I'm new on here and am curious about the ages of everyone. I'm 22 and I guess that it's more common in those over 50. Any others in their 20s? I'm still in the "medical anomaly" stage where the doctors aren't sure what's going on and we're flipping to new medications constantly. Everything I've read about TN sounds like what's happening and my doctor seems sure that's what it is, even though the MRI was inconclusive, which I'm finding is common on here.
Amen KC re: Striking Back! I can't imagine going through this without it.
Was diagnosed at 38, now 47. I'm so sorry you are dealing with this so young. Hope you find something to give you long-term relief. Meds have worked fine for me up till now. So I'm going for an MVD... something I probably should have done sooner. Best of luck to you!
First diagnosed at 29. Seven year remission and then again at 37--its been a year and a half straight now. Bilateral ATN. Two MRI's and MRA's--no compression showing on either.
I'm sorry that you are going through this. Diagnosis is difficult for many of us. I still don't really have a proper diagnosis...more of a series of ruling other things out. I hope that you find medication that works for you. And don't give up until you get answers. We have to be our own best advocates and seek out the help that we need.
There are actually many people here who are in their 20s, if you look at the groups tab there is a group specifically for that. My ATN started when I had just turned 26 and now Im almost 28. Unfortunately, its common for most of the MRIs and blood work to come back normal (which is frustrating because there is nothing you can point to and say see its real!!) My pain is luckily almost under control due to anafranil, which is a medicine in the same group as amitryptaline. Sometimes it can take weeks for a medicine to begin effectively working so hang in there. There are also many other medications you can try like neurontin, lyrica, cymbalta etc so do as much research as you can on here and be patient because sometimes it takes finding the right cocktail of medications. Having a good support system of an understanding doctor, family and friends also helps. You may also want to try researching a good pain management doctor or neurologist if your not happy with the one your seeing now (look in the doctors tab up top) wishing you all the best and hope you get some relief soon! xx
Im 43,i got my sort of dianosis on Monday,10 months on.I must be one of the luckier ones as some ,if not most go through years of not quite knowing,but then to be fair,mines not a 100 % diagnosis as no issues on mri were found on the trigeminal nerve.Mine was diagnosed purely on what i get,the sensations etc. Also mine wasnt called trigeminal neuralgia,mines called trigeminal nerve pain. Is that different. What is the difference.
I was diagnosed bilateral TN age 29.
8 year remission Right side age 37
10 year remission Left side age 39
42 years young ( feel much older) dealing with severe debilitating pain, no longer work or drive.
Waiting for approval of govnt disability sadly…
I am 37, will be 38 in a month. This stared 1.5 yrs ago for me. I have just been diagnosed with GN and am scheduled to get a MRI with and without contrast of my brain, followed by an appt. with the nuerosurgeon right after. I have to wait another week, but he is certain that is what I have, just have to find out what my options are.
Did you see a neurosurgeon that deals with TN? Someone else on here strongly urged me to get a neurologist/neurosurgeon that is familiar with TN and that was the best advice anyone has given me. I have now been to 8 doctors and even had TMJ surgery just last month...of course that didn't help and was for no reason.
Best of luck. I know you are younger than me, but I feel young to be having such serious pain and this serious of an issue.
I was 20 when the TN started. 35 now. Keep your spirits up and show this €$¥%# some attitude. You may be a medical anomaly, but you are not alone! I have been paying a little attention to it, and there seems to be a number of members who got TN in their 20s or 30s on here. My sister is 28 and has it too, from c. 3-4 years back. Both of us have it in as an effect of cold sores (herpes simplex).
The important thing is that you get treatment that works, so I hope they can at least help with that, your docs, regardless of what is going on. Make sure they understand you are in pain so that they shift their a*s in gear.
Tell your doctors that MRIs are not the main diagnostic. My diagnosis was super simple: a) description of pain and symptoms + full body neurological examination b) MRI (normal) c) diagnosis. I have just had a second MRI, and it is still normal. I am sure they know this already, but it is possible, though rare, to be young with TN, have a normal MRI and not have MS. My sister and I can vouch for that.
I was 17 years old when I first started experiencing TN pain and am now 25. My heart goes out to you as TN is a very hard disease, but sometimes you get lucky and find a medication that helps. I sent you a friend request, so feel free to email anytime.
Im Amanda Im 32 got diagnosed at 30 and also heard your not old enough to have this. I have TN2 on 75 mgs nortriptyline a day with success of painfree days thankyou science!
I'm 26. My pains differ, sometimes it's a general ache that takes over the entire side of my face, and becomes unbearable. Other (thankfully) rarer occasions, I receive electric shocks, for a few seconds over longer and longer time spans. This pain has only reared it's ugly head a handful of times since diagnoses, and has sometimes lulled me into a false security that I will only deal with the general pain, which thankfully isn't every day either.
You are 6 years younger than me which makes you 45. The first man landed on the moon in 1969.
Jamie said:
I'm going to make y'all guess my age. I did this when my students would ask how old I was. Keep our minds healthy and active, right? lol
1. I'm a GenXer. For Example: In college, Nirvana, The Breeders, Pearl Jam {and numerous other new Alternative Bands} were all we listened to and watched on MTV (YES, MTV actually played music videos at one point in time!) Once I graduated college, I had no idea what I wanted to do with my life even though I had a degree that was in demand.
No guesses yet? Ok, I'll go easy on you.
2. I was born the year of Woodstock. NOT AT Woodstock (urban legend that a baby was born there) :-)
3. I was born the year the first man landed on the Moon.
I think I had it going back to my twenties and didn't realize it as I've always had jaw problems. I'm 50 now, but have had ATN for probably about 10 years. Diagnosed only recently. Now taking a combo of Trileptal (which I am being weened from) and Amitril. Still have pain but nothing like it once was. Blessed be...
I am 35. This all started happening to me about a year and a half but it was bearable so I never looked into it. This last time has been excruciating and was diagnosed last week.
My TN was caused due to a congenital birth defect. I had TN tooth related pain just about my entire life, but it was not until I started getting the shocking pains, was two, and two put together, when I was 32. Been dealing with this for 19 yrs.
Jamie said:
saraiderin,
You get an A+++ That's neat that we are close in age. My sister is 3 years older than me. Can't beat growing up in the 70s. On a serious note now, my pain began in Nov. 1999. So I've lived through this too long. When did your pain begin?
Thank you for all the replies! It's crazy that it affects such a wide range of people. Since I posted this question I've been to a chiropractor who told me I have a bunch of subluxations in my neck that could be causing it. He was also super insensitive so I decided not to pursue treatment with him and get another opinion. Not sure if what he was saying was true but he wanted an outrageous amount of money for something I'm not even sure works. I also am on anatriptyline and I have had very little pain since Monday so I feel like it might be working. Fingers crossed!
