Lauren,
That's a great perspective to take - often it is like that - you need time to learn what meds work right for you, and to get used to their side effects. Once you learn what to avoid, and with which meds to treat the pain, you can start to get back to the things that you love.
I know we are all wishing the best for you
Lily

Well hello, my friends...

So I just wanted to let you guys know about the test results from my MRI.

I had the MRI done about a week and a half ago. My pain has decreased but not disappeared since starting the medication. I started having pain on my right side also (pain usually was on the left), but thought that I might just be freaking out because I wasn't sure what was going on with my body...

Well, the MRI showed that I have TN on both sides. TADA! Medical Incredible. lol

1st Rare: Having TN
2nd Rare: Having TN at 21
3rd Rare: Having TN at 21 on both sides of my face

This is really hard for me to grasp right now. I'm trying to make light of it, but what the hell. Really. I'm pretty upset. The pain isn't just afflicting one side anymore. Ugh. I feel like I'm losing my mind.

lauren,

i am also young and have TN, I'm 22 years old. This all started for me three years ago but just like your case I went through all the same doctors and had the same issues. I have been on medicine for four months now and am now on my third medicine which is gabapentin. I could not even bare the side effects of the first two which where the same your having. I was actually in my last semester of college and somehow just made it through. I am now going and getting the MVD surgery this Thursday to hopefully end my pain.

Your not alone in this & trust me i know it is horrible pain and you feel like there is no end but you just have to keep trying things and give the medicine the time. I only waited four months before seeing the surgeon and maybe I should have waited a bit more on the medicine but if you are having side effects that bad maybe try to change it up.

take care!

Wow! Your story is like a mirror image of mine! I started having what I thought was dental problems approximately 1 year ago. To make a long story short I had a crown placed, a root canal done, had many dentist and endodontist appointments before they finally gave up and determined thatw my on-going and progressive pain was a medical rather than dental issue. I visited a walk-in clinic where I was diagnosed with TMJ. I was prescribed muscle relaxers, pain medicine, told to invest in a mouth guard for teeth grinding, and sent on my way. I followed the doctor's orders and found that the pain only continued to worsen. I decided to seed a 2nd opinion from my primary care doctor. He questioned the TMJ diagnosis and ordered an MRI, as the pain had radiated from my mouth/face and into my head. Following the MRI, I was referred to a neurologist who mentioned the possibility of trigeminal neuralgia. We're still not 100% sure of that diagnosis as this point, but it's looking like that will probably be what it is. I still need to have an MRA of my brain and an MRI of my lumbar spine along with an ENT specialist appointment to rule everything else out. In the mean time, I've been prescribed Tegretol and Lortab for the pain and the wait continues.

Ok basics for TN, first purchase the book "striking back" you may have to order it,,it's not a best seller except for TN patients!!

Second, get rid of aspartame, MSG, caffeine and as much sugar as possible. Also avoid all toothpaste with whiteners,,they make it worse. Start taking a good vitamin B complex as well as a multivitamin high in selenium. A good vitamin D with magnesium helps as well.

Third, get as much sleep as possible even if you have to take something, avoid stress (a joke I know) but helping to control stress can be done by learning to meditate or even just learning breathing control,,it will help you get through the rough times.

Invest in a few books on chronic pain and how to cope with it. One decent book is called,,,a husband, a wife and an illness and although she doesn't have TN chronic pain is chronic pain,,find a few that relate to couples and how to deal with it and then get your boyfriend to read them (the hardest part I know). There is some good stuff out there that may help him understand better what you are going through and help him deal with HIS feelings about it.

He's scared and angry and resentful,,if he's willing to be open about it some therapy that deals with families of chronic pain sufferers would probably be worthwhile....

