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How do others deal with a neurologist who keeps adding medication?

I have intractable migraines with aura and also hemiplegic migraines plus I also suffer from unresponsiveness during some of the migraines. Today during a stress test, right in the middle walking the treadmill I went unresponsive. Just felt that feeling of all air leaving me and then I woke up to a room full of doctors and nurses and a code blue. Trying to explain while I couldn’t talk because of the hemiplegic migraine was hell. The words wouldn’t come out like I wanted them to in my head. I ended up in the ER with husband trying to explain what was happening.

How do others deal with this? Twice I’ve ended up in ER because my breathing becomes shallow and I just go limp. I come out of it with a 2 person feeling. I feel fine in my brain but my body doesn’t do what I want. Sometimes I snap out of it within minutes, other times it takes hours or days before I can regain movement of a side of my body to language or cognitive skills. My neurologist just keeps loading me up with more pills. And the more pills I take the more shortness of breath I have and the higher my heart rate (reason for stress test). He said it was my heart (it wasn’t, came back great). I say it’s all the meds making me unresponsive. I never had this till I was prescribed topamax and with each dosage increase the worse my breathing and heart rate and then I get unresponsive. I’ve asked for Botox but both neurologist refuse. I’m so frustrated. My family doctor finally got fed up from seeing the last MRI of my brain and saw over 24 white matters on my brain within a year and he gave a referral for Rochester Mayo Headache Clinic and luckily my case was bad enough I was accepted to be seen by their team of neurologist. But, that’s 24 days away yet. What can I do from now till then? I can’t just keep going unresponsive and having these stroke like symptoms.

I feel like I’m being pushed aside because “you can’t die from a migraine” as far as my neurologist says. I sure feel like I am when I can barely breathe, heart is pumping like crazy and I miss more work that I make it to work. I’m going to lose my job soon. How do others handle all this?

  1. Hi meshellkober,

    I'm so sorry to hear about that - it must have been scary!!

    I see you have an appointment at the Mayo Clinic, this week? That is a good start. Do you know the doctor you will be seeing? Dr. Christopher Boes, Dr. Fred Cutrer, Dr. Ivan Garza, Dr. Kenneth Mack, Dr. Carrie Robertson, Dr. Robert Sheeler, and Dr. Jerry Swanson are all doctors who are board certified in headache medicine and I believe practice at Mayo/MN. You may want to make sure you see one of these doctors, rather than a general neurologist there.

    Let me share information that may help you get ready for your appointment. Preparation is key to making the most out of our appointments with busy doctors;

    Please let me know who your appointment goes.

    1. I’m seeing Ivan Garza but honestly he is worse than the other 2 neurologist I saw. He said I have hemiphlegic migraines. Saw him one time and he took me off all meds. All of them and told me to take Aleve then a week later get a call from his nurse saying I had a stroke from an mri. So, I have no meds for the migraines and a stroke to deal with and a neurologist I can’t seem to get any communication from as far as what now?
      Crappy attitude; check.
      Feel like giving up; checked off

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