Article shared with permission from Amy Medling at PCOS Diva.
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 OptometristA trained medical profession who can examine, diagnose, and treat a majority of eye disorders..
The Optometrist took photos and discovered that I had a PapilledemaSwelling of the optic nerve that carries visual signals from the eye to the brain. 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 IdiopathicThe term idiopathic is used when there is no detectable reason for something. 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 PCOSA hormonal disorder, seen in women, that is not well understood 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.
