Better Facial Pain Awareness by Working Together

There are many advocates within the facial pain community who strive for awareness, and I’m sure I’m not alone in saying that it can be tiring work. However, it’s much-needed work as we need better awareness for facial pain, and by working together, we can hopefully achieve it.

Facial Pain Organisations
Working All Year Round For Facial Pain Awareness

There are charitable facial pain organisations scattered throughout the world. All of those organisations are working to achieve better awareness of facial pain conditions and many are proactive in assisting with research efforts.

The biggest, obviously due to the population, is the Facial Pain Association in the USA. Their website is an excellent starting point for anyone needing to learn more about facial pain or to find support. The Young Patients Committee is part of the FPA which, as the name suggests, is for young facial pain patients. If you are under 40 with any form of neuropathic facial pain, please get in touch with them.

Here, in the UK, we have the Trigeminal Neuralgia Association.

When I was first given the diagnosis of trigeminal neuralgia, I was in unknown territory. Finally, after years of facial pain, I had been giving a diagnosis but I still had little information. Google brought up some frightening results. Then I came across the TNA. I was able to get correct and helpful information without frightening the life out of myself. At that time, the TNA had an amazing forum where I was able to meet people with the same type of pain. That helped me tremendously. In fact, I met a very good friend there whom I still chat with almost daily.

I learned about the condition and the treatments and after a while, I became a TNA email support volunteer. Realising that I could help people in a small way helped me. It gave me something which I’d not had for a long time – a sense of purpose.

End Trigeminal Neuralgia

In 2012, I got together with a couple of Facebook friends and started a trigeminal neuralgia awareness page and support group. End Trigeminal Neuralgia (End TN) was born.

If you have any form of facial pain, please visit
End Trigemina Neuralgia Public Awareness Page
and
End TN Private Support Group

Over the years, people have asked about the name choice. “Why did you call it that when you can’t possibly end the condition?” That’s a good point – we can’t end the condition. However, what we can attempt to do is end the lack of awareness, understanding, support and empathy.

That was the aim when End TN first began. It’s still the aim of End TN today.

Many others are on this journey too. Like me, they live with facial pain and are working hard to raise awareness. Together, we can make a difference.

Click here to read all my posts about trigeminal neuralgia

Working Together Can And Does Achieve Better Awareness

I’d like to highlight a few people who are deeply involved in facial pain awareness. Sadly, I can’t mention everyone — there are simply too many. But that’s actually a good thing; it means our community is growing and our voices are reaching farther. Each of these advocates lives with facial pain.

Christy Ritter
The Teal Ribbon

Christy Ritter has bilateral trigeminal neuralgia and atypical trigeminal neuralgia. She had symptoms when she was very young, 6-7 years old, with periods of remission. After her youngest child was born, the pain became more frequent and severe. She was diagnosed 2 years later at age 29.

Christy runs a trigeminal neuralgia awareness page on Facebook called The Teal Ribbon.

In January of 2012 I spent a week in Johnson City Medical Center after having a severe headache, passing out and mini seizures. They did EKGs, MRI, EEG and lab work. Everything came back fine. The doctor wanted to blame it on stress but we knew it wasn’t. We said there had to be some kind of nerve damage or something from the first seizure. So the doctor decided to try steroids. And it helped some.

So then he wanted to do a nerve block in the back of my head. And that lead us to  the diagnosis of Occipital Neuralgia. In June of 2012 I was diagnosed with Trigeminal Neuralgia after telling my family doctor about the severe pain in my face.

I am currently in constant pain from the nerve pain. Any little thing will set off a raging flare. The wind, my hair, food and drink temperatures. Even kisses from my daughters can bring me to my knees. Little things that most people take for granted are now painful for me, like smiling and laughing. Even crying hurts. Storms are a major trigger for me also. The shower helps some with my dystonia but it’s hell on the neuralgias.

I can’t work. Sometimes its hard to drive and even get out of the bed. This affects every aspect of my life. I live with pain, sadness, anxiety, anger and depression. My oldest daughter says she wants her mommy back. I do too!

My face draws up in pain, or I’ll have twitches so I stay st home as much as possible. I keep my hair short, don’t wear contacts anymore, eat soft foods and drinks are without ice at room temp. Also, I try not to laugh or cry, don’t wear make-up and fear every time I brush my teeth. I have a hard time sleeping too so I’m always tired. And when the  flares hit, it zaps me; wears me out and takes all the energy I have left. And this is my life. Every day. . It is the worst of my pain. I have had a c-section, natural birth and kidney stones, and it doesn’t even come close to the TN

Alexis Mayle
Volunteer With The Facial Pain Association

Alexis Mayle, 23, volunteers with the Facial Pain Association in the USA. She has trigeminal neuralgia and complex regional pain syndrome (CRPS).

“It’s been 2 years and though I am not pain-free, I’m stronger now than I ever was so I handle the load better. I was diagnosed with classic Trigeminal neuralgia, extreme shocking on the left side of my face and head. Eventually (after medicine and injections) I had the MVD which gave me 3 months of being pain-free until an auto accident gave me CRPS in the same area. Most recently I had a high cervical spinal stimulator implanted and it has reduced my pain significantly.”

