While researching migraines, I stumbled upon the connection between them and a bipolar diagnosis I received as a young adult. On this journey to find answers about my health a realization occurred — I have been having ocular and abdominal migraines since I was a child.
My research has helped me understand the bizarre actions of my father, whose behavior has been the topic of discussion in the family for many years. I recall hearing my parents fight through the walls as I tried to sleep at night. The next day I approached my mother and asked why they were fighting the night before. She told me my father had gambled away five hundred dollars in one night, which sounded like a lot of money, justifying the shouting I heard. As an adult I learned the true amount was five thousand dollars.
They divorced once my mother found out he had been cheating with a woman half his age. I was 12 years old when he decided to bring her into our house and attempted to convince me he would marry this woman. I still remember the feeling of deep sorrow. I didn’t understand my father’s actions, and they caused me to grow up far too quickly.
The one area I felt in control of was homework. I decided there was no need to complete this stressful task, leading my mother and teachers to grow concerned. They had an intervention of sorts with me where I felt more shamed than understood. Asking questions and making statements about my behavior made me turn further inward rather than feeling comfortable to reach out for support.
I was forced to sit in front of a therapist who uttered the words “I don’t believe you” when I attempted to explain that my dark poetry was a way of expressing myself and processing emotions after my parents divorced, as well as the move across town with extended family, being cut off from my old friends, and having to start over at a new school.
At the age of 14, I found myself in an abusive relationship with a boy a year older than me. This bond lasted until I was 20 and was a roller coaster of emotions, tears, scars, and pain.
I was not sleeping, was experiencing time out of order and found myself in an altered state in my own version of the Truman Show, believing there were cameras and mics everywhere I turned, and that strangers around me were actors.
My grandiosity showed up as needing an excessive amount of boundaries. I was shouting at my abuser, my mother, and my friends, suddenly going from a social doormat to someone who respected herself and demanded more from others around her.
The peak experience in this altered state was finding that my abuser continued to be unfaithful. I shouted at him over the phone and understandably broke up with him in a rage. A friend who heard the call remarked, “You sounded a bit manic.” His mother was diagnosed with bipolar disorder.
Throughout this experience, I engaged in behaviors that I was ashamed of for years. I see now that this altered state was an expression of the extensive abuse I suffered at the hands of the individual I called my boyfriend for six years.
An experience like an altered state can also show you who your real friends are. Looking back, I think my friends did the only thing that they thought could help — having an intervention and convincing me to voluntarily admit myself to the hospital. The psych ward was supremely unhelpful in a variety of ways. Nurses told me to my face that I was delusional. I was told to “stop pretending to fall” after I was put on Haldol, Depakote, and Zyprexa all at once.
The one helpful thing that they did was they referred me to an early intervention psychosis program in the state of Oregon. This program was instrumental in me working through the internalized stigma I had gained through messages from society and those sent by my peers, when almost none of them would speak to me following my very public altered state. To them, my abuser was the victim and I was “crazy.”
The psychiatrist at the early psychosis program, Dr. Pool, was very kind and different from other mental health providers I had encountered. His first step was slowly tapering me off of the psychiatric medication I had been placed on. Dr. Pool also did an extensive review of my medical records and diagnosed me with bipolar disorder.
Through involvement with this program and the public speaking opportunities that were provided to me, I started to find my voice as an advocate and peer support specialist. Part of this process was also coming to “accept my mental illness” and see many of my experiences through the lens of bipolar disorder.
After years of being “stable” on Lamictal and Prazosin, two providers attempted to convince me I did not have bipolar disorder and instead had ADHD. One of these providers was my now ex-nurse practitioner, Ms. Cady.
Ms. Cady tapered me off the Lamictal and Prazosin I had been on for years and placed me on more stimulant medications than I can count or name here. Stimulant medication is currently highly overprescribed — some prescriptions for medications have increased by nearly 4450% from 2020 to 2022. In the midst of an ongoing opioid crisis, we may soon find ourselves on the cusp of a stimulant crisis.
I remember mentioning to Ms. Cady that the stimulants seemed to help my symptoms, but only to a certain point. I also expressed concern that the stimulants might lead me to have another episode of psychosis, as my previous episodes of psychosis were caused by being placed on various antidepressants. Ms. Cady repeatedly reassured me that psychosis does not happen overnight, at one point saying, “Well, Vyvanse hasn’t made you psychotic yet” before increasing the dose yet again. Unfortunately, Ms. Cady was incorrect, and after trialing many stimulants and with repeated upping of doses, I found myself in yet another altered state.
Our not-so-therapeutic relationship ended when I decided to confront Ms. Cady about the host of symptoms I was experiencing. I had written an email that when drafted in a Word document had an entire page filled with physical health symptoms I was experiencing. Amongst a host of other symptoms I was not sleeping, was hardly eating, felt confused, was repeatedly getting lost or showing up late to work, and my work performance started to slip as the pressure began to build.
The blame for this was placed on myself, rather than the prescriber who willfully ignored my history of altered states and placed me on medication that I had expressed concerns about inducing a state of psychosis at multiple points during our work together.
