Another migraineur has taken her life. I have few details, but those I do have paint a heartbreakingly common picture: She wasn’t taken seriously by doctors and did not receive proper care despite being in massive pain. She’s the second person I know of who has taken her life because of migraine in the last two months. I have to wonder how many others have done the same, but their deaths haven’t made the migraine news circuit.
I could rail against the medical system that knows so little about migraine, the lack of funding for research into this disabling condition, the majority of society who thinks we’re faking migraines to get out of making dinner, the stigma of migraine, people who can’t open their minds enough to even consider migraine as a debilitating illness….
There are plenty of reasons to be angry, but right now I’m just sad. Sad for all the people who are so desperate in their struggle with chronic migraine to consider or attempt taking their lives. It is such a lonely, terrifying emotional place to be. I know because I’ve been there myself.
There are a few things I want everyone with chronic migraine to know:
You are not alone. Connect with migraineurs on a forum like Migrainepage.com or the one on Migraine.com. Forums are the best place to find people who who understand the toll of chronic migraine and can help you cope with it. Talking with people who understood this lonely and stigmatized illness helped me through my worst days.
There’s always hope, hope for better health and hope for learning to live well despite chronic illness. I tried more than 36 preventives before finally finding some effective ones. I still have migraine attacks most days, but the pain is so mild that it feels like an entirely different illness. I am not “cured,” but I am grateful for every single day. Mindfulness techniques were a tremendous help in coping while I was still mired in daily pain of level 7 and higher. Start with How to Be Sick
If you aren’t getting adequate treatment or feel like your doctors are dismissive, see a headache specialist. General neurologists get mere hours of training in headache medicine; you have the best chance of finding someone who truly understands migraine and its impact by seeing a headache specialist. Find specialists on the Migraine Research Foundation’s list of doctors certified in headache medicine, the National Headache Foundation’s physician finder, or the American Council for Headache Education’s provider search.
A therapist is a necessary health care provider. Chronic illness is a drag and migraine has its own infuriating stigma. This is a hard life to live and no one should have to navigate it on their own, nor should any romantic relationship or friendship have to bear the weight of it alone. Ask your doctors for recommendations, ask for suggestions on forums, or check Psychology Today’s therapist finder.
If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255. Trained staff will receive your call and help you sort out what’s going on. Even if you’re not at immediate risk of suicide, they will help you create a safety plan to keep you safe in case you ever reach that point.
Hang in there. The bad spell will not last forever. It may not feel like it right now, but you will get a break.
I fear that advice is oozing cliches, but each one is abundantly true. Keep in mind they’re coming from someone has had such severe, unrelenting chronic migraine that death has sometimes seemed a better alternative. Someone who is thrilled to be alive and experiencing what every day has to bring, both good and bad, after finally finding helpful preventive medications.
As my husband once told me, life with chronic migraine is way harder than any life should be, but that doesn’t mean it’s not worth living.
When I finally admitted that things were bad, my migraines were still only around once a week. I still had clear days. I had a clear point past which, if my quality of life became too degraded, I did not want to continue. Hopeless, pointless years on, I have dragged myself on far past that point because I cannot bear what it would do to others. Keeping going, though, still puts those same people through hell. I give myself things to do, try to build meaningful goals for the future, anything to remind me why I keep going or distract me from not wanting to do this any more. I gave up so long ago… I do not know how much longer my sole factor in holding on will be enough. I just needed to put this somewhere, needed it to have been said somewhere so that it’s not just another burden I’m asking my partner to carry. Others forget, the people you love have to carry its pain too. Perhaps a cold, cost/benefit analysis is better than nothing at all to hold on to.
Jessica, I’m sorry you’re having such a rough time right now. I have been in a similar place and thought I would never find relief. But I kept going because it was the only way I could see a way out of hell. And I finally found tremendous relief. The last year was the best of my adult life. I felt better than I ever thought possible. There are so many possible treatments for migraine. This is frustrating because there are so many to try, but it also means there’s always something else that might work. New treatments have come out in recent years and more are on the horizon. I wish you all the best in your search for relief, physical or emotional.
Take care,
Kerrie
Horrible topic; unfortunately it sounds exactly like my life story. I can barely make it through 3 days of work. We should be actresses etc., as much as we have to fake the smiles throughout the torture we endure everyday & night. Vomiting, and the sensitivity to scents etc., feeling as if you’re rocking back & forth in the middle of the ocean. Praying you don’t barf on someone, or run someone over while driving half blind. I’ll stop here, enough of this awful living nightmare we all deal with. Peace, harmony & good health everyone. I feel we should be able to take a ticket as we do @ the deli dept. / & check out once our # finally comes up. Easier than day after day…….. it’s been over 50yrs for me……. wouldn’t wish this on my worst enemy.
I’m so sorry you know what this is like, Connie. It sounds like you have a pretty good sense of humor about this chronic migraine thing, but it is still exhausting and distressing. Hang in there.
Thank you all for the support. Your kindness means so much to me.
Becky, it was 11 years before I found my first effective preventive. I’ve covered the gamut used for migraine — every class of drug except beta blockers because my blood pressure is on the low end, and a variety of supplements as well.
Kerrie
Kerrie,
Thank you so much for having the courage to write about this. The wife of one of my husband’s friends committed suicide this week, and chronic pain, including migraine, was part of the equation. The Faces of Migraine video by Ellen Schnakenberg also touches on the dangers of suicide for those with migraine.
The support from online groups has been of incalculable help to me personally. You are part of that. Thank you from the bottom of my heart. We can all try to advance the cause of migraine awareness, even a little, by educating those around us, and offering a safe place to talk, whether online or in person.
Very sad news. I agree that seeing a neurologist that is a migraine/head pain specialist is important. There are so many patients with Alzheimer’s and other forms of dementia that I feel most neurologists are focusing their attention on these diseases and do not have the experience to deal with high frequency migraine.
How many years did it take you to try 36 preventative meds? Were they all antidepressants? If not, what other types of medications were they?
Very well written Kerri. Thank you!
Well said, my friend.