Almost 30y with Migraine and Still Treated Like Idiot Junkie by Doctors

Hi,

I’m never sure where to comment, or when it’s an old or new survey.

I’ve had them for more than half my life (I’m 54). I’ve tried just about everything. I’m asking my neurologist about surgery next time. I’ve heard the “once you’re pregnant” “once you’re not” once you hit menopause” crap — nothing.

I’ve been prompted for “Stress” triggers for the last 10 years. It has never been a major trigger, if at all. But I go along, because it’s easier.

I eliminated chocolate for a year; caffeine for two to no effect.

Industrial chemicals are a major trigger, especially chlorine and diesel exhaust.
Can’t drink any colored alcohol: whiskey. dark rum, red wine. beer. A glass or pinot grigio often helps.

I have a plan, but I’ve misplaced it. I’m now obsessing because when I want to go, I want to go, and I’m panicking because I don’t have a plan B.

One of my biggest triggers is artificial orange food flavor and scent. Give me a Crush or an orange s starburst, and it’s going to be a long one. It’s ironic factories have substituted a non-toxic cleaning chemical with orange scent.

I have such rage and fury at doctors who think they know more about my body than I do. They like the battle of wills; they’re not there to help. They scold me, make me argue when I can barely think, try to trip me up (“How come you’ve been missing your acupuncture appointments?”) Hmm. Because I can’t safely drive, or I’ll end it all by crashing over a bridge? Or could it be that my first job is to take care of my kids?

Why should I have to “prove my pain” because they ignorantly assume I’m a junkie because I tell them what works and what doesn’t. Why have I got my kid with me in her PJs in the middle of a school night?

Sorry for going on. What needs to happen is to show medical students how to treat invisible pain. I wish they’d give me and maybe someone else give a colloquium on pain. Before we kill ourselves. What on Earth are they going to do with the soldiers coming home from war? My daughters are almost marrying age. Knowing the violence, the flashbacks, the lack of impulse control, the lack of pain relief, I think I would do anything to keep them away fro those poor young men. My daughters deserve a whole lot more: they deserve whole men.

Peace,
Lynda Cutts

There may never be any help for me, but I hope I can help others. I’m a zoologist, pharmacy technician, researcher who can’t work; whose family thinks I could give them a better life if I weren’t so defective. “Can you just ignore it, Mom?”

I love my family, but I was mistaken in thinking I could have one. Too vigorous kept trying to raise them. I should have killed myself earlier on, and they could have had a normal mother, and my husband would have a normal life. Don’t listen to therapists who say “without you, your family would fall apart.” They’re resilient; they will heal. Because of my mistake they are suspicious of me; I try not to give promises, because I have missed so many. I’m just a stay-at-home mom who’s sick most of the time. They have contempt even in my areas of expertise. And all moms are better than me. I wanted so badly to be a role model (feminist, mother, partner, scientist, activist); instead I’ve become what I’ve always hated: a pill-popping, Invalid, stay at home mom saying no at every turn to their suggestions for adventure, play (too loud, too bright….). I’m dependent on them and their father. I had the great good luck in finding a kind, compassionate, feminist, playful spouse. He is a wonderful father, and a patient partner when I’m down and out. It is with deepest regret that this wonderful family, and my 3 great stepchildren are saddled with me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Anne
    4 years ago

    I’ve had the same experience with doctors – the majority of them have no idea what they’re talking about when it comes to migraines. I’m in the process of getting approval for a new neurologist because the one I’m seeing now is convinced that stress is the only cause of migraines (my main trigger is weather). I am currently working just a ‘job’ because I can’t do anything too demanding, so my career is on hold.

    Something that helps me is to remind myself that when I’m in the chronic migraine state, my serotonin drops and I feel depressed, so anything I’m thinking is tinged by depression. You’re not alone and you’re not over-reacting. I actually had this same neurologist suggest I get married and have children as that might help my migraines – I asked him if he would say the same thing to a man.

    Don’t give up. The pain will tell you that it’s not worth going on, but things can change in an instant. Think of all the good you’ve done, despite having to walk through like with a disability – see yourself as the hero you are!

  • Tammy Rome
    4 years ago

    As I read your story, my heart broke for you and your family. Your comments reflect my own experience in an eery and uncanny way. I’m a little younger at 45…otherwise our stories could be the same. I also have a lot of education and training. My husband and I have raised two great kids (now 22 and 18) — he certainly has shouldered most of the burden. In my 30s I kept remaking myself hoping to find a career that would not trigger so many attacks. By 43 I realized that no career was ever going to be tolerable and applied for disability. I’ve also fought back the thoughts of suicide more than once and you’re right about the platitudes. Just wanted you to know that I “get it” and am here if you need to talk.

  • Katie M. Golden moderator
    4 years ago

    Railroad Spike,
    First of all your screen name is great. Migraines definitely feel like getting hit by a railroad spike!

    Thank you so much for being so candid in your story. Having a chronic illness can be extremely isolating and depressing. I understand the guilt you feel and the utter hopelessness. I know what it’s like to grieve for the life you once had.

    It is absolutely maddening when your doctor doesn’t listen to you. Sadly the focus on opioid abuse has many docs refusing to prescribe them at all. When used properly, they can absolutely be helpful to those in chronic pain.

    Have you ever seen a Headache Specialist? These are neuros who only see headache/Migraine patients. They have specialized training and are the best equipped to help people like us. Here’s more info about Headache Specialists and how to find one : http://migraine.com/blog/how-are-migraine-specialists-different/

    I also encourage you to share with your family how difficult this disease is. I’m sure you’ve tried a dozen times before, but once they truly understand it may be a burden that is lifted. I have found that sending articles about your condition sometimes helps to validate what you’ve been saying all along. Have you seen or heard of the movie “Cake” with Jennifer Aniston? She portrays a woman in chronic pain and I watched and said that’s me! I highly recommend it. Also, have you ever heard of the Spoon Theory? It’s a great story that illustrates how those with chronic pain function differently than others. This would be great to share: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Also, when you’re feeling hopeless, I hope that you will reach out. To live this long with Chronic Migraines while raising a family shows that you are an incredibly strong person. I’ve heard other women say that because their children saw them deal with their illness it made their kids more compassionate human beings. You’ve affected your kids in such a positive way, more than they realize now.

    If you are ever thinking about harming yourself, please seek help. This article gives great advice on how to create a suicide safety plan and lists other resources: http://migraine.com/blog/suicide-safety-plans/

    Thank you again for sharing your story. And please feel free to ask questions and engage with others in our Forum section. Take care!
    -Katie
    Migraine.com Moderator

  • Jenn Lebowitz
    4 years ago

    Hello RailroadSpike,

    Thank you so much for sharing your story. We applaud your courage, as sharing on such heartfelt topics takes both bravery and strength.

    Please know you are not alone. We are so glad you reached out for support here. We also encourage you to reach out to in-person resources as well. Local options such as medical experts, therapists, and/or support groups can be extremely helpful during such challenging times.

    Thank you again for your story. Please feel free to keep us updated on how you’re doing.

    Warmly,

    Jenn (Community Manager, The Migraine.com Team)

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