Headaches are a huge part of my life. They are as much a part of my story as anything else.
I’ve been getting daily headaches for almost ten years, without any real significant pain-free period of time.
I’ve been to at least two dozen doctors over the years, between primary care physicians, specialists, medical studies, etc — both here in Michigan and back home in New Jersey.
In the past, I’ve shied away from actively telling this part of my story for a couple of reasons:
- My health problems aren’t nearly as bad as some other peoples and it is totally not my style to go around and complain about my life.
- I really don’t want unsolicited and garbage advice from people who are just trying to help.
But I’m putting those reasons aside because my headaches are a part of my life, they’re a part of my story. Part of sharing that story is talking about what life is like dealing with an everyday chronic illness.
I’m not going to spend a million years here today going on about all the details of my headache journey, but I am here to start with a place that I can update from going forward. I also want other people who suffer from headaches and other chronic pain disorders to feel like they’re not alone and that there’s definitely a lot of people out there going through similar fights.
Although, I am pretty serious about the unsolicited garbage advice. I’ve had daily headaches for almost ten years — that’s more than three thousand five hundred days of personal research. I’ve seen and talked to over two dozen medical professionals.
I’m not going to react politely to “have you tried….<insert whatever fad thing you read on Facebook/heard on the radio/this thing someone you know who also has headaches tried>”. I do apologize in advance, but when I’m in pain, the words “have you tried” sound so much more negative than I’m sure they’ve ever been meant; but the ability to process and empathize that just isn’t there for me in those moments. Also…
I’ve had daily headaches for ten years, I’ve tried all the things.
But, in good and happy and fun news, that brings up another big reason I’m excited to share more of my headache story. I’ve finally found a great neurologist here in Michigan and we’re making great progress on accessing, treating, and managing my headaches.
She’s one of the best doctors I’ve ever had. She listens to me, she works with me, and I really feel like we work together as a team trying to figure out what’s going on inside my head and around my body.
Overlapping types of headaches. One of the most recent, and largest revelations to date, is that I have at least two overlapping types of headaches.
One is a continuous daily headache called hemicrania continua that spikes in pain levels throughout the day. The other is related to my menstrual cycle and is a persistent migraine-type headache that doesn’t change much for the few days each month that I have it.
Once we were able to assess and treat the chronic daily headaches, it became clear that there was a much different headache that also existed, but was only appearing around the time of my menstrual cycle.
I don’t really drive. I can and I will in emergencies, but the types of headaches that I get can come on very quickly and without very much warning. One of the most terrifying things in the world is being behind the wheel while in extreme amounts of pain.
We live in a small town, I work at home, and Jeff likes driving. So this isn’t a huge burden. I do miss taking drives to relax and listening to awesome music on the radio and singing at the top of my lungs to let out some stress.
I don’t drink. Alcohol has always been a headache trigger for me. Even the smell of red wine can make me feel sick. But in addition to being a trigger, it’s a big no-no in conjunction with some of the medications I’m taking.
I keep joking around that it takes them more time to put all of the huge no drinking alcohol stickers on the bottles than it does to actually fill the prescription.
I can’t spend that much time out in the sun. I’m pretty fair skinned as it is, tbh I’m pretty much clear. So long stretches in the sun have never been my jam, but as a side effect of one of the meds, my melanin production is down even more, so less sun and more SPF.
Travel is difficult, especially airplane travel. The pressure messes with my head, the cramped seating, the heat from being around all the people, it’s just pretty much a full on feel like crap day whenever I have to do any type of air travel.
Luckily I’ve been traveling with Jeff lately and I can just take one of my bad headache day meds and not worry about too much besides making it through the day.
I’m taking a lot of medicine. I don’t do opioids — I have a chronic pain problem, and those will never be the solution to a chronic problem. But I do take several different types of preventative medications for both the daily continuous headaches as well as the menstrual headaches.
Of course, those medications have side effects, so I get to take a few other medications and vitamins to alleviate those side effects. I don’t love being on a bunch of medication, but it sure as hell beats having debilitating pain every single day and not being able to do a damned thing about it.
Part of My Story
I’m telling you all this now because it’s a part of who I am. It’s a part of my everyday story.
Each day this month, I’ve been waking up and working on my 100 Days of All About Me project. There have been a couple of days this past week where I needed to push that back to the afternoon (or evening) because I woke up with a headache, or woke up with a headache and then had to take some medicine, which then, in turn, made me take a nap in the middle of the afternoon.
Telling you this is part of my feminist scrapbooking journey because I’ve spent the better part of two years talking with my therapist about being kinder to myself in times of pain and struggle. The question she always asks me is, Kristin, what would you say to a friend in the same situation? And I would never let my friends beat themselves up over something like this.
So here I am telling you about this part of my story so that when you’re struggling and things hurt, you remember to be kind to yourself as well.
Thanks so much for taking the time to read about my headache journey.