Hello @juliediane222 Welcome to Connect. I stumbled upon your post and it peeked my interest. I notice you recently joined Connect, yet, you haven't posted much. I'm curious what brings you? You definitely had alot to contribute in this post, thank you for that.

The information you've provided on occipital neuralgia hits home with me. I was diagnosed with it, cervical neuralgia and arthritis in 2017 by a pain management Dr. who suggested both occipital and cervical radio frequency ablations. As I researched the diagnosis of occipital neuralgia, I was never completely sold due to the fact that my scalp wasn't so delicate to the touch and the doc never got too deep explaination beyond that. Still, I went forward and received several rounds of nerve blocks and ablations. During this time I was having electric, stabbing shocks in the sides of my head, temples, brow area and behind eyes. Not pleasant.

I was diagnosed with neuritis after a cervical ablation which felt like sparklers in my neck. Gabepentin and now Lyrica remain for me. For the most part, these shocking pains have subsided except for occasional revisits that still literally shock me and come as a surprise.

I also was experiencing intense pressure inside my head with sensitivity to light and sound. A neurologist diagnosed me with chronic migraine and prescribed botox along with monthly migraine injections. The pressure was like a vice and brought me to tears with debilitation.

2019 I was finally diagnosed with progressive small fiber polyneuropathy which I believe had existed long before the diagnosis.

Rewinding to 2013,, I was diagnosed with Fuchs corneal dystrophy and cataracts. I had double corneal transplant and cataract surgeries. My severe light sensitivity was supposed to have ceased after surgeries but didnt and became a great mystery to my cornea Dr.

The reason I explain it all is because I have always felt like I'm a mixed bag of neurological defects and I've never truly known if I was coming or going. What caused what?

I wanted MAYO to piece it all together for me as I have mitigating circumstances. Quite honestly, I do not have 100% confidence in my health care professionals as they are not a team that works together for me. Unfortunately, I was not accepted at Mayo. I continue to wonder...is it my eyes, head, neuralgia, neuropathy?

You mention John Hopkins diagnosed you and you seem to have a solid handle on occipital neuralgia. I appreciate your in depth detail and advice.

I depend on ear plugs, low volumes, smaller Tv's with brightness turned down, minimal chaos via noise and light. Controlled light and sound. I wear hats, sunglasses, blind folds. My family walks on egg shells around me and I can't participate in much socially...no movies, concerts, fireworks, sporting events, no more family gatherings. It's a very isolating and an unpleasant way to live.

Thank you for reading and I look forward to hearing from you. I hope you are doing well given your circumstances.
Regards,
Rachel