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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Cathy | @njzmom | Jun 12 9:39am

In reply to @tessie69 "I'd like to hear from anyone who suffers from pain from occipital neuralgia." + (show)

I’ve had migraines for 40+ years and FINALLY received relief when my neuro put me on Quilipta. Almost to the day of starting that, I began experiencing a new type of headache that I thought was a tumor behind my eye. Grateful it isn’t a tumor. After significant frustration and multiple specialist referrals, I returned to my neuro, who diagnosed me with ON. She has referred me for PT, with dry needling and possible nerve oblation. My first session was terrific and all he did was deep muscle massage. I am hopeful!

pierwell | @pierwell | Jun 12 3:50pm

In reply to @njzmom "I’ve had migraines for 40+ years and FINALLY received relief when my neuro put me on..." + (show)

I hope you continue getting help.

ukee | @ukee | Jun 15 11:01pm

In reply to @tessie69 "I'd like to hear from anyone who suffers from pain from occipital neuralgia." + (show)

I have for 9+ years.

Lisa Lucier, Moderator | @lisalucier | Jun 17 2:31pm

In reply to @tessie69 "I'd like to hear from anyone who suffers from pain from occipital neuralgia." + (show)

Hi, @kasey7 - welcome to Mayo Clinic Connect. I appreciate your compassion and empathy for @judic0927. Sounds like you've been on a super challenging road yourself, with the TBI from your motorcycle accident leading to migraine and occipital neuralgia.

As long as you are not giving another member medical advice and instead sharing what has worked for you, you are welcome to share the names of medications that have or have not helped you. Here are the community guidelines, if you want to have a look https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/.

kasey7, you talked about arthritis in your neck triggering the ON and migraines, almost daily. How did you find out that this was what was happening? Do you have distinct flare ups of the arthritis in your neck where you know the symptoms of ON and migraine are coming?

blueskies10 | @blueskies10 | Aug 29 1:16pm

In reply to @rwinney "Hi @lisa2022. I'm so sorry to hear about your difficulties with occipital neuralgia, headaches, jaw and..." + (show)

@rwinney

Hi @lisa2022. I'm so sorry to hear about your difficulties with occipital neuralgia, headaches, jaw and face pain. I empathize with you. I'll share my story as food for thought.

I began having neck pain when I was 46. MRI's showed mild and moderate bulging disk and herniation. I tried PT and acupuncture to no avail. No surgical fix needed, so it was on to pain management. I had neck nerve blocks and radio frequency ablations on C4-7 for 2 years. I thought it might have been working, but not. I also was having "head pain" which encompassed migraines, cervicogenic headaches, half side, whole head, immense pressure. I couldn't lay my head on a soft pillow and slept in my living room recliner for the better part of 3 years. It was on to an occipital neuralgia diagnosis and both side occipital blocks, followed by RFA's. I also had Botox in my head, temples, forehead and shoulders. I thought that might have been helping, but not. I experienced jaw pain and face pain, among other areas. I was diagnosed with small fiber neuropathy which naturally causes nerve pain so I guessed that was my cause for everything. I got on nerve meds like Gabapentin and later Lyrica. In addition I was giving myself stomach injections of migraine meds like Emgality after trying all the triptans. Again, not much helped or was a game changer. It was a difficult, frustrating and confusing time.

I'm sharing the part of my story that is closest to yours. I always encourage people to seek out causes, fixes and cures. Get 2nd, 3rd opinions. Go to Mayo Clinic if possible. After it all, if you are still suffering, procedures and medications are not helping, doctors are out of answers, and you are becoming emotionally distressed, you may consider thinking outside the box. I came to my own conclusion of central sensitization and found this video by Dr. Sletten of the Mayo Clinic about Central Sensitization Syndrome (CSS):

My story ended with coming to the realization I had this umbrella of a chronic pain syndrome called central sensitization. All the meds, injections and procedures were not working because they were furthering the upregulation of my central nervous system and causing more harm than good. Doctors had nothing left to say or help me with. I had to help myself.

