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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@authorchris

Thank you for your suggestion. I did check on Occipital Release Therapy - specifically, the John Barnes method. There is one practitioner near me. Unfortunately, she charges $160/session and does not take insurance nor is the registered with Medicare. Although the treatment sounded promising, this is not within my budget. The first round of Botox was not helpful at all. In fact, I'm just recovering from a month-long bout of O.N. The constant pain nearly killed me. The second round is scheduled for end of May. I'll do it, but I'm not very hopeful. My neurologist had never heard of occipital release therapy although it is offered by 2 hospitals here in the Los Angeles area.

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@authorchris it may be worth asking your doctor if using a suboccipital release device would be approved as an alternative to a session that is financially out of your budget, as well as safe for you. Amazon carries a variety of devices that are in the neighborhood of $20-40.

- Amazon: Suboccipital Release Devices
https://www.amazon.com/suboccipital-release-device/s?k=suboccipital+release+device
Have you ever seen these?

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@amandajro

@authorchris it may be worth asking your doctor if using a suboccipital release device would be approved as an alternative to a session that is financially out of your budget, as well as safe for you. Amazon carries a variety of devices that are in the neighborhood of $20-40.

- Amazon: Suboccipital Release Devices
https://www.amazon.com/suboccipital-release-device/s?k=suboccipital+release+device
Have you ever seen these?

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I’m not familiar with these items but will definitely ask about them at my
next appointment. Thank you so much for the suggestion.

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@authorchris

I’m not familiar with these items but will definitely ask about them at my
next appointment. Thank you so much for the suggestion.

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If your next visit is not soon, you might want to do a little research and reach out to your doc via their patient portal or a pone message in the interim, and not wait. My daughter is a telemed nurse, and routinely advises patients to do this if their next visit is more than 2 weeks away. If you get started now, you may be able to report positive results to the doctor on your next visit, or ask for more suggestions.
Sue

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@amandajro

Hello @carenr and welcome to Mayo Clinic Connect. I can see you are interested in learning more from @sunnyflower as you have a very similar experience.

Have you been to see a neurologist yet?

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Hello Amanda and @carenr. So sorry I took so long to see this! Please forgive. I write today to let you know that I am sick, some virus probably, and won't be able to give you the help you deserve, until I get better. Many blessings to both of you. Welcome @carenr!! I know you will find the support, encouragement, inspiration, empathy, caring, education and so much more here on Connect that I have. Warmest wishes, Sunnyflower. 😊🙏🌹🤕

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@authorchris

Thank you for your suggestion. I did check on Occipital Release Therapy - specifically, the John Barnes method. There is one practitioner near me. Unfortunately, she charges $160/session and does not take insurance nor is the registered with Medicare. Although the treatment sounded promising, this is not within my budget. The first round of Botox was not helpful at all. In fact, I'm just recovering from a month-long bout of O.N. The constant pain nearly killed me. The second round is scheduled for end of May. I'll do it, but I'm not very hopeful. My neurologist had never heard of occipital release therapy although it is offered by 2 hospitals here in the Los Angeles area.

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I had occipital headaches from a couple of head and neck injuries. I see a pain management doctor who has successfully done two radio frequency ablations for me. The first was good for two years. I'm in my second year now for the latest one.

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@barbbie

I had occipital headaches from a couple of head and neck injuries. I see a pain management doctor who has successfully done two radio frequency ablations for me. The first was good for two years. I'm in my second year now for the latest one.

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Thank you so much for posting your experience. I'd love to know more. Was it done in an office or outpatient? How long did it take? Were you anesthetized for the procedure? Were there any after effects? I'm so excited to hear about something that was actually effective!

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He does many of his procedures in his surgical center and a few in his office. The surgical center is very well organized. There's the preop section staffed with RNs and where the doctor talks with you about the upcoming procedure and marks the body part to be worked on. Versed is available if you choose. I am allergic to it so I go with the local only. In the procedure room is a RN and a tech using the fluroscope as well as the doctor. Procedures vary in length -a few minutes to half hour or so. If you take versed, you must have a driver to take you home and rest is in order. Depending on the procedure and location pain may take a couple of days to totally go or you might have relief after anesthesia wears off. In the postop section vitals are checked twice and sometimes I have left right after or I might take a little longer depending on how I am feeling. They always offer ice packs for injection site. About two weeks later I have a follow-up with a NP.
Radio frequency ablations give me the longest relief. The nerves are fried and it takes a while for them to grow back. My doctor is very bright and up-to-date on techniques. I am looking forward to an Iovera treatment on my knee. There is hope. You just have to find the right doctor. It took me 5 tries before this doctor called me and asked me to be his patient. He was asked to take me on by my current doc who was frustrated with my exceedingly long list of allergies.

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@wa34937

ON came crashing down on my wife second week of June, so much pain I thought she was going to faint. Walk in clinics, family doc, then ER for a Cat Scan, refused to give her a nerve block in the ER (new world of medicine I guess) waited two weeks to get a block which didn't help right away. Doing physical therapy, SLOWLY her intense pain subsided. We're hoping she's turned the corner finally, getting a second block this week. This is a terrible condition.

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I've endured this pain for the past 3 years. For me, it occurs about every 3 months, then lasts about a month. The pain is a 9 out of 10, non-stop. Only morphine relieves it, and then only for 6 hours or so. I've had more nerve blocks than I can count. Also many trigger point injections. I was unable to take any of the drugs prescribed due to side effects, which is not at all unusual for me. The last treatment was botox injections which didn't help either. The last drug prescribed was also a failure, and I think that's the last of the non-invasive treatments that Kaiser offers. I'll be seeking a referral to another facility where a procedure called Occipital Release is performed. Everything I've read indicates that it's very effective and not all that invasive. Recovery time is only projected to be 2 weeks. At this point I'll do anything to get relief. I'd love to hear from someone who has had this procedure.

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Let me offer sympathies to all who suffer from terrible ON. My wife started ON with two episodes in 2020 treated with nerve blocs. She's into her second episode this year, frequency is increasing, typically the first shot doesn't resolve requiring a second. She has had multiple skeletal issues requiring surgery and now violently reacts to Oxy so major surgery is not an option. We are curious about Occipital Release Surgery, how invasive is it and how successful?

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@wa34937

Let me offer sympathies to all who suffer from terrible ON. My wife started ON with two episodes in 2020 treated with nerve blocs. She's into her second episode this year, frequency is increasing, typically the first shot doesn't resolve requiring a second. She has had multiple skeletal issues requiring surgery and now violently reacts to Oxy so major surgery is not an option. We are curious about Occipital Release Surgery, how invasive is it and how successful?

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@wa34937 - Here is some information describing the surgery that you might find helpful while waiting for other members who can share their experience with the surgery.

Occipital Release Surgery: https://www.hopkinsmedicine.org/plastic_reconstructive_surgery/services-appts/occipital-release-surgery.html

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