Amazon to Support The Facial Pain Research Foundation

It takes millions of dollars for scientists to find a cure.  The world-wide support for The Facial Pain Research Foundation’s six research projects to find a cure for trigeminal neuralgia and related neuropathic pain has grown enormously over the last three years.  Corporations, foundations, scientists, medical professionals, celebrities and individuals have donated their time, money and talents to help our international consortium of researchers.  Much of the momentum is the result of friends with neuropathic pain asking their friends to help.  As a result, Amazon has become a helper to our growing team of supporters.  Please think about your friends and how they can also help us and let us know at This email address is being protected from spambots. You need JavaScript enabled to view it.

Amazon wants to help raise money for The Facial Pain Research Foundation through its Amazon Smile Program. It’s as easy as shopping on Amazon.com, in fact that’s exactly what you do. The Facial Pain Research Foundation is now supported by Amazon.com’s Smile program. The Smile program allows a portion of purchases made on Amazon Smile to go directly to The Facial Pain Research Foundation.

When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization.

If you already have an Amazon.com account

Simply type in Smile.Amazon.com on your browser and login

Click ‘Select and Start Shopping’.

In the top menu bar ‘click the down arrow’ to the right of ‘Your Account’, then click ‘Change Your Charity’ in the drop down list and choose The Facial Pain Research Foundation

Mervyn Rothstein Interviews

 Dr. Wolfgang Liedtke

Wolfgang Liedtke, M.D., Ph. D., is a professor in the Departments of Neurology, Anesthesiology and Neurobiology at Duke University in Durham, North Carolina. He is an attending physician in the Neurology Clinics for Headache and Trigeminal Sensory Disorders and an attending physician in the Innovative Pain Therapy Clinics of the Department of Anesthesiology at Duke. Both as a physician and as a scientist, his focus is on understanding mechanisms critical for pain and inflammation in order to alleviate suffering of patients afflicted by therapy-refractory pain – pain that does not respond to treatment – with the emphasis on trigeminally-mediated pain (trigeminal nerve pain, also head-neck pain), but also other nerve and joint pain. As an attending physician, he has encountered more than 1,500 cases of refractory trigeminal pain disorders, as well as chronic migraines.

The Facial Pain Research Foundation has provided a grant to Dr. Liedtke and the Duke University Center for Translational Neuroscience as one of the Foundation’s projects to find cures for trigeminal neuralgia and related neuropathic pain.  Dr. Liedtke and his group at Duke are exploring how material science and material science combined with cellular engineering can be used to make transmission of neural signals in the trigeminal system normal again.

Mervyn Rothstein, who was an editor and writer at The New York Times for 30 years, now writes the "Stage Directions" column for Playbill.com, and is a former member of the Tony Awards Nominating Committee. His first symptoms of trigeminal neuralgia occurred in 2005.

Dr. Liedtke spoke with Mervyn Rothstein.

MR: YOU ARE BOTH A NEUROLOGIST AND NEUROSCIENTIST.  WHY DID YOU DECIDE TO FOCUS ON PAIN IN YOUR CAREER?

WF: As a junior trainee, I was exposed to pain because of the places where I trained, in Zurich, Switzerland, and in Germany. Programs there were run by expert and master physicians, and I was impressed by how they were able to help patients suffering from chronic pain. And I was also profoundly touched and moved in a very basic human level by the suffering that I saw, and that I could not fail to notice. Seeing how the physicians treated and diagnosed these patients impressed me, and I volunteered to help them from my junior perspective and work with them and do the first interview of the patient. I saw that I could do this pretty well. I have a good feel for it and can communicate well with patients who suffer from chronic pain.

When I shifted more toward basic science in a laboratory setting, I happened to make a discovery that was important and relevant to pain, which was sort of serendipitous because I was aiming much deeper and looking for basic new mechanisms. It turned out that the TRPV4 ion channel, the signaling molecule, which I discovered two decades ago, is a relevant, significant player in pain, also craniofacial pain. We found it expressed in the trigeminal ganglion in small neurons, which meant this could be relevant to pain.

Then, moving to Duke University, for my first independent faculty position, with the lure of being both a physician and a scientist, I decided that pain would be a very appropriate theme for me because it would allow me to practice pain medicine and also move forward my pain-related discovery in the basic science research lab.

WHAT IS THE IMPORTANCE OF YOUR TRIGEMINAL NEURALGIA RESEARCH STUDY AND WHAT POTENTIAL IS THERE FOR HAVING AN IMPACT ON THE STUDY OF OTHER DISEASES AND POSSIBLE CURES?

I’m extremely grateful for the support of the Facial Pain Research Foundation because it enables me to take a project that is at the drawing board stage and has some initial data to it and give it a more solid base under its developing legs.

On the drawing board the imagination was to harness the power of stem cells that we engineer to become a certain type of cell that will help to function as an anti-pain generator and get that specifically engineered cell close to a key anatomical site of the trigeminal system, the cisternal trigeminal nerve root, which is the target of the well-known microvascular decompression operation and is also the target for the gamma knife radiation procedure [two medical methods of eliminating or alleviating trigeminal neuralgia pain]. Rather than operating or radiating we propose to bring cells close to the nerve root and engineering the cells so that they function anti-pain, so that they secrete and produce natural anti-pain modulators. By forcing them to reside close to the trigeminal nerve root, they will calm down and bring down the excitation level and inflammation level in the nerve root and in the entire trigeminal system.

