Headaches are a common symptom of tick-borne illness. Now that I’m in remission, I rarely get headaches. When I do, I’ve become adept at recognizing why I have them. Knowing the nuances of my headaches helps me determine whether my pain is Lymeor babesia related—or from something else entirely—and how to treat it. In short, I now know my own head as well as I know my own body.
I trained myself to recognize gradations and causes of headaches in part as a defense against people who thought they knew my head and body better than I did. In my worst days of battling tick-borne diseases, when I would complain to an acquaintance of a smashing migraine, they might say “It could be the weather.”
I wanted to scream. A headache that severe does not result from a shift in barometric pressure. Sometimes on muggy days with impending rain, I felt fine. My head was clear. I had no brain fog or pain. Other days, it would be beautiful and sunny outside, and I felt my head might explode. Healthy people were outside playing, encouraging me to enjoy the weather—“it’ll be good for you!”—when all I really needed was to take some migraine medication and sleep.
My headaches were caused by tick-borne illnesses, not by the weather. They also weren’t stress-related (though stress could aggravate them), or caffeine withdrawal. If you are bedridden with Lyme, wishing you could just take your head off and put it on the nightstand because it hurts so much, I am here to remind you that your pain is likely caused by a bug in your brain, not by any of these more typical causes.
It’s important to talk to your Lyme Literate Medical Doctor (LLMD) and perhaps get a scan of your brain to make sure nothing else—outside of the scope of tick-borne illness—is going on. It also helps to recognize different headache symptoms, so you can be as specific as possible when talking with your doctor. In my case, headaches related to Lyme took over my whole skull with a throbbing pressure, sometimes making me feel like my brain was getting too big for my skull. Pain caused by babesia was different; that tended to be a migraine, focused on the left side of my head. It was more searing, like someone sawing into the left side of my skull. Babesia headaches caused nausea and light sensitivity, while Lyme headaches caused a more generalized, tolerable pain.
Your own headache symptoms might be different. You might be suffering from co-infections I did not have, and suffer relapsing fevers that can cause their own species of headaches. Do you tend to get migraines for a few days in a row? Are your headaches local or generalized? Do they come on during Herxheimer reactions, or when you are pulsing antibiotics? If you’re female, are your headaches specific to a certain time of the month? Figuring out these nuances can help your LLMD treat you. I recommend keeping a written log, and marking any external factors (like stress or certain foods) that you think might be worsening your symptoms.
These days when I do get a migraine, it’s usually because I’ve pushed myself way too hard neurologically or physically. If they persist, I know my babesia is flaring. But the headaches I usually get now are the “normal” headaches healthy people thought I was suffering from years ago.
I’ve learned to differentiate between these headaches, too. Weather-related headaches mean slight pressure at the base of my skull, across both sides of my head. These I can’t do anything about until the storm passes, but the pain is minimal. Stress-related headaches cause inflammation only on the left side of the base of my skull, creating a knot that I can actually feel with my hand. It helps to rub the knot or get cranial-sacral therapy and sleep. Hormonal headaches feel like a buzzing across my temples, and are relieved with over-the-counter painkillers. Dehydration headaches are a tightening on the top of my head, signaling that I need to drink electrolyte-enhanced water.
All of these headaches are bearable. Getting these typical, that is, non tick-borne disease related headaches reminds me how very, very different they are than the agonizing headaches I suffered years ago. Learn the nuances of your own headaches, talk to your LLMD about them, and don’t let anyone but your trusted medical providers tell you what the cause of pain is in your own body.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: firstname.lastname@example.org.
This article takes me back to when I wondered if there would EVER be a day without an excruciating, all encompassing headache. Thankfully, these headaches are a thing of the past due to appropriate treatment. One of the most effective drugs for me was minocycline due to its ability to cross the blood/brain barrier: https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/
Appropriate Babesia treatment was also crucial: https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/
For me initially, the headaches were in the meninges (the layer encompassing the entire brain). The inflammation and pain were beyond anything I’d ever experienced. Then they became occipital (base of where head meets neck). Since I met numerous patients that had a Lyme diagnosis as well as Chiari, I had a MRI to rule that out: https://madisonarealymesupportgroup.com/2016/04/02/chiari/ The MRI for me was normal – showing nothing that should cause the type of pain I was experiencing.
At this point, I tried MSM for pain/inflammation with good success & have been taking daily since: https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/
I also added in systemic enzymes for the same reasons, although both MSM & enzymes do 1,000 beneficial things: https://madisonarealymesupportgroup.com/2016/04/22/systemic-enzymes/
I recommend you discuss these options with your practitioner IF you’ve had sufficient antimicrobial treatment but are left with a lot of pain. These substances did not work for me while in treatment for active infection. It wasn’t until after stopping treatment that they worked for me; however, you may be different.
I do feel one mistake people make is quitting treatment too soon. ILADS recommends being symptom-free for 2-3 months before stopping any treatment. As you see from the article on Babesia, Dr. Horowitz recommends 9 months to a year of steady 3 weeks on, one week off treatment. Many quit this too soon. It’s important to overlap treatment as well with numerous things hitting all the various angles. It’s also important to switch meds when you reach plateaus. My husband and I were treated with 4.5 years and have relapsed twice requiring 2-3 month stints of treatment. Make sure you see your practitioner if symptoms return. Read the following articles for examples to discuss with your practitioner: