1. < Brain & Nervous System

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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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 13, 2022
In reply to @amandajro "Hello @lakesofdelray and welcome to Mayo Clinic Connect. I see that member @oliverony has come in..." + (show)
@amandajro

Hello @lakesofdelray and welcome to Mayo Clinic Connect. I see that member @oliverony has come in to share some information with you.

Since there was an existing discussion on the topic, you will see that I have moved your post here:
- Occipital Neuralgia: https://connect.mayoclinic.org/discussion/occipital-neuralgia/

I did this so you may connect with more members such as @patsy5 @lisa2022 and @rwinney. How long have you suffered from these episodes?

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Hello @lakesofdelray, welcome.

Isn't it awful, the burning pain? I'm sorry you're struggling . As you'll find, self-management can play a pretty big role in addition to medication and treatments. Calming the CNS was a whole new task I needed to learn as complimentary therapy.

I tried Botox, nerve blocks and ablations to no avail. What types of treatment are you currently receiving? Are they helping?

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1 reply
bonniethompson1234 | @bonniethompson1234 | Nov 13, 2022
In reply to @lakesofdelray "I thought caffeine is a no no. Have you tried a nerve block or medicinal marijuana?..." + (show)
@lakesofdelray

I thought caffeine is a no no. Have you tried a nerve block or medicinal marijuana? I feel like I lost my old life. It’s awful. Thanks for the suggestions

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It is like we lost our old lives. Can’t go for a walk, or dance, even cleaning the house is monumental.

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lakesofdelray | @lakesofdelray | Nov 13, 2022
In reply to @bumble81 "I have it. It actually got better and stayed better for years and then I had..." + (show)
@bumble81

I have it. It actually got better and stayed better for years and then I had surgery to remove my uterus. As soon as I woke up I asked for pain meds because my head hurt so bad. And then it stayed that way for a year. Now it just hurts when it gets aggravated by being touched. I suspect the base of my head was resting on something during surgery and that is why it came back after surgery.
I believe my ON was caused by a fall off a horse.

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How did it get better ❤️‍🩹

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lakesofdelray | @lakesofdelray | Nov 13, 2022
In reply to @rwinney "Hello @lakesofdelray, welcome. Isn't it awful, the burning pain? I'm sorry you're struggling . As you'll..." + (show)
@rwinney

Hello @lakesofdelray, welcome.

Isn't it awful, the burning pain? I'm sorry you're struggling . As you'll find, self-management can play a pretty big role in addition to medication and treatments. Calming the CNS was a whole new task I needed to learn as complimentary therapy.

I tried Botox, nerve blocks and ablations to no avail. What types of treatment are you currently receiving? Are they helping?

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Sorry nothing helped. Did you try acupuncture

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 13, 2022
In reply to @lakesofdelray "Sorry nothing helped. Did you try acupuncture" + (show)
@lakesofdelray

Sorry nothing helped. Did you try acupuncture

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Thank you. Yes, but it did not work for me. I ended by being diagnosed with Central Sensitization Syndrome.

Are you thinking of trying acupuncture?

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1 reply
lakesofdelray | @lakesofdelray | Nov 13, 2022
In reply to @rwinney "Thank you. Yes, but it did not work for me. I ended by being diagnosed with..." + (show)
@rwinney

Thank you. Yes, but it did not work for me. I ended by being diagnosed with Central Sensitization Syndrome.

Are you thinking of trying acupuncture?

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I will try anything

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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 15, 2022
In reply to @lakesofdelray "I will try anything" + (show)
@lakesofdelray

I will try anything

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Life certainly does change. I'm not thrilled about how my life has changed either. Sometimes acceptance is difficult to come by but with every change in life we have two choices - we either make the most of what we do have by working on stress-management, coping skills and finding joy, or we stay where we are and let our negative mindset keep us stagnant. It takes work, but can be worth it. Treatments, procedures and medications may help, but they can't do it all.

Have you scheduled an acupuncture appointment yet? Do you mind sharing a bit more about what you have tried and how long you have been on your pain journey?

REPLY
mary45 | @mary45 | Nov 21, 2022
In reply to @lisa2022 "Hello Jennifer, I read your comments and they are similar ( but different) than mine. I..." + (show)
@lisa2022

Hello Jennifer, I read your comments and they are similar ( but different) than mine. I have pain in the back off my head when laying down and my scalp is sensitive to touch, but its much worse than that, I also have face pain, jaw pain, pain behind my ear. I just did a nerve ablation of c1,c2,c3,c4 and I'm three weeks in, however, I have not seen any improvement. I know this pain I have I is related to my cervical spine, as movement can light up the nerves and I cannot lay on my right or left side for that matter. Sleeping is difficult and my pain ranges from day to day. I have started to get pain when eating now... so, I have symptoms of both Occipital Neuralgia and Trigeminal Neuralgia. Do you have a doctor that has experience with upper cervical spine issues and treating people with ON/TN? I'm 58 and I don't want to be on a lifetime of anticonvulsants ( which fail over time) not to mention the side effects. Any help is appreciated.

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I think whatever the problem is the headache sounds like Occipital Neuralgia that might be due to the Occipital never compression. I have heard that Occipital Nerve decompression surgery is a very promising fix to that problem as well as the Trigeminal Neuralgia. Sometime that would help your neck and possibly shoulder pain and muscle spasm. Good luck

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1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 21, 2022
In reply to @mary45 "I think whatever the problem is the headache sounds like Occipital Neuralgia that might be due..." + (show)
@mary45

I think whatever the problem is the headache sounds like Occipital Neuralgia that might be due to the Occipital never compression. I have heard that Occipital Nerve decompression surgery is a very promising fix to that problem as well as the Trigeminal Neuralgia. Sometime that would help your neck and possibly shoulder pain and muscle spasm. Good luck

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@mary45. I only had occipital neuralgia for 3 months but platelet rich plasma injections and occipital nerve blocks have stopped it for about 4 months now. Not sure if this would be helpful to you or not but thought I’d share.

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SusanEllen66 | @SusanEllen66 | Nov 30, 2022

Hello! I was diagnosed with ON a few months ago. I started physical therapy two weeks ago. That helps for a few hours.
Now I believe that the pillow I bought about 6 months ago is the culprit. I wake up with headaches, shoulder pain and scalp pain.
I bought a new pillow today that is supposed to be good for someone with ON.
Praying for some relief.

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