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.
After 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.
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.
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.
Toni Saunders lives in Chelsea, Massachusetts.
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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.