Hello friends, or if we haven’t met, howdy stranger. My name is Cassie, and I had a hell of a time over the last year with my hormones and what all they could do to my brain and body. Spoiler alert, it was awful, and it could have gotten worse if I hadn’t taken a lot of notes, connected a lot of dots, and listened to my guts even when they really hurt.
A disclaimer: I’m neither a doctor nor a medical professional of any kind, so all of this is my personal experiences and my best guesses as to what was taking place inside my body. I wanted to put this out there in the hopes that if anyone is going through a similar issue, this might give you a potential avenue to explore and different solutions to try.
In January of 2021, I switched from taking a birth control pill to an IUD. Remember this for later.
In June of 2022, I got my first migraine. Ever. I had this overwhelming pressure in my head, pressing from behind my eyes. That’s shitty enough as-is, but we were about to leave for an international trip, and I was panicked that I might not be able to go. I went to our doctor, and he determined I had a sinus infection, and put me on a round of prednisone to treat it. The sinus infection cleared up, and the headache went away for the first week or so. But then the headaches came back. I was suddenly a person who was prone to getting migraines. And I got them a lot.
Over the summer, they happened very sporadically. I had a bad headache one day, and then it would go away. My vision would get blurry a few days later, then nothing for weeks. But as I passed from summer into fall, I had more and more bad days, all running together. By the end of September, I was stuck in a cycle of having a continuous headache for two weeks at a time, which had the potential to spike up into a migraine at any time. Then I’d get two weeks off of feeling pretty normal, then two weeks of headache, rinse, repeat. (Important note: I did not realize there was such a clear 2-week pattern to the headaches for the first few months, because I was busy suffering. More on this later.)
During the two-weeks-on periods, I would open my eyes in the morning and my head would hurt. The pain felt like I’d been wearing a hat that was too tight for too long, and that somehow that soreness also extended into all my nerves. It was like my hands, eyes, sinuses etc were all hooked into my neck and brain with uninsulated wires. If I experienced a trigger, like getting too hungry, hearing a loud noise, or even smelling something too strong, the wires would all spark at once and fry the system, and I would go down. Sometimes my head would hurt just for a few hours, and sometimes the migraine would last for days. For five months, there would be three or four days every month where all I was capable of was lying on the couch and waiting for the pain to stop. There wasn’t room for anything else in my skull.
In addition to the pain in my head, I would also experience the following symptoms-
Vision blurriness - my vision would get noticeably worse when my head started hurting, and I would see a significant aura around lights. If you’ve ever played around with your phone’s photo filters (and who hasn’t) it was like there was a white vignette filter on the edges of my vision, and if things were too bright, the vignette would spread and my vision would totally wash out. I stopped driving at night because the aura around oncoming headlights made me unable to see the road in front of me. If I was trying to read something or look at my phone, my eyes would slide out of focus, like they were pointing in different directions.
Sensitivity to light & sound - on my bad days, I had to keep all the lights off in the house, or wear sunglasses indoors. I also had to wear earplugs to do anything that required a lot of objects clattering around, like washing the dishes, taking out the trash, or cooking.
Metallic taste in mouth - I constantly had a musty/metallic taste on the back of my tongue, no matter how often I brushed my teeth or used mouthwash. I also constantly craved electrolytes, and drank primarily sports drink mixes or coconut water for months. Drinking just water made the weird taste (and later, the headache) worse.
Hunger headaches - My body also became incredibly sensitive to being hungry. If I went into any kind of calorie deficit, my headache would spike and it would take days for it to go back down.
Neck pain/joint pain - intense stiffness/soreness in my neck was often a warning sign that a string of headache days was coming. Then during the attacks, I would also develop dull, aching pain in all of my other joints.
“Weird Cognitive Stuff” + Inability to initiate tasks/focus - there would be a couple days per headache cycle where I just would not be able to do anything. My coordination would dramatically worsen, and I’d struggle to pick things up or write legibly. My brain would literally just go blank and stop processing anytime I tried to push to the next step of a process, like it was stuck on a loading screen. Usually this only affected thinking-type tasks, but when things got really bad, it would affect my ability to move or perform basic functions. One time I got stuck putting on my shoes. I put on one and then my brain shut down before it put on the other one. I just sat on the couch for five solid minutes staring at my bare right foot, trying to string together enough energy or whatever to put my shoe on. I couldn’t. I had to lie down on the couch for the rest of the day.
Dysphoric Depression/Severe Anxiety - this would hit in waves whenever a headache got bad, or when one was coming. It was the absolute worst part of this that I experienced, and I hope I never feel this specifically again. I think it was my brain trying to process the constant pain I was feeling in my body, desperately stringing together pieces of my life into a conspiracy board of constant intrusive thoughts. My brain felt like it was always scrubbing between two staticy radio stations that both played nothing but nightmares, and I couldn’t turn down the volume. It would play me all these stories about my personal failings, what terrible stuff could happen to my friends, how my marriage was falling apart, from absolutely nothing, from a normal Tuesday. It was endlessly repeating my feelings and memories, picking them apart and mixing them together, to try to find any reason for me to feel like this. And all I could do was watch it, dissecting these moments of my life like they were biology-class frogs, turning them inside-out, crushing innards and bone and flesh together into something much worse than reality.
So with all of that going on in the background, I had to figure out what the fuck was actually wrong with me. From everything I was reading, my headaches were different from a lot of other migraines. Specifically, other migraines didn’t last for continuous weeks - they generally stopped after 72 hours. Since the initial headache happened in tandem with a sinus infection, I contacted an allergist to see if there was any link between the headaches and my sinuses. There wasn’t, and he politely told me that some people develop migraines in their late 20’s, and that’s probably what was happening to me. He referred me to a neurologist, and recommended I start keeping a symptom journal to see if I could detect any triggers for my headaches, like diet or bad sleep.
I received a lot of bad advice over the course of this journey, but credit where credit’s due - keeping that journal changed everything.
After a few months of keeping the journal (it takes a long time to get into a neurologist these days) I started seeing a pattern. I had two weeks of bad headache time, and two weeks of less-bad headache time, and then the cycle would repeat. I talked to my family, and heard that we had a history of headaches around our menstrual cycles. I had also started period tracking as part of my symptom journal, because I could still tell when I was ovulating even with the IUD. When I compared the pattern of the headache with my period, the headaches always happened when I was around the follicular phase of my cycle, when my estrogen/progesterone were at their lowest, and the headaches would end when I ovulated.
I also came across a condition called PMDD while I was researching hormonal headaches. Premenstrual Dysphoric Disorder is a form of severe, debilitating PMS, which causes intense mood swings, anxiety, paranoia, conflict with others, depression, and suicidal thoughts. It also causes a lot of physical symptoms, like changes in vision, decreased coordination, and joint pain. For most people, the symptoms are worst during the follicular and luteal phases of your menstrual cycle, when my estrogen/progesterone are lowest.
This is when everything clicked into place, and all the red thread on my conspiracy board finally connected. Remember my IUD? This is where she becomes important.
Birth control pills work (in very simplified terms) by providing the body with a constant level of estrogen/progesterone, which makes our lizard brains think that we’ve already ovulated, and don’t need to repeat the cycle. These hormones affect the whole body. Hormonal IUD’s work by manipulating the hormones in your cervix to create a thicker/stronger mucus layer, preventing pregnancy by physically blocking the sperm from reaching your egg. Because of their more limited area of effect, IUD’s have less impact on your whole body, and allow for more natural fluctuations in your hormone levels. And apparently, my system cannot handle the natural fluctuation of my hormone levels. It turned out that multiple members of my family have had really intense menstrual symptoms, and possibly could have been diagnosed with PMDD if that diagnosis had existed at the time. But the weird thing about family medical histories is that sometimes people never mention that stuff to you until you start experiencing the same thing. I hadn’t realized I had this too, because I was on the pill and my hormone levels had been very stable. But, when I switched to an IUD and those levels began fluctuating, and boy howdy did they not stop. Every cycle wore away at me bit by bit, depleting my estrogen and my body’s other resources. And even then, it wasn’t until 18 months after I made the birth control change that it became evident that something was wrong.
These dots all connected four-ish days before my neurologist appointment. I went into this appointment with frenzied eyes, my journal, PMDD cycle diagrams, color-coded calendars of what days I had what symptoms, and all the other info I had collected about what was happening to me and why it might be happening. The doctor glanced at them and very politely told me that he could see where I was coming from, but he didn’t work with hormonal migraines, and recommended I talk to my OBGYN. He too told me that some people develop migraines in their late 20’s, and that’s probably what was happening to me. Thankfully I was able to see my OB much sooner, and she agreed that my theory made since, and recommended that I try going back on the pill again. Knowing that hormonal changes tend to be slow, I steeled myself for a few more months of bad symptoms before the hormones took effect.
I started feeling better after a week. The intense, ungrounded anger/sadness/anxiety clouds that had been swirling around me broke and dissipated that fast. And the headaches cleared up surprisingly quickly too. I stopped having the two-week headaches as soon as I started taking the pill again. For the first full month, I was still prone to getting headaches, but they rarely escalated to migraines, and I never had a day where I had one sun-up to sun-down. The next month, there were only a few days I had a headache at all, and I could just take ibuprofen to get them to go away. I’m currently in the fifth month, and my headaches are basically gone. A little while ago, I was getting ready to go to sleep and told Alex, “hey, I feel normal” and we both just stared at each other in amazement. That was the first time I’d said that in almost a full year.
