A few years ago I had a BIG health scare.
I had been complaining of excruciating and unexplainable headaches. Previously, I hadn’t experienced many headaches aside from my pregnancy a few years prior. Every time one would hit, I would head to my doctor’s office. And every time, they would dismiss it, telling me it was a tension or stress headache.
But it wasn’t. I had pseudotumor cerebri, or intracranial hypertension.
How was I diagnosed? See, I suffer from polycystic ovary syndrome (PCOS). And after childbirth, my symptoms felt different. While I once experienced extra weight gain and insulin resistance, I began losing weight. By the time my son was 8 weeks, I was in the midst of postpartum depression, which caused the weight to come right back. And I really struggled with the weight gain. Then the headaches began.
The doctors I saw threw various prescriptions at me for tension headaches. Then one day, I went in for my yearly eye exam at our local Pearle Vision — and everything changed. The optometrist said something wasn’t right. She asked me if I was on any birth control but ruled that out as an issue when she learned I had the Paraguard IUD, which doesn’t have hormones. I told her what was going on with my headaches.
She told me to go straight to the ER for an MRI. The nerves behind my eyes were inflamed.
Following that routine eye exam, doctors at MGH performed what is like an ultrasound of my eyes. And they quickly saw I had pseudotumor cerebri, which occurs when the pressure inside the skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it’s most common in women of childbearing age who are obese.
I dissolved into tears, unsure of what this would mean for me (though the doctors assured me and my husband I would be OK).
I saw a neurologist, who put me on meds to help get rid of the fluid. Like many medications, the benefits come at a cost — this particular prescription can cause birth defects, so I couldn’t think about getting pregnant again. I also couldn’t take any supplements, as certain vitamins can actually cause increased fluids in your body.
I also needed a spinal tap to release the fluid surrounding my brain. This meant a needle would be inserted into my spinal canal to collect the fluid — a bit similar to getting an epidural, just the opposite. They can be scary, but all I could think about was getting well for my son. So I did it, and I was down for about a day. But it was well worth it — my headaches were relieved that day.
My ongoing regimen consists of birth control, fluid retention meds, and weight loss. And I’m thrilled to say my pseudotumor cerebri has been officially dormant for the last two years!
But it’s not out of sight entirely.
One cause of this condition is from carrying extra weight my body just doesn’t want me to have. And I’ve decided to try for another pregnancy later this fall, so consulting with my team of doctors is crucial. Not knowing how much weight I’ll gain with a pregnancy means I have to keep up with my ophthalmologist, neurologist, endocrinologist, and OBGYN.
If not treated properly, this condition can cause painful headaches, nausea, double vision, ringing in the ears, back pain, and even sight loss. I am so thankful I went for an eye exam that day — otherwise, I might have never received a diagnosis.
