User: Login or Register

We comply with the HONcode standard for trustworthy health
information:
verify here.

Stories from Neuropathic Facial Pain and Trigeminal Neuralgia

Patients

All stories are in the patient's own words. They are intended for information purposes only, to supplement a visitor’s general knowledge. It is not intended to replace or in any way supplement or qualify the services of a qualified medical professional and/or other appropriate healthcare professional or their advice.

Patient Art

Disclaimer

TNA (Trigeminal Neuralgia Association) offers personal stories from TN and related facial pain patients, their families, friends, or health care workers. Knowing that others are experiencing the same thing you are, helps everyone feel less alone. You'll find messages of hope, which may give you ideas for different treatment options. You may read about an experience that you had and dealt with successfully and as a result want to offer your support to the story teller. The possibilities are endless and we ask and encourage you to send us your personal story at: stories@tna-support.org.

		Click on each quote below to read full story

	Brent Weichers, TN Patient His Personal Story	That first day it hit me, I literally thought I was having a stroke. You have the attack and the seizure and the blinding pain and you're holding on to what ever piece of furniture you can to keep from hitting the floor.

	Alice Kennedy, TN Patient Her Personal Story	At this writing it has now been 6 months since my MVD surgery. I remain totally pain free. YES!!!! I am totally off TN meds. I still have slight numbness in my surgery area; all other numbness that I experienced is gone. The numbness does not affect any facial movement or restrict me at all. I mention this only to let others know that it exists but is a non issue for me.

	Jon Bell, Patient Update of His Personal Story	Over the past 8 weeks I have had a miraculous recovery from my TN pain - 8 weeks ago, in the middle of a major bout with the TN pain, I scheduled a visit with an experienced neurosurgeon to finally discuss surgical options.

	Lillian, TN Patient Her Personal Story	I had been suffering indescribable face pain for over 2 years. During the past year, the pain had become severe. It was an excruciating face pain and always on the right side of my face.

	Jayne, TN Patient Her Personal Story	Then it came back with a vengeance. For almost four months the pain was so bad she couldn't talk. She had to communicate by writing everything down on a pad.

	Chicago TN Patient Her Personal Story of B-12 and B Complex Therapy	I'm grateful my doctor insisted on the injections back in 1971; he said the vitamins needed to enter the bloodstream immediately to do any good. He had seen this same condition among soldiers in WWII and among mailmen in the U.S. whose faces and heads are exposed to cold weather.

	Mary Anne Fasching, TN Patient Her Personal Story of Gamma Knife Surgery	The last unbearable attack started on June 29th this year and got progressively worse until October 11th, when I just couldn't deal with the pain anymore. My Neurologist said she could not do anything else for me and my life was taken away as I once knew it.

	Brenda Verle Marshall, TN Patient A View from the other side	We all have garnered useful information, support, advice and answers from our local support groups and from TNA. If we are fortunate enough to successfully beat TN, we need to find comfortable ways to help current TN sufferers.

	Ann Barrett Graves TN, My Facial Pain Syndrome and Botox	I am now forty, married and have one young child, a girl. I am missing all the teeth on the left upper palate due to pain. I’ve had ten or eleven surgeries and a bone graft since I was 18. Sometimes I suffered through multiple surgeries in one year.

	Raymond von Drehle His Story with B-12	After 8 years which included 3 MVDs and extensive drug therapy, I cured my TN with B-12 injections. I'd talked myself blue in the face with doctors who steadfastly refuse to believe me. I am 100% certain that this was the cure.

	Roberta Berk Her Personal Story	In 2005, I was let go from my job. Was it because I had to take so much time away from my job, or my age? I will never know. The pain came back even stronger.

	Cathy H , TN Patient Her Personal Story	I was diagnosed after having all my molars crowned, because my dentist told me that the old fillings could be causing my pain, and in the meantime to rub vitamin E oil on my gums for the pain, no pain meds, this went on for over a year, he (the dentist, along with his wife) also told me that it was caused by menopause...

