You Are Not Alone

Whether your migraine disorder is classified as episodic or chronic, migraine can be a deeply isolating experience. When attacks become frequent or severe enough to impact a person’s quality of life, migraine can drive a wedge between us and the people in our lives who don’t have migraine or who have migraine but can easily abort attacks. It’s that quality of life factor – when migraine changes what we’re able to do, when it forces us to hide in a dark room instead of have fun with our kids, when we fear the next attack – that really separates us from others.

Migraine.com is full of helpful tips, medical information, and personal stories, but its most important message is that you are not alone. You are not alone in the anger at having swathes of your life overtaken by migraine, your fear that the migraine attacks will never lessen or stop, your grief for all you have lost to migraine. You are not alone in feeling isolated from and misunderstood by the non-migraineurs in your life. You are not alone in the feelings of defeat and worthlessness that comes from being out of commission for days. You are not alone in the frustration that the medical establishment doesn’t understand migraine better and that all our preventive medications are secondhand treatments originally used for other conditions.

Migraine is a neurological disorder with symptoms that affect all of the body’s systems and can be felt head to toe. The medical community is beginning to understand that. Migraine’s emotional component – and not just the emotional symptoms that accompany migraine’s physiological processes – but the isolation and grief aren’t readily acknowledged by many doctors. Fortunately, they are readily acknowledged on Migraine.com.

If you’re feeling isolated, please visit the Migraine.com community page and forum. You don’t have to participate if you’re not ready, just read what others have written. You’ll soon learn you’re not alone in this at all. That there are many people who will support and care for you in your struggles with migraine. People who understand the experience intimately because they live it, too.

Although Migraine.com wasn’t around when I first looked for support online, another site’s forum saved me from utter despair when I felt like no one else in the world understood what I was going through. Connecting to others with migraine gave me hope and the strength to keep seeking treatment, helped me pick myself up and try again when a treatment failed, and introduced me to kindhearted people who understood exactly what my days were like. Facing each new day – each new migraine – courageously became a whole lot easier once I learned I was not alone.

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 (6)
  • Janet
    5 years ago

    Pete,
    All I can say is WOW!!!!! You said exactly how I feel about everything we migraineurs who are chronic feel. Thank you. And using the word “moron”.. Thank you. My entire family can be defined by that word when it comes to understanding migraine…their sister, wife , or mom (all me) want to slap them in the head. I really do t like saying I wish they would get a migraine because our children do…our daughter several weekly..our son about a dozen a year….but yes to my siblings gs and my husband …they need to live my life for one week and see what they look like and how they would describe that week. I’ve sent the articles from this wonderful website and NOBODY ever responds to me….so how do we educate our families to how we are feeling when they don’t even respond….I answered the question myself at night..like you…when I’m not sleeping…because who gets to sleep???? It is so isolating….and depressing…..and all bluebird said and you. I lost a friend that I made at the Diamond Headache clinic in December 2004 to suicide 2 years ago on February 21, 2014….I miss Michele everyday. She was the most courageous woman I know. She would have been 50 years old this past September had she chose to fight the fight. But her husband couldn’t stand her migraines…divorced her and got engaged to the next door neighbor. Michele was gone 2 weeks later. I chose to hang in…and hope my husband doesn’t get any more frustrated to the point he won’t want me around…we are difficult to live with…and we aren’t much fun. Thank you Pete for your post.

    Blessings
    Janet

  • jules72
    5 years ago

    I have suffered since childhood with Migraines but I didn’t realise what they were until I grew up. My dad and Aunt had them but they didn’t have them diagnosed but I have. Mine are mainly hormonal related now but completely debilitating at times. I suffer facial paralysis, vomiting, disorientation and horrendous vertigo. It scares me most when my body seems to go into some form of shut down and just more or less refuses to function. These bouts have become more frequent as I have approached middle age and my doctor has proven not to be much use as he doesn’t seem to take them seriously enough. I have wondered in the long term will any damage be done to my brain because of the seriousness of the pain and also the paralysis which at times has robbed me of nearly total vision in my left eye for upto four days.If anyone can enlighten me has to how I can try and help even if I can’t prevent the attacks I would be grateful and especially if there is any uses in alternative medicine which I am a very keen follower of.

  • bluebird
    5 years ago

    Thank you for the invitation to connect. I have been using Migraine.com to help get me through the toughest times for years now…but I don’t post.
    The more I have learned , the more I understand that migraine has been part of my life since I was an infant with colic.
    Decades later, after complying with all the complicated RX regimes and well intentioned neurologists, I feel increasingly defined by my Chronic Migrainous condition and less confident in finding effective treatment.

    The drugs have not been effective to date. My life has been substantially diminished. I am more isolated. I am tired of not signing up for activities because I don’t want to waste money if I won’t get there. I am tired of being bright and well when I happen to meet an acquaintance and then being soooo reluctant to make a date to get together because inevitably I won’t be well enough to get together. I am tired of not planning a dinner party.

    Okay, migraine is a genetic condition and mine was likely made worse by a viral meningitis 15 years ago. I am a medical professional and I believe that.
    So I go to the bodyworker who suggests the drugs are preventing me from healing by numbing the pain and shame of past mistakes.
    And now, to find some hope, some sense of control, I am willing to say I will take a “fearless inventory” to see if somehow these migraines are the product of my own creation…a form of self punishment…in some twisted way …a personnel penance.
    I have such a deep wish that my own sense of guilt (for real mistakes) could be the cause of my suffering and that I could then forgive myself or be forgiven…and then ( in the wish) this painful sentence might be lifted. I would never expect someone with another illness to repent to get well.
    But the notion that Migraine is stored frozen fear, pain, unexpressed suffering is compelling and gets recreated everyday. Who has the luxury to freely express the the depth of sadness, fear, frustration, confusion, pain and loneliness that this illness seems to create for so many?

