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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cmdw2600 | @cmdw2600 | Dec 18, 2025

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.

rnlorena | @rnlorena | Dec 17, 2025

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

suszy39 | @suszy39 | Dec 16, 2025

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

Thank you All
Suszy39

suszy39 | @suszy39 | Dec 16, 2025

In reply to @suszy39 "@rnlorena Thank you for your comments. I am a typical occiptal Neualgia sufferer. Pain belgan on..." + (show)

@suszy39

suszy39 | @suszy39 | Dec 16, 2025

In reply to @laura1970 "Have you considered Botox? Apparently chin tuck exercises have some preventative help" + (show)

@laura1970 acutally I have an appointment with my Neuralgist Jan 12, 2026 I plan to have address this idea. I really don't think they understand our suffering, its like telling a male what
it is like giving birth?

Thanks again
Suzy39

suszy39 | @suszy39 | Dec 16, 2025

In reply to @pierwell "The NALU nerve stimulator I have is implanted under the skin, with an external battery pack...." + (show)

@pierwell I know this sounds silly but it helps me to know and learn of others that suffer like
I do. Just finished seventh day of terrible pain, it should begin to settle down. I actually had
a fairly good night, but I relate to those that feel they would feel better sitting up "all night".I
appreciate your thoughts and help.

Suzy39

laura1970 | @laura1970 | Dec 16, 2025

Have you considered Botox? Apparently chin tuck exercises have some preventative help

pierwell | @pierwell | Dec 16, 2025

The NALU nerve stimulator I have is implanted under the skin, with an external battery pack.
Yes, Celebrex is prescription.
As I write this, it’s 3:30 a.m. and I’ve had Tylenol but I’m also sitting up with an ice pack on my head and heating pad on my neck. It’s so annoying!

suszy39 | @suszy39 | Dec 15, 2025

In reply to @pierwell "I’ve posted several times about my 12-year battle against occipital neuralgia. My current regimen: a Nalu..." + (show)

@pierwell
Thank you I will ask about that nerve stimular. Is Celebrex a preceiption?
Slept all night with ice pack on my head, only relief.
One friend said she thats Indocin (I do believe this is for ordinory migarine Headacks)'
I will be starting a regular massage to help keep my muscle soft, seems this is where my problems start. The tripper shots do help, but I do have months in between my awful attacks
(lasting 3 weeks solid). I could use tripper shots weekly (medicare has cut us back to every
four months.

suszy39 | @suszy39 | Dec 15, 2025

In reply to @rnlorena "@suszy39 I was diagnosed with Occipital Neuralgia by a Neuro-Opthalmologist in Texas and the only thing..." + (show)

@rnlorena

@suszy39 I was diagnosed with Occipital Neuralgia by a Neuro-Opthalmologist in Texas and the only thing she did was press on my neck and ask if I had any tender spots when she did it. I did feel a spot or two that was sore but nothing really bad. I went out of state because I could not find any Doctor where I live to give me a diagnosis. They blamed it on my blood pressure and that is not it. I have had pressure in one place at the back of my head. No sharp shooting pains. So they put me on gabapentin. I have been taking the gabapentin but I don't get side effects from it but I still get head pressure. When I get head pressure my blood pressure goes up. I am in control of my blood pressure. So then after I came home I decided to look closer to home and found a Neuro-Opthalmologist in Alabama and she thinks I don't have Occipital Neuralgia. I have read all about it and I don't have the sharp shooting pains in my head and the other things it says. I am not sure I have it either. So I talked with my Doctor and he is sending me to a group of Doctors who do pain management and more. I spoke with someone in the office today and she told me they also burn the nerves if needed. She told me what to look at on their website it explains a lot. So If I get numbing plus a steroid shot the steroid will make my blood pressure go up. I know this because I had an injection in my back and it did just that. I have been on B12 for some time now. It will be another 30 days before I get to see this Doctor. The appt isn't till January. Then they talk about what they can do for you. So January makes it 11 months that I am still waiting for more help. Gabapentin is one of the medications they give for Occipital Neuralgia and as I said before it hasn't caused me any side effects. I am grateful for that Yet I still get head pressure. I am surprised you are only getting injections. So the shots only last for about three weeks? Since it will be 30 days till I see this Dr. I will have to come back with some responses on what they can do for me and let you know. It is like the goal post keeps moving away from me. I also am aware you can only get so many steroid shots in a time frame. What kind of Doctor did you see to get diagnosed? Did he offer you any type of oral medication? I look up all meds so I am aware of any side effects. I research everything because that helps me to think about what questions to ask. @rnlorena

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@rnlorena Thank you for your comments. I am a typical occiptal Neualgia sufferer. Pain belgan on my right neck muscles, travels up right side of my head
. They put me on Gabapentin about two years, I finally slowly took myself off did not feel
it helped at all. Ablazgon was performed three years ago (nothing). I have Neuralgist, but they
will never give me anothing for pain, if you go to emergency they give yu mingraine cocktell but
when that wears off you are back at #1. They have sent me to a pain centre He gives me trigger
shots, of course they help but a few months later another attack (they last three weeks, all day
all night). Ice pack, heat, massage etc. I read on this sight about a person who sounds just like
I feel, same probelm, they gave her Valium/Medrol shots. Beleive you me I will be asking for
this combo my next shot date Jan 12, 2026. So thankful to share our common problems. Other
than these awful ice pick headachs I am in good leath. Many Many Thanks

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