Dear Lauren,
One of the very hardest things to bear, outside of the pain, is the lack of understanding that we can sommetimes get from family members and loved ones. Chronic pain is VERY hard for someone without it to understand. It's almost like denial - like they do not want to understand that something like that could possibly exist, or even happen to them. Another thing that people think is that doctors can cure everything. Obviously not the case. Also, people can think that if you take medicine, especially painkillers, that that medicine will work completely, and the pain will be gone. Like magic. And finally, there are the people who hear "fibromyalgia" when you say "trigeminal neuralgia", and they bring you pamphlets or put you in touch with people they know with fibromyalgia. So be prepared...
One thing that helped me communicate with those around me was to google "Trigeminal Neuralgia", then print the articles that most succinctly define this condition. If people (mostly family) responded with a lack of understanding to me, I would literally sit them down and make them read these articles. Still though, the only people that I have met that truly understand are medical professionals and other TN sufferers.
It is totally not my intention to scare you, I just want to make you aware of some of the biases that you will encounter with this journey. You will not get the same treatment as the visibly disabled get. There will be no one to open doors for you or help you out. But this will all make you stronger in the end, stronger than you could ever think that you could be.
Many big hugs to you, and we've got your back, ok?
Lily

Hi laurenash
lastnerve has great idea printing out info to share with those how dont really understand this... up above in the stickies there is a thread called "caring for someone with t.n."
I tell others to print it out and give to family friends even doctors and dentists just so they can have an idea what all of us are trying to live with each day so they can be of more help.

And too just as doodle bug has shared ... do not overwhelm yourself by trying to see your whole future all at once. It IS one day at a time and each of us are different what helps someone else may not help the next person. so the more each of us share the more hope and info we leave for another to find a way to a more pain controlled day.
usually it takes a couple weeks for you to adjust to a medication and most time medications helps control the pain Just give yourself time to adjust okay.
maybe the mri will show a compression on the nerve and surgery can fix that.
sending you calming thoughts as I know the claustrophobic dose not help. maybe they will have music playing then you shut your eyes do deep breathing and everything will be okay.
I am really very sorry your dealing with this being so young
Just know there are others here like legallady she is in her early 20s your not alone not at all we are all here for you.
try to learn what your triggers are for some it is the wind. or being touched on that area of face others it is the heat and humidity... cold foods or drinks ect learn your triggers and try to avoid them. I use a bandanna to cover my face up when its windy ,hate kissing... drink with a straw stuff like that.
I am holding you in my prayers and positive thoughts. oh and welcome to neurotalks t.n. forum. I am glad you found your way here.
PEACE
BMW...Tina

Oh, Tina, no...you can't kiss? Am I reading right? Awwww honey.......that sucks! I'm sorry to hear that.
Double hugs for that!

Lily

well as you know yourself there are things we cant do like we used to ..we learn to do things a different way.. so kissing on or with lips nope but nose like Eskimo or air kiss . its still love and that is what matters . right right.
hugs back to you.

I've realized that the lips might also be a trigger for me too, which is a bummer. My boyfriend is on the verge of leaving me because of the fact that I am scared of being touched. I guess he just doesn't understand. That stress doesn't make anything better either.

I'm trying to look at this as a vacation. I know its far from that, but if I tell myself that things will be back to normal sometime in the future, it helps me keep my chin up a bit.

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.

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

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..