Apparently...Dysautonomia is merely the tip of the iceberg.
As we excavate each layer of my health, more and more unique and unusual issues arise. Remember that blog post, “The Tremor Attack of Birthday Eve”? Well, little did I know that incident would mark the beginning of a whole new chapter of complications. Today, I am sharing with you my neurological journey and breaking down where neurologists went wrong, what’s going on, where I go from here, and why it matters.
On September 12, I sat in class at Mira Costa Community College trying to push through the discomfort of my regular dysautonomia symptoms when something unusual happened. My pen struck my notebook with a shaky hand as my head began to pound me into a fog of confusion. With all of my might, I tried to transcribe the notes on the board onto my paper, but my brain was glitching. The kindergarten-like handwriting and random lines on my notebook were suppose to be notes about sound wave theory. Wow, I am really loosing it. Convulsions, tics and tremors overtook my body. No one asked me if I was okay, the girl next to me lent me a puzzled glance. I invisibly convulsed in my cold plastic chair, fearing for my life. Am I having a seizure? Is this Parkinsons? Is this that one fatal form of dysautonomia with movement disorders? Five hours of convulsions later, an ER nurse shot me with a huge needle full of Ativan. Ativan is a highly addictive and power benzodiazepine that is used to treat seizures. I was out. I had an EEG and a Cat Scan done, both normal. They told me to go home. Small lesson here: just ask if someone doesn't look okay. Especially if they are convulsing in a classroom.
The next day was my birthday. I got to class around 3 and it happened again. Five minutes into class, I ran out of the room as a my professor’s condescending remark, "Oh, leaving already?" chased me out the door. Little did she know that I wasn’t some punk trying to ditch class, but I was about to have a convulsion episode. Straight to the ER again. More Ativan and an MRI later, nothing. I saw two neurologists, they told me it was probably not neurological and I should seek psychiatric care, but they had never seen anything like it before. I walked out of the ER with no answers and a bottle of Ativan. Somehow uncertainty defaults to psychiatry.
A month and half has gone by, and these episodes occur regularly. Sometimes every day. With these episodes I sometime slur my speech, and my brain fog has significantly worsened since September. I often find myself unable to focus, concentrate, and process information. The convulsions happen when I am watching TV, completely calm, stressed out, during a nap, they happened during every type of mood. I tried to trace them to stress, certain foods, dehydration, but I just can’t find a pattern. We saw another Neurologist at UCSD who refused to refill my prescription for Ativan, leaving me this voicemail, “I don’t see any evidence of neurologic cause of her tremors… Ativan is an incredibly habit forming substance and I believe that Sydney’s tremors are due to anxiety. She needs to be on an antidepressant and be managed by psychiatry for uncontrolled anxiety… There is no neurologic reason for me to refill the Ativan.” She refused to explore any deeper. I’m already on antidepressants and I have no psychiatric problems with anxiety, just some situational depression that I am managing and this neurologist was suggesting my psychiatrist prescribe me something like Xanax or Adderall. My psychiatrist refused to medicate me for the anxiety I don’t have and sent me back to neurology.
This ping pong between neurology and psychiatry is all too common, especially when young women are met with unusual health problems. Before you tell someone they are crazy, no stone should be left unturned. The problem doesn't lie within a psychiatric diagnosis as there is no shame in having anxiety or any psychiatric disorder. Psychiatric problems are due to chemical imbalances, factors out of one's control and they are equally as valid. However, the delivery and manner of how psychiatry is talked about and devalued in medicine implies that if my problems are not neurological, I am "crazy." Especially when I know in my gut that is isn't stemming from anxiety, and I clearly relay that message to doctors. It is unfair to blame every strange behavior on anxiety just because someone is a young woman like myself. It puts them at risks to be put on serious medications that are unnecessary and cause more problems. I have been stigmatized because of my age and gender over and over again, however, my problems are real, they are medical and neurological, and they need to be validated.
And today, they finally were. Fourth time's a charm right? Some people with POTS have tremors because of their high heart rates, but I have non-dysautonomia related neurological issues. My new neurologist, who is superb, took one look at a video of me convulsing and goes, “ I have never seen that before, but it is definitely not psychiatric. That is 100% neurological”
We have two going theories right now. First one is that I have a rare neurological genetic mutation called Dopa-Responsive Dystonia. This is often referred to as “childhood Parkinson’s” and is often misdiagnosed as Cerebral Palsy. Dopa-Responsive Dystonia is caused by an inadequate supply of dopamine to the brain resulting in Parkinsonian like symptoms. However, unlike Parkinson’s and Cerebral Palsy, it can be managed by taking L-Dopa, and does not kill you. My case would be unusual given this mostly begins in children ages 5-8, but my doctor has a theory that this gene mutation was on the same strand as my Dysautonomia, so when I had a concussion in February and my Dysautonomia set in, this came with it.
Second theory is that I am having a frontal lobe seizure. I am conscious when my convulsions happen, so every neurologist before discounted the idea of seizures, but if just one area of the brain is seizing, it is very possible to be awake. Although I have had an EEG done, which tests for seizes, I was too high on Ativan to get an accurate read. The test for this is a 24 hour EEG in which you hope an episode occurs. He also mentioned that my blood looks messed up, and that he thinks I have a few more gene mutations. I have fluctuating anemia, I am not producing enough red blood cells, and my platelets are low, so we are seeing a Hematologist. “There is a crap ton wrong with you”, he told me. 16 tubes of blood were taken out of me today which hopefully contain answers to these questions.
You’d think I would be terrified at this news, but I am stoked. Not knowing is the worst part. 8 months into this I wish I still wasn’t being told that it is all in my head, but unfortunately this is a default for uncertainty in the medical world. The opportunity for discovery should be embraced in the face of "I don't know." A message to neurologists: You never know what a person has going on until you have explored every corner of possibility. I understand some psychiatric problems present themselves in neurologic ways, but telling young people ‘it’s all in their head’ leaves a profound effect on their trust in doctors and in themselves. Don’t be so quick to jump to conclusions.