Hormones and migraine are two of the most interconnected and talked about topics when it comes to managing and treating migraine.
When I look at the swath of topics I’ve written about over the years that I’ve spent exploring my migraine condition and the different battles I’ve had to face, menstrual migraine has actually never come up.
The truth of it is, when I was in high school and relocated to a new town my Sophomore Year I began being treated for migraine. My pediatrician introduced me to birth control and gave me the explanation for the first time about how people who have migraine typically should avoid estrogen-based birth controls leaving us with a few progesterone only options like the mini-pill and the Depo-Provera shot.
Within a few minutes the depo shot was in my arm as she’d decided for me this was the easiest method of prevention for my migraines as I didn’t have to remember to take a pill every day.
I was 15.
It would be another few years before I got on actually preventative meds for migraine.
I however, got to enjoy almost a decade of essentially forgetting all about hormones and periods and the complications that can come with having a regular menstrual cycle.
Although not a common experience, the depo shot was a really good match for me and my lifestyle. Other than the first few months on the shot where I experienced continuous light bleeding, I had no side effects for 8 years. My period stopped.
Towards the end of high school, mostly I remember this my senior year, I always knew when I was due for my shot because I’d get an extremely painful migraine attack if I was so much as a day over the 12 week interval. Multiple times I had to quickly be rushed in for an appointment for my shot.
But that was my only experience with the frequently alluded to menstrual migraine I’d become increasingly aware of when folks discussed migraine.
My migraines became disabling when I was 19, almost exactly 5 years ago, and I began the process for applying for disability around the time I turned 21.
The reality was the birth control solution that was sold to me at 15 hadn’t done much to keep me from getting sicker and much of why I’m writing about this now is in hopes of catching young, teenage kids who may also feel like birth control is the only management option. Or at the very least, it shouldn’t be used in isolation and maybe hold off on the depo shot until after your bones have finished growing (which isn’t when you stop getting taller I must add).
I understand that most migraine medicines are not able to be prescribed to anyone under the age of 17, but first line therapies like Topamax and other seizure meds, along with anti-depressants are technically allowed to be prescribed. I think it’s important that if migraine is becoming a large enough problem that you’d consider starting birth control for migraine prevention that you seek out a neurologist as well and can consider starting on preventative medicine too.
At the very least, this is a critical time to begin educating on medicine safety and lifestyle habits as these are accessible changes that can be started when medications aren’t an option. I didn’t learn about these until it was much too late.
At 21 as I began my disability process after 6 consecutive years of successfully being on the depo shot, I encountered my first doctor who hesitated at the length of time I’d be on the shot. Depo actually has a manufacturer’s warning to discontinue the medication after two years due to risks surrounding bone density loss and here I was, year 6 and finally getting a strange look from a doctor about how long I’d been on it.
Instead of requesting bone density scans so we could begin monitoring that and ensure that it was still safe to use the medication, the doctor shrugged and gave me my next dose.
At 22, mere months before the pandemic, my luck ran out.
I haven’t written much since this time and never actually spoke outside of my Patreon about what was happening, but in January of 2020 I suddenly started bleeding. For the first time since early high school, I had blood coming out of my body.
I went to Urgent Care and I remember the look on the check in lady’s face thinking this silly girl has come in because she got her period, until I spoke up and said “I haven’t had my period in 8 years” and they rushed me back to do an exam.
My grandmother had Cervical Cancer and at the time all I knew was that I was terrified and that I was bleeding and that the world was crashing down around me. It was a relief to learn that Cervical cancer is not hereditary.
Alas, something was not normal and even though my exam came back normal I was advised to get a gynecologist. Rapidly approaching pandemic aside, I was also preparing to move across the country so this was very bad timing to say the least.
My sister went through this exact same experience after prolonged depo use as well.
Fast forward to April, my move was postponed, the country was locked down and I couldn’t get my depo shot. All of the pharmacies were overwhelmed. I couldn’t go into a pharmacy. And the mail order medicines were hit really hard in the early days of the pandemic. I decided without much of another option that this would be as good of a time as any to discontinue the depo shot and see what my body did.
When I finally accessed care that summer, my body was in turmoil and my bone density scans were not good. I was at risk for osteopenia and couldn’t resume depo.
My gyno was really wonderful in educating me about what happens to bodies after entire organ systems have been shut down for nearly a decade and setting proper expectations for when we could reasonably expect my body to normalize.
I was experiencing thick periods, breast pain, uncomfortable bloating, inconsistent bowel movements, loss of appetite, and extreme fluctuations in my migraines with the (attempted) return of my menstrual cycle and these “periods” were long and drawn out with only short breaks between them.
Because of my general discomfort and the impact on my migraines, we decided to reintroduce progesterone in the form of the mini-pill to help dampen the side effects of coming off depo. The expectation was that it could take 6 months, but because I’d been on it for a prolonged period it could take even longer.
