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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.

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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)
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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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I will try anything

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

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?

REPLY
1 reply
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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)
Profile picture for lisa2022 @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.

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

REPLY
2 replies
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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)
Profile picture for oliverony @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.

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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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