And in positioning these cells right next to the cisternal trigeminal nerve root we will use a material that functions as a holding device. The cell-holding device we will also accomplish what the traditional, good old-fashioned microvascular decompression accomplishes, which is to protect this critical part of the trigeminal system against mechanical injury.

In a parallel approach, while we move forward with “encaged” cells, we will also try to take advantage of a new nanomaterial [material made up of building blocks that are at the nanoscale] that I have done work on previously through my collaborative network here at Duke University, where we have material scientists and chemists and we harness the novel advantageous properties of a model carbon nanomaterial to use as a shield/ wrapping material for the trigeminal system. It could be described as facilitating a neuro-protective environment.

These are the two approaches I’ve articulated and for which I’ve received support from the Facial Pain Research Foundation and which might have significant implications for other types of pain. These approaches could be applied to other nerves that were injured, resulting in nerve pain, for example a lumbar root of the sciatic nerve, the cervical nerve roots that supply the arm or other peripheral nerves (sciatic, ulnar, median). Both methods are translatable to these other types of neural injuries.

WHY HAVEN’T SCIENTISTS COMPLETED THIS RESEARCH YEARS AGO? WHEN SOMEONE ASKS YOU WHY DIDN’T YOU START THE RESEARCH MANY YEARS AGO HOW DO YOU RESPOND?

The conception of these ideas is based on the thoughts and fantasy and imagination one has but also on new theories or other findings that are sprouting up within the field, what you read and what you hear at conference meetings. Microvascular decompression works in a number of patients, not in all, and it has other issues involving it, so I was certainly not the only one thinking about trying to upgrade or make it more contemporary, more focused. What I’m proposing is based on relatively recent findings that I hope to take advantage of. So these ideas weren’t possible before these new findings were made public.

YOU SEE PATIENTS IN PAIN EVERY WEEK.  DO YOU REALLY BELIEVE THAT CURES CAN BE FOUND FOR THIS DISORDER, WHICH IS OFTEN CALLED THE “SUICIDE DISEASE”?

I strongly and profoundly believe that transformative steps can be taken to deal with this form of pain. It depends on the definition of cure. There is the possibility of a so-called miracle cure, where something is done and the patient is totally cured – the pain is out of the life of the patient who was tormented by trigeminal neuralgia. But the miracle cure is harder to accomplish than a decent and what I call a transformative level of pain control, whereby pain is reduced to a level where patients can lead a normal life again, can participate in life and deal with the remaining amount of pain disturbance that the disease still poses. I believe that is something we can accomplish through implementing and translating research for more and more patients.

WHAT ARE THE BIGGEST OBSTACLES YOU FACE IN TRANSLATING YOUR PRECLINICAL FINDINGS TO THE CLINIC?  WHAT ARE SOME OF THE WAYS YOU HOPE TO OVERCOME THEM?

We live in exciting times.  We have so many tools at our fingertips. If only we had the money. That is one obstacle – availability of funding to realize our ideas – not just bold ideas that lead to brave new experimental approaches on the laboratory bench but also something is translatable, and is equally daring or has a decent chance of leading to dramatic advances.

Also there are administrative and so-called red tape obstacles that would not cost a lot of money to overcome - rewriting or redoing the complex rules that govern the scientific research game and especially the rules governing translation into new treatments that will be available to patients. Scientists and doctors can make their voices heard, but this is an involved national and international decision-making process where our views are of limited impact. I am enthusiastic that the Facial Pain Research Foundation is becoming partial to the ways of how to revisit and reform the process.                                           

THE FACIAL PAIN RESEARCH FOUNDATION IS MOVING FORWARD WITH A SENSE OF URGENCY TO FIND CURES FOR TRIGEMINAL NEURALGIA AND RELATED FACIAL PAIN.  WHY HAVE YOU LINKED YOUR EFFORTS TO SUCH A NEW ORGANIZATION IN THE FIELD OF PAIN RESEARCH? AND HOW IMPORTANT IS THE FACIAL PAIN RESEARCH FOUNDATION TO YOU AND YOUR WORK?

I feel privileged and I’m very happy about this association. They are like-minded people. I intend to go after this disease. I attempt to accomplish this goal of transformative change of treatment effectiveness through novel engineered treatments. That is my mantra. And there is nothing hollow about it. Every single letter of that is true to the core of who I am as a professional.

So with that, I notice that the Facial Pain Research Foundation is managed and is driven by people with whom I have zero disagreement in that respect. I am so happy and so proud to be a part of it.

A Corporate Story

Suzanne N. Grenell, MBA

Trigeminal Neuralgia — Neuropathic Facial Pain 

Who is Suzanne Grenell?

I worked for Intel Corporation (headquartered in Santa Clara, California) for 23 years in worldwide positions.  Intel is a diverse international technology company embracing all countries and cultures, believing diverse teams and talents create better results.  Intel invented the computer chip in your computer and phone and is inside just about everything else to power technology.  Over time, technology continuously speeds up and keeps opening up new doors for constant innovation and new solutions.

 Suzanne Grenell Intel Positions Include (Examples): 

Responsible for collecting data from top customers worldwide and driving company improvements for top customer issues across all sales channels.

Helped to build the foundation of Intel's culture and values, including creating strategies and tools for constant continuous improvement within and across groups. Company values include customer orientation, results orientation, discipline, great place to work, quality, risk taking. Measured on how well we perform to values.

