Migraines, Occipital Neuralgia, doctors have written me off?

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    I have had migraines since I was 14 (moved from CA to CO). I took Midrin as needed and worked fine. March 18, 2004 I woke up with what felt like a dagger in my head (right side above my ear). I went to the ER. No abnormal MRI (neck and Brain - small ischemic lesion), normal CT, normal x-ray, etc.. The pain never subsided. I lost over 25 lbs due to the nausea and vomiting. I took a leave from work, etc. I saw a Neurologist that tried every migraine concoction known to man... nothing. Pain meds (narcotic and non- no rebound- only on Stadol). Went to Pain Mgmt Office. They did Novocaine/Steroid injections into my axis, C1, C2 and it worked. Once every 3 months for 1 1/2 years. Diagnosis: Occipital Neuralgia. Then Nov 2007 it stopped working. They tried RF 2x. Nothing. Sent to consult from neurostimulator. It scared me and I never went back. Now went for Botox, EEG (seizure disorder), another RF, more meds, and nothing. Doctors have written me off and I have since lost another 25 lbs. My family can see me on a minute by minute basis go from fine to black sullen eyes, green/grey skin, bloodshot, lethargic and immense pain. Recently, cognitive and orientation is getting terrible... HELP!! I don't know what else to do. Mother of 3 kids. Used to be a national manager with a large firm on my way to my PhD. Now on disability. Gina.

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    Dear Gina;


    As I have written before in these pages, there are 300 medical and surgical platforms or underpinnings or causes/associations for headaches. That a technique stops working after some success is also not a great surprise. Most pain anesthesiologists still use the term occipital neuralgia, but for me it is a little passé. Occipital nerve stimulators, in great hands, can be a way to tone down the tempo of bad headaches. Unfortunately, I see the failures of these approaches, so my vision is tinted.


    At this point, your best option is to find and work with a good Migraine and headache specialist. It’s important to note that neurologists and pain management doctors aren’t necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.Good luck in your search for relief.


    Best regards,
    John Claude Krusz and Teri Robert



    To review other questions from our Ask the Clinician Column,
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    If you need help finding a Migraine and headache specialist,
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    About Ask the Clinician:

    Dr. Krusz is a recognized expert in the fields of headache and Migraine treatment and pain treatment. Each week, he and Lead Expert Teri Robert, team up to answer your questions about headaches and Migraines. You can read more about Dr. Krusz or more about Teri Robert.


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    Last updated January 8, 2010.

Published On: January 10, 2010