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Feel helpless from the lack of support in coming up with a migraine regimen

With my chronic migraines, I find it extremely challenging and exhausting to navigate healthcare. I am currently trying multiple preventive migraine medications and I am in the process of finding a regimen that best suits my body. I am sensitive to medications and in the process of coming up with a regimen, I do have some valid questions to my neurologist about the following

the side effects I am experiencing and how to manage them
the dosage increase/decrease to experience optimum headache relief
timing of the medication
drug interactions , since am on multiple preventives
questions on rescue meds and combining with preventives am taking

I message the doctors through the healthcare messaging portal and I am not getting a response even after follow up messages/phone calls, I am seeing this pattern with all the neurologists, even the ones with big reputed hospitals. I don't see this lack of response with doctors from other departments. My understanding is that the neurology doctors are busy and burnt out, probably due to the overwhelming number of patients needing neurology care and also due to the staffing issues in healthcare. While I understand this, I feel helpless and anxious when I need my queries clarified about the medications and don't have any support from my doctors. The appointments are always booked out for 3 to 6 months, so having to wait so long to clarify my queries and to come up with a medication protocol is exhausting. BTW I am not working currently due to my chronic migraines, and the plan is to get back to the workforce once my migraines become manageable with the medications, so I am running short of time here and feel the self pressure.

Do any of you have such challenges and can you share some pointers that will be helpful for me to navigate through this scenario.

Thanks in advance for taking the time to read my message. I appreciate your help 😀

  1. Hi there, . Thanks so much for taking the time to post and share your experience. I can understand why this would all feel so frustrating. Its a problem that many people in the community face. Unfortunately, I dont think there is a simple answer on how to get in touch with providers that are non-responsive. My hope is that some other people in the community will chime in with their own experience soon. In the meantime, hang in there! You are doing everything in your power to get the information that you need, and that is nothing less than admirable. - Cody (Team Member)

    1. Thank you so much for your response! I appreciate your time and help.

  2. I'm sorry to hear that you're experiencing this all too common challenge of getting answers to the many questions that we can have as patients - especially when trying a new regimen.

    One strategy that I have found helpful is to connect with nurse practitioner in the practice or your pharmacist. I find that the nurse practitioner has a greater role with supporting us between appointments and providing more education.

    Pharmacists are incredibly knowledgeable about medications so they may be able to answer some of the more general questions such as potential side effects and/or potential drug interactions. So while they may not be able to answer all your questions, they could potentially knock a few off your list.

    I hope that you find this helpful.
    - Alene, moderator

    1. thank you so much for sharing the resources, am planning to find a new headache specialist with the help of resources you have shared. I appreciate your time and help 😀

    2. My pleasure! Best of luck and please keep me posted! Pain free wishes heading your way, Nancy Harris Bonk, Patient Leader/Moderator Team

  3. - it is truly frustrating when you seek answers only to be ignored. I hope you get a chance to look around our site and see if you can locate responses to some of your questions here. There are so many topics and forums currently that I find it hard to not take others' experiences and anecdotes to heart.

    As you know, open communication with your healthcare team is crucial. If you continue to face challenges, don't hesitate to explore other avenues for support and information such as Alene and Nancy state, question a pharmacist or contact the nurse practitioner or other assistants in the office. You can also book another appointment just for communication purposes, book a telemed appt to assist in communicating about questions, or if you must, get a second opinion. Navigating migraines is tough enough. Stack this burden with difficulties involving healthcare professionals or offices, it can make it impossible to move forward and begin to manage your health successfully. Wishing you the best as you navigate through migraines and all it entails. Happy holidays. Rebecca (community moderator)

    1. Thank you Rebecca! I appreciate your help and the ideas you have mentioned to navigate through the health care, I have a couple of appointments with the neurologist in early 2024, to discuss my queries. Also exploring other options to find headache doctors.

    2. - that's wonderful news! Best of health and wellness to you and yours. Should you have other questions, do not hesitate to log on and post. Thoughtfully, Rebecca (community moderator)

  4. Hi All, I haven’t been on the site in a while, busy accumulating more health problems. Due to my dizziness, ataxia and neuropathy in addition to my chronic migraines, I have become housebound and fearful of going out. This has caused me weight gain due to immobility and frequent falls. As far as neurologists go, I cycled through more than I can remember. Most I ditched, some ditched me, others it was mutual. They all sang the same song, there is nothing I can do for you. Finally I started seeing a couple docs associated with Brown University. They actually respond to my portal messages and even call me. Most importantly they keep on thinking. So, don’t think twice about changing doctors, hopefully you will find one that is responsive. I agree with the suggestion of talking to your pharmacist. They are a wealth of information.
    That’s all I can write today, they are leaf blowing across the street, in the winter! Don’t we get a noise break! Hang in there everyone, Linda

    1. And thank you so much for the advice on changing doctors, am on a quest in finding a doctor that is a good fit for me. Hopefully I will be able to figure it out with the help of the valuable resources here on Take care and wish you well.

    2. connecting with the right doctor isn't always the easiest journey, but when you find the right fit, it's always worth the effort it took to get there. I'm hoping that you find someone that you resonate with and feels like a real champion for you.
      Alene, moderator

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