Occipital Neuralgia Headache: Terrible pain lasting weeks, what helps?

Posted by suszy39 @suszy39, Dec 12, 2025

I suffer from occiptal neuralgia headachs. Three weeks usally @ a time. I do have trigger shots but medicare has cut my time to every
fours months, they do help. Hot Hot showers, massage, $$ on pillows.
Beginning to take VitB2?
A comment on Mayo chat they take Valium/Medrol dose? any other ideas?

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These comments and ideas are very helpful. I read them as soon as they come in.

Thank you All
Suszy39

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In reply to @suszy39 "@suszy39" + (show)

@suszy39 I have never had sharp shooting pains that go up my head. I get pressure on the right lower back of my head. I am not sure I have Occipital Neuralgia. Neither is the second Neuro-Opthalmologist. Even though I am taking Gabapentin I get break through pressure. I will see someone in January and maybe get more information who knows? @rnlorena

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I am not a medical professional so am hesitant to post as this is a serious topic, but here is my experience.
I am a person who is fortunate to never get headaches. A couple months ago, I had level 10 pain on the right side of my head-very targeted at the top, near the ear and at the jaw. Went to the ER where CT scan was performed and nothing noteworthy found. Neither trigeminal neuralgia nor occipital neuralgia totally line up as positive diagnosis. Muscle relaxer prescribed as well as ES Tylenol and ibuprofen but none of this touched the pain. PCP prescribed carbamezapine and it worked for me. Gradually weaned off but I am still fine.
This is an anti seizure anti psychotic drug used off label to “settle nerves” and is considered a serious drug. I feel for those of you suffering from head pain and hope you get some relief.

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Profile picture for cmdw2600 @cmdw2600

I am not a medical professional so am hesitant to post as this is a serious topic, but here is my experience.
I am a person who is fortunate to never get headaches. A couple months ago, I had level 10 pain on the right side of my head-very targeted at the top, near the ear and at the jaw. Went to the ER where CT scan was performed and nothing noteworthy found. Neither trigeminal neuralgia nor occipital neuralgia totally line up as positive diagnosis. Muscle relaxer prescribed as well as ES Tylenol and ibuprofen but none of this touched the pain. PCP prescribed carbamezapine and it worked for me. Gradually weaned off but I am still fine.
This is an anti seizure anti psychotic drug used off label to “settle nerves” and is considered a serious drug. I feel for those of you suffering from head pain and hope you get some relief.

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@cmdw2600 Thank you for you experience

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Profile picture for rnlorena @rnlorena

@suszy39 I have never had sharp shooting pains that go up my head. I get pressure on the right lower back of my head. I am not sure I have Occipital Neuralgia. Neither is the second Neuro-Opthalmologist. Even though I am taking Gabapentin I get break through pressure. I will see someone in January and maybe get more information who knows? @rnlorena

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@rnlorena I was on Gabaoentin for some time, however I did not see any improvment, I slowly
took myself off of it. I have my Nerve/Block shots in Jan. feeling a little better after my "flair Up" headach.

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@suszy39 bless your eyes and heart. I have ON along with trigeminal neuralgia, atypical trigeminal neuralgia, bilateral-trigeminal neuralgia. It’s crazy to me that there are a few surgeries for TN but none for occipital neuralgia. Gabapentin is a drug like no other. It either works around 600mg or the doc keeps increasing the dose thinking the problem is you. I was up to 5200mg. Along with my 13 other meds I took. The whole time I was in excruciating pain living in my bed, drugged up from gaba and I took a year to wean myself off.

I’m happy the injections help even a little. Where are the injections going? Back oh the skull? Just know you are SO STRONG. Brave! Cry if you need to. Bi love from mi.

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Profile picture for irishgirl2005 @irishgirl2005

@suszy39 bless your eyes and heart. I have ON along with trigeminal neuralgia, atypical trigeminal neuralgia, bilateral-trigeminal neuralgia. It’s crazy to me that there are a few surgeries for TN but none for occipital neuralgia. Gabapentin is a drug like no other. It either works around 600mg or the doc keeps increasing the dose thinking the problem is you. I was up to 5200mg. Along with my 13 other meds I took. The whole time I was in excruciating pain living in my bed, drugged up from gaba and I took a year to wean myself off.

I’m happy the injections help even a little. Where are the injections going? Back oh the skull? Just know you are SO STRONG. Brave! Cry if you need to. Bi love from mi.

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@irishgirl2005 Thank you for the concern. People have no idea the severeness of it. I feel I
am getting worse not better. The right side of my neck, muscles in shoulder and back, then as
the Flair Days really catch hold the pain up the back on my head. ( this was the worse). Ice pack all night long. I e-mailed my Pain Dr. about
the person that was cured by a combo Valium/Modrol? no word yet!!! To your questions I usually get 5-nerve Blockers sometimes in my neck other times in the skull. He is very good at
these then inbetween My Nureglist PA gives meTrigger Point shots, they help relieve tight musle/ When they get better I get to a some what normal Life, playing my music, helping my Granddaughters with up coming wedding April. it really helps to hear other UNDERSTAND

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