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Language matters! How do you describe your migraine?

The way we discuss and describe migraine can be so personal. For example, some feel very comfortable identifying as a "migraineur" while others prefer more person-first language, like "person with migraine".
What language do you use to describe your experiences with migraine? Are there any terms associated with migraine that you either resonate with or find stigmatizing? All perspectives are welcome here!

  1. I cringe when someone says “Oh you have a headache?”
    I reply “No I am having a migraine attack” I want to be as transparent as possible, there’s so much more to a migraine than head pain. Some people are open to hearing about it & others aren’t so you have to read the room. But I am firm on correcting the fact that I am having a migraine attack, not a headache. Even when I’m dealing with medical professionals.

    1. No migraine currently, thankfully. A very nasty sinus infection, though. On heavy duty antibiotics.

    2. Oof. So glad to hear that your migraine lifted while you cope with a sinus infection. Crossing all my fingers for you that it clears up soon! - Cody (Team Member)

  2. After years of not going to regular doctors for my migraines because they had nothing to offer me finally hearing about new medication‘s. Went to my PCP to ask her about them and the first thing she said was you just have headaches you should get a massage. It wasn’t until my next doctor asked me why my kidneys were so bad and how much Advil I took That I mentioned that I take hundred of Advil a month because I had migraines and she listened and gave me some medication

    1. Thank you for sharing your experience, kind words and joining the conversation. You're not alone in having a difficult time with loud noise and bright lights - many of us deal with these triggers as well. Have you seen our information on vestibular migraine? If not let me share that with you ;
      Good to hear massage is beneficial. I love a good massage!! You just reminded me I have a gift card for one I need to use!
      Sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (Team Member)

    2. So glad you took the time to share some of your journey with us. I agree that our community serves a wonderful purpose of connecting those of us living similar experiences such that we feel validated and less alone.
      Massage can be a terrific intervention for migraine- even serving as a preventative measure if employed regularly. Unfortunately, it is out of reach for most people due to its expense. Frequent, or chronic, migraine can wreak havoc on our musculature and skeleture. So many of us labor through attacks in the fetal position - wracked with pain- with our shoulders attached to our ears. It can take a few sessions to release the resulting tightness and if we have repeated attacks in the meantime, we then have more work to do. Still, it's a worthy goal. Wonderful to hear you are working toward it and finding some success and relief.
      I love massage therapy and wish I could afford to seek it out more regularly.
      And you're right, it is so important to find a qualified practitioner as a massage therapist who is unfamiliar with migraine can inadvertently work too deeply and trigger an additional attack. I've experienced that before- have you?
      And yes! While I don't have vestibular migraine, I have chronic migraine and struggle with the bright lights and loud noises that can come with TV and movies. Just this morning I watched a musical performance of my favorite singer on TV and was surprised by a strobe-type lighting effect (with no warning - as they usually offer) and it has thrown my entire day off. Very frustrating! Like you, I keep the volume low or off and keep the bright feature very low.
      Thank you again for sharing with us. Nice to connect with you here. Warmly - Holly (team member)

  3. Hi! I advertise I have chronic migraines! Well, sort of. I use Cefaly neuromodulator nearly everyday (it helps decrease my pain!) and this includes when I leave the house.. to go to hospital, grocery shopping or out to eat. Really anywhere and I'm not embarrassed about looking like an alien. It's a way of bringing awareness to Cefaly to let people know about it - migraineuers and non-migraineuers alike. It's changed my life and I wear it out bc it helps me and allows me to get out of the house. I get looks and ppl staring but what I like most about that is that strangers ask me about it! The nurses I see ay the infusion center now know about it and they've told ppl they know with migraine, and they're using it now! My pain doctor didn't know about it so I've educated her. I do this to hopefully help others and to bring Cefaly to the attention of medical personal so they can tell their patients about this tool. My migraine doctor never even told me about it, it was the MA who let me try their sample. And to answer the question of how I identify with migraine in telling others, is "I have migraine" or "I am migraine". Be proud of the strength you have, surviving a life with Migraine. ..and no this is not an advertisement nor am I paid to say this about Cefaly! Lol.

    1. May not be a bad idea. I've ben VERY negligent in using it every night and have seen an uptick in attack frequency. I'm not blaming the uptick on not using Cefaly, but did start using it again two nights ago. Let me know if you give it a try and what you think,
      Nancy Harris Bonk, Patient Leader/Moderator Team Member

    2. I am so sorry that Cefaly bothered your trigeminal neuralgia. I was checking into these devices. It loooks like the different devices work differently by stimulating certain nerves. Cefaly stimulates the trigeminal nerve, where some of these stimulate the vagus nerve. You said you were using Nervana now. I could not find anything on Nervana, but it showed Nerivio. Is that the one that you were using? Since you get improvement with vagal nerve stimulation, I wanted to share this video link with you on ways to stimulate it: I wish you continued success in your migraine journey. (Tonya, team member).

  4. I know this is crazy but I tell my family what color my migraines are. The colors from best to worst are: blue, green, gray, red and black. They know if it's red or black I'm off to bed.

    1. thank you for sharing this. This is not something that I have ever thought about doing to describe my migraines. I am glad that many of you have had success with this. Did the chemist understand when you said your migraines were blue? I hope today is a calm and symptom-free day for you. (Tonya, team member).

    2. It’s purple and pink for me.

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