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Honoring My Sister’s Migraine Journey on Remembrance Day

Trigger Warning
The content includes information related to mental and emotional distress and it might be upsetting to some people. If you or someone you know have thoughts of suicide, have attempted suicide, or experience emotional distress, contact the National Suicide Prevention Lifeline 1–800–273–TALK (8255) or Live Online Chat. To get general information on mental health and to locate treatment services in your area, contact SAMHSA Treatment Referral Helpline – 1–877–SAMHSA7 (1–877–726–4727).

Migraine “Remembrance Day”

On June 7th, folks throughout the migraine community will be recognizing “Remembrance Day.” It’s a day during Migraine Awareness Month, where we come together to honor those who have lost their battle with this life-altering disease.

For my family, June 7th will make the 6-year anniversary of the day with lost my sister, Melissa, to suicide. 6 long, long years spent trying to honor her story and make peace with the most painful chapter of our lives.

My sister’s pre-migraine years

Melissa’s life was relatively normal until about the time she entered adolescence. She was the middle child, with an older sister, and a younger brother. She spent her time with friends and family, worked hard in school, and always made sure she was the life of the party. Those years—pre-migraine years—are easy to look back on with fond memories. I think of the times my sister would come into my room to ask me how her outfit looked on that specific day, or would spend her nights terrorizing my friends and I. However, once my sister began having more frequent migraine attacks, those moments became fewer and fewer.

Not understanding migraine disease

As the youngest child, I didn’t have a firm understanding of my sister’s experience with migraine as I went through high school. From my point of view, all I understood was that she was spending most days locked away in her dark room. Well,in between numerous trips to every neurologist and hospital within hours from our hometown. For most of those visits, it was my mom accompanying my sister, with me staying at home. This distance, in addition to teenage self-centeredness, made it easy for me to become frustrated with my sister’s disease.

Wishing I knew migraine was not “just a headache”

I, like too many others, wanted to dismiss my sister’s pain as her being dramatic, and wanting to have the spotlight on her each and every day. As someone who never experienced migraine attacks on that level, it was hard for me to empathize with my sister. It was easy to think she was overreacting, and that it was just a headache. I struggled to acknowledge my sister’s condition for what it was—a debilitating neurological condition. Looking back, I wish I would’ve had the knowledge that I have now, and that I could’ve supported her better throughout her toughest years.

The hopelessness of chronic intractable migraine

My sister’s journey with chronic, intractable migraine left her isolated from the outside world. That isolation, combined with the hopelessness that comes from trying treatment after treatment only to find very little relief from her pain, ultimately led to her decision to take her own life.

I share this little snapshot into my sister’s journey because I know this story is far too common. There are millions of individuals who struggle with this disease, who are continually being misunderstood by doctors, friends, and family members. Some, like my sister, are no longer with us in the physical world, which is why we choose to remember their lives on this day.

Breaking migraine stigma by coming together and sharing our stories

While this day primarily serves as a reminder of what is missing, I also believe it presents an opportunity to share our stories with the hope of spreading awareness about the challenges faced by the migraine community. Only when our community stands in solidarity with one another and is open with our struggles, can we break the stigma surrounding this disease. We take these actions, so we do not lose one more person to their struggles with migraine.

Finding people in migraine online communities who get it

I believe that is what my sister would’ve wanted us to do. While she wasn’t a part of the online migraine community for very long, we know how much each person meant to her. She wrote in a 2011 article for Migraine.com titled, Still Searching to get my Pre-Migraine Life Back: “This website has helped me so much too, with the information and the people on here who UNDERSTAND… which none of my friends do. I am young and they don’t get it. They think I get ‘headaches’.., they don’t understand why I need to go to the hospital, or can’t work, or can’t go to school with a “headache.”

All that to say, there is an incredible amount of power within this community. Although migraine can often lead those struggling to feel alone, this community reminds one another that they will never truly be alone.