	Angela Griffith, TN Patient Her Personal Story	After a thorough upper cervical exam, the doctor showed me that I had a severe atlas misalignment that was causing my facial pain. After the first treatment, I began to feel a cooling sensation on the right side of my face, and an immediate decrease in the pain level.

	Eileen Sosin, TN Patient Her Personal Story	I was so depressed with pain for years. I hope someone can benefit from this information. I know living with pain is a hellish nightmare.

	Joe, TN Patient His Personal Story	I want to share my story with you all, because after all I went through for 7 years of agonizing pain, literally tens of thousands of dollars and weeks absent from work, I really don’t want anybody else to go through what I went through.

	Lizette Keith, TN Patient Her Personal Story	I was diagnosed with TN April, 2006. I thought at 56 and after experiencing the extremely difficult time after my spouse's spinal cord injury and near fatal accident that I was prepared for anything that life had to deal me. I was not prepared for TN.

	My Father's Story	In May 2004, my father began suffering from pain in his jaw. This pain quickly escalated to excruciating levels, 24 hours-a day. He could not eat, sleep, take a shower, or brush his teeth. Shortly thereafter, he was diagnosed as suffering from Trigeminal Neuralgia.

	Irene Wheelright Her Personal Story	For time being I am managing just fine - actually, I am considering going back to work - much against my husband's will - but, I need a mission!

	Ramesh, TN Patient His Personal Story	I was in pursuit of a permanent cure which does not involve another surgery or more dosage of medication. I found that there are more TN patients in China and they have herbal treatment for this disorder.

	Myron Lotto His Personal Story	On June 15th I did have the balloon compression procedure.Now one month after the surgery I have not had a TN attack.

	It Doesn't Matter What You Call It	Some days it was painful to swallow as well as to chew; I was light-headed and my words often came out wrong. Sometimes I was confused by very simple things. At times I slept as much as I was awake.

	Mother of a sixteen year old daughter who suffers from trigeminal neuralgia and TMJ.	My daughter Lauren has been down an arduous painful road and continues to be hopeful that one day she, like many of the people on this site, will live pain free. Following is a letter that Lauren wrote to me when feeling melancholy and in much pain.

	CJ, TN Patient Her Personal Story	Is my trigeminal neuralgia pain gone? For patients who suffer from devastating disorders of the trigeminal nerve, those six words are a lifeline of hope that we cling to with grateful joy for any remission from this miserable demon.

	Supporting those in pain	Being in pain is enormously fatiguing. Sometimes trying to help others who are in pain can also be fatiguing or even disheartening. The pain demon is relentless and evil.

TN Patient

Her Personal Story

It has now been about 5 years since I have had an attack, not a one since I started the Omega 3! I would say to any sufferer, "Try it, it won't hurt you."

Charlotte McLaughlin

Her Personal Story

My 7th surgery was the Motor Cortex Stimulator implantation. This was done last June. The results have been unimaginable. I have really great days and some not so great but none as bad as they were. I can Control the stimulation.

	J. Elbert Peters His Personal Story about Pectin - Follow-up	For about three months I have been using powdered pectin to relieve my pain from trigeminal neuralgia.

	Jim Zisson, TN Patient and member of the TNA Board of Directors His Personal Story	I think it's fair to say that only a fellow TN sufferer can know the unique combination of incredible pain and emotional uncertainty that are the hallmarks of TN. I don't know of a more frustrating, yet non-lethal chronic pain disease than TN.

	Bill Hare, TN Patient His Personal Story	I am not smarter than the medical doctors who have treated me but I have paid very close attention to the pain and effects of what TN has done to me.


	This IS going to be BRAIN SURGERY My personal account of MVD surgery	Once the decision had been made, the neurosurgeon consulted, and the surgery date scheduled, my thoughts often drove me to near hysterics. I would think of the common phrase “I am having surgery – but it will be okay – It’s NOT BRAIN Surgery”.

