Occipital Neuralgia: What treatments work for you?

Posted by jmb73 @jmb73, Sep 11, 2019

I have been having headaches on one side of my head and have recently been diagnosed with occipital neuralgia. They recommend a nerve bloc but I wonder anyone else has this and how they handle it.. I don't want a nerve bloc. The headaches are usually mild but occasionally the pain wakes me up. They got worse after I had my Gamma surgery. Any ideas would be appreciated. Thank you.

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Profile picture for judic0927 @judic0927

I have self diagnosed. Have severe stabbing pain radiating up the back of my scalp and then onto my left forehead. Currently trying to treat with Advil and gabapentin without much success. I think next step would be to see a neurologist. Interested in hearing from anyone who has experience with this condition and especially someone who has had it treated successfully.

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That sounds like occipital neuralgia. Definitely see a neurologist to be sure. It usually subsides but I’ve suffered ten+ years. Tylenol, Celebrex and ice packs are my salvation.

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Profile picture for tessie69 @tessie69

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

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I’ve posted several times about my decade-long battle with it. I take Celebrex and Tylenol, and use ice packs several times a day.

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Profile picture for judic0927 @judic0927

I have self diagnosed. Have severe stabbing pain radiating up the back of my scalp and then onto my left forehead. Currently trying to treat with Advil and gabapentin without much success. I think next step would be to see a neurologist. Interested in hearing from anyone who has experience with this condition and especially someone who has had it treated successfully.

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My husband saw a neurologist for similar head pain. MRI showed two extra bones floating in his forehead area. Dr said it could cause these pains. It is far more painful if he allows his head to bend down at all. No pain when he gets up but starts immediately after getting up on the morning. He prescribed a couple of drugs which he cannot take . He was referred to another headache neurologist which he will see in July. Will ask about occipital neuralgia.

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Profile picture for tessie69 @tessie69

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

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Has anyone tried Nerve stimulation for Occipital Neuralgia?

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Profile picture for jill935 @jill935

Has anyone tried Nerve stimulation for Occipital Neuralgia?

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Tried everything still in Pain!

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Profile picture for jill935 @jill935

Has anyone tried Nerve stimulation for Occipital Neuralgia?

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Hi, @jill935 - welcome to Mayo Clinic Connect. I moved your posts here so that you could talk with others with occipital neuralgia:

- Occipital neuralgia https://connect.mayoclinic.org/discussion/occipital-neuralgia-3/

I'm assuming you have this diagnosis as you were asking about nerve stimulation therapy for this condition and mentioning you've tried everything but are still in pain. I'm sorry to hear that.

Hoping that in this discussion you can connect with members such as @pierwell @queenie2030 @jakedinger @tessie69 who have discussed occipital neuralgia as a diagnosis they or a loved one have, or for which they are being considered/tested.

I'm guessing you are considering nerve stimulation? What have you read or heard about it so far?

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Profile picture for judic0927 @judic0927

I have self diagnosed. Have severe stabbing pain radiating up the back of my scalp and then onto my left forehead. Currently trying to treat with Advil and gabapentin without much success. I think next step would be to see a neurologist. Interested in hearing from anyone who has experience with this condition and especially someone who has had it treated successfully.

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@judic0927
I was sent to physical therapy for ON. They had me doing all kinds of neck stretching movements. It helped, but you should determine why you have it. I bought a new pillow that pushed my head up too high, and that’s when it started.

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Profile picture for tessie69 @tessie69

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

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Reach out to different types. I had trigeminal neuralgia, and it was the most excruciating pain EVER. Just took me DOWN. Full stop. To bed with a narcotic. Turned out it was due to a cracked wisdom tooth that X-rays and really expensive dental people could not detect. When my tooth literally split in two, it stopped. I experienced it again, and the bottom wisdom tooth was pulled. They DID find it was compromised!k the doctors don't confer with the dentists unfortunately and they should!
I also get occipital, but for me, it is more complicated because my cervical spine is compromised. I also have weak eyelid muscles (inherited), and I've had some eyelid muscles tucked, and it stopped on that side. The other eye needs to be done. Impinged nerves from places that no one critically looks at. Don't give up -- keep PUSHING!

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Profile picture for jill935 @jill935

Has anyone tried Nerve stimulation for Occipital Neuralgia?

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Yes, I’ve had a NALU stimulator for several years. It does hel!

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Profile picture for tessie69 @tessie69

I'd like to hear from anyone who suffers from pain from occipital neuralgia.

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I’ve had ON for a decade and have tried everything my neurologist knows about. NALU stimulator, Celebrex and Tylenol are my defenses against daily headaches.

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