Created and drove "cycle time" improvement (improving speed to market from product conception to customer plus other critical "cross-function" company processes). 

Known (and formally rewarded) for being able to take a concept and make it a reality. 

During this time, I remember the specific moment I realized something was wrong with me.  I was now in my early 40s.  Suddenly out of nowhere I felt what can only be described as a very sharp “attack” on my face.  I had no idea what this was and my very long journey toward diagnosis took five painful years!  I was shuffled from doc to doc and “specialist” to “specialist” and even to my dentist but none of these docs had a clue as to what this could be.  Oh really?  I thought.

While working, I prayed and hoped that when I had to present a presentation I could talk ok.  I shouldn’t have to worry about this, should I?  But, at this time, I still had no idea what it was so I was actually gambling on whether whatever I had wouldn't throw me to floor just walking down the hall.

Also during this time, I fought breast cancer twice — once in my early 40s and then again in my late 40s.  So now here I was.  Fighting breast cancer twice along with something not yet diagnosed but extremely painful = having to deal with both at the same time.  Just wonderful.  And I still was not taking any time off from work.  Not that this was smart.

Finally Diagnosed 

After returning from an overseas business trip with now not being able to eat or talk resulted in my Dad witnessing this and then immediately taking me to the Mayo Clinic Scottsdale Arizona where I was finally diagnosed.

“Suzanne, you have Trigeminal Neuralgia.”  (Doctor)

 “I’ve never heard of it and how do you spell it?”  (Suzanne)

 What is Trigeminal Neuralgia?

Trigeminal Neuralgia (TN) is the most severe pain known to a human.  It is an ancient worldwide disease which can suddenly and persistently attack people of all ages.  It is a disorder of the trigeminal nerve, our fifth and largest cranial nerve with 3 facial branches.  TN usually impacts one side of the face in one of these branches. This disorder is chaotic, unpredictable, progressive and even dangerous since it is very difficult for people with TN to function without throwing themselves on the floor.   For just one example, I could not even turn my head on a pillow while trying to sleep without setting off another vicious attack. This pain is chronic, severe, and similar to lightning bolt shocks going off randomly inside of your head.  Could you think of a worse torture?  No.

AND people with TN generally do not get any sympathy because:

“You look just fine.” (family and friends) 

“Well, this is because you can’t see inside of my head.”  (Suzanne)

This horrible disease is also called The Suicide Disease because, for some, they feel the only way they can control their pain is to kill themselves and there is a long history of people we know who have done this. Current treatment options have not changed for over 50 years and every one of these options is still only a “band aid” and not a cure.

The meds stop working (as if they ever did) and there is no med strong enough anyway to completely knock this out.  Meds cause all kinds of problems and side effects of their own.  They do work for some but not for others without changing the med over and over for years and years.

Treatment: 

At this point, I had to explore and become knowledgeable about treatment options for something I knew nothing about. I found out there are several “band aid” options available to choose from with anyone who has been formally diagnosed with classic TN.  The problem is …. as “band aids" they might work and they might not.  If they work, these procedures might last and they might not. The riskiest of these options is microvascular decompression (MVD) brain surgery.  There is a tiny blood vessel wrapped incorrectly around the trigeminal nerve and the surgeon goes into the head to find this tiny disorder and then puts something in-between the nerve and the blood vessel so they do not touch anymore.  The random touching of the nerve and the blood vessel is what causes the unbearable unpredictable pain.

I really (of course) did not want to have brain surgery — sounded risky to me.  So after being formally diagnosed I actually waited another eight years (on meds I hated which didn’t work for me anyway) hoping, hoping, hoping someone would come up with something else.  But no one did. 

So (since pain left untreated can continue to get worse) I decided on the risky approach.  With me, this could not be seen on an MRI at that time.  So I agreed with my surgeon, Dr. Richard Zimmerman (Mayo Clinic Scottsdale Arizona) to do exploratory brain surgery to see if he could find it and if he could not — "don’t damage the nerve just sew me up.”  But he found it and I woke up in intensive care and all pain was immediately gone except the 3 bolts that held my head in place during surgery were now giving me a 3 day headache.  But that’s it.  I have been pain free since 2004.  Around 13 years of total TN suffering and then God and my surgeon rescued me … but, still, this could only be temporary.   

Enter: The Facial Pain Research Foundation 

https://facingfacialpain.org

The Facial Pain Research Foundation (headquartered in Gainesville, Florida) supports scientists worldwide to research and work on innovative ideas and approaches TO FIND A CURE for Trigeminal Neuralgia and other neuropathic facial pain.

The founding Trustees in 2010 were Myron A. Hirsch, P.H.B, Roger L. Levy, Esq., LLM, AIFA®, Michael Pasternak, PhD. Michael Pasternak has been President of The Facial Pain Research Foundation since 2010.There are currently 9 foundation Trustees worldwide.  95% of money raised goes to the scientists.  Our goal is to find a cure for TN by the end of 2020.   This is a non-profit all volunteer organization with volunteers all around the world raising money to help top worldwide scientists find a cure for the most severe pain known to a human.  We are accelerating the world of pain research.

Why Did I Volunteer to be a Trustee?

We need a cure right now.  

We can’t wait or ignore this any longer.

I’m sick of seeing people suffering.

I’m sick of seeing people dying.

We’re not putting up with this anymore. 

We need leaders and I want to help.

Will you help?

We are making new startling treatment progress exploring

innovative challenging areas of focus.

