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Chronic Pain and Epilepsy

I have been treated for tension headaches and migraines since 2009. I have tried antimigraines, analgesics, muscle relaxants, nonsteroidal-anti-inflammatory and steroids, ssnri antidepressants and obviously acetaminophen and aspirin. I have had Botox, never block injections and sphenocath. My MRI CT scan and blood work are all clean. I often have to go to the ER for pain. They give me Benadryl cocktail among other IV meds. They end with Diludid which helps but when is wears off the headache immediately comes back. Nothing has ever fully relieved my headache. I've tied massage, acupuncture, diet change and exercise. I just got out of the hospital after 3 weeks. My neurologist is out of ideas. He referred me to Mayo and even they said there was nothing they could do. My neurologist is doing another round of Botox and referring me to a headache center. I have had Epilepsy since I was 13. I didn't know if that could possibly contribute? I would really appreciate any help or advice anyone has to offer.

  1. Hi samantha122488,

    Thank you for reaching out to us and being part of our community. I'm sorry you are going through such a difficult time. Let's see what information I can give you that may help.

    The first thing that comes to mind is to see a "true" migraine/headache expert rather than a general neurologist. Neurologists may be find doctors but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, Parkinson's and others. Neurologists may claim to be "headache specialists" because they treat many patients with migraine and headache disorders, but that really may not be the case. A true migraine/headache expert is board certified in headache medicine which is different from being certified in neurology. Rather than going to a "headache clinic" I would encourage you to seek out the expertise of a true expert. You can read more about what makes these doctor special and how to find one; and

    By any chance do you take something every day, or nearly every day to help relieve pain? If we take migraine abortive medications such as the triptans or any kind of pain medication, prescription or over-the-counter, more than two or three days a week can create a situation called medication overuse headache, or moh which was formerly called rebound. If we are in an moh cycle, our migraine attacks will be more difficult to treat and we can end up in an endless cycle of pain that too is hard to break. I've been in a moh cycle, from caffeine (which is a drug, a stimulant) and it's not fun. We can stop moh by eliminating the offending medication. You can read more about moh here;

    I hope that helps, let me know what you think,

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