My Story: Spreading Awareness about Trigeminal Neuralgia

My Story: Spreading Awareness about Trigeminal Neuralgia

My invisible illness is Trigeminal Neuralgia (TN) with cluster headaches. For years my head hurt as if someone was squeezing my brain.

In 2010, I had an episode that for a brief moment made me think I was having a stroke, because the right side of my face started pulling inwards.  Thank God it went away as fast as it came.

Teal_RibbonAfter an MRI along with other tests, they diagnosed me with Trigeminal Neuralgia. They also said I have a syndrome called cluster headaches (CH) – which are characterized as a chronic headache that recurs repeatedly in clusters.

A person experiencing this headache often feels excruciating chronic pain on one side of the head, often behind one eye. This happens when the main facial nerve called the trigeminal nerve, which is responsible for feeling sensations like pain, is activated. The activation of this nerve causes severe chronic pain and stimulates other nerves in the face that trigger the other symptoms commonly associated with this type of headache.

Cluster headaches are a condition in itself, meaning there are no underlying conditions, brain tumors or aneurysm that can cause these attacks. The real cause of the trigeminal nerve activation is still unknown, but studies have shown that this has something to do with the part of the brain that regulates our sleeping habits called the hypothalamus.

Now the funny part of this is that TN triggers CH, and CH triggers TN. Doctors believe I have had this illness for about a decade and it is progressing over time.

Every day there is an adjustment I have to make.  I can’t do anything spontaneously, because basically I have to live moment to moment.  The weather is my biggest trigger (wind, rain, cold air, snow), then noise (different tones) and sometimes light or jerky movements.

Little things like brushing my hair, applying makeup or eating dinner; are they going to be painful today?

At some point in our lives, as we all get older, we will have an illness or condition that requires us and our families to adjust to a different life style.

Trigeminal Neuralgia has taught me that I can deal with a lot more pain than I would have ever thought that I could. You don’t need to think about chronic pain every day for the rest of your life.

I needed a place to share and vent, which led me and other TN sufferers to start a Facebook group called Tnnme Trigeminal Neuralgia and a website called Trigeminal Neuralgia Awareness Fighters.

So many of us walked out of doctors’ offices empty handed, not knowing anything about TN and neuropathic facial pain. We are hoping to change that and help the next person on their journey with Trigeminal Neuralgia.

The World Health Organization (WHO) doesn’t have Trigeminal Neuralgia on its list of recognized health topics. If it were, it would greatly expand awareness, access to resources, and create opportunities for more TN funding and research.

We’ve started an online petition to have WHO recognize October 7, 2013 as International Trigeminal Awareness Day.  We also created the first Trigeminal Neuralgia Awareness pamphlet.

As we try to spread awareness about this horrific illness, we’re seeing more and more young people being diagnosed with TN. Next month I’m going to Massachusetts General Hospital to support a 14-year old girl having surgery because she’s in so much pain caused by Trigeminal Neuralgia.

You can find more information about TN at the Facial Pain Research Foundation and the Facial Pain Association.

12_7.jpgToni Saunders lives in Chelsea, Massachusetts.

National Pain Report invites other readers to share their stories with us.

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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Toni Saunders

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Grandpa Dave

Wendy… Thanks. I just got the word that my sister and her stressed-out husband are headed to Mayo Clinic in MN. After the labor day weekend she’ll be going through a complete work-up.This is her last hope and we are praying for a procedure that will provide relief from her continuous suffering for the past 2 years. — G-pa Dave


This is in response to G-pa Dave,
While I do not know personally about advances in treatment of TN in Europe (other than reading an article about someone in England, but no follow up possible) . . . I do know that one of the leading TN Doc’s from Europe was at a TNA (Trigeminal Neuralgia Association) Conference in Richmond, VA in May 2013. That group might have information due to that contact or know where/how to get it. Here is a link to their web-site: Hope this helps. I, too, suffer from TNP, a form of atypical TN, for many years. Blessings on you for looking out for your sister.

Grandpa Dave

I have a kid sister, 67 years, who has been suffering from atypical Trigeminal Neuralgia for the past 11 years. Atypical means it is continuous pain. Initially she was able to management the pain after an invasive procedure. The past couple of years it has become intolerant and she opted for a balloon procedure which apparently did not take. She is at her wits end and we understand why this is called the suicide disease. I have heard there is some advanced progress on managing TN in Europe. Has anyone heard? — G-pa Dave

I have suffered from this invisible, silent excruciating painful disability for a long time. Tegretol has literally saved my life, but as I get older more is required of which I am afraid of. Much of
One is stress related that I don’t even really know about until it hits.

Jan Montgomery

Thank you for working so hard to spread awareness about this painful illness! I have TN2 and like you, I have worked very hard to understand what I can do to cope with this monster.


Thanks for articulating the last 25 years of my life! I’m validated but sad that you’re going through this like I do. Chin up, buttercup.

Maria Brownlee

Thank you Toni for describing what my life has been for 4 years now. I went from nothing to everything in no time at all. I know nothing else from pain. I had an MVD done recently and that was I believe to minimize the pain so that I can continue to live. I pray for us all that there will be a better understanding, more awareness and hopefully a cure. I couldn’t find a better way of dedicating my time, if it meant helping others understand what they have and for others to see what we have. Keep the faith, the cure is out there! 🙂

Thank you so much for sharing this helpful and valuable information about TN and cluster headaches. Congratulations also on your positive attitude and how thoroughly you have educated yourself about your condition. It helps others that you have shared.
Joy Selak
TN Patient