Trigeminal Neuralgia (TN), often described as one of the most excruciating pain conditions known to medicine, is a little-known condition that frequently accompanies multiple sclerosis (MS) and other autoimmune disorders.
For me, this burning pain inspired the name of this. Living with TN during MS flare-ups feels like a firestorm of nerve pain, but you have to move forward no matter what.
In this post, I’ll share what trigeminal neuralgia is, how it relates to MS and autoimmune conditions, and how I’ve learned to manage and find meaning in the midst of the burning pain.
What Is Trigeminal Neuralgia?
Trigeminal Neuralgia is a chronic pain condition caused by irritation or damage to the trigeminal nerve, which transmits sensation from the face to the brain. It’s characterized by sudden, severe burning or stabbing pain that can be triggered by simple actions such as chewing, talking, or even a gust of wind.
Key symptoms include:
- Sudden, severe burning or stabbing pain, lasting seconds to minutes.
- Pain usually localized to one side of the face, often in the jaw, cheek, or around the eye.
- Episodes that can occur in clusters or unexpectedly, sometimes leading to intense, prolonged flare-ups.
Prevalence of TN:
- TN affects approximately 12 in 100,000 people annually, making it a relatively rare condition.
- While it can occur in anyone, it’s more common in individuals over 50 and those with underlying conditions like MS.
How TN Relates to MS
- Statistics: Studies show that 1-2% of MS patients experience TN, which is significantly higher than the general population. Conversely, about 5-10% of all TN cases are linked to MS.
- Demyelination: MS attacks the protective myelin sheath of nerves, including the trigeminal nerve. Without this insulation, the nerve becomes hyperactive, leading to pain.
- Brainstem Lesions: MS lesions in the brainstem, where the trigeminal nerve originates, are a common cause of TN.
- Flare-Ups: TN often accompanies MS flare-ups, when inflammation worsens nerve sensitivity, making the burning pain even more intense.
The Burning Pain of Autoimmune Conditions
TN isn’t exclusive to MS. Other autoimmune diseases, such as lupus and Sjögren’s syndrome, can also cause nerve damage or inflammation, leading to similar pain. For many, this burning sensation symbolizes the invisible battles we fight daily.
Living with TN and MS: My Experience
Here’s how I’ve learned to manage TN:
- Medications:
- Anticonvulsants like carbamazepine are often a first line of defense. They help calm overactive nerves. Thankfully, that has been my savior when this unrelenting pain comes on.
- Muscle relaxants and antidepressants can sometimes provide relief.
- Mindfulness and Lifestyle Adjustments:
- Stress and fatigue make TN worse, so I’ve worked to prioritize rest, mindfulness, and a steady routine.
- Avoiding triggers like cold air or certain foods has also helped.
- Control what you can control and for me, this is non-negotiable to the point that I am
- Building a Support Network:
- Connecting with others who understand what it’s like to live with chronic pain has been invaluable. It reminds me I’m not alone in this journey.
The Symbolism of the Fire
What You Can Do
Living with TN and MS isn’t easy, but it’s possible to find relief and meaning. Whether through medication, mindfulness, or community support, every small step helps.
If you’ve experienced TN or MS – or know someone who has – I’d love to hear your story. How have you found strength in the fire? Share your thoughts in the comments below or forward this post to someone who might find it helpful.
Closing Thoughts
Trigeminal Neuralgia and MS can feel overwhelming, but they’ve also taught me that resilience is born from the toughest challenges. By sharing our stories and raising awareness, we can make the invisible visible and help others navigate their journeys with strength and hope.
