Hi, my name is Sue. I have had TN since 2009. I had a tumor removed from the orbit of my eye and they hit a nerve which has caused me to be in severe pain for 10 years. I know why they call it the suicide disease now. Some days the pain will stay around a 5-7 which is painful, but tolerable. When the pain gets to a 9-10 you just want it to end. It’s horrible!
It’s like a knife jabbing you, it’s a burning like a hot charcoal is sitting on your face. Or even broken pieces of glass constantly feeling like they are cutting you. The pains keep coming out of nowhere with no rhyme or reason.It’s hard to eat, sleep, talk, brush your teeth, wash your face, go out in the cold and wind. If my hair hits my face it’s like an electrical shocks hitting me in the face.
What gets me through all this is my family and friends. I try to keep busy so I don’t think about the pain. You also need a good support system. I know I have all of that so I keep going.
My life changed in a flash when I was 19. I was having lunch with my parents when, out of nowhere, I felt the most intense pain I’d ever experienced. My head felt like I’d been struck by lightning, stabbed with an ice pick, slammed into a brick wall and hit by a truck, all at the same time.
It took 20 years to finally get a proper diagnosis, but once I had a name for this monster, I knew I’d do anything I could to help fight for a cure so that, one day, no one else would ever have to suffer like I have.
With the constant love and support of my family, I battle trigeminal, occipital and geniculate neuralgias. I’m only here today because they give me a reason to live. This pain is the most unrelenting, profound and sinister force I’ve ever known. And I want it gone for all of us.
Thank you for supporting the Facial Pain Research Foundation and their critical work to find a cure for all of us.
My journey with the beast of a disease started almost 7 years ago this summer. I suspect it is due to a fall and hard hit to the forehead.
One morning I woke up and it was Occipital Neuralgia, intense itch, then burning all over. 4 weeks later I had extreme burning in right side of face. I went to a general practitioner, he told me he suspected it was Trigeminal Neuralgia. So I went to a neurologist, he confirmed I had ATN. I felt like I’d been gut punched when I googled it. Terrifying info for sure.
I take seizure meds, antidepressants and CBD. I also get Botox treatments every 3 month. For me the Botox and the CBD are what works best.
Thanks, Angela Freeman
How One Day Can Change Your Life…My TN Story
Imagine you are living a perfectly normal, healthy life….Unfortunately you wake up one morning with a horrible toothache, one that you know from your experience is an abscessed tooth. So, you go to your dentist, he confirms, and sends you to an oral surgeon to remove the tooth and replace with a dental implant. Finally, the day of the surgery comes, you’re glad to get it over with, but little do you know that this morning will be the last day (most probably for the rest of your life) that you will wake up without excruciating, life altering pain. The pain is so bad that they call it the suicide disease and is the worst pain known to medical science. This pain is called Trigeminal Neuralgia, and mine was caused by an injury caused to my trigeminal nerve during dental implant surgery. Now, don’t stop reading just cause you have no intention of having implant surgery, because this type of dental injury can occur during root canals, wisdom tooth extraction, and even from a poorly placed numbing injection. I am writing this now, because every day I am seeing many people joining my support group with these type of injuries and I want my friends and family to know it can happen to you.
One of the worst parts of this injury was that my oral/maxiofacial surgeon absolutely denied that there was any possibility of a nerve injury and I believed him. He is a very respected doctor, and is even an ER doctor that you might see if you were in an accident and needed facial or dental reconstruction. When this pain had continued for a month, I went to get a second opinion of my own. The oral surgeon I saw was more worried about whether I was going to sue the other doctor and spent more time covering his butt than trying to diagnose me. Then, my doctor sent me to many of his colleagues for opinions. He even sent me to one of heads of oral surgery for a local well respected college. Luckily while I was there, this guy called in another colleague who did find an infection that my doctor had missed for 8 months but he still couldn’t figure out what was causing my pain. My doctor then had me see infectious disease doctors, and had me scheduled for numerous CT scans, full body scans, nuclear medicine tests, etc…He was emphatic that whatever this was, he didn’t cause it, and he really didn’t believe it to be dental related. This entire time, I am in excruciating pain…imagine the worst abscess ever, which throbs constantly, swells intermittently, and feels like someone is hammering constantly on your jaw bone with a sledge hammer. It got to the point where he tried to make me feel like I was crazy and everyone he sent me to gave me those same looks because of his input. Looking back, and knowing what I know now, it is unbelievable that no one came up with the correct diagnosis. He assured me that he had explored every “weird” or unusual diagnosis out there. If he had admitted that I had nerve damage early on, there would have been steps that could have been taken to increase the odds of nerve reparation.
I finally went out on my own, found a doctor, didn’t take my medical records,and made them start from scratch. I won’t bore you with the rest of my diagnostic process, except to tell you that once I got to my pain management doctor, 18 months after my injury, it took him less than five minutes to diagnose me. Since this injury, my life has changed drastically. The medicines required to manage my pain are horrible, leaving me in a constant zombie-like state. My memory is zilch and I have a horrible “brain fog” which makes normal, everyday thinking a challenge. I haven’t driven in over 9 years and am pretty much home bound. And even with 25 pills a day, my pain is still barely tolerable. Some days it’s still so bad that all I can do is crawl up in a ball and pray for relief. I have seen more than 28 doctors now, including some of the top TN doctors in the country, and there is nothing they can do for me. There is no cure and although there are procedures that can help some of those with normal TN, they are contraindicated for those whose TN is caused by dental injury. There is very little research being done to find a cure for the many types of TN.
I hope you never find that one day that changes your life forever. Before considering any dental procedures, please educate yourself, and talk with your dentist/oral surgeon before procedures. Ask them about precautions they are taking to ensure no damage occurs to your trigeminal nerve. If they don’t know what it is or don’t have an acceptable answer…run the other way. If you are experiencing unusual pain after a procedure, move quickly to see a neurologist to see if treatment can be started to help your nerve heal, even if your doctor denies there is any possibility. And because resources are so few, check out the Facial Pain Association website at FPA-support.org