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Who knows about occipital neuralgia?

Chronic Pain | Last Active: Jan 7 7:41pm | Replies (42)

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You are not alone. There are many of us suffering from painful, debilitating Occipital Neuralgia. I was diagnosed 4.5 years ago when my symptoms started abruptly after getting the Moderna Covid Vaccine. After several nerve blocks, I was referred for a radiofrequency ablation which provided 20 months of full relief until late 2023. I had moved during that time and had to find new doctors. I was put on multiple medications and each time would get a little relief only to have ON pain return. I did consider occipital nerve decompression surgery earlier this year and even had a consult with a leading ON Peripheral Nerve Surgeon. But the percentages weren’t convincing enough, plus some risk that condition could end up worse. Now I finally have a medical team led by several Migraine neurologists and pain specialists. Due to the refractory nature of my condition, I am currently on a comprehensive, multimodal regimen targeting both central and peripheral pain generators. This includes high-dose neuropathic modulation (Gabapentin ) and muscle relaxants (Tizanidine) for Occipital Neuralgia, combined with a tiered migraine protocol involving CGRP inhibitors (Ajovy), abortive therapies (Ubrelvy, Zolmitriptan), and the Botox PREEMPT protocol. This pharmacologic strategy is being augmented with interventional management, including Occipital Nerve blocks and a scheduled Radiofrequency Ablation (RFA) early next year. I wish you the best in your treatments and return to heath. This is a horrible condition. One can only hope new research and treatments will be discovered.

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Replies to "You are not alone. There are many of us suffering from painful, debilitating Occipital Neuralgia. I..."

@onpainsufferer /Sound as if you are are being listened too. I was put on low does of Gabapentin took it for two years I did not feel any improvement, took myself off over period of
time. Maybe I should have given it more time or increase? Muscle relaxants do help very little.
I recently purchased a Pivotal Therapy Pad helps; lay flat on floor with head dropping over,
it puts pressure on [pessure points, this is uncomfortable but it is like massage on the painful
head. Followed by Ice pack. My Occiptal Nueaglia start twenty years ago, but they can one a year. Now three times a year, more sereve (I have flair Up weeks) they last three wks or four but
I have low grade every day. Thank you for your testimony and help.