The mini-pill barely made a dent in my symptoms so after a month we increased my progesterone to a high dose pill that is used to suppress periods and in the treatment of other reproductive related conditions.
We waited an entire year before deciding to trial my body and migraines without a hormonal influence and see how my migraines would respond.
At the end of the first year, we repeated my bone density scan which showed minimal improvement.
It’s important to note here that patients who take the depo shot and experience bone density loss are shown to recover within two years and that it isn’t a permanent issue.
Getting an IUD
In September of 2021, I agreed with my gynecologist that a localized hormonal birth control from an implant would be the best option for me. Because the hormones with an IUD are only in the uterus they don’t have the full body effect the way oral tablets or shots do and in turn do not interact with migraine.
I was a candidate for the Kyleena, the smallest IUD on the market which is good for 5 years.
Insertion was awful, even while heavily medicated with a cervix softener, Vicodin, and a high dose ibuprofen. I will without a doubt request sedation for removal and insertion of the next one.
We stopped my high dose progesterone pill in tangent with the insertion of the Kyleena.
It takes a few months for your body to adjust so I began to track my average migraine baseline in relation to my hormonal cycles.
Prior to getting my IUD I had a truly rocky rollercoaster of a few years, so my migraines were not very consistent and I didn’t have a good baseline to go off of. But I was coming down from my fight with Lyme disease and my severe and disruptive migraine frequency had dropped to only 39% for the month of August. I was following the same pattern for the first bit of September, but mid-month got my IUD and that percentage jumped up to 53.3% that month.
For context, I track my daily migraine pain and symptoms as they relate to my functionality. At a level 7, my functionality begins to wither away, increasing to what I consider severe at 9 and 10 where I am limited to basic bodily functions, 10 being the point where the pain is so severe I cannot so much as relieve my bladder. I track month to month the amount of time I spent between levels 7 and 10 to coincide with the level of disability impact and use this as my own quality of life metric. My current goal is to get to 30% consistently as this might allow time each month to return to part time school.
Over the Fall and into the end of the year, I began experiencing side effects from the Kyleena and general “hey you have a menstrual cycle now” side effects. From the Kyleena my biggest complaint was breast tenderness that was incredibly severe. During each cycle I experienced more frequent but slightly less severe migraines, so my baseline percentage would increase but I wasn’t having as severe attacks.
Over the course of this time things leveled off from a high point of 56.9% in severe pain to 40% in severe pain at the end of December.
Having My First Consistent Menstrual Cycle
Now, we didn’t really know what to expect when it came to my menstrual cycle since I didn’t remember it from middle school at all, and bodies change. But as the Kyleena side effects leveled off and my migraine reached the baseline it had been at prior to insertion, by January I was beginning to get a good picture of what my cycle would look like.
I was having hormonal symptoms for roughly three weeks, with a two week break in between.
In collaboration with my headache specialist, we identified my menstrual migraine areas of concern. I trialed Qulipta in tangent with my cycle in hopes that we could reduce the intensity of my migraines. We also decided that it was safe to combo treat my migraine attacks with Ubrelvy + Midol to have a better chance at successfully aborting an attack since during each cycle, the migraine attacks were less responsive to standalone treatment.
At this point my migraines began to yo-yo with my hormonal cycle and would jump from 40% to 45% back down to 40% and up to 47% in severe pain, with the high percentiles being while I was on my cycle. I was miserable.
The Qulipta didn’t work for me and due to already reaching preventative limitations, and although some people with migraine are able to plan abortives around their cycle or take their preventative around their cycle, my cycle was simply too long and I had no other preventative medications available for this to be a viable treatment plan.
Migraine alone is bad enough.
But for three weeks every month, I was also battling extreme nausea, breast tenderness that interfered with things like yoga, awful bloating, and the medicine resistance meaning that I was just in absolute agony. I went almost the entire month of February without successfully treating a migraine attack.
Being at the end of the line on the headache side of things, we had to turn back to my gynecologist to attempt to get the hormones under control.
This was something we knew would be a possibility going into this experiment as it was truly a “we won’t know what role your hormones play in your migraines until we try” and the result here was that my hormones play a very large role even if preventative birth control didn’t prevent disability.
We started initially with reintroducing the mini-pill at the end of February. My doctor’s line of thinking was that because we have the Kyleena applying some local hormone, perhaps the small amount will work effectively in reducing all of my hormonal symptoms.
This had an initial positive response. I started it right as one cycle had come to an end and for those two weeks, my migraines actually improved. For the first time in years my severe migraines dropped to 29% giving some merit to the idea that birth control was offering a level of prevention prior to discontinuing it.
But things rapidly got very bad with the start of my next cycle. The medicine resistance got even worse in March and the combo therapy of medications barely scratched the surface. Notably, the medicine resistance also presented in how quickly the therapy wore off. I was needing to treat the next severe migraine attack much earlier than I was allowed and on multiple occasions began over treating just to get any semblance of relief. This is, admittedly a very bad path to begin traveling down. My severe pain – and the upper end of the spectrum not just disruptive pain, doubled this cycle as well (The overall percentage was 49.3% with 19.3% being at the higher level 8/9 pain).
However, it wasn’t just migraine that got worse. The breast tenderness ramped up as well to the point where I wasn’t sleeping at night as simply rolling over and bumping my breast shot pain through my body and took my breath away. This went on for 2 weeks.
I struggled to get ahold of my gynecologist throughout this time and received permission from my primary care doctor to resume the higher dose progesterone in place of the mini-pill to get these side effects under control.
This had rather immediate results.
Within a few days, the breast tenderness subsided. My medicine began to work again, no combo therapy required. I was able to go between 3 and 6 days without needing to treat a migraine attack – compared to needing to treat again on day 2. Obviously, I was sleeping again. All of the hormonal side effects stopped.
Over the course of the next month, my severe pain percentage leveled off at 30%.
The Medical/Safety Side of This Option
By all accounts menstrual migraine for me is a serious problem that I can successfully keep at bay with the use of higher dose hormones. However, I’m a complicated patient and this isn’t necessarily a standard approach to treatment. With my continued bone density concerns, my gynecologist also took an extensive amount of time to fully research the safety of this treatment plan.
I also conducted a bit of research and I’ll share the areas in which we came to consistent medical conclusions.
The major area of concern is bone density, to which we looked extensively into research of other medications I’m on that may have contributed beyond the depo shot, along with looking for any research that may indicate long term use of Norethindrone (the high dose progesterone) could have negative impacts on bone density.
My attention was brought to the Keppra I take as a daily preventative for migraine. There is a substantial amount of research out there on older seizure drugs that suggest they interfere with the body’s ability to absorb Vitamin D, which has an indirect impact on bone density. The research on Keppra itself is rather slim and suggestive that it might have a similar impact on absorption, but nothing here was solid.
A consulting Neurologist agreed that there was also some likelihood that other migraine abortives, like Fioricet, could have had contributing effects.
My primary care doctor pulled research on the use of Depo-Provera in adolescents. This research I believe is very important as it showed that early use of the medication while bones are still developing may actually hinder the development of adequate bone density. This, to me, is an argument to wait on using depo for migraine prevention until after adolescence. This is also where we found research that bone density recovery can take upwards of two years after discontinuation, so we are not as discouraged at my lack of progress just yet.
My gynecologist focused her research on the safety of Norethindrone and had to look at other conditions for safety recommendations as this is not something that has been researched with migraine. PCOS and Endometriosis literature have a bit more information we could work with. Most trials don’t have much information going beyond a single year. However, we were able to locate one study that followed patients for I believe 5 years on Norethindrone that demonstrated this was safe to do.
It’s important to come back to Depo-Provera research here as bone density was a very large concern and as another progesterone only treatment, researchers would have noted if bone density concerns had come up across 5 years of use. So, we concluded with all of this that the Norethindrone is safe for long term use for the management of menstrual migraine.
In addition to all of this research, we decided that although the literature isn’t perfect for my Keppra that we would change my approach to supplementing my bone health. Originally, I had been taking a calcium supplement with a small dose of Vitamin D to aid in my bone density recovery.
My Vitamin D levels hang out on the very lowest end of the spectrum at just 33ng/mL.
With this in mind, we have increased my daily levels to 4000 IU of Vitamin D, which is above the supplement dose but just below the treatment dose of 5000 IU. I’ve adjusted my Calcium as well to be a multi-vitamin of 600mg Calcium, 250 mg Magnesium, and 12.5mg of Zinc.
Some of these other vitamins are good for migraine and for general immune health so they are good additions for me anyway, but we believe this combo of supplementation may prove to be advantageous for the recovery of my bone health.
I will have another bone density test this July, which if things haven’t been improving over the last year, it may be too soon to tell if the increased supplementation will make a difference but it could give us an idea if we’re heading in the right direction.
We will also be continuing to monitor some bloodwork with the higher dose of Vitamin D to ensure it continues to be safe.
Hormones are hard and perhaps one of the most under-researched areas of migraine disease, but I believe my experience and my care plan can help contribute to how we approach treatment or open up additional research opportunities.
At this time, we are considering turning this experience into a case study, which I think would be really cool. We may even consider experimenting with other types of progesterone like combining the Nexplanon with the Kyleena and seeing if we can replicate the same kind of response, opening up treatment options for people who may not have access or success with daily pills.
But for now? We all saw that magical 30% number and the goal is to see if that can be maintained for a prolonged period of time before we could even consider moving forward with additional research.
Although all of this has been done in tangent with my care team, everything shared here is medical advice based solely on my needs and should not be taken as advice. If any of this interests you or you believe it may be a viable option for you, please consult with your doctor.