Honoring my sister’s story by recognizing the pain she endured

Today, on this Remembrance Day, I will take a moment to reflect on what is lost. But I will not feel sorry for myself—for my pain has provided opportunities for me to connect wither others that I may have otherwise never had the chance. I’m grateful for the strangers turned instant friends, and the conversations had with those who knew my sister or have learned of her story through social media. Finally, I’ll choose to honor my sister’s story by recognizing the pain she endured, but I’ll also have a smile at those little moments that are tattooed into my memory—because her life should not be defined by her disease.

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

  • bluesguy
    6 days ago

    I am so sorry you lost your sister, and at such a young age. That is such a tragic story that it brought me to tears. I am certain you have touched many lives today by sharing this terrible experience.

  • Billy Dwyer moderator author
    2 days ago

    Hi!

    Thank you for taking the time to read and for your very kind words.

    I’m continually humbled by the support I receive this community. As a relatively healthy young man, I feel obligated to advocate alongside those who struggle with migraine. While it was extremely tough to navigate my pain at a pivotal point in my life, I found hope in sharing my story and connecting with others.

    It sounds cliche, but the pain I felt helped develop my sense of empathy, which is what I used to fuel my career aspirations.

    Thank you again for your kind words. Comments like these are why I will continue to honor my sister’s legacy and share my story.

    Best,
    Billy

  • SanFrancisco
    6 days ago

    Billy, thank you for sharing your story about your sister. I recently lost my little brother to a violent car accident so I know the depths of grief that comes with losing a sibling. And the circumstances of your sister’s death is so sad – but also very frightening.

    But when I read HER post, it was like reading my own story – she touched me.

    I live with chronic daily migraine between levels 8-10; and I live everyday 50% in life and 50% in death – yes, I also want to end the pain, end the suffering, isolation, hopelessness, and sadness.

    I’ve been married for 16 years and I’ve been “daily” for about 14 years so if you do the math, my husband has definitely gotten the “worst” of our vows.

    Seeing him transition from my husband and lover to caretaker has been extremely traumatic. I feel like he’s learned that he really can’t help me and therefore has somewhat disconnected which is tremendously sad.

    I’ve had severe intermittent migraines since I was 17 (40 years now!) but they just turned into daily about 14 years ago. And NO, they are not my fault from medication overuse.

    Every neuro is taught this in med school and I for one believe that increasing severity, frequency, and duration are the natural course of the disease. But all neuro’s (many which have never experienced chronic pain) will all disagree with me but those with the disease are generally well informed and in some cases, have more insight about migraines than the drs do.

    I had earned a BA, an M.S., and a law degree and now I’m totally disabled. 10 years of college (not to mention the $$$) and now none of it matters.

    So I take one hour at a time and celebrate small victories but I cannot guarantee how much longer I can hold on.

    Just writing this fills me with tremendous grief and fear for the future bc I’m trapped in this horrible body with only one way out.

    Yes, like your sister, I’ve tried everything available for migraines – and nothing works. So here’s a list of things I tried that were not mainstream and may help someone else. All the years of suffering have forced me into searching for anything that would give me relief.

    Conolidine: it’s a natural plant based alkaloid that is extruded from the crepe jasmine bark. FYI – DHE is an alkaloid too. Trump signed Conolidine into law recently bc it’s supposed to be 16xstronger than morphine but with -0- psychoactive abilities and little if any side effects. Trump thought this could help our opioid crisis and it was discovered by Scripps Research in 2008 and has been tied up by Big Pharma ever since… until Trump made it available OTC. Didn’t work for me but it’s pretty reasonable cost-wise to try. You can get this at Pharm Origins. Chinese medicine has used Conolidine for centuries.

    Choline and Inositol: generally these substances are found in breast milk and help a baby’s developing brain. So if you weren’t breastfed or if you have a deficiency, you might need a supplement. The one I use is “Stress B” and I get it on Amazon.

    Capsaicin nasal spray: just don’t do it.

