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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patsy5 | @patsy5 | Aug 10, 2022
In reply to @sunnyflower "Hello, are your symptoms positional? I have something similar but it only takes place when I..." + (show)
@sunnyflower

Hello, are your symptoms positional? I have something similar but it only takes place when I lie down and then for the rest of the night. The pain is very, very intense and I'm conscious of it the entire time I'm sleeping. When I get up it begins to wear off and can take close to an hour. But it is only on one side, only positional, and centered just above and around the top of my ear. If I touch my ear at the point of attachment to my head, that really hurts and even if I turn my head I reproduce that pain in my ear. Thank you so much for sharing your story
and I wish you all the best, Sunnyflower

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Hello, I hope you have found relief by now. Mine is also positional, just when I lie down. I have received some relief by taking two rounds of two steroid shots in the back of my head. It’s almost completely gone, and now I can sleep through the night again.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 10, 2022
In reply to @lisa2022 "Hello Rachel, I have seen this video and thought about it.. I believe "some" but not..." + (show)
@lisa2022

Hello Rachel, I have seen this video and thought about it.. I believe "some" but not all , of my pain could be an overloaded nerve system. I feel overwhelmed often. Something is going on with my neck however. It hurts to lay down. I could be 80% pain free while sitting up.. it's when something touches or put pressure on my face or head. But taking better care of myself could very well assist in helping me. I've started doing breathing exercises. ( I watched Wim Hof) at this point, I would drink cat urine if you told me it would fix things. I will keep this on the table for things to consider. Thank you for taking the time to respond and provide this video... I had watched about 4 months ago and forgot about it.

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Hey Lisa, @lisa2022. How are you doing?

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Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 10, 2022
In reply to @patsy5 "Hello, I hope you have found relief by now. Mine is also positional, just when I..." + (show)
@patsy5

Hello, I hope you have found relief by now. Mine is also positional, just when I lie down. I have received some relief by taking two rounds of two steroid shots in the back of my head. It’s almost completely gone, and now I can sleep through the night again.

Jump to this post

@patsy5 Wow, that is great news! What a blessing to feel relief after the steroid shots, and sleeping through the night. About how long do the shots provide relief before needing another round?

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patsy5 | @patsy5 | Aug 10, 2022

I’m not sure yet. I got the first round about 4 months ago, and started sleeping through the night again! However, the headaches did not completely go away, so I got another round just recently. It’s definitely better, but I don’t know how long it will last yet.

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lakesofdelray | @lakesofdelray | Nov 11, 2022

Has anyone found a solution to the pain and burning each episode brings

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2 replies
oliverony | @oliverony | Nov 11, 2022
In reply to @lakesofdelray "Has anyone found a solution to the pain and burning each episode brings" + (show)
@lakesofdelray

Has anyone found a solution to the pain and burning each episode brings

Jump to this post

It is horrible isn't it. I found a mix of things has really helped. Hope some of these are useful.

Meditation - For pain and mindfulness. I have found the Calm app amazing, especially Tamara.
Breathing exercises - very, very good with pain. Lots on youtube.


Keep breathing - a nurse taught me this one. When things are painfull, keep breathing. Also breathe out with something painful, eg Spinal Tap.
Coffee - caffeine is good.
Fresh orange juice - think it must be the sugar.
Almost zero sugar diet.
No alcohol.
Drugs - Oxy is ok but not really strong enough.

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1 reply
lakesofdelray | @lakesofdelray | Nov 12, 2022
In reply to @oliverony "It is horrible isn't it. I found a mix of things has really helped. Hope some..." + (show)
@oliverony

It is horrible isn't it. I found a mix of things has really helped. Hope some of these are useful.

Meditation - For pain and mindfulness. I have found the Calm app amazing, especially Tamara.
Breathing exercises - very, very good with pain. Lots on youtube.


Keep breathing - a nurse taught me this one. When things are painfull, keep breathing. Also breathe out with something painful, eg Spinal Tap.
Coffee - caffeine is good.
Fresh orange juice - think it must be the sugar.
Almost zero sugar diet.
No alcohol.
Drugs - Oxy is ok but not really strong enough.

Jump to this post

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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1 reply
Amanda Roe | @amandajro | Nov 12, 2022
In reply to @lakesofdelray "Has anyone found a solution to the pain and burning each episode brings" + (show)
@lakesofdelray

Has anyone found a solution to the pain and burning each episode brings

Jump to this post

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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2 replies
lisa2022 | @lisa2022 | Nov 12, 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?

Jump to this post

I've had the ON for a little over a year now... before it was Trigeminal Neuralgia ( which comes and goes) but the Occipital Neuralgia is always present. It can be very mild and extreme... I do my best not to let it get extreme. I am using many methods to manage muscle tension and pain. Latest is Botox... still not sure if it's helping. I will do a second round in about a month.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 13, 2022
In reply to @lisa2022 "I've had the ON for a little over a year now... before it was Trigeminal Neuralgia..." + (show)
@lisa2022

I've had the ON for a little over a year now... before it was Trigeminal Neuralgia ( which comes and goes) but the Occipital Neuralgia is always present. It can be very mild and extreme... I do my best not to let it get extreme. I am using many methods to manage muscle tension and pain. Latest is Botox... still not sure if it's helping. I will do a second round in about a month.

Jump to this post

Hi @lisa2022 - Ah yes, Botox....it was questionable for me too. I tried it for ON and migraine for well over a year, then finally had enough. The only thing to do is try. Give it time. Some people swear by it. I seem to recall my Neurologist said 3 rounds before you know.

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