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General General TN & GPN (Old Site)
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Hello All- I am new to this site and also new to this affliction . I was diagnosed with TN (Finally) after 3 years of mysterious pain and pulled teeth and Thousands of $$ at civilian medical places. A year of nasal rinses and sinus meds to no avail.

I used my veteran status to get into a clinic - after an examination and 30 minutes of discussion about what was going on with me the Dr. told me he thought it was TN . I had never heard of this , he put me on 100mg Carbamazepine (Tegretol) 2 times a day .

I am waiting for a call to schedule an MRI and get in with a military Neurologist .

I did a lot of research in the past week and am honestly scared to death about what my future may hold.

I am Just turned 53 YO - Male - I work hard for a living as a supervisor and it has been hard to explain my need to 'step away' at times during work.

I would say that at this point I believe that I have ATN -On my left face- My triggers are mostly almost solely Barometric pressure changes , laying down to sleep , or high stress , anxiety . I am lucky I guess that I don't have the outer triggers . I do believe I have an inner trigger inside my sinus , but that is not confirmed , a smell or puff of dust can sometimes set it off.

Since I have been taking the Carba. my attacks have gone away . Except for a minor one when I was watching a video of another sufferer - I felt like I was there and the anxiety brought it up . I had to look away , but I totally feel for others in worse shape than myself.

I don't have the electric shock or stabbing pain - but more of a slow build-up to massive pain in my cheek - around my eye and temple , these would last 15-45 mins then fade to a tingling up to the top of my scalp. It would be so bad my left eye would just pour out tears involuntarily.

I can't believe that 2 dentists an oral surgeon , an ENT , a GP , and a civilian Neurologist could not tell me what this was .

I am here to give support to others and to do what I can to raise awareness of this .

At least now the Dragon has a name .

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Hello and Merry Christmas

Yes this website has a wealth of information and has been such a blessing to me. You have some similar triggers as I , stress is one of my triggers, when I laugh as well, I have to keep myself from being emotional, wind, the barometric pressure, now the newest is that I'm sensitive to noise and the light. Not everyone has the same triggers and pain but similar. I had a root canal because of this but it was a fast diagnosis from my doctor, I have suffered seven years and am now scheduled for my MVD surgery February 3rd Praise God. I am pretty much a shut in because it's so cold where I live and In the summer the air conditioners are blasting everywhere. I hope we can encourage help and pray for you.

you are not alone

God Bless!

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Thank You for the reply Blessed ! All I can say at this point it that Carba is helping a lot . I was able to sleep thru the night again . Usually the pain would drive me out of bed . One minor episode . That happens when I lay on my left side.

I must have rolled over in my sleep. But It is so much better than an all night fight that ends with little sleep .

After 3 years without any relief from this , I am hopeful but scared of the future.

During the worst of it , most mornings Light and sound would definantly antagonize the problems . But oddly cold air would help me , I would even have to go outside into the cold to get away from a hot flash that would frequently come at the worst times , at work I would step into the dairy cooler for relief. It is my belief that the cold air would cause the blood vessels in my sinus to shrink away from the nerves . That is not confirmed but whatever helps in these cases , I have been grabbing at straws for so long trying to fight this and not lose my job , house , and life. 5 days with only a couple of minor attacks feels like I have some hope .

I am glad to have this site to talk to people who truly understand , with the exception of my Mother who lives here and knows firsthand how much trouble and pain this has been for me , most people have been indifferent , uninterested and dismissive of this .

[img]http://i.imgur.com/2odnCAz.jpg[/img]

My main solice has been RollerCoasterTycoon3 -Not sure if image links work here- But I build and modify this game as well as import Custom Scenery . It is an escape.

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Yes the way people respond has been truly heartbreaking to me, especially when I tell them about the wind and how it affects me.

It has made me more sensitive towards hurting people and I want to be that way, most people go about their lives not

caring for others. I refuse to become bitter towards them and want to make a difference in the lives of other hurting people. I rarely go outside now but love sending cards so I've started that way.

God Bless

5

We are a rare bird!
Look at the search box for TOPICAL
can keep meds lowered sometimes with creams and such, like lidocaine.

Get the book
Striking Back
By dr, ken casey

Learn all you can

Hope you can find a dr. With TN experience.

90% of us do not find MRI results , proof of TN.

FIESTA MRI is most advanced.

Learn, read, ask, repeat!

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Welcome Mr. Veteran,

I’m glad you found this site… it has been so helpful to me. In October, I had an MVD which seems to have taken care of the TN in my lower jaw, but I’m now having some ATN type pain in my sinus and over my cheek, kind of like you. Could be the nerve just healing. I plan to wean completely off the meds after the holidays are over and pray that there will be no pain. The cold air theory is interesting. Might be something to it.

