The Unfortunate Alliance: EDS, CM, and Neuralgia. When Your Face Declares War
- Antonia Kenny
- Mar 19
- 3 min read
Let’s talk about Trigeminal Neuralgia (TN). This isn't the kind of pain you shrug off or casually ignore—this is your face declaring open warfare on your sanity. It's sharp, ruthless, and absurdly unpredictable.
Living with TN feels like hosting an angry gremlin inside your head, determined to turn everyday sensations into moments of torture. And as someone already navigating Ehlers-Danlos Syndrome (EDS), Chiari Malformation (CM), and cervical scoliosis, TN has carved out its own uniquely painful territory in my life.
What Exactly is Trigeminal Neuralgia?
For those unfamiliar, TN is a chronic condition affecting the trigeminal nerve—the nerve responsible for sensation in your face. Usually, this nerve quietly does its job without complaint. But when it rebels, even gentle actions like eating or a breeze brushing your cheek can trigger excruciating pain.
Common symptoms include:
Burning sensations that dig deep into your jaw, as if molten needles are burrowing inside.
Electric shock-like jolts that strike randomly, leaving you momentarily incapacitated.
Persistent uncertainty, forcing you into constant vigilance, waiting for the next unpredictable attack.
For me, the pain tends to settle between my jawline and ear—but never politely stays there. It spreads abruptly, zigzagging across my face, catching me completely off-guard.
My Personal Experience with TN
I've had five episodes of TN, each lasting several miserable days. At first, I blamed wisdom teeth—surely nothing else could cause such agony. But wisdom tooth pain doesn't shoot electric shocks across your face or instill fear that simply brushing your teeth might trigger the next episode. TN has its own sadistic set of rules.
The Unfortunate Alliance: EDS, CM, and TN
TN alone is intense, but combined with EDS and Chiari Malformation, it becomes a formidable trifecta.
EDS and TN:
Weak Connective Tissue: EDS weakens collagen, making my neck and jaw joints unstable. Imagine a shaky scaffold pressing on a delicate nerve—it doesn’t take much to set it off. (Source)
Amplified Pain Response: With EDS, pain receptors already operate at maximum sensitivity. TN attacks push this to extreme levels, like cranking the volume to maximum on an already loud stereo.
Neck Instability: Scoliosis and joint instability from EDS increase nerve irritation, making episodes of TN more frequent.
Chiari Malformation's Role:
Pressure on the Brainstem: In CM, part of the cerebellum slips into the spinal canal, compressing nerves including the trigeminal nerve at the brainstem. (Source)
Erratic Signals: This compression disrupts nerve signaling, resulting in unpredictable and severe pain.
Structural Alignment: A clavicle collar helps stabilize my neck, relieving pressure on nerves and lowering the risk of triggering a TN episode.
A Glimpse into TN Pain
If you haven't experienced TN, picture a bolt of electrified lava suddenly coursing through your face without warning. Now imagine it recurring unpredictably for days. TN is relentless, interrupting conversations, meals, or sleep without mercy.
Managing the Pain: My Survival Kit
Surviving TN requires resilience and strategic management. My tools include:
Neuro Blockers: These medications help reduce the severity, making pain manageable rather than unbearable.
Heat Packs: A warm compress provides relief once intense pain gives way to spasms.
Clavicle Collar: Stabilizing my neck helps prevent nerve irritation and reduces episodes.
Humour and Patience: A little dark humour goes a long way when coping with such unpredictable torment.
Daily Life with TN: Navigating Uncertainty
Perhaps the hardest aspect of TN is how it infiltrates daily life, forcing caution into every ordinary action. Eating, talking, smiling—simple acts become delicate tasks that require care and consideration.
Yet, living with TN has taught me adaptability. With proper medical support, self-care techniques, and determination, it’s possible to reclaim some normalcy despite the unpredictability.
Final Reflections
Trigeminal Neuralgia is isolating, frustrating, and profoundly disruptive. However, it also uncovers reserves of strength and resilience we didn’t know existed.
If you're coping with TN or another chronic condition, you're not alone. Reach out, find humour amidst the chaos, and cling to the determination that pushes you through each painful episode. Adversity often reveals our true strength—and TN certainly tests those limits.
Helpful Resources:
Facial Pain Association
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