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Living with Migraine

Do you ever feel misunderstood?

  • By kstout135

    Hey Everyone,

    Since my migraines have come back, I’ve been feeling a little alone. My mom and I talk, and she says she understands and I told her I’m not trying to complain about my migraines, I just want to desperately be heard. My mom’s wonderful, but I just feel like people who don’t get migraines simply can’t understand just how awful they truly are. I feel like they are hard for me to accept as well. It’s really hard for me to accept and understand how I can have a neurological disease or disorder that other people can’t see

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  • By SuzieR

    Yes, I do too. My husband is wonderful, and has experienced terrible pain, but his has been visible – broken leg, operations. So he has had signs to the world of his pain. A big heavy cast. Scars. Pain in your brain is only visible by the effect it has on you – the vomiting, writhing in pain etc. People have to take it on trust to a certain extent.

    Is this what you mean? You sound like YOU’RE not even sure if you believe it! I’ve felt the same. Been through 3 days of unbelievable suffering, and then wondered a couple days later if it could have been as bad as I thought it was…how did I live through THAT? And then it happens again.

    If you post on your Facebook page that you have migraines, I wonder if it’ll turn out that several people you know also have them, but never said? I did this, and found a lot of comfort.

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  • By kstout135

    Hi SuzieR,

    Yeah that’s how I feel. My mom and I were talking earlier, this is how our conversation went:

    My mom: “Now do you know where they come from?”
    Me: “My .?”
    My mom: “Yup”
    Me: “That doesn’t change how bad they are”
    My mom:”Oh of course not. But at least they’re not as bad as they were last year. Be optimistic”.

    I know she meant well, but really? :'( Migraines and optimistic can’t be used in the same sentence. First of all, migraines have no cure at this time in medicine. Second of all, migraines change.

    This is exactly why I feel misunderstood 🙁

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  • By SuzieR

    It’s really annoying when people do that – they’re trying to understand, and get you to be positive, but it feels really belittling. Last week my aunt, who I know loves me and is trying to be supportive, said that when she was younger and had a period of suffering migraines, she could “Think positively and stop them”!!! My g-d!

    I have to keep telling myself that it’s cos she loves me and can’t stand seeing me suffer. It comes from a place of love…

    But heck, the woman had breast cancer and went through that immensely stressful 5 years of praying to achieve full remission, without the cancer spreading first. I guess thinking positive is a necessity if you have that hanging over you? I guess we have to try too. What’s the alternative? Total and utter misery and anxiety. Yeah, I’m not liking it much.

    And there is something promising in the pipeline for us – not a cure, but a kind of preventative treatment using monoclonal antibodies to target the weird things that happen in our brains that cause migraines. There are at least 4 drug companies working on it and we could have it in 3-5 years. So let’s have some hope. People will keep on misunderstanding us…

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  • By kstout135

    Hi SusieR,

    I’m sorry you’re aunt said that to you. I can understand that they come from a place of love, but I agree with you 100%, they can be belittling even if they don’t mean to be. And I’m so sorry about your aunt having breast cancer. I’ve prayed too, and I love to read The Bible. But I believe God gives His biggest battles to His strongest soldiers. I feel like the only way I can honestly get through my migraines is trusting that God knows what He’s doing, and that He will help me through them. I don’t want my family thinking I like to suffer, but it’s not like I asked to have this condition. No one in their right mind would ever want to have migraines.

    Thanks,
    kstout135

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  • By jannasbrain

    Hello. I totally understand what you mean by people who try to be helpful and understanding when it comes to migraines, and how it can be frustrating and seems to minimize the experiences that we have to live with, and deal with on a daily basis as migraineurs. When I have a migraine, which seem to hit 6 days out of 7, and can last for 3 to 4 days at times (ugh!) my mom will ask “well, is it a REAL migraine this time? I mean, a BAD one?” As if there is such a thing as a ‘good’ migraine?? I get very frustrated with this question! The other daily question I get is ” So, what have you accomplished today? Anything?” Yup! I wrapped my head in an ice bag, went into my dark bedroom and did my best to get thru the day… The comments are not meant to be hurtful, however they are.

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    • By SuzieR

      Jannasbrain, you cracked me up! I read your post just before I had to, yup, wrap my head in an ice bag, go into my dark bedroom, and do my best to get thru the day! Ha haaaa! Thankfully my pills worked, so it was only 4 hours, not 3 days. So I’m gonna accomplish something today. A load of laundry. Ta-da!

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    • By kstout135

      Hi Jannasbrain,

      I’m so sorry your mom said that, It feels like to me that when people make those kind of comments, they think we are making it up. But we are not!!!!!

      kstout135

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  • By SuzieR

    Kstout, I’m so glad for you that you have your faith to comfort you. I wish I did. My pain seems utterly pointless, but my friends and family are pretty much all believers and say that we can’t see His bigger plan, so perhaps it’s good for my soul in some weird way? I’ve no idea, and just can’t believe it.

