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New here. I have an appointment with a neurologist in two weeks following a diagnosis of chronic atypical migraine (onset 10/2021) Also seeing a PT and a DC and sleep disorder specialist who are knowledgeable about Ehlers-Danlos Syndrome (EDS) a connective tissue disorder that (in me) causes spinal instability and GI mobility/breathing disorders since birth. Any ideas about what I can expect or do at neurology?

  1. @Janetwriter Hi! Welcome to the community and thank you for sharing with us. I'm happy to hear that you've made an appointment with a neurologist to discuss the diagnosis of chronic atypical migraine. I will share with you my experience and what I have heard from other people regarding their first appointments. At the appointment you can expect to go over your current medications and medical history which is pretty typical of any doctor. The neurologist will likely have questions for you and ask you to talk about what is going on so that they can get a better understanding of what you are experiencing. If you have had any imaging done this will also be something the doctor will look at and want to discuss with you. The neurologist will ask about the severity and frequency of migraine attacks as well as what an attack looks like for you. For example, what type of pain you are having (throbbing, stabbing, etc.) and where the pain is located (neck, behind the eyes, etc.) The neurologist will also want to hear about what symptoms you are experiencing. I was asked to complete a headache/migraine diary of what I experience daily and this is something that was discussed at the appointment. Also the neurologist will want to know what you have tried in the past as far as treatment and what those outcomes were. You will likely leave the office with an action plan and a follow up appointment to discuss how things went after starting this new plan. If I could give you some advice it may be to come to the appointment prepared. It may be helpful for you to write down any questions/concerns you may have for the neurologist . This is something I did not do but wish that I had! Everyone's experience is different so what happened at my appointment may or may not occur in yours. I hope the appointment goes well for you! Feel free to keep us updated on how it went. I know this may be overwhelming but know you are not alone and we are here to support you. Warmly, -Kim (Team Member)

    1. Thank you Kim!

      1. You are welcome! Always for here if you need anything 😀
        -Kim (Team Member)

    2. Welcome to!! We're so glad you found us! Living with multiple chronic health issues can be frustrating. It sounds like you are taking the steps to get accurate diagnoses.
      We have information on what to expect at a doctors appointment and how to prepare for one you can find here;
      Good to hear you are seeing sleep specialist. There are so many sleep disorders than can trigger migraine, restless leg and periodic limb movement disorder to name a few!
      Will you let me know how it goes with the doctor? Nancy Harris Bonk, Patient Leader/Moderator Team

      1. thank you! Appointment is at 12:30 MST today. I have a medical history list I take to all new-to-me providers and I wrote up a separate list of family history of migraines, my symptoms/frequency/intensity/triggers, and assorted comorbidities. Decided to send copies to my daughter (47) and granddaughter (25) so they now have a family history reference. Will let you know how it all shakes down. I suspect there will be tests to rule out other stuff.

      2. Looking forward to hearing about your appointment!
        Nancy Harris Bonk, Patient Leader/Moderator Team

    3. I didn't see your posts when I wrote mine -- you guys are rockstars! <3

      1. You are too kind!! Right back at you!!
        Nancy Harris Bonk, Patient Leader/Moderator Team

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