	J. Elbert Peters, TN Patient His Personal Story	A little more than two weeks ago at the suggestion of a friend, I started taking a teaspoon full of powdered pectin dissolved in a liquid. I have done this once a day.

	Steve Mc Chrystal, TN Patient His Personal "Stimulator" Story	Following a series of sinus infections, I had surgery on my maxillary sinuses in 1987. Part of the second division of the trigeminal nerve was damaged, leaving me with a ache just left of my left nostril. They said it would go away...

	Tanya Moore, TN Patient Her Personal Success Story	It's wonderful to be able to plan an event and not worry about if the pain is going to ruin the experience. We went camping last weekend and it didn't even occur to me that I might be in pain. I'm getting used to this no pain deal pretty quickly.

	Jon Bell, TN Patient His personal story	One odd-ball kind of thing I use to help dampen the TN pain is to put an ice cube on the "saddle" of skin between my thumb and first finger (on the hand of the same side as the facial pain)

	Sandra, Pregnant TN Patient Her Personal Story	In April of 2006 I found out that my husband and I were expecting our first child. We were both so excited and happy...then the pain came back. I was determined to get through the pregnancy free of medicine.

	Cindy Ezell, TN Patient and former member of TNA Board of Directors Her Personal Story	I opted for the MVD in 1985. The surgery was a success and gave me 7 years of relief. During this time I was able to have a beautiful, healthy baby girl

	Sam, Patient His Personal Story	After months of extreme suffering, TN was expelled completely, and I didn't know why until I read Dr. Joseph Vaughan's article in your TNALERT.

	Scott Johnston, Patient His Personal Story	I guess the moral to my story is: Seek out the best from the start, and don’t ever give up.

	Abby Daya, TN Patient Her Personal Story	If anyone else out there is suffering as much as I was, I recommend that you go for the MVD. I'm sure glad I did.

	Betty, TN Patient Her Personal Story	then it got to the point that I was unable to move, eat, walk, be touched or lay down to sleep due to the bolts of lighting. At that time I contemplated suicide.

	Wayne Little, TN Patient His Personal Story	Late Dec. 2000, I noticed a very light tickling on my right sideburn. After about two weeks I could not touch my upper right lip, was having lightning sharp pains, difficulty in chewing food in normal bite size & some speech problems.

	Patricia Ann Florio, Patient Her Personal Story	During these years I was on treatment, I worked a court reporter in the federal court system in Brooklyn. The judge I worked for called my doctor a quack. And of course, he considered me a nut because I was having this type of treatment. People just don't understand.

	John Taylor, Patient His personal story	I have not had a totally pain-free day in over three decades. But somehow I made a life out of this, and I finished high school, college, was married, had a son, was divorced, and even traveled a little around this world.

	K.C., Patient Her Personal Story	Due to how severe the pain had become I had been on narcotics for several years. These will now be cut down, and completely out of my life, too. I feel at 43 that I have an entirely new life!!!!

	Donald Strome, TN Patient His Personal Story	About five years ago, I began to feel pain in the upper left side of my mouth. Over time, I had several root canals, which did not help to get rid of the pain. Two teeth were removed with no relief from the pain.

	Art Smith, TN Patient An Offer I Couldn’t Refuse	What prompted this incident was, that as I listened to everyone’s story, I realized that while we all experienced the same excruciating pain, each one described it differently. The same was true of our reactions to our treatments.

	Dr. L. D. T., India Personal Story	In India no such good effort has been made yet. Many of the doctors know very little about TN problem.

	Joan, TN Patient Her Personal Story	My husband said I had emotional outbursts and mood swings. I made a mess of our checkbook and my husband tried to fix it but he wound up taking it to our bank to have it straightened out.