    COQ10: ok I know you’re all going to say this IS mainstream, but what you may not know, is that Ubiquinone (the most absorbable form) was the INSPIRATION for the ANTI-CGRP’s! Leave it to big pharma to take a $15 bottle of COQ10 and turn it into a drug that costs thousands. But it has to be Ubiquinone and unfortunately it takes 3 months of 400mg daily to start reducing CGRP’s in our bodies. Try it. Many chronic migraineurs have COQ10 deficiencies

    PEMF: pulsed electromagnet field. It’s generally a pad you lay on with heat and intermittent PEMF. It’s supposed to work by improving healing blood circulation to all cells in the body. You cannot feel the PEMF but it’s supposedly very powerful, and it is very expensive so depending on the PEMF type unit, expect to pay anywhere from $1,200 to $6,000+. Be sure there’s a return policy the military uses this technology.

    CBD and THC: I use CBD oil three times a day but when I just really need some relief I’ll take 200-300 mg of THC. That does help the pain but it also can cause diarrhea in some individuals (not so good when you’re already dehydrated from the migraine itself)… and sometimes it gives me rebound so not a good long term option.

    Dextromethorphan: in addition to eliminating phlegm from your lungs, in much higher doses, it’s a smooth muscle relaxer. Don’t try this one without your dr.!

    Inulin: from chicory root. It comes in a form like “instant coffee” but with no caffeine. Did you know for every 10 ounces of coffee we drink, we lose 12 ounces of fluid! Anyway, tastes just like coffee (really) and it has anti inflammatory effects AND adds long-digesting fiber which helps to reduce blood sugar. You can get this on Amazon. Read the reviews. If nothing else, it could help with some of the co-morbidities that can come with migraines.

    Finally after trying all the mainstream and non-traditional medicines I’ve found that ice is really the only thing that gives me some relief.

    For the doctors we DEPEND ON: please do not ever say “there’s nothing more I can do” or worse, turn us away. Just refer us to someone you think can help. Bc that one phrase may be specific to your personal abilities and knowledge but to a chronic migraineur it = hopelessness and despair.

    So for Billy’s family and all of us who suffer, let’s keep sharing! Why wait until big pharma “creates” another drug?

    With all of our combined experience and knowledge we may be able to get some much needed relief to those that are suffering.

    Billy I will pray for your family that your grief will be replaced with joy and happiness that your sister is free. No more horrific pain and suffering – she’s a beautiful angel looking over your family and she wouldn’t want you to be sad – rejoice for her relief!

  • Billy Dwyer moderator author
    2 days ago

    Hey!

    Thank you for your comment. I’m deeply sorry to hear about your loss. I know that words can rarely do justice, so just know that I hear you, and I wish to recognize your pain.

    I’m glad you also read my sister’s post. I think it helps to read about the experiences of others in similar spots, as it can help us put words to our thoughts.

    You mention that you often believe there is no other way out, but I want you to know there is always hope for better days. If I could go back in time and share those words with my sister, I absolutely would. If you ever find yourself struggling, I strongly encourage you to reach out to in-person support, such as a social worker or support groups. Furthermore, if ever in a moment of despair, please reach out to Crisis Text Line by texting “CONNECT” to 741741 in the United States.

    Regarding your marriage, I’m sorry to read that about your husband’s transition from partner to caregiver. I recognize how difficult that must be on both of you. Please know that you are never a burden, and sometimes our loved ones might seem disconnected, but I think it’s important to continue to have conversations about these challenging subjects. Consider checking out this blog about why a fellow migraine sufferer about her thoughts on the husband/caregiver dynamic: https://migraine.com/living-migraine/why-i-stopped-calling-husband-caregiver/

    I’m also glad you have found some non-traditional treatments to relieve certain migraine symptoms. It’s important for me to note that while this treatment may work for some, different people may respond differently. It’s best for people to discuss their options with their doctor and/or specialists before trying anything new.

    Finally, I agree with your sentiment about doctors. I think it is extremely important for doctors, even if they seemingly have exhausted their options, to provide hope for migraine patients. In my family’s experience, we found that being turned away from doctors deeply hurt my sister. When hearing those words, at any age, let alone being a young woman, it can prove extremely difficult.

