I'm just putting this out there since it could have helped me so much when I first began getting symptoms of Trigeminal Neuralgia.
The cause of my TN is Lyme Disease.
Unfortunately, Lyme Disease is often misdiagnosed or undiagnosed, and the ways in which it can affect the body in a variety of over 120 symptoms are unknown to most doctors. They think joint pain and a rash, but in the late stages, it's much more than that.
Less than 30% of people get a bullseye rash, and the test for Lyme Disease catches less than 50% of cases. (the Elisa test). Many doctors are also under the miseducation that a negative Lyme test means there is no disease, and that false positives are possible.
The truth is that negative tests in patients with Lyme Disease are quite common, as it is an immuno-suppressive disease and the test measures the number of antibodies present..which drop the longer you have the illness. The other misconception that a false positive is possible, could not be more false. A positive test always means you have the illness. It also exists in every state in the United States, and has even been noted in Antarctica. You can get it from any vector carrying it, including ticks smaller than a poppy seed, fleas, mosquitoes, horse flies, and ant bites.
Lyme Disease can be a cause of trigeminal neuralgia. It is in my case, and it is in many others as well. Lyme Disease LOVES the trigeminal nerve. It's one of it's favorite places to attack. In many people it just causes slight drooping on one side of the face, but in others, it causes trigeminal neuralgia.
I so wish I had known this. I spent 5 months looking for the cause of my trigeminal neuralgia, not knowing I had Lyme Disease that would later completely disable me, bring on sound sensitivity, light sensitivity, dizziness, 24/7 nausea, and many other severe neurological symptoms. My TN when triggered, lasts about 6 weeks and then gets better for a short period of time(usually 3 weeks) before coming back...not surprisingly, the life cycle of the Lyme Disease bacteria replicates every 6 weeks.
After all I've been through, I believe every patient who has trigeminal neuralgia should be screened for Lyme Disease and the coinfections that come with it (Babesia, Bartonella, Erlychia, Rocky Mountain Spotted Fever, and several others), before being told that they just have to live with their trigeminal neuralgia and try to manage the symptoms.
I'm putting this all out there because I wish the same information had been given to me. I've found myself not only under the suffering caused by trigeminal neuralgia in what are supposed to be the best years of my life, but in a life or death fight with Lyme Disease as well. The earlier it's caught, the better off you are in your prospects for getting better. Even if it's already in late stage, the importance of time still holds true. I had no idea that Lyme Disease could do such things to you, that it's very capable of killing you, and that it so often flies under the radar of doctors around the world.
For more information:
You can watch Under Our Skin, a documentary with further info on Lyme Disease for free here: http://www.hulu.com/watch/268761/under-our-skin or on Netflix
I've copied the symptoms of Lyme Disease below:
Rash at site of bite
Rashes on other parts of your body
Rash basically circular, oval and spreading out (more generalized)
Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
Eyes/Vision
Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes
Ears/Hearing
Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears
Digestive and Excretory Systems
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage
Neurologic System
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Psychological well-being
Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety
Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
General Well-being
Phantom smells
Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature
Allergies/Chemical sensitivities
Increased effect from alcohol and possible worse hangover
I hope none of you have Lyme Disease, but since many patients with Lyme Disease have TN (about 50% of advanced cases in some areas), I know this info could be life changing for some who visit this forum.
If the above symptoms sound like you, it's important to first watch the documentary listed above, and then seek testing with an LLMD. Feel free to contact me if you have questions or need help navigating all of this. It was the help of a stranger that helped ME.
Best wishes to everybody <3
Post edited by: iwantlife, at: 05/23/2012 04:16 PM
