Just diagnosed - 21 years old
 

Hi everyone,

I am very new to all of this. My name is Lauren. I was just diagnosed yesterday with TN. I am 21 years old living in Richmond, VA. My neurologist specializes in TN and I'm the youngest patient he's ever seen. I'm really scared right now because I've heard that the disease usually progresses over time. I can't even begin to imagine the pain I'll feel when I'm 40.

I guess I'm looking for some information on how to cope with it. The medication I'm on makes me extremely tired. I've had to quit working, stop going to classes, and I can barely function. I'm scared.:(

Any advice as to how to lift up my spirits or get my life back to normal would be greatly appreciated.

Thank you so much,
Lauren

Welcome, Lauren! I'm afraid that I don't have any advice to offer as I'm in a similar situation. I'm new to this with mild pain, scared of the progressive nature of this condition, and tired/foggy on my first med, gabapentin.

I can tell you that I titrated up at my own pace when I realized how tired this drug was making me. I went very, very slowly--much slower than my neuro recommended. I also stopped the titration when the pain dissipated, which was 100mg less than recommended. At my follow-up visit I told my doctor how I was doing things and he totally agreed with me. I have kids. I HAVE to be able to function.

The med-induced fatigue does seem to be improving. I think I started treatment about 6 weeks ago.

What drug(s) are you on, and what is your dosage?

:welcome_sign:

Bluemom

Dear Lauren,
Yes, this condition is initially difficult to treat, it takes a while to get the right medication "cocktail" working, and as you can already tell, there are side effects. But keep working at it until you feel that you are able to get back up and around. You may need to take a little break from life to get this under control, but many people do. It's a real shift, a real change from "normal", but you are tough and you can do this - roll with the punches as best you can, cry if you need to, get angry if you need to, and always remember that even if some other people don't always understand, you have us here to talk to, and we most defnitely do.
Big hugs, :hug:
Lily

I know it is difficult to imagine the future but try to take one day at a time. I was diagnosed with T.N. ( I had some super electric shocks while taking a drink of water) I was put on 100mg. dylantin and 30 mg. once a day. This held me for 10 yrs. before things changed. But, ya know, it is so different for every person. I am so sorry that you are going through this especially at your young age.
Bless you and write more about yourself. Everyone has a story.
Patti

A little about myself...
 

It all started when I went to a dentist to get some work done. I had one tooth that was bothering me. She took xrays and said I needed to have a bunch of tiny cavities filled. So she did the work, and when she started to work on my left side, I felt striking pains in my face. I figured that it was just because I wasn't numb enough. So she numbed me twice more, each time saying "You can feel that?"

After having the work done, I called because the pain kept coming back. She told me that it was just because my teeth were sensitive after all the work. Then she told me maybe it was because I grind at night. She talked me into purchasing a $500 night guard, which made things worse.

The pain kept intensifying. I went to 4 additional dentist who told me it was just TMJ. What a joke. I spent all kinds of money trying to find something to "fix" a problem that wasn't even there.

Fast forward to about 3 months later. The pain was more severe and came more often. Two dentist put me on 3 different kinds of muscle relaxers saying that it was muscle related. I was on that regimen of 5 muscle relaxers a day and 4 ibuprofen every 5 hours. Nothing worked.

This past weekend (Saturday), I decided it was time to go to the emergency room. I had been having an episode that lasted about 4 hours. The episode was accompanied by uncontrollable movement of my jaw. I looked absolutely crazy. Finally, a Dr. came in an saw me, numbed the nerve and checked on me about 30 mins after to see if it had made a difference. I had no pain after that, and he concluded that it was a nerve issue.

He then called an oral surgeon who insisted it was a muscle issue. He told my family and I that he did not agree with the oral surgeon, but that I need to see him ASAP on Monday.

I called on Monday and they fit me in to see the oral surgeon. He did a full xray of my mouth and then laid out my options:

1: Root canal on tooth that had the most pain (All teeth on left side hurt)
2: Extraction
3. Referral to the Neurologist.

I chose the third. The oral surgeon just seemed like he was searching the xray to try to find some sort of cause, and it was making me extremely uncomfortable. He would say things like, "Well, maybe this down here might be an abscess." He just couldn't confirm anything, and I wasn't going to have him remove my teeth for nothing.

So I was lucky enough to get in with the Neurologist that same Monday. We talked about my symptoms, the type of pain, frequency, triggers, etc. He concluded that it was Trigeminal Neuralgia. He was quite surprised because of my age. He stated that I probably had the genetics for this disease, but that the dentist might have set it off. What a shame. :(

I am on 300mg 3x a day of Trileptal (900mg total). I can tell a difference after a few days, but I'm still having pain occasionally, but the pain in my teeth have gone down quite a bit. What's killing me now is the paranoia of setting it off, the stares that people give me when I start to have an episode, the dizziness and fatigue I have from the Trileptal, and my pain is not gone yet. I'm worried.

I am currently waiting on a call from the hospital to schedule an MRI to check for an aneurysm or tumor. I am very scared about that also as I am extremely claustrophobic.

I was the valedictorian of my classes before all this. I was studying Radiology. I literally had perfect scores in all of my classes. That has all changed. I'm hoping I don't get fired from my paralegal position. I'm just so down in the dumps. Luckily, I have a very supportive family, but a not-so-understanding boyfriend who lives with me. I'm so sick of hearing "You'll be fine. Just be happy." It's not that simple.

I'm glad I came to this forum. I needed to get all of this off my chest. Thank you guys for being sooooo supportive.

Lauren

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... :rolleyes:
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 :hug:
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

Whaaa?????
 

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.
:hug: 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.

:grouphug:

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 :grouphug:
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.

Lauren
 

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,, :grouphug: 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 :hug:

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

Hi Lauren-
 

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..:grouphug::grouphug: