“What frustrates you most about living with migraine disease?”
I’m not at all sure I can choose one most frustrating aspect of migraine.
Around and around and around I go - Carousel at Buenos Aires Zoo ©2011
Is it all the time I have lost from life, family, and friends over the years? I guess I would say no — that is the saddest part.
Is it all the things I could/might have done without migraines? Well, that part is mostly infuriating.
Is it the fact that migraine has been so misunderstood, under-researched and under-treated? Or that migraineurs have been misunderstood and mistreated? Hmm… that would rank right up there — with most sad and infuriating!
Is it the pain and sickness? I don’t think so, although the bodily symptoms are surely the most excruciating, debilitating and physically draining.
No, what frustrates me most about living with migraine has to be not what I feel, know, or can measure and learn about it, but rather that which is unknown. All the stuff we don’t know.
What has brought this to me? What are the actual, provable causes/triggers for my attacks? Nothing appears to match up consistently regarding food, hormones, environmental factors, stress or weather! It’s not only frustrating, it’s humiliating, it’s disgusting, it’s exhausting…
For years off and on, I have kept diaries of hormonal activity, diet (suspected foods), exercise, weather, stress factors, and so forth, and have never been able to pinpoint consistent factors or causes of attacks. (This is not to say that keeping a diary is not helpful – I believe it is definitely worthwhile, especially when you begin to learn your patterns and triggers.)
Many times I knew attacks were hormone-related because they occurred horribly and regularly around my period or ovulation, or I could tell it was wine, alcohol, or too much of a certain food, or I was certain an emotionally stressful event triggered an attack.
During my two pregnancies and breastfeeding months, I was blissfully migraine-free. So now that I am in menopause, I expect that hormones will somehow “level off” and I will be migraine-free again. Well, I am still having attacks and still trying to figure out what triggers them.
I learn about foods and the elimination diet, and then a study comes out saying foods may actually have little to do with migraine. I’ve tried many medications and supplements and learned about the stacking factor — that one trigger might not get you, but add a few more and the fifth one on the list might. I lose count. I read about new potentially effective medications, new studies on various neuronal or cellular activities and their impact on our nervous systems and become hopeful.
And then I ask: so after all these years, why don’t we know? That is frustrating. And even while it’s encouraging that there are many new theories and studies and potential treatments, it’s also more frustrating. Oh boy, now which of these applies to or might help me?
At some point along the way, I took some advice I heard and stopped thinking about the possible causes/triggers, just accepted that I have migraine, period, tried to look at any bright side of it — like making wonderful connections and friends around the world or the fact that I was the sensitive one, the one who would wake up at sounds in the night and be able to warn others of danger. I hoped that acceptance would help me relax and perhaps that would improve my situation. Maybe I relaxed a little about them, but I still had/have migraines.
Menopause has helped some. My migraines are a little less intense and no vomiting, but they are still painful, disruptive, sometimes debilitating, and always limiting in some way.
And trying to answer the why of it all and to identify triggers for my attacks — that still frustrates me the most about my life with migraine.
This post is part of the April 2011 Headache & Migraine Disease Blog Carnival, hosted this month at Somebody Heal Me.
Bless you! This is EXACTLY the way I feel and you expressed all the things I wanted to say in my post on this topic. I am just starting to connect with other migaineurs online, and it is helping so much to read posts.
BTW, my doc–Peter Goadsby at UCSF, a well-known specialist in migraines, told me that migraines do get better after menopause–with one catch…it takes 3 to 5 years after menopause.
Thanks, and I’m so glad you are connecting with others online — that is definitely one of the good things about migraine. I am jealous that Dr. Goadsby is your doc, it’s wonderful that you have access to him. I’ve heard that it can take a few years into menopause to have significant improvement. I’m at the five-year mark so I will plan on it soon and let you know! Keep in touch and all the best to you.
Thank you so much for this post. I am a chronic migraineur and I am hanging on by my fingernails hoping menopause will help.
I have to be careful — asking too much “why” on the morning I wake up with a migraine can easily turn into self-blaming. At the end of the day, it is not my fault I have this condition, and it’s not under my control, either.
I too hope you find relief in menopause, and you are so right that it’s not your fault you have migraine. And yes, I have sometimes allowed myself in asking why this attack, what caused it, to start thinking that I did something wrong or didn’t do something right. No self-blaming allowed, right? Thanks for your comment!
Hi! I can’t even begin to tell you how many people have told me to wait for menopause and I would feel so much better. I am 33. REALLY??? I did find a huge connection in food triggers and in sleep, but my migraines can flare up over nothing as well. It is very frustrating when people act as if you are making it up. WHY in the world would anyone pretend that they have incapaciting migraines???
Hi, Joy! Yes, waiting for menopause when you’re 33 isn’t helpful or realistic even. And I understand that some women don’t find relief in menopause. Everyone is different and there are no guarantees. No, you need to have effective treatments now. I like it when I can determine the trigger for different attacks, but those that seem to come from nowhere for no reason are demoralizing. That’s when I just throw up my hands and say it’s a disease, maybe there doesn’t have to be a trigger every time and move on. It is what it is and then focus on good things. All the best to you!
I know what you mean! I get so many migraines that when I do not get one I find myself asking ‘What is different about today from any other day that I did Not get a migraine?’ It seems triggers compound on each other so that we never really can tell what is causing the migraine we have. Except the hellish hormonal ones that I definately have an issue with.
Right, Nikki — it almost seems like you can trigger another attack just from worrying about what triggered the last one!?! And yes, I could almost always recognize the hormonal triggers, too, but we have numerous hormones other than reproductive flitting around affecting other neuro-chemical interactions and it becomes a hopeless jumbled jigsaw puzzle… maybe better to focus on living as healthy a lifestyle as possible, healthy foods, sleep, and exercise when possible for us and the best health care and treatments we can find/afford!
Betsy,
You wrote: “Is it all the time I have lost from life, family, and friends over the years? I guess I would say no — that is the saddest part.” Oh, how often I have thought those exact words. I’m actually on a medical leave from work and headed into the hospital in two days to try and break this cycle…and I’m 56 years old. Still waiting for the “menopause” cure. But I begin to wonder if it works for the chronic daily version of our disease.
Your post is very good on many levels. What it speaks to is, I think, working towards acceptance of the disease, and our lack of control over it. Control the weather? Control all the substances our bodies come into contact with? Control our stress levels? (HA!)
Acceptance is so difficult, but it is the key, I think. Knowing when to push on, when to stop. Learning to not be ashamed of our disease–just because it isn’t visable or understood well doesn’t mean it isn’t real.
And don’t you just love those individuals who look at you and say ” You know, I never get headaches….” !!!! MM
Wow, Merri, I wish you the best outcomes for your hospital stay and medical leave! I admire your courage.
Perhaps you’re right about the chronic attacks and the hormone-menopause connection. I don’t know, but I do know that my migraine attacks have changed significantly in menopause. Not so much for one of my sisters, though.
Lack of control – there I think you’ve nailed it. And accepting that lack of control after years of hearing harmful comments like, ‘you should be able to eat, exercise, or manage your stress well enough to stop having those headaches!’ There are so many things we can’t control, but we can at least focus on those we do have some control over, like what we eat, trying to get good sleep (emphasis on trying), maybe decreasing the number of things we think we have to do, etc.
And then as you say accept that it is what it is. And coming to this, finally, after 40+ years of migraine disease in my life… hmmm…
Thank you for your insightful comments, and let us know the results of your coming adventure if you get a chance!
Here’s to acceptance,
Betsy