Understanding Migraine-Related Nerve Sensations
Hello everyone, I’m a 34-year-old male, weighing approximately 90 kg, and I generally maintain a good level of fitness. Despite my involvement with multiple specialists, I’m not seeking a formal diagnosis at this stage. I previously shared my experiences in a neurology group and hope to gain additional insights from a broader audience of doctors. While I am not trained in medicine or neurology, my background as a geotechnical engineer has led me to develop unusual nerve sensations in my head and face. I reside in Sydney, Australia, where I have consulted with reputable neurologists. I’d like to share what has been troubling me since my last visits to both a neurologist and a neurosurgeon. I apologize for the lengthy explanation but aim to make it clearer. About two years ago, while traveling, I began experiencing excruciating headaches on almost a daily basis—what I would describe as migraines or something similar in intensity. Following my return from that trip (which lasted a month), I noticed a tightness in my forehead, akin to a rubber band, which later transitioned into a sharp pain in the back of my head that varied in intensity and duration. After several consultations with general practitioners, physiotherapists, and even a chiropractor (a decision I regret), I finally consulted a neurologist who diagnosed me with secondary occipital neuralgia, likely triggered by muscle spasms, and began Botox treatments. However, the results were not satisfactory. A month later, I began to feel stabbing pain around my nasal area, which sometimes spread to my eye or cheek. This pain often coincided with my occipital discomfort, or occurred on its own. The same neurologist attributed this new symptom to Sluder's neuralgia (sphenopalatine) and prescribed Gabapentin, which provided no relief whatsoever and significantly impacted my quality of life. After two to three months of persistent pain and mental distress, I consulted with a retired neurosurgeon client of mine, who, due to ethical retirement restrictions, couldn't provide direct advice but encouraged me to seek a second opinion. The second neurologist contradicted my prior diagnoses, stating he had never encountered a genuine case of sphenopalatine neuralgia in his 40 years of practice. He told me that having both neuralgias was very unlikely and suggested that I was experiencing anxiety instead. He prescribed Effexor at a 75 mg dosage, which did help mitigate my symptoms, though not eliminate them. After six months, I found myself visiting a cousin in France, who introduced me to a well-respected neurosurgeon known for his expertise in France, Lebanon, and the UAE. This specialist also suspected that my condition was not true neuralgia but suggested it might be a form of craniofacial pain. He recommended continuing with Effexor for another six months, avoiding any research on neuralgia online, and suggested trying CQ10 as a supplement. Six months later, while the sensations persisted, they were less intense than at their onset. I approached another neurologist in Sydney, who is an expert in headache and migraine disorders. After a thorough evaluation, he concluded that I did not suffer from true neuralgia, which typically causes severe and immobilizing pain. Instead, he indicated I was experiencing a variant of migraines associated with craniofacial pain linked to the occipital and trigeminal nerves. He advised discontinuing Effexor as planned and starting treatment with Adjovy. I recently completed my fourth monthly dose of Adjovy, and I am noticing a reduction in the intensity and duration of these nerve sensations. Now, they occasionally manifest as an ongoing flickering light around the base of my nose, sometimes extending towards my eye area. The occipital region may feel itchy, slightly burning, or even stinging in certain spots, but these sensations rarely radiate. It's important to note that I haven't experienced severe headaches since these issues began. The sensations aren't sharp electric shocks as described in typical neuralgias; rather, they linger for varying durations, from minutes to hours. I am curious about how migraines could lead to these nerve sensations that I've described. My neurologist and the neurosurgeon simplified it by explaining that, instead of classic migraine-related pain, my experiences are expressed through the nerves that are typically responsible for such headaches. I appreciate your patience in reading this message. I’m hopeful for some understanding and clarification regarding how these nerve sensations relate to migraines, preferably in straightforward, accessible terms. That way, I can reinforce the notion that these sensations are merely migraine-related and try to lessen my focus on them.
Answers (1)
9/13/2025, 8:10:44 AM
OpenHealth AI
It sounds like you’ve been through a challenging journey with your symptoms, which can understandably lead to a lot of uncertainty and concern. The sensations you're experiencing could indeed be related to migraine and how they manifest in your body, particularly through nerve pathways. Let’s break this down.
Main Points:
- Connection Between Migraines and Nerve Sensations: Your symptoms might be a manifestation of migraine-related nerve activity rather than traditional pain.
- Potential Mechanisms: Migraines can affect the trigeminal nerve, which is responsible for sensation in the face and head, and this impact can lead to various sensations beyond just pain.
- Current Management: Continue with Adjovy and monitor your symptoms for any changes in intensity or frequency.
Explanation:
Migraines can be complex and affect different areas and systems in the body, including the nerves. Here are some ways they can lead to the sensory sensations you're experiencing:
- Nerve Pathways: Migraines typically trigger changes in the trigeminal nerve system, which is involved in facial sensations. Even without the classic headache, this system can still be activated, leading to sensations like burning, tingling, or flickering feelings in the facial region.
- Craniofacial Pain: As you noted, specialists refer to your condition as craniofacial pain, suggesting that the nerve pathways usually involved in headaches are still responding, albeit differently. This can manifest as less severe but still distressing sensations.
- Nervous System Dysregulation: Migraines can create a sensitivity in the nervous system, making it more likely to misinterpret normal sensations as painful or uncomfortable. This might explain your diverse experiences in the occipital region and face.
Next Steps:
- Continue Monitoring: Stick with your current treatment (Adjovy) and keep a detailed diary of your symptoms — noting when they occur, their intensity, and any potential triggers. This can help you and your neurologist adjust treatment if necessary.
- Mindfulness and Relaxation Techniques: As anxiety can exacerbate sensitivity, techniques such as mindfulness meditation, deep breathing, or gentle yoga may help reduce the focus on these sensations and improve your overall mental well-being.
- Nutritional Support: The recommendation for CoQ10 could be beneficial. It’s an antioxidant that has been suggested in some studies to help with migraine management. Ensure that any supplements fit within any existing treatments you’re following.
Lastly, while it can be tough, try to reinforce the idea that these sensations relate to your migraine experience rather than something more sinister. If you find they're excessively impacting your daily life, consider discussing additional supportive therapies (like cognitive behavioral therapy) with your neurologist. Remember, you’re not alone in this, and there are many avenues to explore for relief.
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