Please be mindful that if you don't find your "fix" and a way to pain relief, keep this information in your back pocket as a back up plan of action and knowledge. Hopefully, I didn't overwhelm you too much. Keep your chin up and keep persevering. I wish you good luck and positive vibes.

Will you let me know your thoughts on what I've mentioned?

Jump to this post

Rachel. @rwinney Maybe I missed it because I'm in excruciating pain from new onset of occipital neuralgia, but did you find a way to lessen or stop your pain? I've had small-fiber neuropathy also for 20 years, but these ice-pick headaches are new to me. Could SFN be the cause? What is the cure? I've been on Gabapentin for 3 days. At first it seemed to help. Now it feels like it isn't doing anything. I'm up to 400 mg a day now. And I'm taking extra-strength Tylenol.The pain is every few seconds right now. It's really hard to take. Any advice would be really appreciated.

pierwell | @pierwell | Aug 29 2:43pm

It’s horrible. Try ice packs or heat. Ice works best for me, coupled with Tylenol, Celebrex and nerve stimulator. Good luck.

Rachel, Volunteer Mentor | @rwinney | Aug 31 7:59pm

In reply to @blueskies10 "Rachel. @rwinney Maybe I missed it because I'm in excruciating pain from new onset of occipital..." + (show)

Hi @blueskies10, it sounds Iike a very difficult time for you. I'msorry and am hopeful you've had some settling after taking gabapentin steadily with increased dose. It may take time to provide relief. In addition to nerve medication, what has worked for me are very basic tools to work alongside, like diaphragmatic breathing, mindfulness exercises, physical fitness and joyful, funny distraction. I know it sounds crazy, but the more you direct your brain elsewhere, the more likely your brain can stop "accessing it's pain network". What sorts of distraction do you find enjoyable? Do you have hobbies you enjoy or phone calls to someone who makes you laugh?

chell926 | @chell926 | Sep 1 12:29pm

In reply to @SusanEllen66 "@med216 I also have ON. My pain is just like what you described plus other things...." + (show)

Can I ask what type and brand pillow works for you. I feel like I’ve spent way too much money testing pillows and haven’t found anything that works. I feel like my migraines start at my occipital area. Thank you!

pierwell | @pierwell | Sep 1 7:08pm

I have to sleep on my right side bc of the occipital neuralgia on the left, and I use two very soft pillows. I think the brand is Fluffy, and I use Blissy silk pillowcases. Good luck!

rnlorena | @rnlorena | Sep 3 10:46pm

@jmb73 I very recently found out I have occipital neuralgia. I was having head pressure. I went to several Doctors where I live and got no answers so I researched Houston Texas. One because they have a ton of Neurologists and Neuro Opthalmologists. So I drove to Houston on the 17th of August and I had a neurology appt on the 20th. I had a neuro-ophthalmology appt for Sept 29th but I told the girl I had been dealing with this for six months. I happened to luck out and I got a call while I was there and I got an appt for the same day as the neurologist. He did not diagnose me but he was good. Offered me haldol infusion, duloxetine which is an (antidepressant) and nerve blocks. He gave me his notes and that afternoon I saw the neuro ophthalmologist. She is exemplary. She diagnosed me with the occipital neuralgia and gave me gabapentin 100 mg three times a day. I drove home the following Sunday and my med came in the mail on Tuesday. After having head pressure for 6 months the gabapentin is working. I couldn’t take the duloxetine because I took antidepressants in the past and they worked for depression and hot flashes however, I had horrible dreams and I acted out one and fell out of bed. It was a constant battle. Therefore I will not take them. In February it all started with head pressure and blurry vision. Then it was feelings near my eyes then surrounding my eyes. I now have dry eyes. Occipital Neuralgia can cause dry eyes. I have had some head pressure but nothing like I was having. I also have fleeting head pains. I may have to have my gabapentin increased but I have only been on it for 10 days. I can’t take antidepressants, didn’t like the idea of a nerve block or haldol infusion. I hope you get something that helps. Please let me know how you are doing. @rnlorena