	Ally Costellano, 15 Year Old TN Patient Her Personal Story	I had no idea I was leaving a life behind on that Sunday and starting a war. A war with pain, life, friends, family, school, and more.

	Clara Nguyen, 70 Year Old TN Patient	From my recent experience, I’ve learned that acupuncture is a science based on abstract notions. Putting it into practice with efficiency is really the art of the practitioner.

	A Young Man's Personal Story	Sam (not his real name) recently sent TNA a copy of his college application essay. We want to share his courage and spirit with all TN and face pain patients. After reading his history with TN and TNA below, please click on the link to his essay.

	Joan Foster Her Personal Story about Microscopic vs. Endoscopic MVD	My goal is not to exclusively promote either instrument. The decision between microscopic vs. endoscopic MVD belongs entirely to the patient. Instead, I wish to impress upon my fellow TN patients that the most important thing is to choose a doctor with experience and a solid track record with follow-up.

	Martha Bauer Her Personal Story	Like most TN sufferers, I would have done anything to make the pain stop. I am so grateful to find that what I have to do requires so little on my part - no brainstem surgery.

	Ellen Kennedy Her Personal Story with Guide Dogs	The day that I needed help getting up and down the stairs at school, the day I was too blind to navigate the hallways, the day an eighth grader knocked into me and laid me out on the floor, I knew we all needed a helping hand. Or in this special case, four paws.

	John Porter His Personal Story	Fortunately, I was accurately diagnosed pretty quickly by a oral pain specialist on the UCSF dental school faculty and referred to my neurologist

	Sharon Moody Her Personal Story about Upper Cervical Chiropractic Care	Thank you for your newsletters including personal testimonies. These have helped me to determine what is causing my nerves to flair up.

	Ed Casey His Personal Story	It's part of human nature that one and/or family can only be sympathetic to someone for so long. Once my family got your information they understood "a whole lot better."

	Harry Smith, Son of TN Patient Personal Story - Trigger Point Massage	Her history of a car accident 12 years beforehand (suffering whiplash) made me think she probably had latent Trigger Points in her SCM muscle caused from that incident as this had never been looked at before.

	Kathleen Huston Upper Cervical Care	During the three years that I was suffering I tried many different alternative treatments, acupuncture, biofeedback, two different types of chiropractic to name a few. I was ready to undergo surgery and beginning to investigate my options. Then my issue of the TNALERT arrives.

	Karen Wantuck Personal Experience with B-12 Injections	After reading about B12 injections in the TN newsletter, I spoke to a Cuban immigrant neurologist who said giving such injections was a matter of course in Cuba. He gave me the injections, every day, then every other day, then every other week. Within a few months I was pain free and have remained so for a year.

	Suzanne, TN Patient and member of TNA Board of Directors Her Personal Story	Not long after surgery, facial asymmetry started to dissipate. Pain in cheek area is now GONE, pain in ear area is less, facial asymmetry is GONE. Went for shots day after surgery, but not since - no need. Sometimes need pain meds but take less. Am hopeful all pain will eventually go away, but can happily live with this.

	Salt Water Success Story Chris Guthrie, Moonee Ponds, Victoria, AUSTRALIA	Recently she went away for a weekend to the beach with some friends. They went swimming in the surf and my wife tried some body surfing which meant that salt water went up her nose, in her ears and eyes. As well, she says she was thrown around by the waves quite significantly.

	Francie Stark, TN Patient	About the time I started taking Neurontin, I stopped taking Premarin because of the HRT scare.

	Charlene DeNino	This diagnosis that it was not a dental problem and the suggestion to see a neurologist took a period of four long years.

	From Arnold His Botox Story	As other TN suffers know, dealing with the TN pain which is controllable is a challenge; break-through pain is simply impossible.

	From Maxene in California	At the start of my chiropractic treatment, it took almost a year before my TN disappeared completely, but after that I was okay except for the slide I had last summer. The secret for me is keeping C-2 adjusted.

