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Medications & Prescription Treatment

Doctor vs. Patient

  • By Jules2dl

    I’ve been around the block a few times with doctors, mostly neurologists, about preventative treatment for my headaches. As you can imagine, I’ve been on so many meds in 44 years, I can’t remember them all. Some I think I may have tried, but I’m not really sure.
    What really gets me down is that when you tell a doctor you’ve tried that before, and you don’t want to try it again, they persist until you agree. There are whole classes of meds out there I’ve never been on before, why can’t we try one of those?
    I was on one drug for over a decade, getting very bad side effects from (asthma and Raynauds), and my doctor said it’s probably helping my headaches so I should stay on it. It wasn’t helping them at all, I was in the ER at least once a month, still having over 15 migraine days per month and chronic daily headaches as well.
    When you change doctors, that first visit is usually very expensive, so its not financially prudent to change docs all the time. So how do you get them to listen to you about your treatment? I don’t want to keep taking the same old meds I’ve already tried. It just seems fruitless. I’ve been on the same combination of drugs now since last September, slowly increasing the dosages until the max dose was reached in December. In March I was in the office twice in 2 weeks for rescue treatment. I’m still having daily migraines which get worse with weather changes. Has this been a fair trial on this med regime to say I want a change? I do have an appointment at the Jefferson Clinic in October, so I’m hoping for some more aggressive, or at least original, treatment from them.
    Thanks for this website, it is tremendously helpful, informative, educative, and comforting.
    Julie

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  • By Nancy Harris Bonk Moderator

    Hi Julie,

    It IS very frustrating to try medication after medication and not seem to get anywhere. Many of us are a bit too complicated for most general neurologists, that’s why it’s a good idea to be treated (at least initially) by doctors who are board certified in headache medicine, like the doctors at Jefferson!

    In preparation for your upcoming appointment at the Jefferson, you may want to keep a detailed migraine diary. This will give you and the doctor there a head start so to speak about what’s going on with your attacks. Let me share information that may help with this; https://migraine.com/blog/keeping-migraine-diary-basics/.

    Let us know how you make out at your appointment,

    Nancy

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  • By Jules2dl

    Nancy & Jamie;
    Thank you so much for your replies. I am keeping track of my migraines.
    I really appreciated your comments Jamie. I am willing to do what it takes to have a better life, especially if the doctor or team I’m working with can explain their choice of treatment to me. I want to be a partner in my care. I once spent over a decade on a med which I got horrible asthma from (and blocked inhalers from working) because the Dr said it was probably helping my migraines. This was a headache specialist.
    There is only 1 thing which I have very strong feelings about not trying, and that’s Botox. But I think there are enough alternatives now that saying no to one thing hopefully won’t be a problem.
    What concerns me the most is how do I find a doctor here in Illinois who will be willing to follow the instructions of the doctor from Jefferson as we try different things? There is an infusion clinic near me, that I know. Can the docs at Jeff just call in orders there? And scripts to my pharmacy? Do you know how they handle out-of-state patients? I may be able to afford going to Philly 2-3 times a year, but not much more than that. This worries me.

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  • By Jules2dl

    Jamie, you have been so helpful and encouraging! I can’t tell you how much I appreciate both.
    I find myself feeling hopeful for the first time in many years. I keep cautioning myself about it though, as more often than not I’ve found that a little hope is a dangerous thing, as far as my migraines are concerned anyway. Truly though, it sounds as if Jefferson is on a different level than even the Diamond Clinic.
    I tried calling my internist today to see if he’d work with Jefferson, but of course he wasn’t in. I have a feeling my neurologist might be offended if I asked him, so I’ll wait and see what the internist says.
    I will keep you in my prayers ~
    Julie

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