Ditto what KC Dancer said… especially about the book. Great resource! Oh, and my MRI did show one little compression and insinuated that might not be the full culprit of the pain – as if maybe it wasn’t TN after all. The doc was adament that there were no others because the fiesta MRI would show them. Well, lo and behold, they found several other small compressions at the root of the nerve. So, MRIs help them rule out other things, such as tumors, but they are not conclusive re: compressions!

I struggled on meds for nearly 9 years until the pain and side effects became so bad that I finally consented to an MRI. I now know I should have done it years ago. The key is finding the very best surgeon you can with experience doing MVDs. There are some excellent neurosugeons at Walter Reed. I met several of them through my work a few years ago. Because they mostly deal with trauma, they might not have much experience with MVDs, but you can bet they are very experienced brain surgeons! I would recommend Dr. Jim Ecklund, Dr. Geoff Ling, and Dr. Rocco Armanda.

Glad you are getting some relief now. Hold onto that hope. God Bless…

Lynette

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Well , Unfortunatly my main trigger (storm fronts) came thru last night and has brought back the night problems , something is pushing on this nerve and pressure changes directly affect it. The 4th episode up to about a '5' drove me out of bed. I still think everything points to a ballooning artery . Or the rare chance of a tumor or cyst. I need to get a look in there to rule those out but the military is notoriously slow and I just cannot afford it thru civilian channels.

The med did seem to calm it faster than before , and I still had to step into the cold to cool off.

Thank you all for the support . I know this is real and I know how bad the pain can get.

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Hi,

You are NOT alone. I, too, am 53 and have suffered with this for two years. I went back and forth to the dentist thinking it was sensitive teeth. I have not had much help from the medications - I have taken four different ones. I have found that Baclofen helps at the onset of an 'attack.' When I have an attack, I mostly cannot speak for about 20-30 minutes. I have at least one attack a day, and have had up to 3 in one day. I am beginning to think that stress brings them on, or the let down after doing something - I have noticed that they happen often in the car after work or after finishing a chore. During an attack the right side of my head tingles and I get the stabbing nerve pain in my gums. I am considering the shots to numb the pain but am afraid of the procedure.

Hope this was supportive. I need support, too.

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Thanks for the reply TooCool ! One of the other problems I have been having popped up again today at work . Usually - most days almost like clockwork I will begin to get an attack within the first 45 mins of starting work . My job is to set up to sort and unload a truck before my crew arrives . Dropping pallets with load bangs , dusty conditions (not real bad) but mostly interacting with management about all the details of the nights work - organizing my own plan etc.- Stressfull - even though I thrive on this kind of logistics and am good at it. But something is going on here that is working against me ...The episode today was muted and ended quickly , maybe a '4' , I just can't put my finger on what is triggering this here though, there are too many variables. Maybe even working right under the heat vents with dry conditions... I want to turn this damn thing off but can't even figure out what is going on .

I ordered the book Striking Back today and will do some reading. I am pretty sure I need to up the meds but need to get the Dr approval. so I don't run out and can't get more I am pretty sure I have been benifitting from the Carbamaz but It is too low at 100mg . So that makes 5 episodes in the past 24 hrs.

I have also had many attacks while driving , I Had to pull over with my Mom in the car one time and let the episode run its worst , took 30 mins of just pacing around a parking lot to finally get my head together , she understands and I knew it was getting to the point of being unsafe I might pass out. I think I was driving thru a pressure change in the atmosphere which is the worst of my triggers.

This is just driving me nuts - now the anxiety of trying to get some rest ....

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Reading Yall story is like reading mine with slight differences … Cause the pain is the same … Before TN the highest level of pain I use to call an 8… That 8 is now a 4 compared to what my new 8 is … I have never experienced pain like this … Let’s keep praying and being there for each other. Thanks for sharing ::::))))))))

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Thank you all for the support and kind wishes . Reading other stories has helped me to see more aspects of this and gives me a sense that it is not just me dealing with this .

Feel free to post your issues here , they will be heard.

As the barometer here climbs so do my problems . I don't know if the meds are blocking one part of this and letting another thru . But last night was different ,

Same kind of pain cycle , but main focus in the temple but with the peripheral pain like a migraine headache behind my left eye socket. This is new . I just got over a '6-7' episode after trying to go get some more rest being driven out of bed 2 hours before . Took about 1.5 hours was back sound asleep and woke up to that. What fun. -not-

It is weird - I know this has to be something vascular . The pain simply vanishes after I get my self upright for about 20-30 mins. and let the build-up of blood in my skull drain out. I mostly don't have issues when going about my daily routines unless there is some sort of weather related pressure changes , or some sort of high stress -

I am sick of having my life being run by this shit - I am determined not to let it destroy me .

I love life and see beauty in everything around me -

As hard as it is to accept - suicide is not an option.

'My worst day of pain - is better than nothing at all"