TNnME
Lighting the World in Teal

TNnME was set up by Toni Saunders around the same time as we started End Trigeminal Neuralgia. TNnMe’s aim is to spread awareness by lighting buildings and bridges in teal during the Facial Pain Awareness Month.

Thanks to Toni and her volunteers, this year saw over 200 buildings and bridges across the world lit in teal.

Kathy Somers
Volunteer with TNnME and Canada TNA

Kathy Somers has typical and atypical trigeminal neuralgia. It started when she was 43. Now, she also has chronic neuropathic face pain. Kathy volunteers with the organisation TNnME and is a group leader for Toronto/York region of the Canada Trigeminal Neuralgia Association.

“I had trigeminal neuralgia for 5 years before having microvascular decompression (MVD) surgery. I knew that it might not work because I had atypical pain. However, I was desperate and hopeful.

As soon as I woke up from surgery, I knew that it was not a success. I left Winnipeg to return to Ontario in worse pain than when I had arrived. My pain increased then slowly died down over a few months but it never went away.

I continued working despite having severe pain because I didn’t have a choice. We had 2 children.

During the last two years, my pain has been at its worst. It’s been 7 days a week every night. I have had no pain during the day but every night, I’ve had the worst pain ever. After 3 weeks, it died down and went back to normal pain. This year, due to pain in my eye, I had to keep my head down for a week as I couldn’t look at light. But I have also now experienced the best summer in 25 years.

I take 330 mg of gabapentin and have been using CBD oil as needed. I have learned that as soon as I feel the pain starting, I need to take the CBD rather than waiting for the pain to increase.

Never give up. Have strength and courage. Try to meditate and focus on something you love rather than your pain.”

Erika Conrad-Wess
Face Facts

In her early thirties, Erika developed trigeminal neuralgia. At 42 she also developed geniculate neuralgia in 2014 at age 42. she now also suffers from anesthesia dolorosa. Erika runs the Facial Pain Advocay Alliance and the Face Facts website.

“I founded the Facial Pain Advocacy Alliance in 2016 and built the website face-facts.org to address the lack of solid information available online about lesser known facial pain conditions beyond TN.

Currently, face-facts.org is proudly hosting the collected writings and initiatives of Dr. Richard “Red” Lawhern. Red is a tireless advocate for pain patients being denied opioid pain relief as a direct consequence of the CDC’s 2016 Guidelines for prescribing opioid medications. The guidelines are fatally flawed by anti-opioid bias. Predictably, they’ve been regarded as a mandate across all medical fields rather than a recommendation for primary care doctors. This has resulted in the cruel practice of doctors forcibly weaning chronic pain patients off of opioid regimens which had been working well. It’s a tragedy of monumental proportions.”

Brenda Sharp
Volunteer With The Facial Pain Research Foundation

Brenda Sharp’s pain began when she was just twelve years old. At 24, she was diagnosed with classic, type 1 trigeminal neuralgia. However, she now lives with Type 2, atypical trigeminal neuralgia. Brenda is a volunteer fundraising coordinator for the Facial Pain Research Foundation.

I think that we all live in hope that the FPRF will find better solutions for facial pain.

“Although I have memories of occasional sporadic facial pain in my early teens, the moment I knew something was horribly wrong came at the age of 19 when I first experienced the severe shocking pain of TN. It was so powerful that it brought me to my knees.

That was the start of a 10 year hell where I was consumed with unrelenting pain and ultimately so heavily medicated that I could barely function.

Getting diagnosed was not an easy task back in the early 80’s. This was a time before the internet, before google search, before there was widespread information available. However, a confirmed diagnosis finally came and I began with the standard medication, followed by an exploratory sinus surgery and glycerol rhizotomy, all to no avail.

In 1986, I underwent an MVD in Toronto, ON. The surgery was still relatively new at that time, but I was begging for anything to help me at that point. A major compression of the nerve was located and decompressed. After a lengthy recovery, I could finally say I was pain free. That beautiful blissful time continued for many years.

I attended all the national TN Conferences and started up a local support group, anxious to reach out to others to help them navigate their TN journey.

Since then, my previous TN classical type pain has morphed into more of a TN2 atypical type of pain, along with the addition of Glossopharyngeal Neuralgia. But, I am managing well with the help of CBD oil.

Now, I volunteer with the Facial Pain Research Foundation as a Fundraising Coordinator to help others who want to be part of our “Research for a Cure” initiative. I am committed to helping raise awareness and raise money for research. I am ready for us all to finally get the cure we deserve.”

We’ll Keep Working Together To Achieve Facial Pain Awareness

Facial Pain Awareness Month comes to an end on the last day of October — but that doesn’t mean our efforts stop there. Many of us, myself included, work hard all year round to keep raising awareness.

Links to some of my other awareness posts:

It’s a Pain in the Face
Trigeminal Neuralgia is a Living Nightmare
Making an Invisible Disability Visible

If you’d like to help spread awareness, the following post might give you ideas:
Simple Ways to Spread Awareness

I know some of my posts this month have been difficult to read, but if you’ve stayed with me and taken the time to read them — thank you.

And a huge thank you to everyone who shared their facial pain stories for Awareness Month. I haven’t been able to publish them all, but I’ve read every one. I only wish I had a magic wand to find that elusive cure we all want and need.

Thank you so much for reading.
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Take care,
Liz.

Everyone needs hope for a better future, and the more awareness we raise, the stronger that hope becomes.