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Daily Hell

I think when you live with severe chronic migraine I mean migraine that is daily. Everyone stops believing the severity of your pain because your pain becomes normal to them. They think that because you are pushing through and survivng each day that it isnt as bad as you portray it to be. I stopped talking about my pain with my family because its pointless. They will never understand it and there is no point talking about it because it isnt their pain. Migraine is an evil efliction that once resistant to medication destroys your soul and robs you of any joy you once had. Dr's are lame and have no clue how to manage the daily agony that medication resistant migraineurs endure.

  1. I hear how frustrating, difficult and exhausting it is to live with chronic migraine - you're not alone. We understand and are here for you.
    I believe you've described how many of us feel - pushing through pain and life pretending we are OK as not to show how truly debilitated migraine has left us.
    I hope today is a lower pain day, will you keep me posted on how you are doing? Nancy Harris Bonk, Patient Leader/Moderator Team

    1. Couldn't agree more. If your misery loves company, you've got at least one person who's right there with you.

      1. I understand what you are going through. My husband suffers from chronic migraine and NDPH(new daily persistent headache). He suffered for a long time with daily chronic attacks that would not give in, and his body was resistant to nearly every therapy he tried. He saw many doctors and neurologists with no real help. Then on the advice of a fellow migraine sufferer, we found a headache specialist in our area. It was a long drive, but the difference in how the specialist and her team approached his attacks was dramatic. Long story short is that a good specialist changed his life significantly. His NDPH continues to be resistant to any treatments we have tried, but in comparison to the agony of his migraine attacks, it's something he coexists with now. Having a silent disease like migraine makes it hard for those around us to understand what it is that our bodies experience during attack cycles. It's unfortunate. I hope you have people who support you in what you are experiencing. We are here to support you either way! How long have you suffered from migraine disease? I hope you find some respite from your attacks soon. Warmly, Cheryl team

        1. your reply has given me such hope - thank you!

        2. Hope is a wonderful thing for us to have in our lives. It is my honor to help you and show you that hope is there! Warmly, Cheryl team

      2. I (sadly) couldn’t agree more. I’ve had chronic migraines for 6 years now, initially following a car accident that caused neuropathy as well. After my fusion, things improved somewhat but doctors have said that the nerve damage I’m left with is permanent. I’ve gone through pain management, 4 different types of PT, acupuncture, 4 neurologists, and 2 headache specialists. I’m also menopausal which is loads of fun - and have two teen boys at home.

        I’ve had doctors tell me it’s fibromyalgia, my depression & anxiety (which definitely make it worse), and my favorite - “Given your injuries, you shouldn’t be in this much pain.” Gee thanks. LOOK AT MY MRI!

        Right now, my CM has worsened both in duration (3-4d) and pain level (7-😎, and thus my depression and anxiety are awful. Getting up, taking my meds, forcing myself to eat, and getting dressed are major accomplishments. I can’t work - haven’t been able to for 2 years - and am applying for disability. I have 2-4 headache-free days, (lowest since the accident), 9-10 headache days, 17-18 migraine days a month. A migraine means I have about 45 minutes after I take my meds to get home, get into soft clothes in our cool, dark, silent bedroom (a fan helps a lot for gentle white noise). Otherwise I can’t drive, let alone function.

        It’s exhausting. I live in a mental fog and I don’t know if it’s my depression or CM, but does it matter? I’m numb. I’m on more meds than I can count. We have to take two cars when we go out unless it’s just us. I’ve missed so many events because the noise, lights, or timing will trigger an attack. I feel incredibly guilty for “doing this” to my family, despite my therapist and my rational mind reminding me I wouldn’t wish CM & depression & anxiety on my worst enemy. I feel like I’m a burden. I try to deny when I’m getting a headache or migraine but we all know that’s foolish and unhelpful.

        If there is an upside, it’s that I’ve learned and changed a lot. I will only work with medical providers who listen, support me, and help. I REFUSE to work with anyone who questions my pain or doesn’t coordinate with my other doctors (esp. my shrink). I’d see a therapist even if I didn’t have depression because she validates my emotions, fears, and pain while helping me work through it as best I can. I have to ask for what I need, affirm my needs are valid, and realize many of my “wants” are “needs.” I must be honest with myself, my hubby (especially), my family, and friends. I can’t live in denial, and “pushing through” always makes it worse and last longer. I didn’t cause this, I’m not exaggerating, I’m not at fault - and all I can do is keep trying and be persistent. Fight/advocate for myself like I do for my kids. Care for myself like I care for my family. Give myself the unconditional love and support I give them.

        It’s brutal, but at some point it will get better. It has to. Because that, and my family, are what I hold on to. Hang in there —

        1. Life with migraine & headache is so difficult. You are advocating for yourself and listening to your body and needs which is exactly what you need to do. You are a true migraine warrior and your positivity is inspiring! It's very hard to stay positive but hearing you say that "at some point it will get better" gives me hope. I too fight this fight not just for myself but for my family and daughter. We're always here for support!
          -Kim (Team Member)

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