6 years ago in NYC I was at work and suddenly felt like my brain was shriveling. I held my head in the palm of hands trying to understand what was happening to me. I wanted to run to the ER but making a decision was impossible and confusion was abundant. It was not the first time I had experienced this, but in this moment I thought that something physiologically was happening to my brain. I imagined my brain a dry sponge impervious to logic. I felt my brain pulling away from the walls of my skull and in between my ears was the incessant sound of the tearing of fabric. I could feel the pull and tug in between my popping ears and my mouth-dry. In an act of pure desperation and fear of dying, I hopped in a cab to the nearest ER.
Upon my arrival curious attendants in blue scrubs were at first eager to assist me, I notice they pulled back their shoulders as they became skeptical of my intensions once I rattled off my accounts. I was asked if I had been drinking, if I were on narcotics or if I were on medications of any kind. Discouraged to share any more information, as it seemed to be a discrediting me. I fought back the tears as the words spilled from my lips in a hushed tone, “I am sober. I don’t use drugs and I am on Prozac for my PMDD.”
No One asked.
I offered the explanation.
It fell on deaf ears.
The doctor proceeded to scan my eyes, my blood pressure and of course listen to my breathing. I left undiagnosed. I was told to go home to rest and to call my primary doctor. I left the ER with my head hung low. I walked away feeling like i had exposed myself to be judged and ostricized.
I had already done the research. My gynecologist said I was premenopausal as I had a hemorrhaging cycle that would last at least 14 days. My primary doctor who would offer me b12 shots to help with my fatigue from bleeding for half the month had me tested for numerous things from CT Scans to Hormonal Imbalance testing — the result of which she proscribed Prozac for my PMDD and suggested that I see a nutritionist. Gluten free diets were trending and it was suggested that I consider becoming a vegan and stay away from processed foods. Finally I met with a Gastroenterologist as I was also diagnosed with IBS or Crohn’s Disease. Somewhere in the middle of all of these doctors and screenings I was seen by an internist who at first glance, saw my mouth curved downward on the right as it does when I am in PMDD-she visually diagnosed me with Parkinson’s. That was the moment my life had been reduced to a less than shitty hand to deal with in my mid thirties. (Insert the onset of suicidal thoughts here.)
After all the testing it was revealed that I didn’t have Crohn’s and not only did I have IBS, I had also developed allergies to many things from dairy to watermelon. The Prozac and Lo Estrin birth control became part of my daily survival plan until I had to stop the Prozac because I was afraid of what I would do to myself. I had begun to entertain suicidal scenarios. I changed my diet and exercised as often as I could get on a treadmil to run away from my mind…however I continued to have the same symptoms feeling as though my brain was shrinking and I began to isolate around these times as there was no relief to be sought from anyone. No one knew about #PMDD and I thought I was loosing my mind as it was suggested that I may have been Bi-Polar.
I’d like to wrap this part of my story in pretty little bow that offers hope and a solution, but this was the very beginning of the road of painful travels for me on my journey in PMDD and becoming #decidedlySane.
I do however continue to wonder if anyone else ever experiences this brain shrinking feeling in PMDD. That’s a question that I’d like to have an answer to someday.
I share these details because I don’t want anyone to suffer alone as I did. There is a wealth of information to be found today on the internet as there are digital platforms and there is the NAPMDD. An amazing resource and advocate for those who are suffering. This advocacy also offers a support group for partners of the afflicted. There is strength in numbers let us all embark on the journey to becoming #decidelySane