The neurologist appointment was on October 29 or 30 of 2010 and in between these two appointments I was in the ER because of my pain level. Once in the ER I had another ******* doctor try to tell me I did not have TN.

I was finally diagnosed with TN at that neurologist appointment and immediately started in a seizure medicine.

(((Sorry thats so long its just a blog post i wrote for another website)))


Your very lucky that the tegretol is taking away 99% of your pain because none of the 3 medicines I used worked for me. I am only 22 years old and just graduated college so to me this felt like the end of the world, but once you learn to get your pain under control trust me its not. I unfortunately was unable to control my pain and had to get the MVD surgery and am now 7 weeks post op and pain free! I am not sure where you live but if you are unhappy with your care I highly recommend Dr. Raymond Sekula who is a neurosurgeon at Allegheny General Hospital here in Pittsburgh.

As for an answer for what causes this Dr. Sekula explained that TN could be caused with older age because of a vein possibly drooping (kind of how skin does with old age) and starting to rub on the trigeminal nerve. I'm not sure if you are older or if that even helps but i hope it gave you a little relief to know that you are not alone & with the proper care this can be managed.

take care & let me know if I can help you with any questions!

[Burntmarshmallow]

wow Sadie I love your post ... so much so I just had my daughter read it she is 20 and on spring break right now (2ed year of college. ) Both of us are very glad your pain free . Was sad for her to read that someone young like you had to deal with all kinds of pain her mom did .She was able to really get a good take on things from someone very close to her age. the ending is the best.
and YES the Dr you mentioned is a very good Doctor who also dose PNS which is what I have . NOT by him but I know others who have had that Doctor for MVD and PNS , all good endings for them so far
Thanks for sharing your journey and may you continue to stay pain free for ever more.
PEACE
BMW

ps can I ask your major is it in the medical field?? mine is going for bio medical engineering

[sadie324]

I'm so glad my story could help her understand the pain you were dealing with! I know how that is to try to explain to people and they just look at you like theres no way this is possible blank expressions.

No major is not medical field but rather in communications! Although looking back at school I wish it were in the medical field all because of TN & I know there has to be a reason for it & someone has got to figure it out!

Originally Posted by Burntmarshmallow

wow Sadie I love your post ... so much so I just had my daughter read it she is 20 and on spring break right now (2ed year of college. ) Both of us are very glad your pain free . Was sad for her to read that someone young like you had to deal with all kinds of pain her mom did .She was able to really get a good take on things from someone very close to her age. the ending is the best.
and YES the Dr you mentioned is a very good Doctor who also dose PNS which is what I have . NOT by him but I know others who have had that Doctor for MVD and PNS , all good endings for them so far
Thanks for sharing your journey and may you continue to stay pain free for ever more.
PEACE
BMW

ps can I ask your major is it in the medical field?? mine is going for bio medical engineering

[Burntmarshmallow]

correction of my last post the Dr who does PNS is from same Hosp as the Doctor you mentioned Sadie . Seems to be the place many are going to lately here on the east coast .
PEACE
BMW

[fliplovestoeat]

Sadie for 6 years I got told by dentists ( 4 different ones) that I did not have trigeminal neuralgia whilst they laughed at me for even suggesting it.
I was too young "apparently".I work in a hospital and a medical records staff member "diagnosed" me as he was walking past my desk at the very start of my days of pain.It really hurt that they laughed at me and I sometimes think that I would like to write to them, but hey they are dentists and so far up themselves they wouldn't care.
I should have gone to a Neurologist years earlier. I now have one and he is great. Pain free for now ( on medication) and loving it

[Karen B]

Originally Posted by Mike H

Hi everyone-

Here are the bullet points-

* Pain started about five months ago.
*Stabbing pain behind the eye followed by dull aches in temple and jaw.
* Visited emergency room, got cat scan, was told by ER doc pain was from new reading glasses.
* Saw Optometrist, no growths behind eye, was cleared
* Visited emergency room again, CAT SCAN was preformed, came back negative, was referred to a neurologist.
*Neurologist diagnosed me with stress headaches, was prescribed tramadol. It did nothing.

*Visited TMJ Specialist Dentist. He diagnosed me with pre-trigeminal neuralgia. He prescribed Tegretol. Tergretol took away 99% of pain.

*Had MRI with and without contrast, all came back clear.

*Saw new neurologist, confirmed diagnosis of pre-trigeminal neuralgia.

* I am am insisting on knowing how I got this.

*Currently awaiting a CTA scan on friday.

* I have become completely depressed and convinced that I am going to die from this.

*Please help me.

I also had pre-TN, though I did not know it at the time. Twice I had week long attacks of severe "tooth pain". I was completely normal in between the two attacks.

My suggestion is arm yourself with knowledge (search pubmed, read Stiking back, etc) and be ready to make informed decisions when you have to. I used to worry about my TN and obssess about it daily. It is so easy to get depressed or into a rut. But now I refuse to let this rule my life. I have acknowledged I am in pain but refuse to let it stop me. I urge you to take control of your situation and to not let yourself feel hopeless. Even on bad days where talking hurts I still force myself to go to the gym or even to a dinner party. I can either be in pain at home or in pain around other people. Either way I am in pain but a dinner party is way more fun (I just avoid crunchy foods, eat tiny amounts and hope no one notices me wincing when I try to chew.) If I am going to be in pain either way I might as well have fun!

You won't die from this, but you need to make sure your pain is controlled enough that you are able to eat and keep hydrated.

Stay strong!

[Burntmarshmallow]

I like your reply Karen ...you are what I call an angel warrior .
besides dinner party being fun... not sitting at home , going out doing something distracts your brain to some extent from wallowing in the pain . you are mega right your in pain either way so why not try to do something fun. even if you have to do it a different way.
PEACE
BMW