Scientists are smart, running, committed.

Watch our space.

 Suzanne N. Grenell

Scottsdale, Arizona USA

First Published Jan 7, 2011

Lucia Notterpek Ph.D, leads Florida researchers who are focusing on damaged nerve coating as key to finding a cure for trigeminal neuralgia

Lucia Notterpek and Douglas Anderson at Facial Pain Research Foundation

Board Meeting January 7, 2011

One known culprit behind the piercing, repetitive pain of trigeminal neuralgia is damage to myelin, the waxy coating that insulates nerve fibers against electrical signals that are transmitted from cell to cell. Loss of myelin on the trigeminal nerve causes a short circuit that results in facial pain.To define how myelin defects cause havoc in the nervous system, University of Florida Neuroscience Professor Lucia Notterpek, Ph.D., is leading studies of myelin biology and disease. She is addressing basic questions about healthy myelin, which is vital to the normal rapid movement of electrical impulses through the nerve pathways, and about various nerve disorders, including hereditary demyelinating neuropathies, which result from myelin defects or deficiency. She seeks information that will aid the development of ways to repair or rebuild myelin in order to cure trigeminal neuralgia and other demyelinating diseases.In one project, she is carrying out experiments in mice aimed at defining the role of myelin-producing genes in nerve disease, and in another more clinically oriented study, she is evaluating the effectiveness of various pharmaceutical compounds designed to protect nerves. New and better compounds are urgently needed for trigeminal neuralgia, since all medications currently prescribed for this disorder have side effects ranging from bothersome to intolerable.

“We’re finding genetically altered mice are a very good model for investigating myelin damage,” said Notterpek, who also chairs the Department of Neuroscience at UF’s College of Medicine. “We have a known genetic defect—specifically a deficiency of the peripheral myelin protein 22 gene that is linked to myelin damage. We can induce temporary nerve compression that mimics the condition in classic trigeminal neuralgia, and we can measure sensory response in the animals. Later, after sacrificing the mice, we can analyze the status of the nerves at the molecular level.” Co-investigator, Andrew Ahn, M.D., Ph.D., an assistant professor of neurology, neuroscience and anesthesiology specializing in the treatment of headache and facial pain, has expertise in assessing pain behaviors in mice. By measuring behavioral responses to mildly uncomfortable stimuli such as heat, researchers can detect abnormal pain behaviors in mice in comparison to responses by healthy mice. Ahn said the sensory responses observed and measured in mice cannot be directly equated to human pain, but a series of behavioral approaches aimed at analyzing the animals’ sensitivity to various physical stimuli can be used to approximate various aspects of pain in humans.

Currently, Notterpek seeks to figure out how the PMP22 gene normally works to help produce myelin, and what happens in disease conditions to cause this gene to get stuck in nerve cells rather than traveling to the myelin sheath where it is needed. She refers to this problem as “mistrafficking or abnormal expression of genes, like a traffic jam in part of the nervous system.”

She said daily, repeated observations of mice with known myelin defects reveal a puzzling observation: under the same testing conditions using the same type of stimuli, some of the mice show hypersensitive responses that indicate discomfort, while others show delayed sensory response. In a testing procedure now well-practiced in the UF lab, mice are placed in a clear box while a researcher shines a warm light on their feet, creating a situation similar to walking barefoot on hot sand. The hypersensitive mice move their feet within two to three seconds, while other mice don’t seem to be bothered by the warmness of the light for longer times. The responses of the animals are monitored and recorded by a computer for subsequent analysis. Notterpek said correlating specific gene deficiencies or gene abnormalities to myelin damage and to indications of pain requires long, tedious research that can involve behavioral assessments in hundreds of mice.

In previous studies that resulted in two published papers, she discovered that mice generally have to reach a certain age before they show signs of myelin deterioration—similar to the way TN most often affects people over age 50. Now she and Ahn are investigating how myelin damage in different parts of the nervous system may result in different levels of discomfort. They note, for example, that longer nerves such as those in the hind legs are more susceptible to damage than the shorter nerves.

Notterpek also is testing a hypothesis that the peripheral nerves in mice with PMP22 gene deficiency are more sensitive to injury, and require little provocation to initiate myelin injury. She seeks to determine the least amount of nerve damage needed to trigger loss of myelin in normal mice, and in mice that are deficient in the PMP22 gene. At the close of each study, the mice are sacrificed, and the nerve is removed and examined microscopically to assess the status of the myelin. The researchers also measure the levels of molecules involved in both the myelin sheath pathway and the pain pathway.  

In parallel studies supported by a grant from the National Institutes of Health, the UF team is testing specific nerve-protective compounds—one well established drug and others newly developed. Through a new pilot study, they are beginning to investigate additional commercially available compounds and dietary supplements that may affect the pathways believed to be important to normal myelin formation. They are just starting to test the effects of these compounds on cells that make myelin.

Notterpek’s myelin research is funded in small part by the TNA-Facial Pain Association, which has its national headquarters in Gainesville. She and Ahn currently carry out the TNA-FPA-supported research with one lab technician and the help of non-salaried students on scholarships. They hope to publish the first major manuscript on their findings in 2011.

Although Notterpek has only been at UF for 11 years, her studies of myelin damage and myelin restoration began almost 20 years ago while she served as a research assistant at the Gladstone Institutes of the University of California San Francisco. After entering the doctoral program in neuroscience at UCLA, she completed her thesis on a topic related to multiple sclerosis. She earned her Ph.D. in 1994, followed by a five-year postdoctoral fellowship in neurobiology at Stanford University. Coincidentally about this time, neuroscientists first identified the PMP22 gene and several other genes that play a role in eroding or chipping away myelin from nerves.