    Thank you again for sharing all of this information and a piece of your story.

  • lindaann
    6 days ago

    Thank you so much for sharing this heartbreaking story. I have recently read a few articles about migraine and suicide and while devastating to read, it makes so much sense. The shame, isolation and hopelessness that chronic migraine brings can certainly lead to such feelings. I know I have held suicide as an option many times throughout my migraine journey but I also know I would not act on it due to the support I receive from now knowing there are others like me out there in the big wide world.

  • Billy Dwyer moderator author
    2 days ago

    Hello!

    Thank you for your comment. I’m honored you took the time to read my story, as well as others related to migraine and suicide.

    I think that relationship is often overlooked and misunderstood by those outside the migraine community. You certainly pinpointed many of the issues I would have noted myself. There is a stigma surrounding migraine disease, which leads many to think it’s “just a headache.” WRONG!

    Migraine is a serious neurological disorder that has few effective treatments and research for the disease is severely underfunded in relation to the global impact. I think the hopelessness that comes from the lack of effective treatments, and misunderstanding from others is one of the biggest issues for us to tackle. I’m a major proponent for increasing funding to better help us understanding the underlying causes of migraine, and for the development of new treatments.

    I’m also very sorry to hear you have felt some of the same emotions my sister experienced. I thank you for sharing a piece of your story, and encourage you to lean on your community in times of need. It’s essentially we all feel comfortable reaching out to those in similar situations.

    May you find relief from your pain and please continue connecting with others in the migraine community!

  • ccf23
    1 week ago

    What a moving remembrance of your sister, Billy. Thank you for raising awareness of how overwhelming chronic intractable migraine can be. I struggle with this diagnosis and there are times when I absolutely do not see the point in going on. I think it is important that we acknowledge this to not only get help and support for prevention but also to prevent further stigmatization. Suicidal ideation is here in our disease. Let’s be open to talk about it when we need to. Let’s fight it.

  • Billy Dwyer moderator author
    2 days ago

    Hey there!

    Thank you so much for taking the time to read my article and share your thoughts.

    First and foremost, I commend you for sharing your struggles with chronic migraine. If those thoughts ever lead you to thinking about suicide, I urge you to contact Crisis Text Line by texting “CONNECT” to 741741 in the United States.

    I definitely agree with your thoughts on being open with these struggles. Silence allows the stigma surrounding migraine to thrive. Conversely, when we share our experiences with others in this community, and those in our own lives, we chip away at that stigma one conversation at a time.

    I’m really glad I am able to use my sister’s story to raise awareness for suicide within the migraine and chronic pain community as a whole. It’s a honor I do not take lightly, and I will continue to talk about the hard things to hopefully do my part combat the stigma.

    Thank you again for your thoughts. I hope you can find a strategy that offers relief from your migraines!

  • glassmind
    1 week ago

    Thank you for sharing your family’s story and honoring your sister.

    Your words brought tears of anguish and of hope to me.

    I personally have suicideation related to migraine and am appreciative of your giving voice to your experience.

    Thank you.

  • Billy Dwyer moderator author
    2 days ago

    Hello!

    Sorry for my delayed response. I appreciate you taking the time to read my article, and I’m glad it might have provided a bit of hope to you.

    I’m sorry to hear your struggling with suicidal ideation. I commend you for reaching out for support online, and welcome you to do so anytime. I also encourage you to reach out for the support you deserve from in-person options as well, such as support groups, medical professionals, and counselors. If you ever find yourself thinking about taking your own life, I urge you to contact Crisis Text Line by texting “CONNECT” to 741741 in the United States. They’re a great resource that will connect you with trained counselor who can help you navigate a crisis.

    I would also like you to recognize that your story is very important. Migraine can lead to isolation and despair, but when we lean on others in this community, I think we can find hope in one another.

    Again, thank you for sharing your thoughts with me, and I hope you are able to find pain-free days soon.

    Best,
    Billy

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