Occipital Neuralgia: What treatments work for you?

In the second year of ON, nerve blocs showing diminishing results to relieve severe pain for my wife. Her pain mgt MD is suggesting laser treatment of the nerve as an indicator of the potential success of a Rhizotomy (destruction of joint nerve) He also prescribed Lyrica. She's in PT and getting regular chiropractic treatments. Her pain is severe causing her to take over 2000mg Motrin daily (which her MD nixed yesterday). We are wondering if anyone has issues with Lyrica and success with nerve destruction? In addition she is scheduled to see a neurologist specializing in headaches.

I definitely have ON - diagnosed with nerve blocks by a pain mgmt doc, a neurologist, and a physical medicine doc. The nerve blocks helped only as long as the lidocaine lasted - about 6 hrs. Then the pain came flooding back - as it does for about a month at a time. I then experience relief for a couple of months, and back it comes. Has continued this pattern for more than 3 years. I've tried everything - most recently Botox. Nothing relieves the pain except morphine sulfate - not accupuncture, massage, physical therapy, chiropractic, medications (I'm intolerant to all of them!). I'm seeing a neurosurgeon in a few weeks to discuss possible procedures - either occipital release surgery or electrostimulation implant. Would love to hear from someone who has had either of these.

@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

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?

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.

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.

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!

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.

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. 😊🙏🌹🤕

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