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?



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,
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

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...
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.