The Starting Point

"When did your TN symptoms begin?"

That's the question everybody asks, from doctors to curious acquaintances. It takes different forms, but asking when is the beginning of every discussion. And it is important to know, especially when you're sitting in the doctor's office. Your medical history can have a big impact on your current treatment.

Some of us have it down to a specific day, and can even describe the exact moment they first felt pain. They know where they were, who they were with, what they were doing, and can cogently analyze the exact quality of the pain they felt. If you can do this, you are seriously awesome.

I'm not one of those people.

There are a lot of possible reasons for my forgetfulness. First, I'm not entirely sure what pain was TN and what pain was something completely unrelated. Looking back with a diagnosis in hand, I'm forced to ask myself if I was symptomatic when I got my first root canal when I was 16 and continued to have excruciating pain for a few months after the procedure. My dentist said it couldn't hurt anymore, but it did. What about the times half my face would burn for days on end that I had attributed to a reaction to lidocaine or from being out in the cold too long on skiing trips? I try to avoid thinking back because everything becomes suspect, and in reality most of that was probably not TN.

Second, I'm not good at tracking time and we're talking about something that happened at least a decade ago. I know that it was soon after my husband got his current job, and he's been there for twelve years. That's the closest I can get, because even when I had pain that I can clearly identify as TN now, I didn't know what TN was. I thought it was a toothache, then TMJ, then stress, then inflammation, and the list goes on. I had teeth drilled, my neck cracked, x-rays, you name it, I was busy trying it. I never thought of tracking symptoms by date because I had no idea that a long-term illness had invited itself into my life.

Third, my diagnosis came several years after my symptoms started. I think it took three or four years before I basically ran out of root canal options and my doctor ruled out everything else. I can clearly remember my dentist hesitantly bringing it up and asking me to go to an oral surgeon. The problem with diagnosis was in large part my age. Doctors and dentists were taught that generally healthy people in their early 30's didn't get TN, it was an old person's disease. Am I supposed to count in "pain years" or "diagnosed years" now?

Fourth, and I suspect I'm probably not alone in this, I've been taking nasty medications that destroy my memory for years. I can ace the neurologist's cute little memory test on the worst day, but I can't remember if I've eaten breakfast this morning. Last night I struggled for the word "dinner" and finally settled for yelling "Food!" when calling everyone to eat.

The way I see it, I have two choices: Lie and pretend I know when my symptoms began, or look like a fool and stutter out an explanation that makes no sense because I don't have the time or ability to say everything I've typed here. I usually lie in an attempt to preserve the little bit of dignity I have left, and that gets me in trouble because my answers aren't consistent and I look like a drug-seeking fake.

"When did your TN symptoms begin?" is such an important thing to know, but for some of us there is no good answer.

Hi tina, i cant relate to that. In 04 i got a massive sinus infection. I know where i was and everything and it took forever yo go away. My husband had back surgery thats why. But was it tn? It kept happening and increased in frequency every year. Then my brother got terminal brain cancer in 06. I became his power of attourney and personal care, had to go to BC sell his house, fly him home with me, all while starting a new business, caring for 5 kids a house etc… I had pain off and on all the time. I must have thought it was stress. Checked my self in twice to hospital over 3 years while my brother was ill before he died. My doc kept saying i was just depressed. I handled everythong no problem but i would have these break downs that i just ckuldnt cope and my face hurt so bad. The antibiotics never helped these “sinus” infections. I beleived them that i was in so much pain because i was so depressed. Now i look back and know it was the other way around. All of my records from my conversations with nurses repeatedly state over and over how bad my face hurt and i wanted to bash my face in. They had me on so many drugs for deppression but the pain was always there. Thank goodness a phsyciatrist recognised that i kept complaing about my face and that depression doesnt specifically make your face hurt. Im sure it started even before that but when it comes and goes you brush it off. I had one neurologist write that she thoyght i was looking stuff up on the internet because i had so many triggers and symptoms written down because my memory is shot as well. Its a good idea to get a copy of all your records to have for yourself. After the 6 years of hell i went through before dx i knew it was impotant to do so. Its like if dOnt write them down you sound like an idiot trying to remember and you do and they think your makin it up. Anyway, i hope things go better for you in future. Take care, jacqueline.

Hi Tina, I know it gets asked a lot, and even though I do remember. I always feel like saying “who cares?” I have horrendous facial pain that is not normal, let’s deal with my pain!
I understand that the consensus of tn patients actually remember, but we can’t all be placed in the same box. We’re all unique, we have similarities but for the most part our journey with TN is unique to us.

I hear ya about the word recall thing, drives me batty! Makes me feel stupid! I know it’s just the high dose meds I’m on, but it’s still extremely frustrating…

I beg to differ, it is not so important to know when your pain started, neuro’s will often measure your answer to that question as part of their diagnostic workup because many TN patients can remember because the pain is so intense and such a shock.
BUT like I said there is NO cookie cutter way to go about diagnosing TN it is largely based on our accounts of what’s happening and then how we react to the Tegretol or other anti convulsants.

Many of us have other health issues ( like you mentioned) that coukd have explained our pain…

Most important thing I’ve learned along this journey so far is this ;
We are our own best advocates, we know our bodies best, so we must persevere when others question us, to tell it like it is. Really their questioning is part of what they must do, and their opinions are just that, theirs.
Because of my inability to remember ( due to meds) I now document everything and keep a binder on my kitchen counter.
Eg. ~Spoke to neuro oct. 12th, increased Baclofen
~ saw neurosurgeon Oct.22, discussed MVD

It has helped me tremendously especially when prepping to see a new specialist or talking to my insurance company ( long term disability) to give them updates for my situation.

(( hugs)) Mimi