Occipital Neuralgia

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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@raisanicole

Anyone with this condition? How was it diagnosed? It does not come up in MRI o X rays. Treatment?

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I had an occipital nerve block that made things a lot worse- containing lidocaine. I have massage at a PT. It's hard so sympathies.

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My left occipital neuralgia was diagnosed in 2008 by a neurologist after I kept hurting for dev Yrs right where the left occipital nerve is. It’s a tree in ur left scalp. The trunk if it splits into two parts - the Lesser Occ nerve and the Greater Occ nerve.
I do need an ablation badly bc it hurts terribly but I can’t tolerate the two occipital nerve lidocaine injection sessions that Medicare requires before they will pay for ablation. With me lidocaine leaches to all the other tissues/nerves in my head and neck and damages them. So I would just acquire new areas of bad pain if I had the lidocaine injections. Has anyone else been through this struggle and have any advice to share?

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@raisanicole

Anyone with this condition? How was it diagnosed? It does not come up in MRI o X rays. Treatment?

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@raisanicole I was diagnosed by process of elimination.
My initial symptoms mimicked an autoimmune disease, Temporal Arteritis They did a biopsy of my temporal artery and it was negative.
Occipital neuralgia is a misalignment of the neck and skull.
So, I was sent for physical therapy, and I bought a cervical pillow to relieve the pressure on my neck. That all was a great help.
I still have pain once in awhile, but now I can do the exercises I learned from P/T and I am better.

I hope that helps you.

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@irr4et thank you for the info on lidocaine leaching, That explains what happens to me. After my occipital injection, the pain down my neck shoulder, arm and back on left side was extreme, and left side of face and scalp hurt and were numb. The pain and stiffness radiated to my rib cage and I had trouble breathing. The neuro has no idea why this happened.

A few months later I had some lidocaine injections in my trap and rhomboid, basically shoulder blade, and pain increased for weeks. I have told docs NO lidocaine injections. Now there is nothing they can offer, and my pain is worsened by what they tried.

Is your damage permanent? My left hand is starting to curl in and it seems to be related. It may be Dupuytrens or scleroderma (I have positive antibodies) but to me, it seems related to that occipital injection. It feels connected to left neck, shoulder, arm...then hand that is tightening. My left arm is very much shorter than my right.

ps I sent part of your post to my neuro!

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@windyshores

@irr4et thank you for the info on lidocaine leaching, That explains what happens to me. After my occipital injection, the pain down my neck shoulder, arm and back on left side was extreme, and left side of face and scalp hurt and were numb. The pain and stiffness radiated to my rib cage and I had trouble breathing. The neuro has no idea why this happened.

A few months later I had some lidocaine injections in my trap and rhomboid, basically shoulder blade, and pain increased for weeks. I have told docs NO lidocaine injections. Now there is nothing they can offer, and my pain is worsened by what they tried.

Is your damage permanent? My left hand is starting to curl in and it seems to be related. It may be Dupuytrens or scleroderma (I have positive antibodies) but to me, it seems related to that occipital injection. It feels connected to left neck, shoulder, arm...then hand that is tightening. My left arm is very much shorter than my right.

ps I sent part of your post to my neuro!

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Oh bless ur heart! I’m so very sorry u are going thru this bc of lidocaine. What I’m being told is that some ppl are sensitive to it. But after how it has hurt me, I can’t imagine it being ok for anyone to have injections of it except maybe a little of it to remove a mole or other skin lesion. I had to get on medical cannabis to deal with the pain lidocaine has caused. Can u do that? I use 1/4th of an Indica THC gummy 1:25 hrs before bedtime. That’s how long it takes to start working. If u still can’t fall asleep, maybe ur Dr would prescribe a few caplets of Zolpidem 10 mgs. I bite off 1/3rd of a caplet bc 3 mgs of all it takes to enable me to fall asleep. THC enhances the effect of zolpidem a little wh is nice.

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Yes it does seem to be permanent bc lidocaine can damage nerves. It’s been 4.5 Yrs since I had the lidocaine injections in the occipital nerve area and I have not had any healing since then.

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@irr4et

Yes it does seem to be permanent bc lidocaine can damage nerves. It’s been 4.5 Yrs since I had the lidocaine injections in the occipital nerve area and I have not had any healing since then.

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@irr4et even though discouraging, your posts are helpful. I wrote my neurologist about this. He said pain management would do an epidural before ablation. To be honest I don't want anyone near me!!

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You said ur pain is mild so I would do nothing except con’t with PT and avoid spicy foods, citric acid in supplements, vinegars, caffeine, chocolate and any food or substance that you notice makes the nerve start hurting. I’m winter protect the nerve from cold air.

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@irr4et

You said ur pain is mild so I would do nothing except con’t with PT and avoid spicy foods, citric acid in supplements, vinegars, caffeine, chocolate and any food or substance that you notice makes the nerve start hurting. I’m winter protect the nerve from cold air.

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irr4et I didn't say my pain is mild and wish it were. My neuro says that if lidocaine leached it would help not harm. Can you share info on lidocaine damaging tissues and nerves? I believe neuro is protecting his practice. I like him and have no intention of accusing them of anything but I need info for myself.

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@windyshores

irr4et I didn't say my pain is mild and wish it were. My neuro says that if lidocaine leached it would help not harm. Can you share info on lidocaine damaging tissues and nerves? I believe neuro is protecting his practice. I like him and have no intention of accusing them of anything but I need info for myself.

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It felt like it had scalded my nerves. I have had Fibromyalgia 22 Yrs and I’ve read that everyone with it has food and chemical sensitivities. That includes food additives, certain foods, injections, creams and inhalants. So that would be why ppl like me have blogged that lidocaine injections hurt the nerves permanently, esp in winter. Lidocaine may not bother your pain level if u are not sensitive to it.

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