I started Project Haven as a resource for anyone diagnosed with the condition or any friends or family members of loved ones that suffer from Trigeminal Neuralgia or facial pain.
So what is Trigeminal Neuralgia or (tic douloureux)? It's a disorder of the 5th cranial nerve that causes episodes of intense, stabbing, electric shock like pain in the areas of the face where the branches of the nerve are distributed. So that's the lips, eyes, nose, forehead, upper and lower jaw.
So you feel this intense pain and you were diagnosed as having trigeminal neuralgia. Now what? Well...there is good news and bad news.
First the good. You are not alone, and the disorder is in fact real. You can and will find a physician that will take you seriously and the pain eventually will become manageable.
The bad news is: You will take several medications that will give you several side effects and the meds may or may not help you. There will be daily cocktails of anti seizure medications, Prepare for tingling hands and feet, forgetfulness, unusual coldness from the medication, drowsiness, crankiness, and doctors treating you like a drug addict when you ask for narcotic pain meds because that is the only thing that helps during attacks. Be prepared to attempt to explain your disorder to friends and family and only get blank stares because they can't possibly understand your pain level. Be prepared to fear brushing your teeth, brushing your hair, washing your face, chewing on a particular side of your face, sleeping on a side of your face, a burst of cold air, kissing, certain types of foods and the numerous medical tests that await us.
No one really knows how we got this disease. Some say dentistry work, some say stress. I believe mine came from significant work stress, which is in fact my trigger. My suffering began in 2009 and only recently have my triggers been identified and avoided as much as possible.
But now we must all get together support one another, exchange information, and concerns so that no one feels like they are never alone.
Welcome to Project Haven!