I am a migraine warrior
Unfortunately, migraine is a huge part of my life, and has been for about 20 years. I thought they started in my late twenties, and never knew what triggered the beginning.
But I’ve been doing some research lately, and it’s possible I’ve always had them, but that they looked different when I was a kid. I missed a fair amount of school when I was a pre-teen – not enough to cause problems for me academically or to cause problems for my parents with school administration – because of headaches and stomachaches. The pediatrician told my mom it was “school-itis”. It was true that I didn’t like school then, so maybe he was right.
June was Migraine Awareness Month and I learned a lot from it. I was even able to teach my dad, also a Migraine Warrior, some new information (for instance about kids – if he’d known about that when I was a kid, he probably would’ve taken me to a neurologist when I was 11). (Also, shh, I’m not allowed to talk about my parents online.)
Anyway, I’ve been lucky. I don’t have Chronic Migraine, which involves 15 or more headache days per month. At my worst, I averaged 11 per month. That means I have what’s called Episodic Migraine. I’m also lucky because I’ve never ended up in the ER because of a migraine. I’ve rarely missed a work day. I rarely need to take a break from my life. I’ve become really good at pushing on and forcing the symptoms away until I’m alone or at least done with whatever most important thing needed doing that day. I don’t know why I’m able to do that. Or when. Because sometimes I can’t.
Sometimes I can’t focus on my current writing project. Sometimes I can’t handle people talking at a normal volume. Sometimes I have to skip Taekwondo.
I tried going to a neurologist about 6 years ago. He’d been recommended by my GP, who I liked at the time. We tried a couple of different drugs aimed at preventing migraines, but they didn’t work and had awful side effects. Life-endangering side effects. The last drug exacerbated my Reynaud’s Disease. When I told the neurologist, he explained that exacerbating Reynaud’s was a known side effect of this particular drug and that he didn’t know I had Reynaud’s. It came up in our first appointment.
While still on that last drug, I decided to try acupuncture. I’d been researching it and found a local place that practices what’s called Community Acupuncture. This means they see more than one patient per hour, which allows them to lower the cost per session, which is really awesome when you don’t have insurance or your insurance won’t cover preventive therapies. My research told me that acupuncture has been proven in actual scientific studies to reduce chronic pain.
My neurologist’s reaction? “Call me when you’re ready to try the next drug.”
I haven’t called him again.
I’ve been doing acupuncture since 2014. It took a while to figure out the points that worked best for me, for there to be a significant decrease in severity and frequency. But we got them down to about 2 headaches per month. It was amazing. I felt like I’d been given my life back.
Unfortunately, it didn’t last. Life circumstances got in the way. My job responsibilities and hours changed, and I was no longer able to travel to my acupuncturist even once a month (they’re 40 minutes away from home and an hour away from work). By the time my hours changed again and I could again commit to once a month, I was back up to about 8 migraines per month. Not as bad as before, but still demoralizing and draining. My acupuncturist changed around that same time, too, and the new one was too gentle. It took me a few months to get up the courage to tell them what had proven to work best for me.
And now I go as often as I can make the time. So far this summer, I’m going about every 10 days. Because of my age and changing hormones (always my biggest trigger), I have good hormone months and bad hormone months, which means there’s a wide range for my migraine frequency. I get between 2 and 7 migraines per month now. I hope that will improve by the end of the summer.
Sure, 5 years ago I thought I’d go for a few months and be cured, based on others I spoke to. However, my body doesn’t work that way. My body needs to be regularly reminded how to heal itself, needs to regularly have my chi pathways reopened.
Are you a Migraine Warrior? What has worked best for you? Tell me about your experience in the comments.
ETA
I’ve had an amazing response to this post through the comments below and emails from readers. I’m sorry that so many of us suffer from this terrible and misunderstood disease.
In case you’d like more information or more support, please check out these links:
Chronic Migraine Awareness, Inc.
CHAMP (Coalition for Headache and Migraine Patients)
And we can sign the Declaration of Rights for People with Headache Diseases from CHAMP.
Bisous and big hugs to all the Migraine Warriors out there!
Like you, I’ve had migraines since I was a kid but mine aren’t the kind that I can put off. But mine has a nasty habit of changing or evolving and that makes it really tough to treat. The type I have now are chronic migraines with associated vertigo. I’ve tried a few different medications with little luck and lots of side effects. Right now, I’m in a holding pattern waiting to get with a new neurologist as my last one just retired. For me, stress, sudden head movements, and some fluorescent lighting are triggers. Mine got to the point that they really made it impossible to work through or around and I was put on disability as a result. All that means is that I don’t have to try to work through them… doesn’t really change how they still affect my daily life.