While at Stanford, she became involved in a project aimed at determining more precisely how the PMP22 gene may be implicated in myelin injury. When she left Stanford in 1999, she took this project to the University of Florida where she has been working on nerve damage ever since. Her large research program is aimed at translating discoveries in the mice to applications in patients with trigeminal neuralgia and with hereditary demyelinating neuropathies. In both conditions, damage to myelin disrupts the normal transmission of nerve impulses.

Eminent Scholar Douglas K. Anderson, Ph.D., who formerly chaired UF’s Department of Neuroscience and who supports plans for Notterpek’s research, suggests several approaches to myelin repair might be tested in the myelin-deficient mice. One approach would involve patching the demyelinated region of the trigeminal nerve with myelin-producing cells derived from adult or embryonic stem cells, or with the patient’s own Schwann cells, provided these cells do not carry a genetic defect that produces unstable myelin. (Myelin is made up of Schwann cells.)

Anderson also proposes, “Gene therapy might be used to deliver genes that produce endogenous factors known to control pain and/or to knock out genes found to be involved in causing pain. With this approach, it might be possible to manage the pain of TN without actually repairing, or even identifying, the defect producing the pain.”

Anderson is a trustee and scientific advisor for The Facial Pain Research Foundation, who is helping to establish its international consortium of scientists working to cure nerve-generated facial pain. He is internationally known in scientific circles for his development of the first effective medication for acute spinal cord injury and for his pioneering studies of embryonic tissue transplants to halt complicated wounds associated with paralyzing spinal cord injury in people.

Carter & Cheryl Orlet

How Cheryl Orlet and Her Family Cope

With Trigeminal Neuralgia

By Kathleen Sweeney

Cheryl Orlet is an amazing mother of three, two boys and one girl, of which one of the boys and the girl are twins. Although she is a TN Warrior, as we call them, she still manages to attend almost all of their soccer and baseball games and competitions. Her daughter is a dancer and when she is competing Cheryl tries to fix her hair and her makeup but her hands shake too much to do it. Other mothers help out by telling her to sit down and let them get her ready. It is this kind of support that carries her through. “The noise at those competitions is just so loud! I sit there just trying to smile for her. I put on a brave face. I don’t want her to see how much pain I am in. I have amazing friends who help me out so much.” But she worries that her suffering is affecting their childhood. Her deepest concern is that she is somehow robbing them of the carefree years all children deserve. They worry that their mom isn’t feeling well and that they might be making too much noise or are disturbing her in some way, causing her pain to worsen.

It all started seven years ago in 2011. “I was having an ungodly amount of pain that I think I stayed awake with for four days straight … just crying.” She could not get relief. She went to the emergency room and they sent her to an ENT doctor who sent her to see her dentist. Everything came up clean there so they sent her to her primary physician. As she told him “… there is this invisible line drawn down the middle of my face. The right side is just – I’ve never ever felt pain like that before. Even after having gone through two C-sections and having root canals done, I’ve never been in so much pain.” He told her it sounded like Trigeminal Neuralgia and referred her to a neurologist who gave her so much medication that she couldn’t function … and he just kept upping it. So she quit him. She finally found one she really liked and he gave her trileptal, which has minimal side effects. She wasn’t as groggy and tired. It allowed her to function. As she says, “The most important part for me is, I can suffer …  and put up with a lot, but I hate anything that takes away from my kids.” She doesn’t want to miss out on anything that happens in their lives.

Cheryl is a registered nurse. “The absolute worst thing about this disease is that not a lot of people are educated on it. … When I was in nursing school we literally learned about it for five minutes. It was a paragraph in our book when we did the section on neurology.”

Whenever Cheryl has to go to the emergency room and tell them she has trigeminal neuralgia they tell her they can’t find it in their system so they put her under headache or migraine. “It’s not a migraine. It’s the most ungodly amount of pain you could ever imagine. Some of them look at you like you’re a drug seeker, just there to get a fix. I am there as a last resort!”  On one particular day there was nurse who saw her and said she had never heard of trigeminal neuralgia but had just had someone else come in with it. She said they were asking for dilaudid, an opioid, and she wondered if that was a reasonable request. Cheryl responded “This pain is real. It is real!” The nurse was just amazed that she had two patients there with TN and she had never heard of it before. It is in these situations that she tries to raise awareness. “It needs to be made more aware. I love raising awareness for it. I just hope some money starts going to it.”

After three years of living in pain she decided to try surgery. She told her husband “This is how bad this disease is. I am so desperate I am willing to go into brain surgery.” But she was excited because she thought this could be “it”! On September 15, 2014 she had micro vascular decompression surgery. They found that an artery had adhered itself to the nerve. The surgeon was able to scrape the artery off of the nerve and then he put a Teflon pad around the nerve so that another artery wouldn’t or couldn’t do the same thing. She was supposed to be there for three days but was actually in the hospital for 10 days overall (3 days in ICU) with complications.

Her children came to see her after her surgery and she was asleep when they arrived. She awoke hearing her daughter crying. She was staring at the staples in her mother’s bald head behind her right ear. She said “Mommy are you OK? Are you going to be alright?” Although they had talked about it beforehand you just can’t really prepare children for such a thing. Her oldest son didn’t know what to think about it so he wrote his story (his version of her story) for a school project, which helped him to cope. He won First Prize and his story will follow this one, for you to read. He was in fifth grade at the time.

