Has anyone overcome ON

Posted by lakesofdelray @lakesofdelray, Dec 30, 2022

My ON has gotten much worse over the last 3 months. My doctor sent me to physical therapy which I just started. Also gave me 3 medications. I’m scared of a lifetime of meds.

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Hello @lakesofdelray. Do you mind confirming what ON refers to for you so that I may better connect you with other members who may have experience?

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@amandajro

Hello @lakesofdelray. Do you mind confirming what ON refers to for you so that I may better connect you with other members who may have experience?

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ON stands for occipital neuralgia

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I’m getting physical therapy for ON right now even though I believe that I have Giant Cell Arteritis and PMR. The only reason I’m not being treated for the GCA and PMR is because my labs didn’t show the inflammation.
The neck exercises they have me doing are not helping with my head pain at all.

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So sorry. If I find something that helps I will let you know

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I had neck surgery 2012, disk sitting on spinal cord at 2-3, 4-5, with plate added. I have had Occipital Nerve headaches on both sides for 3 + years
Usually, the nerve blocks worked and lasted 3/4 months.
I have done the RFA, that was earlier this year.I will never do that again. Since headaches are at levels of 7-10 they are unbearable with lots of nausea and vomiting.
Had another nerve block 2 weeks ago, no relief.
Back of head feels raw to the touch, burning, sharp pain 24/7
I just can’t handle these anymore. Had new MRI’s done for my Neurologist/Surgeon
No recommendations except therapy, which I have done many times. I need some relief.
Will consider all options

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Update:
I went through physical therapy for about 8 sessions. I bought a new pillow, and I am feeling much better.
The pillow really helps keep my neck in a better position.
The neck exercises are very helpful for keeping my neck from tightening up.

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I’ve had it for 3 years and have tried all treatments and meds but for decompression surgery. What pillow did you find?

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@amandajro

Hello @lakesofdelray. Do you mind confirming what ON refers to for you so that I may better connect you with other members who may have experience?

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Occipital neuralgia

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