    But what I do believe in is the power of mutual support and I’ve found a great Facebook group, The Daily Migraine, which has really cheered me up the last few days of constant pressure headaches. Try it!

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  • By kstout135

    Thanks SuzieR! 🙂 I am so glad that you guys are finding this thread helpful. I was wondering if I could get your opinion on something. I got really nauseous, and almost threw up yesterday.I was out with my twin sister last night, and she’s like, “Your migraines must be awful. Then, asked me about my migraines. I explained the different types, and the various symptoms. My sister was like, “You haven’t thrown up in a year”. Okay. First of all, that’s not true. The last time I had a migraine that made me that sick was September. Second of all, I explained to her again the various symptoms, how migraine patterns change, and how migraines don’t have a cure at this point in time. Why would she say my migraines are so awful, and then turn around and say, “But you haven’t thrown up in a year”? My sister struggles with anxiety and emotional issues. I wouldn’t question her throw-up phobia. It just really hurts that she questions my neurological disease when she has a psychological thing I can’t see. If I’m being honest with myself, my sister can be a challenge to live with. You can’t even talk to her, without her thinking that you are telling at her. And she always wants all of us to be happy all the time. It doesn’t matter how we really feel, As long as we put a smile on her face, she’s happy. I am not trying to bash her. But I want to show her Christ’s love, even though she doesn’t show me the same level of understanding, and apparent believe me.

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    • By SuzieR

      Hi, Kstout,

      So your sister started out really sweet and sympathetic, but pounced on you when you told her a list of possible migraine symptoms because you hadn’t had ONE of them in the last year? Do you think she misunderstood, thinking it was a checklist, that you have to have ALL of them for a diagnosis of migraines? Or could it be that she was trying to be positive when she said you haven’t thrown up in a year – like “Yay! No puking!” Seeing as she’s got anxiety and emotional issues, I’m sure seeing you so sick is extremely hard for her to cope with – it’s really hard for stable relatives to deal with. And mine often say things really, really badly, when I KNOW they love me. They just really REALLY want my migraines and crap life not to be true. It hurts them that I’m so sick and they can’t deal. I have to constantly remember that.

      My brother is a pediatric internist in a big children’s hospital and he treats kids with migraines, (so he should know!), but he has very little sympathy for me. His wife is lovely to me, though. We think it’s because in his mind I’m his strong, tough big sister who always looked out for him. He hates that I’m so weak now. On the rare occasion I say something about my condition to him, he’ll counter with something like, “Ha, you should try working nights!” Which is tough, I know, but seriously…I’m sure he feels crappy, and gets headaches, but it’s not the damn same! And it’s HIS CHOICE! I HAVE NO choice!

      I’m lucky I don’t live in the same town as him and see him often, or I’d end up wanting to punch him!

      I don’t think your sister sounds strong enough to support you, and that’s really sad, and not fair, because I bet you’re great to her. But that’s life, hey? Are your friends more supportive?

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  • By pain pain go away

    I am so sick of everyone telling me it is caused by stress. That is like saying it is caused by breathing. I love hearing “see that is why you get migraines”
    Unless someone has one I don’t think they can understand all the bad stuff that comes along with it. I can’t understand it myself. I’m convinced there must be something wrong.

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    • By kstout135

      Hi SuzieR,

      I am so sorry for the delay. I work during the weekend, and I just finished a final for Grad School. To answer your question, unfortunately, I think my sister felt turned off when I started explaining my migraines to her. Also, I think she was trying to prove the point that because she had not seen me get sick in a while, my migraines must be cured. That’s sad because I don’t make comments about her anxiety to her face. I keep my opinions about her anxiety completely to myself. Well, I guess that is until now, lol. Although I believe her anxiety is real, I have to admit, that sometimes I think she uses it to get out of doing things for others. For example, when we went to the movies last Wednesday night with our friend, she was first saying how much our friend annoyed her, that she did not want to go, and that she was afraid she was going to get “sick”. She did the same thing on Saturday when my oldest sister asked her to accompany her to a wedding to babysit her newborn. My oldest sister had asked her months in advance. So, on Saturday, my twin was like, “I don’t know if I should go because I don’t want to get the baby sick”. The thing though, is that she wasn’t even sick. She was just afraid she was going to be sick. But she doesn’t mention anything about being afraid of getting sick when she goes to Happy Hour after work with her work friends, or when she visits her boyfriend most weekends. I’m sorry, I just needed to vent a little, lol.

      Thanks,
      kstout135

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  • By kstout135

    Hi Painpaingoaway,

    Yes, I totally agree. People can say they have migraines all they want. But if they doubt our symptoms, then they seriously don’t understand it.

    kstout135

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