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Living with Migraine

Long Running Bad Cycle

  • By Monkeybrew

    Continued Bad Migraine Cycle
    So it has been months now that the migraines are completely out of the box again. Intensities are at or near the top of the scale just about every #ing day. The daily frequency has never, never stopped for me (not in the past fifteen years). What a #ing life!?!

    So what is there to do? Well I am waiting on my health insurance and new pain program physician to work out a pre-authorization for an external trial for a neurostim implant with four leads, bilateral supraorbital and bilateral occipital. If the insurance approves, the physician is ready to move forward.

    It has been about three weeks since my first visit with the physician and I have heard nothing yet on the status.
    In the interim I feel like I am dying.

    The only bright spot is that I had done a few short (nine day) bursts of steroids (dexamethasone) and that seemed to help at the second day of the highest dose. Unfortunately, only for one day.
    I spoke with my PCP and he agreed to do a longer run on the dexamethasone. I am two days into a 50 day burst, rather than nine! The dose is much higher too (which I hope will be a good thing).

    So far, yesterday and this morning have been absolutely horrible. I am traveling for work, so there are lots of things that are different (triggers?). Perhaps once I get back home into the “normal” routine the steroids will show off their ability to stop these life-destroying, mind-shredding, soul-eating, #ing migraines!!!!

    Ain’t I a ray of sunshine this December morning!?!

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  • By Nancy Harris Bonk Moderator

    Hi Monkeybrew,

    I’m sorry things are so tough right now, many of us are right there with you, including myself. It certainly makes for a miserable time. You’re not alone!!

    You’ve got a great point, travel can really mess with our heads. A regular sleep schedule, eating at regular intervals and avoiding our triggers can be very difficult when we travel. We have a few articles on traveling with migraine that may help; https://migraine.com/blog/will-travel/ and https://migraine.com/blog/travel-one-of-favorite-things-may-be-one-of-worst-triggers/ and https://migraine.com/blog/is-flying-giving-you-a-headache/.

    I also noticed you are working with a PCP. Have you had the opportunity to see a “true” migraine/headache specialist? If we’ve talked about this before, please forgive me. Migraine/headache experts are doctors who are board certified in headache medicine, current on migraine/headache treatments and research and are different from neurologists. It’s not that neurologists aren’t good doctors, rather they have a difficult time being experts in one area because they treat so many different disorders such as epilepsy, multiple sclerosis, stroke, Parkinson’s and others. Migraine/headache experts treat one condition all day, every day – migraine and headache disorders. If you haven’t seen this information on how these doctors are special and how to find one let me share it with you; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/. Seeing a true expert can make a huge difference in our migraine treatment plan.

    I hope this helps!
    Nancy

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