	Elizabeth Cilker Smith, TN patient and former member of the TNA Board of Directors	A generally happy, warm person with a high tolerance for pain, eventually I contemplated suicide. I had no long-term plans. Only agonizing dread.

	June Sage	She rarely eats at restaurants because she believes in natural whole foods including fruits and vegetables with a limited amount of lean meat. She cooks at home to avoid processed food.

	Bridget Kelly	Pain is personal. Pain cannot even be described successfully. Success over pain is ongoing.

	Jan Bailey	I was diagnosed with TN in 1998 and immediately began looking for alternative health care options.

	Joan Foster, the TNA Central Texas Support Group founder and leader.	"What I know now is that if you have TN you need to get to doctors who have a lot of experience."

	Jim Tosetti, M.D., a retired family doctor who divides his time between Colorado and Arizona. He wrote this article for RV Life Magazine.	The pain can move about, with sometimes a low-grade ache or burning background feeling, and then it can attack like a hot poker or cattle prod. People describe it as the most horrific pain ever experienced-I can vouch for that!

	Jennifer Clough, a TN patient from Seattle, Washington -- mother and grandmother, Administrative Assistant for 30 years, and member of TNA Support Group.	"While brushing my teeth, a bolt of lightning exploded in my face. I screamed and threw my electric toothbrush through a window...."

	Marshall, William Pat, MD, TN Patient and former member of TNA Board of Directors --	I was sitting at my computer minding my own business, and out of the blue, without provocation, it returned..."

Stories from Neuropathic Facial Pain and Trigeminal Neuralgia

Patients

Patient Art

Disclaimer

Brent Weichers, TN Patient

His Personal Story

Alice Kennedy, TN Patient

Her Personal Story

Jon Bell, Patient

Update of His Personal Story

Lillian, TN Patient

Her Personal Story

Jayne, TN Patient

Her Personal Story

Chicago TN Patient

Her Personal Story of B-12 and B Complex Therapy

Mary Anne Fasching,

TN Patient

Her Personal Story of Gamma Knife Surgery

Brenda Verle Marshall, TN Patient

A View from the other side

Ann Barrett Graves TN, My Facial Pain Syndrome and Botox

Raymond von Drehle

His Story with B-12

Roberta Berk

Her Personal Story

Cathy H , TN Patient

Her Personal Story

Angela Griffith, TN Patient

Her Personal Story

Eileen Sosin, TN Patient

Her Personal Story

Joe, TN Patient

His Personal Story

Lizette Keith, TN Patient

Her Personal Story

My Father's Story

Irene Wheelright

Her Personal Story

Ramesh, TN Patient

His Personal Story

Myron Lotto

His Personal Story

It Doesn't Matter What You Call It

Mother of a sixteen year old daughter who suffers from trigeminal neuralgia and TMJ.

CJ, TN Patient

Her Personal Story

Supporting those in pain

TN Patient

Her Personal Story

Charlotte McLaughlin

Her Personal Story

J. Elbert Peters

His Personal Story about Pectin - Follow-up

Jim Zisson, TN Patient and member of the TNA Board of Directors

His Personal Story

Bill Hare, TN Patient

His Personal Story

This IS going to be BRAIN SURGERY

My personal account of MVD surgery

J. Elbert Peters, TN Patient

His Personal Story

Steve Mc Chrystal, TN Patient

His Personal "Stimulator" Story

Tanya Moore, TN Patient

Her Personal Success Story

Jon Bell, TN Patient

His personal story

Sandra, Pregnant TN Patient

Her Personal Story

Cindy Ezell, TN Patient and former member of TNA Board of Directors

Her Personal Story

Sam, Patient

His Personal Story

Scott Johnston, Patient

His Personal Story

Abby Daya, TN Patient

Her Personal Story

Betty, TN Patient

Her Personal Story

Ann Barrett Graves
TN, My Facial Pain Syndrome and Botox