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At the end of my rope

  • By AnnieK

    Hi, I’m new here, but thought I’d share my story. I’m 54 years old and have had migraines since the age of 12. I’m a patient at the Cleveland Clinic Migraine Center. I have been on 53 medications (both preventive and rescue) + botox. Tried yoga, acupuncture and recently finished three days of infusion therapy. All without relief. I live with a painful, daily migraine and I don’t see an end in sight. I’m running out of hope and options. At this point, The Cleveland Clinic Migraine center has basically told me it’s something I have to live with.

    My family has suffered along with me and I am desperate for relief. Does anyone know of any other migraine clinics I can seek help from?

    Thank you in advance,

    Annie

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  • By GardensatNight

    I’m so sorry this is happening, Annie.

    Have you been to Jefferson in Philadelphia? I have heard good things about them.

    Also, there are new drugs coming in less than a year (the CGRP drugs) that show promise. There are days I am sick with dread thinking about fall coming with the weather changes, but then I read accounts by people who were in the trials that say that they had little success with so many drugs before, and then found some relief with CGRP. Even people who are really sick.

    I’m so sorry you’re in so much pain.

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  • By BrownT

    Hi AnnieK
    Keeping strong after so many years and all the un-affective medications is easier talked about than it is to do. I too can relate to your journey. My experience has taught me to get through the the day when having some overly challenging days. It’s enough to handle a daily schedule when needing to back out of commitments or change my activities. I experience the lighter load of pain in the mornings. I had a job that allowed me to undertake the more challenging activity in the mornings and leave the lighter stuff for when I could no longer think clearly. My boss was also accepting of me coming in earlier in the day for those days I might need to go home early while I could still drive/before taking stronger medication.
    Making firm plans for a week out brought stress and disappointment. Family and friends got used to my partial commitments if they wanted a commitment more than my current day. It became a countdown with regular schedule adjustment including finding alternative transportation for my spouse if needed. Not everyone could accept my limitations and stopped inviting.
    As mentioned by GardenatNight there is always something new coming out and different uses for existing meds.
    One thing you cannot do is give up. Think of all the effort and support provided by the people close to you. I would think about their commitment and effort they have contributed over all these years to share your burden and would suspect that this commitment is signed up for into the future. Maybe you need some more help with the rough spots.
    One day at a time. Look for some help with the rough spots and give yourself hope as the medical sector is just starting to take migraines seriously and will find future cures. If you cannot generate the hope, find your inspiration from those around you that have committed so much to help what they must think is a hopeful case.

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