Guest blog by Dr. Jennifer Mayes
In 2008, one day while I was teaching, I walked across the cafeteria at school and noticed that my vision seemed blurry. I figured I was coming down with something, and I honestly decided to ignore it. The next day, while driving my dog to the vet for yearly shots, I noticed it was raining so hard that I could not see out of the windshield. I rolled down my window to discover that it was a clear day – my vision was definitely not okay. During this time, I was also experiencing some of the most severe headaches I had ever encountered in my life. These headaches and this “not raining” moment convinced me to see a doctor. My internist took one look in my eyes and sent me straight to the Optometrist.
The Optometrist took photos and discovered that I had a Papilledema in both eyes. According to Harvard Medical School (2021), “Papilledema is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure” (Para 1). I was sent to the Emergency Room for an MRI. I was diagnosed with Pseudotumor Cerebri, or Idiopathic Intracranial Hypertension (IIH). Essentially, my body was mimicking a brain tumor when none was present, and the amount of spinal fluid was increasing in my skull to the point of pushing on my optic nerves and affecting my vision. I cannot begin to explain the correlating head pain that results from this condition.
I did almost completely lose my vision, and my doctors were not sure it would return. 11 Spinal Taps, or Lumbar Punctures, later, it did. At the time of diagnosis, I was at my heaviest, 269 pounds, and my doctors were consistently explaining that this condition resulted from me being overweight. I will add, however, that I was also taking Birth Control to control PCOS for nearly five or six years prior to this. I was also on oral steroids to combat allergies of multiple kinds, and steroids were also part of the numerous medications prescribed to me for my IIH. While I appreciated that the doctors wished me to lose weight, and I wanted to as well, my gynecologist at the time expressed to me that there had been some possible links discussed between estrogen-based birth control (and steroids) with IIH. She suggested that I switch to an IUD that was Progestin-based.
This was in 2008. I did follow my GYN’s advice, but there have since been links to that form of birth control, as well (but for the record, I had no further issues – I did lose weight, and I have avoided Estrogen and Steroids ever since). And I want to make it very clear that while a correlation between the two does not suggest a causal relationship, there have been enough red flags out there for me to believe that I made the right choice. In fact, there seem to be very conflicting studies regarding this possible link. There have also been numerous class action lawsuits regarding IIH and birth control. A quick Google search will bring up many attorney sites posting information about the possible link and the history of these cases. And for transparency, I used one type of birth control associated with these lawsuits prior to my diagnosis, but I then used another big one associated with these lawsuits after my diagnosis, and I did well with that one.
Many medical websites list birth control as a potential link, such as found on University Hospitals (n.d.). Some studies of interest that may support a possible link include Chan (2006), Reuben, et al. (2017), Etminan (2015), and Etminan (2020). But other studies such as one from 2019, states, “OCP and other hormonal contraceptives were not significantly associated with a higher incidence of IIH, arguing against the need for women with IIH to discontinue their use” (Kilgore, 2019).
Certainly, a question that arises is, is it the actual birth control associated with IIH, or is it the side effects of BC (like fluid retention) or drug interactions that may actually be the more offending elements? The answer to this, while possibly still unconfirmed, is irrelevant to my current choice of avoiding anything that could lead to another spinal tap. Gaining weight again could also, theoretically, lead to issues, and birth control has long been accused (anecdotally) of promoting weight gain in women. While the research and anecdotal evidence may be at odds, the key, I believe, is to know there *could be* something here, and consider discussing this with your doctor if you are at an elevated risk for IIH, which according to Avisar et al. (2012) a link has been established between PCOS and IIH. The Mayo Clinic also states PCOS is linked to IIh (Mayo Clinic, n.d.).
Thus, before deciding what is the best choice for you, discuss this with your doctors, and if you are at a higher risk for IIH, looking at which birth control to use may also be worth discussing with your doctor. While I cannot say what was the actual cause of mine, I can say that keeping my weight down, along with avoiding steroids and certain birth control, seems to have kept me in remission.
Dr. Jennifer Mayes, Ed. D., is a professor of English at a community college in Tennessee. She began her journey with PCOS at a very young age. Besides being an advocate for health and continuing to research and live with PCOS, she also has a YouTube channel, Magical Muses & Monthly Musings, dedicated to her love for makeup and skincare supportive of a PCOS-friendly lifestyle. She documents her journey with health on her Instagram, jenniferhealthwarrior, and she and her husband, Alex, love to travel and explore new cultures and foods that broaden her understanding of what living with PCOS really means for women everywhere.
Avisar, I., Gaton, D. D., Dania, H., & Stiebel-Kalish, H. (2012). The prevalence of polycystic ovary syndrome in women with idiopathic intracranial hypertension. Scientifica, 2012, 708042. https://doi.org/10.6064/2012/708042
Chan J. W. (2006). Idiopathic intracranial hypertension associated with depot medroxyprogesterone. Eye (London, England), 20(12), 1396–1397. https://doi.org/10.1038/sj.eye.6702245
Etminan, M., Khosrow-Khavar, F., Sodhi, M., Carleton, B., Magee, L. A., Tremlett, H., Kezouh, A., & Sheldon, C. (2020). Pseudotumor cerebri syndrome with different types of hormonal contraceptives in women of child-bearing age. European Journal of Neurology, 27(12), 2625–2629. https://doi.org/10.1111/ene.14480
Etminan, M., Luo, H., & Gustafson, P. (2015). Risk of intracranial hypertension with intrauterine levonorgestrel. Therapeutic Advances in Drug Safety, 6(3), 110–113. https://doi.org/10.1177/2042098615588084
Harvard Medical School (2021, Aug 24). Optic nerve swelling (Papilledema). Harvard Health Publishing https://www.health.harvard.edu/a_to_z/optic-nerve-swelling-papilledema-a-to-z
Kilgore, K. P., Lee, M. S., Leavitt, J. A., Frank, R. D., McClelland, C. M., & Chen, J. J. (2019). A population-based, case-control evaluation of the association between hormonal contraceptives and idiopathic intracranial hypertension. American Journal of Ophthalmology, 197, 74-79. https://doi.org/10.1016/j.ajo.2018.09.014
Mayo Clinic (n.d.). Pseudotumor cerebri (idiopathic intracranial hypertension). https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/symptoms-causes/syc-20354031
Reuben M. Valenzuela, Ruju Rai, Brian H. Kirk, Jessica N. Sanders, Subhashree Sundar, Steffen Hamann, Judith E. A. Warner, Kathleen B. Digre, Alison V. Crum, Kirtly P. Jones & Bradley J. Katz (2017) An Estimation of the Risk of Pseudotumor Cerebri among Users of the Levonorgestrel Intrauterine Device, Neuro-Ophthalmology, 41:4, 192-197. https://doi.org/10.1080/01658107.2017.1304425
University Hospitals (n.d.). Idiopathic intracranial hypertension.