    I have gotten better about letting people know when I am out and about or traveling, that I have Migraine and may need assistance. Or that if my speech gets weird and I stumble, that I am not drunk -or if my face goes limp, I am not having a stroke. It gets easier…sort of.

    I know that when this headache relents a bit, I will find some pleasure in the day. I will be grateful for all that is good in my life…for the moments of peace, beauty and loving kindness that I am able to share…
    And for this Community where it is possible for me not to feel alone and where I can tell the truth about how it feels to have Chronic Migraine.
    But right now, the curtains are drawn, I am in bed, I feel sad and deeply tired of chronic illness.

  • Pete
    5 years ago

    I understand, Bluebird. I have battled migraine/clusters since I turned 35, 27 years ago. They got progressively worse- I now have a non-stop status migraine for 14 years, plus 8 waves of multiples – up to 5 at a time (try explaining that to someone!)- every day. I also get “suicide” clusters. I was a trial lawyer, small town, and have been permanently disabled for 14 years. I formerly played soccer (36 years), coached it (25 years), was on a variety of boards from Church (I no longer even try to go)to community. When I first quit practice, I took the training and became a volunteer EMT (Basic)- I no longer can even do that. I’m sure that you are aware of the social consequences, and the negative impact on our marriages. I have been to Diamond, Michigan Head Pain, Ohio State clinic, Kettering; have been a guinea pig for multiple trials at OSU; seen dozens of doctors, traditional and non-traditional, am a Reiki Master, tried acupuncture, etc. I’m sure you get the point. Without self-hypnosis, I wouldn’t get to sleep at night, although the waves are usually 90 minutes apart at night. As I can no longer play competitive sports, nor even exercise (the added pressure blows up my head), the body is starting to fall apart after all of the years of action: ruptured disc L4-5, DDD, spondylosis, rotator cuff surgery, carpal tunnel surgery, two knee surgeries, 5 sinus surgeries to try and help with the sinus element and the usual array of arthritis/bursitis, kidney stones from all of the meds, and, as a bonus with inactivity, I am now diabetic.
    I only write this to let you know that we are out here, and understand your pain.As a medical person- check out the British sites: BBC; Lancet; British head pain group. Thanks to idiot Bush, they are about 6-7 years ahead of us; at least you can see what coming here. A major point: they view all neurologic mis-activity as due to a common source, and include seizure disorders, migraine, Parkinsons and Alzheimers in the same vein (principally relating to the white matter tangles, etc). There are new drugs having an impact on both Parkinson’s and Alzheimers and a non-physician at Nortwestern has successfully used stem cells with Alzheimer’s patients and found that the brain (of course, no new cells) rewires itself, and as such, greatly ameliorates the condition.
    I was a guinea pig with propofol experiments, which successfully blocked migraine storms- unfortunately, I don’t think any docs will touch this. Also, in Germany, two doctors are putting chronic pain patients into a drug induced coma for 5 days- sort of like the propofol squared- to let the brain reboot. So far- total success, although I don’t think they’ve tried it on any migraneurs yet, due to the risks. The closest stateside was a doc in Miami who was doing two days, but it apparently was not enough. Being disabled will give you more time to research and network. I won’t say “hang in there” as one thing that has kept me alive all of these years was something a chronic pain patient told me years ago: It’s your decision and your right not to go on; I just choose to stick around for today. He had horrible back injuries, and held out for over 20 years, one day at a time. I’m sure that you, like me, long ago gave up any ‘long term’ planning; heck, I never know from hour to hour if I’ll be vertical. I truly hope this helps, and pardon my being bloody blunt, but I imagine that, like me, you are sick to death of all of the sugary platitudes- right up there with the morons in our families who say ‘so what- it’s just a headache- shake it off!’.
    Finally, if you don’t already, find a GOOD pain control psychologist- I recommend those with hypnotherapy training. Feel free to contact me any time, and I’d be happy to talk to you on the phone if you so wish. We are, after all, amigos de renir.
    Pete Myer
    Thornville, Ohio

  • Janet
    5 years ago

    Kerrie,
    As always, for me, your articles ring all too true. While it’s great that migraine.com provides us a place to hear about what others like us feel…it doesn’t make things easier for those who have to “deal” with us. After 38 years of migraines…the last 14 chronic ….I’ve never felt so isolated as I do in the past weeks. Stuck inside day after day…in bed day after day…hoping…waiting…praying…..I am deeply depressed. And no I won’t take anti-depressants any more. The side effects from them are far too overboard for me. My husband tries and tries….but the fact is NOBODY gets us unless they walk in our shoes. I don’t know anyone that isn’t in cyberspace who suffers from them, other than my daughter…I guess I needed to vent. But I’m not saying anything new. I don’t fit in anywhere and I’m tired of explaining what’s wrong with me.

    Blessings for a happy new year to all,
    Janet

  • Tinytardis
    5 years ago

    Thanks for your v timely article this wk has been quite lonely a close friend has turned her back on me without explanation but I think it’s largely down to me not always being available or in good form due to chronic migraines. And work have reprimanded me for not giving sufficient notice for being out sick with an attack- how that would be possible is beyond me!! So while I wouldn’t wish this vile illness on anyone it is comforting to know I’m not the only one occasionally feeling defeated frustrated and misunderstood and it will help me once more put on a smile n pull myself up ready to battle tomorrow’s migraine n hope I win some of the battles even if I don’t win them all x

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