When Cheryl got home from the hospital she had about three weeks of relief. “A little bit of relief” is how she describes it. She was highly medicated and recovery was “just awful. Every time I sat up I would throw up.” Her symptoms returned and at times she thinks her trigeminal neuralgia was worse since she had the surgery. When I asked if there were any benefits at all she responded “No.” She has Type II, which means the pain is constant. And at times it is even worse. Washing her hair, her face, combing her hair, drinking, sweating, all increase the pain. And then there’s all the medicine. She can’t eat yet it makes her gain weight. She hops on the treadmill to work out which starts her sweating and then the sweat rolls down her face.

She started taking trileptal in 2012 and it was new to her. She has had success with it but she also needs baclofen due to her inner ear pain. “The pain is just so deep. Right between my inner ear and the roof of my mouth.”

But again, what makes the pain that much worse is the way it affects her kids. They pick up on how bad she is hurting and it hurts her to know this. When it gets really bad her right eyelid swells shut. Her children will ask “Mom do you need me to get you a heat pack?” or “Can I get you something?” “Do you need anything?” The worst is when they are kids being kids. Her twins will be jumping around and all of the sudden they just stop and freeze. They turn and say “Oh mommy. Is this making your head hurt?” Or when her daughter who has asthma gets coughing hard and makes herself stop to apologize. “Mommy, I’m so sorry. Is this coughing hurting your head?” Cheryl tells her “You are a little girl with asthma. Don’t worry about me. I’m the mom. I need to be worrying about you. Don’t worry about anything you do. I’m worried about you.”

One day she passed out at work, the pain was so horrible. She collapsed and they sent her to the hospital. Her neurologist thought a University doctor might see something he didn’t or have some idea of something else that might work … just to get his opinion and see if there was anything they hadn’t tried. He was good (they said the best!) but when he saw her chart he told her she was on what she needed to be. That her best bet was pain management and since there is no cure so, basically, this is your life. Just go day by day with the pain management drugs. When she went back to her neurologist because she was having more symptoms she was told she was no longer a patient since she went to another doctor (whom he recommended). That was quite a surprise to her as she found herself without a neurologist to work with. He general doctor has since taken over and doses her trileptal. He works with her; he believes her pain and he has become a good friend. But she still can’t believe the other one just let her go after all they had been through together.

For Trigeminal Neuralgia Awareness Day on October 7, 2015, the Belleville News Democrat newspaper did a story on Cheryl. It is in a bigger town next to hers. She just really wants to raise awareness! She sells shirts with Trigeminal Neuralgia on them and donates the proceeds to the Facial Pain Research Foundation. She also wears them so people will ask her what it is so she can tell them about it and that she sells them to raise funds for research. She has had people stop and say to her “I have that too.” She loves to raise awareness of it.

Her husband has been a colossal help. She hasn’t done the laundry in at least six years because it is too painful to bend over. When he would have a headache or a toothache he would ask her “Babe, how do you do this every day?” Now he just asks it out of the blue. She says “You do what you have to. It affects every single day of your life. There’s just not a day without pain. It’s ‘How bad is it going to be today?’ ‘Is it a day I can even get out of bed?’ Or is it I’m going to be in the middle of doing stuff and I just have to get through that. Luckily I have an awesome support system. … I think if it wasn’t for my family there would be a lot more days in bed.”

Although Cheryl has tried acupuncture and a number of other things, people always seem to have some advice to give of some thing new she should try. She says she is scared to try anything because she doesn’t want it to get worse. She can’t imagine being in any more pain than she is in now and she is not willing to take that chance.

She worries that she is stealing her children’s childhood; that her pain is affecting them in some negative way. “You just try to be as happy as you can and not let your kids see the tears. They worry about me so much and I don’t want them to. I want them to just be happy kids and not tell their friends when they come over to not be too loud cause ‘I don’t want to hurt my mom’s head.’ I don’t want that. I don’t want them to look back on their childhood and say ‘my gosh, mom was sick all the time.’ She never used to miss anything but this past year has gotten so bad that she had to miss things. Her children say “I get it. I get it Mom.”

“Luckily I have a job where they are understanding. I’m an administrative nurse. I do scheduling and a lot of paperwork and just make sure that all goes well. I’ve been at my job for 20 years. I started in the kitchen and I worked my way up to Nursing Director. If it wasn’t for them I wouldn’t have a job. They know when I’m not feeling good. They’ll say ‘Go home! Go work from home.’ There are some days I can’t even sit upright in a chair.” When she thinks “I can’t do this anymore” she recalls how “I busted my ass to get through nursing school. It was HARD. I haven’t been doing all this work for Trigeminal Neuralgia to rob me of my medicine career. Something I’ve been wanting to do forever.”

When asked what she would say to someone who just had that jolt of pain for the first time she said first to find a medicine regimen that works for you. Don’t be afraid to stand up to your doctor. If you can’t find agreement with him or her find a new one. Definitely join a few support groups on Facebook. Get involved and raise awareness.

“By all means possible take the negative and turn it into a positive.”

Carter’s First Prize Story in Fifth Grade

            Webster's Dictionary defines "incurable" as "not likely to be changed" but my life and my family's life (especially my mom's life) has changed in so many ways in the last 5 years. My mom has a rare and incurable disease called trigeminal neuralgia and this is her fight and our family's journey.