OK, that;s the quick basics,,now for you. You're young but remember that infants can get this disorder so it's not that unusual. You have options,, there are surgical procedures and enough meds that you will most likely find a balance to maintain this for many years,,so don't look too far down the road. Take one day, one attack one moment at a time if you have to. You will live through this and you will be okay.. we have all been where you are and it's terrifying but we are all here talking to you so we made it and are making it every day,,you will too.

We are all here to help and if you want to private message or talk to somebody,,let me know. I've been doing support for TN for many years,,sometimes it helps to just talk to someone who understands where you are. Let us know, we are here to help. I remember the first time I met someone with TN it was an epiphany,,finally I wasn't alone.

Go to the TNA website ( I think it's now the facial pain website) and see if there is a group that is near you,,if so,,go to the meetings,,reach out and meet other people with TN,,for yourself,,you might find that you are no different than many other people there...

Don't be afraid of depression, be prepared for it. Chronic pain and chronic depression go together..get it treated. Don't add more emotional pain to what you already have,, this is a hard thing to face especially when the people you most need don't understand it,,or don't want to deal with it..

And keep coming back, let us know how you're doing. We are here for you and are interested in how you're doing... we really do care about you,,don't be afraid to ask for help,, Beth

Hey Laurenash,

*huge hug* Your not alone.When i was 17 or 18 and i started to have my TN, I researched and knew it could be that LONG before anyone took my level of pain seriously.
I too felt, well..im too young for this..i was in denial for a long time and somedays i still am..even when the pain is just so bad, i actually think...wellll maybe its in my head, even though i must take meds for it.

Its a hard thing to accept ofc but i read further up someone saying that sometimes you might feel really down.
Its so important to handle it like coming here talking to others or however you may deal with depressive moods because your mind will affect your tolerance for pain greatly. I only joined this forum today hoping for some support. Gosh , im rambling horribly, sorry heh, basically just...*hug* hehe. Take each day at a time

p.s My terrible punctuation etc is alllllll the Tegretol...i used to be smart i promise :P

Hi Lauren, I am 22 and I have recently been diagnosed with TN after months of endless doctors visits and being told I am exaggerating and a liar. *moderator edit* I hope your specialist is able to find a solution that suits you and helps the pain. Take care.
x

Howdy,,,

You just had a lot of great info kinda thrown at you at once,,first off remember that even if our experience isn't exactly the same as yours,,,we all understand where you are and where you will be going. Because we've all had to travel that path,,,but the hope is ,,we have traveled that path and we are all still out there every day, sometimes better than others, but we are all still here and we are all still at it.....Don't loose hope yet.
You have a huge mountain to climb but we will be here to get you through every step....and you WILL get to where ever and whatever you want to be or accomplish,,the process may change the path may change but you will get there,,,and we will help in any way we can...
You will learn your meds and how to control them,, you'll learn if you have any trigger points,,,and you'll learn this has changed your life but it has not stopped it.

You are young and there are still great MD's out there working for us to help find other ways to help control this disorder,,,have hope.
But right now you are scared and that's okay,,we all were too. But just let yourself take this one step at a time don't try and climb the mountain at once....it won't work that way.
Give yourself space and time to get used to having it before you try and convince everyone else. Your family and friends will learn. They need time too.

A few quick tips of my own, start taking a good Vit B complex, get rid of all aspartame, MSG, caffeine. Drink lots of water and eat healthy,,keep your immune system in good shape, exercise if you can and when you can't ,,,,it's ok. Most important learn to meditate,,,even if it's just learning how to relax and control your breathing. You can control the attack better if you can learn to breath through it and stay calm...
You can also check with the TNA website and see if there is a group in your area,,,meeting someone else with this can make you feel less alone.

I know you are young but that's hopeful,,,by the time you get older there will be more things out there to help you control this than when I was first diagnosed... Try to stay positive and remember ,, we are all here for you.

If you ever need to talk about this with someone you can private message me and we can arrange a time,,,sometimes talking to someone else that understands can really help....

Don't loose hope,,,we are all in this together..