Newly prescribed Zonegran aka Zonisamide 50mg

I’m a longtime sufferer of Migraine – almost exactly 30 yrs. I’m now at state of chronic intractable migraine. I’ve had the same unrelenting migraine since May 2018. Today my pain management doctor (I don’t really trust the guy. He’s always rushing me out the door and forcing procedures on me. I’m sure some of y’all know the drill, but he’s the only Dr within 100 miles of where I live that sees ppl with my type of combination of conditions) Anyway, I’ve been on Trokendi XR 200mg for a couple of yrs now and it has stopped preventing most of my worst Migraines to the point where I need either a rescue medication or something to put me to sleep nearly every day. He decided to prescribe me something called ZONEGRAN (brand name) aka ZONISAMIDE (generic name) at 50mg twice daily, but I’m scared to take it due to the side effects. I’ve been diagnosed with 3 slipped discs, bursitis, osteoarthritis, fibromyalgia, chronic intractable migraine, having not enough bend in my neck and all the stuff that goes along with those things. In addition I’ve been diagnosed with depression (the permanent kind), anxiety (also permanent), IBS, reflux and I’ve had my gall bladder and 1 of my kidneys removed. This drug comes with warnings that effect many of the systems I’ve listed. I don’t know if I should even attempt to take it. If I call his office I’ll be told to schedule an appointment. Thing is i am on Medicaid and he doesn’t accept it. I’m paying $101 cash each time i see him. I am on a fixed income and won’t have the money to pay him for another 3 weeks. Advice?


Community Answers
  • Holly Baddour moderator
    2 months ago

    Thank you for reaching out and hopefully our community members will chime in who have experience with the medication you’ve mentioned here.

    In the meantime, while we cannot provide medical advice, I want to validate your concern about not feeling heard or thoroughly enough cared for by your current physician. It’s very unfortunate that he is completely unavailable to you by any mode of communication (phone call, email, nurses line) in between appointments should you have questions or concerns. Perhaps it’s worth trying to call – to clarify you need to have some questions answered regarding the side effects of a new medication and insisting on getting a call back from a nurse in his office.

    If unable to get your questions answered by your current specialist, it might be time to seek a new physician/specialist. I realize that you are hemmed in by logistics due to both cost and location, but perhaps it’s time to do a new search of the options in your area in case there is someone new available.

    I understand that you have a unique combination of conditions which makes you feel that this doctor is your only choice, but here is a list of migraine specialists in case that’s of help: https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/.

    And, regardless of whether or not you can find a new specialist, perhaps even having one appointment with a general practitioner to consult about this medication and how it interplays with your other medications might be in order since you are having these concerns?

    It is very reasonable of you to ask these questions and very responsible of you to be seeking these answers before adding new medications into the mix.

    Thanks again for reaching out. So glad you’re a part of our community. Please stay in touch.

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