My 20-year battle with chronic migraines

Living with a chronic condition can be really painful and lonely. For 20 years, I have been a chronic migraine sufferer. In an effort to help others with similar experiences feel validated and supported, I decided to start sharing more of my story on social media and here on my blog. We can only squash the stigmas around things if we talk about them, right? I hope after reading about my experience that you’ll share your own experience with chronic illness in the comments so others might find some comfort in knowing they’re not alone.

It's hard to explain the intensity of a migraine to someone who has never had one. They are most certainly not just a bad headache. Have you ever been nauseous from the flu or food poisoning? Multiply that feeling by 10 and that might be about the amount of nausea I feel 5 to 15 times per month with my migraines. Now think about any throbbing pain you’ve experienced and add that on top of the nausea. Throw in some irritability, dehydration, and fatigue and you might have a glimpse of what it feels like. Here’s a graphic that does a pretty good job of explaining a migraine:

After taking medication (I usually take 50mg of Sumatriptan and 400mg of Naproxen) I feel completely wiped out, much like a hangover. I also experience acute pain in other parts of my body and pressure in my chest like I might have a heart attack. In years past when I was getting very frequent migraines and probably taking too much medication, I had frequent stroke symptoms like slurred speech, memory loss, and cognition issues.

For many years and still today, many of my friends, co-workers, and even family members are surprised to learn that I suffer from chronic migraines. I’ve always been pretty good at hiding it—still doing my make-up in the morning, slipping medication out of my purse and into my mouth without anyone noticing, excusing myself to the bathroom to throw up, or just canceling plans altogether so no one would see me. I still gave presentations at work or in business school while in a full-blown migraine or laughed through jokes at a party or dinner pretending to be fine.

Only those who live with me really understand the severity of my migraines. Roommates, partners, and family members have quickly discovered that sometimes I have to spend days in bed, get very irritable, am unable to engage in normal conversations or activities, and can’t really be comforted by much. And trust me when I say that this can really damage close relationships.

If you’re reading this and you don’t have a chronic condition but maybe you’re curious and caring and just want to help someone you know who might be suffering, my biggest piece of advice would be to follow the lead of that person. If they want to be left alone, give them space. If they ask to be held, hold them. If they need a day off from work, give them the day (the work will get done, I promise).

Don’t push them to be active or to get out of bed if they’ve communicated it’s not possible right now. Don’t shame or guilt them. Don’t question whatever they might be doing just to survive another episode or flare-up. And be sure to look up “Spoon Theory”—a metaphor developed by Christine Miserandino to explain the limited energy and resources available for people with chronic illnesses and disabilities.

If you have advice on things to try to help alleviate a chronic issue like migraines, by all means, please comment on this post because it might help someone! But before offering advice to your loved one (or a stranger) directly, ask if they’re open to hearing it. I can’t tell you the number of times I’ve heard stories or “cures” that just make me feel worse: “Well my sister’s friend’s co-worker did XYZ and she’s now migraine-free!” or “If you do XYZ you won’t have migraines anymore.”

Trust me when I say I’ve spent an obscene amount of money and mental energy trying nearly every solution under the sun—from anti-depressants to epilepsy and blood pressure medications to muscle relaxers, different birth controls, and a million supplements, chiropractic care, acupuncture, reiki, cupping, massages, Botox, cold/hot compresses, food restrictions, and exercise. I guess I’m just one of the lucky ones with a genetic predisposition (my mother and grandmother suffered as well) and no cure.

Some of the things that have given me some frequency or duration relief:

• Propranolol (this is a blood pressure medication that I’ve taken daily for years on the advice of a neurologist and it did cut the frequency in half for awhile)

• Allegra-D (I’ve had allergy tests say I’m allergic to dust mites and tree pollen, so I also take this daily because allergy pressure will trigger my migraines)

• Not drinking alcohol (used to just be red wine and some beer, but as I’ve aged it’s pretty much all alcoholic beverages that can trigger my migraines)

• Eating better and being more active (but activity during a migraine will make it worse)

As far as I’m aware, most chronic conditions are permanent but may go into remission from time to time. I think it is essential to have hope, but to also allow yourself to accept the diagnosis. I go through periods of starting over with trying different things, but when I get too hopeful that I might find real relief, I am always left feeling so disappointed (last week I cried my eyes out about it for 24 hours straight).

It’s personally better for me to accept that migraines will take me down for nearly half a month every month and to give myself the grace and understanding that I just won’t be who I wish I could be during that time. With chronic migraines comes anxiety and depression so I try to remember that I can and will find hope and joy in those other halves of the months and just try to hold on. If I’ve survived the last 20 years of suffering, I can do 20+ more…

I hope this helped explain my personal experience with chronic migraines. If you have any questions for me, please comment below or message me on social media. I also invite you to share your experience with a chronic condition below in the comments so others might find solace in knowing they’re not alone. And please remember, if you’re suffering, there will be good days ahead. YOU ARE A BADASS!!

With love,

Alison Rose

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