This all started one morning when she woke up. When she woke up she had horrible facial pain. She tried taking medicine like ibuprofen and Tylenol but nothing helped. After a couple days she still had pain so my dad took her to the ER and the doctors just didn't know what to do. They decided it would be best for my dad to take her to the ear, nose, and throat doctor. I was very confused why they weren't just taking her to another hospital. During this time I was just ... confused. I barely knew what was going on and why she was having this pain. When she came home from the doctor they said that she needs to see her dentist.

That evening she got into the dentist. After examining her he determined that there was no problem with the gums or teeth that would cause her any pain. The dentist said that she just needed to go see her doctor. She has seen him for many years and she trusts him.

The next day my mom was able to get in to see him, my mom explained to him that she was in such bad pain she couldn't bear it. She described her pain to him and she said "if you drew a line down the center of my face, it's the entire right side of my face that is in horrible pain, especially the inner ear and the roof of my mouth". She then went on to tell him about how she couldn't sleep and walked around our house at night because she couldn't sleep because she was hurting so bad. He looked at her and said, "I'm afraid you have trigeminal neuralgia". They talked about different medicines she could take to reduce her symptoms, there is no cure for the disease but there are medications that can reduce some of the pain and other symptoms such as relaxing the nerve. He prescribed medicine for her that people with seizure disorders take. He told her that she should try to find a neurologist. Prior to her first visit with her new neurologist my mom was admitted to the hospital for some pain management. During her hospitalization, she was given steroids and pain medicine and she finally felt some relief.  She remained in the hospital for a few days and she was released with orders to see a neurologist.

Within the week my mom went to see what would be the first of 6 neurologists. All the different medicines he was trying with her made her very tired and it was hard for her to do anything and she slept most the time. Every time she told him that she was in pain he increased her medications. After going back and forth with that doctor many times and disagreeing about treatment my mom went to look for another doctor. The next doctor she saw suggested she have a treatment done called "gamma knife" this is a very precise radiation treatment that is focused on one small area. The doctor wanted to do this treatment to directly access the trigeminal nerve to attempt to numb the pain or at least decrease it. After a lot of testing they said she wasn't a candidate for the gamma knife treatment. It seemed like she would get so excited only to be disappointed, sometimes it was hard to see her so upset. This doctor referred my mom to another doctor across the river.

I remember my mom came home very upset from this appointment, the doctor was very short with her and would not listen to all of her symptoms. This doctor wouldn't give her time to tell her story and he pretty well just blew her off and wouldn't allow my mom the chance to speak. He did at least order an MRI to look for any abnormalities which came back

OK and that was frustrating also, she didn't want anything bad to show up but she did want some answers. So that was another doctor gone which left her with no doctor.

There were few other neurologists that she saw that were also one­appointment doctors. Even though all this was so frustrating she was always happy. Between Mid 2013 to August 2014 my mom was in the hospital about every other month. These times were the hardest and I would miss my mom so much. We would go to the hospital to visit and dad would say "I know this is hard guys but please don't cry in front of your mom it may upset your mom more" and when we got to the hospital we could tell mom was being strong even though I could tell she was in pain and was missing us. Mom would smile, hug us, and ask about our days and school and our activities. It was hard not to get sad or scared when I saw the IV's and monitors hooked up to her.

One good thing did come from all these times in the hospital, she found a really good neurologist and she really liked him. He helped her find new medications with few side effects which was good for us because she wasn't as tired and could do more stuff with us. After many more times in the hospital, he introduced my mom to a neurosurgeon he worked with. He was also very nice and wanted to help, the first time he met her he said, "don't cry I'm going to help you". My mom came home excited that she had found a doctor that would help. In august 2014, after being in the hospital again, she decided to go in and have brain surgery.

According to my mom what the doctor was going to do was to go into her skull and the brain and look at the nerves that come out of the spinal cord and look at the trigeminal nerve and see what was going on. The doctor would look and see if there was anything touching the nerve and if there was he would move it away so the nerve wouldn't be affected and that would hopefully stop all the pain.

The surgery was very scary for mom but just as scary for me and dad. Bradyn and Caitlyn were too young to understand. Just hearing brain surgery is scary, mom and dad tried to act like it wasn't a big deal. My mom was supposed to only be gone for three days. My brother, sister and I stayed at my grandma and grandpas house. They tried to keep things as normal as possible like there was nothing going on but we missed mom, dad, our pets and our home. Mom and dad ended up being gone for 10 days, we got to see her one time while she was at the hospital. We walked into her room and it was really scary for us, she was hooked up to all kinds of wires and tubes, they had shaved part of her hair off and there was a row of staples in her head. We were very nervous to go by the bed but so happy to see her. She was happy to see us but she was in a lot of pain. My mom's nurse and pain management doctor had heard so many stories about us that they had presents ready for us, they gave us a bag with candy and a book that had an invisible ink pen, her doctor made us balloons with smiley faces made out of the gloves that the doctors and nurses wear. I felt better about my mom being there after seeing how nice the people were that were caring for her.

When my mom came home she was having a very hard time, her pain was still very bad, she kept telling us that it was going to be okay because she was getting better. Mom spent about two weeks in bed before she could start moving around the house. It was so great having her home because even though she was in bed we could see her every day. So many people were helping us out, I couldn't believe all of the people coming by to bring us dinner and they always brought dessert too! Mom and I would watch movies in her room even when she was not feeling well, just had to make sure not to move the bed too much because it would hurt her head too much. It was a hard time but we were doing good because we were all together, we were just ready for her to feel better and get back to how she was four years ago.