Granted, I’ve had a lot of non-headache stuff I still had to deal with in my body over the course of this spring. There are, of course, side effects from starting any new birth control. But those side effects were so minor compared to what I had gone through with the IUD that they barely registered. The main one that sticks out to me is that my vision got blurry for three straight days about a month after I got back on the pill. Because estrogen affects the shape of your corneas! Who knew!!
The severe side effects mostly came from the meds I took to manage my headaches. Anti-inflammatories were the single thing that worked best for me, way more so than migraine meds, so I was on prescription-strength Aleve for four months straight when the headaches were at their worst. I took 500mg twice a day every day, which you are not supposed to do, but if I didn’t, the headaches would start six hours later and they would not stop. And you know how it says on all NSAID bottles that they can give you stomach ulcers? Well guess what happened.
Stomach ulcers are not fun, and I was in denial that mine was a big deal for a long time, because I really wanted to be done with dealing with major health complications. I really didn’t want to go to the doctor about it, so I ended up healing it on my own (don’t do that kids) It took three months and a lot of coconut water to clear it up (because coconut water can reduce inflammation in your intestinal lining and make your stomach less acidic so the ulcer can heal faster! Who knew!!) There was a point in mid-May where I thought the ulcer was getting worse, so I went to a GI doctor who informed me that the issue was not my stomach, but was my gallbladder! Another fun thing I know now is that big changes in your estrogen levels can affect the way your body processes cholesterol, which can cause growths/pain/blockage in your gallbladder. About one in ten people who get pregnant also develop gallbladder issues! This can also happen when you start a new birth control! Who knew!! Good news though- my stomach has healed and my gallbladder is also (mostly) fine.
I am actually mostly fine, for the first time in a long time. I feel like myself again.
I want to share this story because I don’t think I can be the only person on earth who’s having this issue. Migraines are complicated, and hormones are complicated, and a lot of information about the effects of birth control isn’t shared openly, even by medical professionals. I didn’t know PMDD existed before I had to deal with these headaches, much less that I probably have it. I didn’t know that I had these intense hormone fluctuations, and that an IUD wouldn’t be as good of a fit for me as the pill. I really shudder to think what I would be going through if I had not realized that my migraines were connected to my menstrual cycle. If I’d listened to the doctors who told me it was “normal to get migraines in your late 20’s” and followed what they’d prescribed, my headaches would probably still be getting worse, my mood becoming more and more unstable, and the underlying cause of my problems would still be grinding away within me.
But this isn’t to say there’s anything wrong with IUD’s - they’re an amazing tool, and don’t affect the majority of people the way they affected me. But I cannot recommend strongly enough that if you are someone who has periods, or if you are starting a new birth control or other hormonal treatment, that you track your cycles and keep a symptom journal. Also, maybe try mediating. I have never been more grateful that I had a regular meditation practice than during this time. I started meditating six years ago (because my therapist told me to, and she was right) and my practice helped me connect with how I feel at my core, separate from my thoughts and emotions. That was a really important guiding light for me this winter, when my thoughts and emotions were so out of touch with reality.
Hormones affect our bodies in profound ways, and those patterns aren’t always detectable in the short term. They also affect our moods a lot, and having a method to see when your moods are disregulated, plus having hard data that you’ve collected over time ready to go can help you communicate your needs even when your mind/emotion are being impacted.
I also want to thank Alex, my friends, and my family for helping me so much over the last year. I feel like I became a different person for a while, and y’all had a lot of reasons to not like her. I’m sorry for being absent from your lives, or lashing out at you when I was present. I cannot express my gratitude enough to all of you who took care of me, gave me space to flail, or cheered me up when I was feeling down.
And thank you so much for reading. If you are feeling like you may be having a similar experience, feel free to reach out. Being able to talk about what I was experiencing was what got me through the last year, and I am happy to pay that forward to you.
<3 Cassie
Helpful links/articles-
Here’s where I got my symptom journal! These are so well designed and easy to use - https://www.etsy.com/shop/SpoonCultureShop
Low Serotonin/Estrogen Triggering Migraines: https://www.hopkinsmedicine.org/health/conditions-and-diseases/headache/how-a-migraine-happens
About PMDD: https://www.hopkinsmedicine.org/health/conditions-and-diseases/premenstrual-dysphoric-disorder-pmdd
Here are my symptoms that, in retrospect, were early signals that I was dealing with low estrogen levels/severe hormonal fluctuations-
Hair thinning (like, the hairs themselves were thinner and more fragile) and losing luster
Changes in vision: for me, noticing my vision would become very blurry for a few days, then reset to normal
Change in sex drive
Moods becoming more extreme and intense
Here is a condensed list of the symptoms I experienced when my hormones were extremely disregulated-
Extended headaches, lasting days/weeks at a time
Vision blurriness, that would fluctuate in severity
Sensitivity to light, sound, and smell
Constant metallic/musky taste in mouth
Hunger triggering headaches
Neck pain/stiffness
Joint pain
Executive dysfunction + inability to focus
Coordination worsening
Dysphoric Depression
Severe Anxiety