Who knows about occipital neuralgia?

@maxieg it’s Haven Headache and Migraine Center. I do believe the long-term correlation with CSS is a key in providers treating us. Too many insurance companies try to restrict migraine and ON treatments when a multi-modal treatment approach tailored to the individual could be more effective. My condition has become treatment resistant over 4.5 years and requires a team of providers to monitor and adjust. Haven does monitor daily, which I think is instrumental to recovering.

@onpainsufferer
I really appreciate your reply to my question regarding your team of migraine specialists. I, too, continue research, in my case, to find neurologists, therapists and other doctors who have knowledge, expertise and understanding of chronic pain tied in with Central Sensitiztion Syndrome (CSS).
Once again, thank you.
If you are able to share the name of the migraine center you referenced, I would appreciate it. If not possible or appropriate, I certainly understand. I hope you are on your way to identifying the best treatment for you.

@maxieg USF (University of South Florida) Headache Clinic

In the first several years I went though numerous doctors includes several neurologists, otolaryngologists and primary care doctors. But I kept researching not just local doctors but items that would see me virtually with an understanding of both ON and chronic Migraines. This lead me to a neurologist at a virtual migraine center willing to acknowledge my migraines are related to my ON and create a plan with other medical providers she felt were needed, like vestibular and physical therapists, pain specialist and others. They’re treating both with multiple modalities. Also, she’s willing to be open minded on the root cause.

@onpainsufferer Good news that someone really listens to you. Best to you.(fellow sufferer
of occiptal Neuralga.

@suszy39 it hasn’t been easy and the majority of doctors I saw did not. Some even omitted my diagnosis in their clinical notes from the exams!

My case is particularly complicated since started right after getting the Moderna Covid Vaccine. First, I’m not an anti-vaxxer. But I am finally feeling vindicated somewhat as both US and EU research is proving that some of us have long-term neurological issues post vaxx. Second, we must advocate for ourselves. If I had stayed with my 2021 primary care provider, I’m not sure I’d still be here given the chronic pain.

My current primary care just emailed yesterday that she’s leaving my medical group, so I need to find a new one that’s open minded. In the meantime having a strong neurologist and pain specialist that have worked together and follow a common protocol is helpful.

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.

My pain doctor gives me Botox in head and neck which does keep the pain under control.
I also take large doses 1200x2 of gabapentin that I tolerate well.
And I see a chiropractor who works without bone cracking. She also does acupuncture
I tend to feel, all things considered, that my goal in life is to keep the medical profession gainfully employed.

My pain doctor gives me Botox in head and neck which does keep the pain under control.
I also take large doses 1200x2 of gabapentin that I tolerate well.
And I see a chiropractor who works without bone cracking. She also does acupuncture
I tend to feel, all things considered, that my goal in life is to keep the medical profession gainfully employed.