I am sad to say that never happened, mom even says sometimes she thinks the surgery actually made it worse. My mom saw another neurosurgeon to see if anything else could be done and he told her there was no cure for this disease and she has a rare type of trigeminal neuralgia and all she can do is have help dealing with the pain.

My mom took this bad news and turned it into a good thing by teaching others about her disease. Last October the Belleville News Democrat put a story in their paper about my mom, they came to the house and talked to her and put it in the paper. Mom has also been raising money to give to the people that research cures. My mom makes me proud, it is hard seeing her in pain but no matter what is going on she is always there for me and my brother and sister.

The Facial Pain Research Foundation

Salutes Our Thousands of Volunteers

The Facial Pain Research Foundation is fortunate to have had thousands of Volunteers assist in the raising of funds for its Research Projects to cure Trigeminal Neuralgia and related neuropathic pain.  The following article written by Karla Gudgeon in the UK is a wonderful example of someone in pain “fighting” to help others to end the pain.  We truly appreciate all of the Volunteers and their efforts on behalf of the FPRF.

Michael Pasternak, FPRF Founding Trustee

A Holiday Message from Karla Gudgeon

Hello again from England!  Some of you have probably heard of me from past articles. My name is Karla, nicknamed Athena and I have had TN for nearly a decade, since I was 18. It's been an awful year in many ways, not least because I seem to be getting TN on my other side now as well, something I have dreaded. But do not fear - this is a positive article. The theme of this article is that you may not reach your dreams the way you intend; life may not go as planned, but sometimes things work out anyway in ways you could never have imagined.  

As some of you know I run Child of Athena Crafts, selling wooden pyrography items, cards, and official FPRF merchandise, with all the profits going to the FPRF - feel free to check out my page on Facebook and see what I do! I also collect loose change and do other fundraising activities. Well I have just calculated the fundraising totals for 2018 and I was astonished to find out that they came to at least £2000 ($2500) when everything was taken into account. £510 of this was from a sponsored challenge, the rest is from my merchandise, loose change and other activities. I also sell items down at a local Garden Centre. Some of the money paid for the materials to send a large shipment of cards and merchandise to Florida, where hopefully it will be turned into even more funds and awareness! 

Firstly then, an update on the sponsored challenge - some of you will already know that two years ago I decided to undertake ten sponsored challenges, on horseback, set by my instructor to be at a difficult but attainable level. Horse riding is a great love for me, but is very difficult for me as the pain from my TN makes me pass out unconscious about 30-50 times a day, or whenever an attack is triggered, you know like by doing exercise or being out in the cold! I also have Ehlers Danlos which makes me dislocate and sprain joints all of the time. The challenges included cantering a full circuit on both reins, turning on the forehand, and a selection of agility and control based exercises. One challenge (reversing) did have to be exchanged as I simply couldn't do it without dislocating several joints due to my Ehlers Danlos. We exchanged this for a full spiral in trot on both reins followed by a circle in trot with no stirrups, on both reins. Eventually though Amos and I completed our ten challenges - I collected the money, he would rather have 510 carrots. He's a wonderful pony though - every time I pass out he just stands patiently and won't leave until I'm back around - even if I'm still on the floor, as long as I'm conscious!

Secondly the merchandise - I have moved away from cards and more into pyrography this year, and am improving all the time, learning new techniques. I still make cards, and the merchandise as well of course, but pyrography is my main love. Please pop over to Child of Athena Crafts on Facebook to see what I make, or check out my items on Conscious Crafties website (https://www.consciouscrafties.com/crafties/child-of-athena-crafts/). More items are being listed gradually. My Mum, who had to give up work to care for me also makes dreamcatchers, a remnant from my childhood nightmares which she has recently got back doing.

Finally, and nothing illustrates my point about dreams coming true better than this. Over the year I have been asked to play Princess Belle at various charity and community events. Over the year this has evolved somewhat - although I do not get paid for this I love doing it as a way to give something back to the community and make some children (from all walks of life, of different ages, some very ill) so happy. To me that is true magic, and a truly humbling thought to know you can make such a difference to a child, just by being there and talking to them. Now to tell a story - twenty two years ago a little six year old girl visited Disney Land in Florida. I was allowed to choose one dress - I chose Belle, my favorite princess as she was so like me. She didn't fit in, wanted adventure and loved her books. Now ironically that same holiday I damaged my ankle and had to be carried around or use a wheelchair - little did we know that it was a sign of things to come. Now fast forward a few years and I dreamed of having a few years off after uni and being a princess there for real... that wasn't to be due to my health of course. Ironically though, by being ill, I've ended up accidentally falling into doing something very similar! Either way I attained a dream, just not necessarily in the way I expected. Its a lot of effort, and I have to take very high morphine to make sure I absolutely never pass out when in character but the smiles on the children's faces make all the pain and effort worth it.  

So with that in mind, TN has taken my freedom, my masters and phD, my driving license and in places my dignity. But it will not take my dreams, because even if you can't attain them the way you expect, with a little modification they can still come true! 

So thank you to Michael and all the FPRF for that most precious gift of all - hope. 

Merry Christmas and a Happy New Year

Your TN Princess, Athena.