During the confrontation I had with Ms. Cady, I was expressing the aches and pains in my body as epilepsy. I concluded that I must have epilepsy after hours of online research, which may have been getting ahead of myself. Her response at the time was to tell me I was not experiencing seizures, the experiences I was having were solely based on mental health, and if I were to keep up my behavior and not take medication for my “health anxiety” I would end up back in the hospital. I am happy to say that two months after this retraumatizing conversation I did not step foot into a psych ward. I have my husband and the support network made up of my family and psychiatric survivors to thank for that. I am also seeking out medical guidance regarding the physical symptoms that still continue despite my mental health being more stable now.
Ms. Cady, rather than approaching the conversation with curiosity, considered her role to be to “snap me back into reality.” I was able to speak with Mr. Pool after this experience and I am grateful that the early psychosis program allowed me to speak with him many years after I had graduated. After I described all of my symptoms to him, he said what I was experiencing did not sound like seizures, but instead sounded like ocular migraines. After advocating for myself with my PCP to see a neurologist, I was diagnosed with abdominal migraines. Finally, an answer for the physical ailments I have had since I was a child.
I recall speaking to my father about the auras I would see at eight years old. He responded that he experienced the same thing. In a young girl’s mind, the natural conclusion of a conversation like this is to assume it was normal and everyone sees auras. Quite a rude awakening now.
The auras I experience start in the shape of bright white and orange lights. As I blink, the shapes start to create brighter and brighter layers stacked on top of each other with every passing moment. If the auras don’t stop, I’m on a nonstop roller coaster. Nausea rises in my belly, then the pain spreads to my head. The muscles on the back of my skull tighten. I can also experience mood swings with my migraines, sometimes suddenly feeling agitated if a migraine is about to come on. I might have a sudden burst of energy or an incurable sense of fatigue.
I’m still exploring solutions. I purchased a variety of blue light-blocking sunglasses that I switch between throughout the day, attempting to find the balance between my tension and relaxation. Too much tension leads to the obvious — migraines and headaches. Too much relaxation and I can end up horizontal with massive auras. I have seen multiple providers about the migraines and am still very early on in the exploration of what might be helpful. Options given to me have been diet, keeping a migraine log to find patterns, and a host of medications that have had mixed results so far.
It has been an interesting journey attempting to figure out my migraine triggers and an explanation for the multitude of physical and mental health issues I have had throughout my entire life.
A scholarly journal from 2019 looked at psychiatric comorbidity in migraines. This was a systematic review of 178 studies and looked at the link between anxiety, depression, bipolar disorder, and PTSD among other comorbidities. Part of the article mentions that “[bipolar disorder] shows the highest heritability in the group of affective disorders, with a consistent overlap with migraine.” So in light of this information, why did I have to go on a personal investigation to finally figure out that I was having migraines? It is inevitably due to the system’s artificial divide between physical health and mental health challenges.
All of this could have been avoided with providers who stay up to date on current research and understand the overlap between mental health diagnoses and the physical health issues that may be linked to these diagnoses. This leads to the question of whether these mental health disorder labels have any merit at all.
A case study from 1993 looked at a 69-year-old man who experienced migraines with aura and experienced four episodes of psychosis in 17 years. These episodes were linked with migraine attacks that consequently led to “visual hallucination and delusions.”
So what if what is labeled as manic episodes could be prevented simply with early identification of migraines and preventative measures?
My family has a history of altered states. This culminated in a very high-profile series of events that I will not disclose here for the privacy of my family. However, family members with whom I have a close and direct relationship were labeled as “crazy” or “delusional” for coming forward with claims that they had been sexually abused by my grandfather. The claims were laced with stories that on the surface may seem absurd, but point to real traumas that occurred.
Based on my personal experiences and observations of my father who essentially abandoned me and my brother post-divorce, I can only conclude that my family was having a completely understandable reaction to the host of traumas they faced at the hands of my grandfather.
I remember asking my father lots of questions. For example, why did he have my brother and I take my mom’s last name instead of his? What happened to his dad? Why did we see Grandma all the time but not Grandpa?
At 18, my mother finally told me about my grandfather and the things that he did. It’s no wonder my dad and I were estranged for years. I think deep down he had a sense of shame for being a victim of abuse and not coming forward as his younger siblings did.
Looking back on some of the behavior he had that reflected my experiences in this most recent altered state, I realized that my father would also tell me stories and anecdotes that, looking back, did not make much sense at all.
People often ask me about the origin of my name. I believe that my dad made my name up, partially naming me after an ex-girlfriend of his. By sifting through his poetry that he left behind after his death I was able to gather that her name was of an Arabic origin that means “cloud.” As a child, my father always told me that Nybelle meant “the purple flower that blooms in the desert under the full moon.” Very poetic, but objectively false as far as I can tell.
He occasionally regaled me with other stories of his past that I absorbed as a small child and that probably seemed odd to my peers. I was labeled frequently as “the weird kid” or “teacher’s pet” due to my high intellect. Me and my brother surely inherited our sharp wit and smart mouths from our father.
My father also had aspirations of becoming rich. He often played the lottery even with very little money in his pocket. He often lamented that in our family line, we had an Italian ancestor who forfeited his family line, a family that was very rich and prestigious in Italy.
I like to think that my father, despite his faults, wanted to leave some type of legacy. The way in which he died and lived his life spoke to a deep disappointment in himself for not living up to his dreams and aspirations.
It is my hope that bringing attention to the research that has been done on migraines and the experiences labeled as ‘bipolar disorder’ — both of which are still not fully understood — will bring light and compassion to those of us who may have behaviors not yet explained.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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