Survivor Story: When the Headache Doesn’t Go Away...Occipital Neuralgia with Kayla Smock

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By Mariah Morgan & Eryn Martin, Mariah Morgan, and Eryn Martin. Discovered by Player FM and our community — copyright is owned by the publisher, not Player FM, and audio is streamed directly from their servers. Hit the Subscribe button to track updates in Player FM, or paste the feed URL into other podcast apps.

You are the unfortunate recipient of an injury that caused whiplash, concussion, and persistent concussion symptoms (PCS). You do all the physical, vestibular, and vision therapy but the symptoms persist. You experience a constant headache with zapping pain that goes from the back to the front of your head. You’ve tried migraine treatments, you’ve seen specialist after specialist, but nothing helps. Sound like you? Join us in this episode as we learn more about occipital neuralgia (ON) from the founder of the Occipital Neuralgia Foundation, Kayla Smock! Learn more, and find hope and support at www.ONFsupport.org; on facebook at Occipital Neuralgia Foundation; and on Instagram at Occipital.neuralgia.

Covered in this episode:

  • Occipital Neuralgia Foundation: The mission is to raise awareness in the medical community and public about ON and to foster research on ON. The foundation focuses on providing an online community to support and educate. They are working on establishing connections in the medical community to pursue research. Social media accounts and the website focus on sharing resources, survivor stories, education, and most importantly providing light and positivity to those with ON.
  • 3 in 100,000 people have Occipital Neuralgia diagnosed, likely there are many more but it is not readily diagnosed or broadly known about in the medical community

  • Symptoms: People with ON have constant headaches that do not improve with treatment characterized by a zapping pain from the back of the head to front of the head. They may also have pain down the arms, blurry vision, and eye fatigue
  • Treatment: headache medications, injections: botox, nerve blocks, or trigger point; nerve decompression surgery, radio frequency ablation, nerve excision, neuro-stimulator implant

  • Advice to those going through ON: connect with others who have what you do (see links below), keep advocating for yourself and find a provider who will listen. Doctors are humans, not every doctor knows everything; it's ok to find one that knows about what you’re going through. Have a support person to help you advocate.

  • The Foundation is IN SEARCH OF medical providers and researchers interested in finding a cure. Please contact the Occipital Neuralgia Foundation at ONFsupport.org

Links to resources:

www.ONFsuppport.org

Facebook: Occipital Neuralgia Foundation

Instagram: @occipital.neuralgia

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43 episodes