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Occipital Neuralgia: What treatments work for you?
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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It is like we lost our old lives. Can’t go for a walk, or dance, even cleaning the house is monumental.
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 ReactionHi @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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1 ReactionI'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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2 ReactionsHello @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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3 ReactionsI 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 ReactionIt 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 ReactionHas anyone found a solution to the pain and burning each episode brings
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.
@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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