Tracey, I’m so sorry for what you go through. Have you tried any of this new class of meds that were created especially to prevent migraine, like Aimovig? I haven’t. I’ve heard they’re expensive and hard to get insurance coverage. But your new neuro will know how to help you through that minefield, I hope. Check out the links I added to the post for new ideas for support and information. Good luck!
I too have suffered from migraines and Reynauds all my life which at this time is 53 years. Stress is the biggest trigger. But smells will do it too. Avoid anything flowery or too baby powdery.
One of the three things I found to combat migraines is a cat or dog, they can calm, subdue and prevent the on onset of stress. A good chiropractor helps too. Lastly I use a T.E.Ns machine works wonders when you can’t see a chiropractor or acupuncturist.
Now I get 2 to 4 migraines a year and they aren’t as debilitating as they use to be. Instead of days lost to pain now it’s hours.
Feel free to contact me if you want the name of my T.E.Ns machine(it’s small and portable) and where I got it.
Wish you well
Hormones are my biggest trigger, but I’m also triggered by smells. Anything too sweet like vanilla and chamomile, but also cigarette smoke. I don’t know anything about TENs machines – I’ll have to look that up. Thanks, Wanda! (Feel free to email me at tori@toriknightwood.com with the info about yours.)
HI Tori – Like you, I suffered from migraines for many years, starting around age 15. This was back in the 1950’s so treatment was limited. They continued, worsening as I grew older and finally stopped in my mid forties. Often they were violent headaches – upset stomach, could not bear the light or noise. Several trips to the hospital meant a nurse meeting us at the front door with a shot of Demerol. While this did stop the pain, it also knocked me out for up to 18 hours. At one point, I was hospitalized for three days. Not fun! I did eventually discover some triggers – anxiety, chocolate and red wine were the top three. Also found out when we realized our son had migraines, that in children, they often took the form of stomach aches. So much more is known now about them, I do hope they find relief for you.
Thanks, Maggie! I’m so glad yours have stopped. They sound like such a nightmare. It’s amazing how different they are in different people.
My migraines started around the age of 16, my parents took me for all kinds of tests because I lost a sister from an aneurysm. I’ve been lucky enough to discover some of my triggers. Some were food related however some are hormonal while other times I’m affected by the weather. The unfortunate thing with me is I’m allergic to aspirin, ibuprofen, and nsaids. It limits what I can take, I have found that if I catch it early enough Tylenol and caffeine will help take the edge off however I have a horrible metallic taste in my mouth for at least two days afterwards. My sister believes it has something to do with vaccinations because she, my brother and myself all suffer, we had 3 older sisters and other than the one we lost the other two don’t suffer, I have no idea if this is true or not but it’s worth checking into. Sometimes I will have indications my vision will get blurry and I will have spots before my eyes other times it’s just there. I have no great words of wisdom I just know how much it takes away, I have been blessed with a very understanding husband and children and luckily neither of my children have shown any indication that they will be sufferers too.
Wow, Jolynn, I’m so sorry that your meds are limited by allergies. I always start with ibuprofen and then progress to the triptans when it doesn’t go away. I think I know my triggers, too, but the biggest one is hormones, which I can’t do anything about. Just waiting for menopause. Hugs!
I’ve had migraines since I was a teenager. It was when I got a sudden growth spurt. Got even worse when I got age 20. I was passing out from them. Turns out during a childhood injury I broke my neck between C1-C2. It was held together by tendons. Had surgery and they got much better then came the stress migraines that they call cluster migraines. Would be at the doctor’s or hospital several times a week. Finally got put on disability. My neurologist tried meds but too many side effects. Now I get Botox injections and have my migraines down to @ 5-10 a month. The good news is I never passed out again after my surgery 😣
Wow, that’s intense. My August was bad – 12 migraines. I haven’t had that many in a single month since before I started acupuncture. I’m glad Botox works for you! -Tori
I suffered too, but only for a few yrs when I found out that the most common cause for migraines is hormonal imbalance. After a complete hysterectomy my Dr. Put him on a large dose of hormones. Cutting down step by step & finally stopping altogether & suffering major hot flushes instead they gradually became fewer & fewer until stopping altogether after 2 to 3 months. I gladly took the hot flushes over the migraines.
Hope this can help someone. Good luck.
I’m so glad you found relief! Mine are hormonal and I’m just counting down until menopause. -Tori