In adjectives the pain is like having bad tooth ache! GET ME A DENTIST FOR IMMEDIATE EXTRACTION kind of pain.permanently in the head….24/7!!!
ATN is an inflammation, demyelination, and sensitivity of the trigeminal nerve, and can spread throughout the nerves of the body…peripheral neuropathy. Mine caused by enviromental toxicity…nasty chemicals in the body.
Not to be unkind, "me", but in 18 years of working with TN patients, I've seen no evidence that TN pain can "spread throughout the nerves of the body". Face pain can become progressive over time, and many patients develop ATN. But trigeminal pain is not the same as peripheral neuropathy and does not cause peripheral neuropathy.
Likewise, the source you linked to perpetuates a careless and unfortunate nickname (the "suicide disease") that I believe does more harm than good. A few chronic pain patients do suicide each year, and that's a tragedy. But the only claimed risk statistics that I've seen are totally unrealistic to what we observe in neurology practices and online support communities like Living With TN. The sooner that nickname passes out of common use, the better.
I don't minimize the pain experience, EVER. But as a part of encouraging hope and personal strength, I try to keep a balance between recognizing its severity on the one hand and avoiding the perpetuation of perceived misery on the other. Chronic pain patients have a lot on their plates already. We don't need to add to that load.
Regards and best,
Thank you for your reply Red. I am just so desperate to find answers and relief.
Btw Red, I trust your opinion, what are your thoughts on Cymbalta with helping type 2 TN?
I've heard from several patients concerning Cymbalta over the years. The general opinion seems to be that it helps a few people, but has serious side effects that may outweigh the benefits for others. It may also not be as effective when used as an anti-depressant, compared to tricyclic antidepressants like Amitriptyline or Nortriptyline. These reactions tend to be highly individual to particular patients, so I'm hesitant to generalize.
I really "get" the desperation thing, Hon. Sorry you're having such a rough time.
Go in Peace and Power
Red and all appreciate your thoughts and ideas please. 5+ years ago I had 6 rounds of antibiotics for eye/eyebrow pain misdiagnosed as sinus infection. & months of eye pain then I got occipital neuralgia in addition to TN and finally got MRI found giant aneurysm pressing on trigeminal nerve. Surgery with stents fixed annie but TN and ON continued and had constant migraines. 60+ meds and zero help, botox helped some but would last 4-6 weeks. A year later neuropathy in feet and knees started and became constant. 3 years later with chronic migraines burning pain in hips and upper arms started and also had urination/bowel/ED and hot flashes start? I had supraorbital and occipital stimulator implanted and cut pain in half! In past month Mayo neurologist/headache specialist (top 5 in world per my pain Dr in St Paul) says I have complex regional pain syndrome and pain Dr thinks central pain syndrome? Both are central nervous system disorders. After reading article above it sounds like me except no toxic chemicals. I am so lost in trying to figure this out but my whole body has nerve symptoms that started with trigeminal nerve and permanently damaged it, which spread to ON and now all over.