And it has been one hell of a ride.
It was a little before my 21st birthday, and I know what the trigger was, but at the time, we didn't know what was going on. My parents, an ICU nurse and an ER nurse, both with 20 years experience a piece, were at a loss. A 20-year-old with sudden-onset neurological symptoms with no prior history, the only family history of non-trauma related neurological disorder being my paternal great-grandfather's fatal aneurysm when he was 60 years old, and the symptomatic development over the course of 12 hours? Things were scary, at least for my parents. I was unknowingly [but noticing and verbalizing that I wasn't afraid] exhibting the la belle indifference, a phenomena with CD that describes the patient being unconcerned with what would be symptoms of a potentially life-threatening illness. This is found in patients with episodes triggered by psychological triggers [not all episodes are triggered psychologically; I've had a physiologically triggered episode]. First episode symptoms included right [dominant] side dysfunction and weakness, a drop in the right leg, a severe stutter (with no prior history of stuttering), tremors (though particularly severe in the right hand), localized headaches to the right side, and severe cognitive deficits. MRI/CT/Chest X-Ray all came out normal, and the episode only lasted about 10 days. Between the first and second episodes, there were some lingering, less intrusive symptoms, but it was manageable.
Fast forward to June 23rd, 2016: I'd been tachycardic since January of 2016. They put me on 60mg Propranonol extended released (kind of a high dosage) as a non-cardiac patient to treat the tachycardia that they figured was related to anxiety. It dropped my heart rate from 120 beats/minute to 74 beats/minute in the span of about nine hours. Here's where the physiological episode began. My body was like "WHAT. NO. WHAT DID YOU DO?! STOP. NO. NO. I DIDN'T SIGN UP FOR THIS." This episode included all of the first episode symptoms, more severe and:
extreme weakness in the right arm, feeling like things are crawling on my legs, random pin-like sensations on different parts of my body, worsening of the symptoms with heat exposure, extreme weakness/moderate pain in back muscles, and an "on-off" neurological phenomena (stutter when I speak, but I can sing a song that I know clearly).
When I'd sit up straight to maintain posture, my whole torso would shake violently and my head would bob but the tremors in my hands stop. I'd lost the biological survival signal that said "eat or you're going to die" and just generally stopped noticing "hey, you need to drink something; you're dehydrated". I had to set reminders and post notes to remind myself. I was dizzy, my right foot started to turn inward when I walked, the bottoms of my feet would tingle to the point of burning, and it didn't take a whole lot for my legs or hands to fall asleep or get that "pin" feeling. My muscles would randomly twitch intermittently, my balance was awful. I was “losing” chunks of time, had blank spots in my memory, as if someone had ripped the page from a book.
I may have had a seizure once or twice, but not the tonic/clonic seizures. I'd go partially catatonic. I'd stop in the middle of what I was doing. Just stop. I couldn't move. I'd recognize someone was speaking to me, but I couldn't respond. I had trouble processing what they were saying to me. I lasted about a minute, a minute and a half, but information processing was still difficult. I had trouble understanding what people were saying to me--piecing together their words to form the sentences.
The episode last from 06/23/16-08/26/16. I marked the end with the dissipation of the stutter; however, I still have problems eating and staying hydrated. I still have an occasional stumbling over words. My memory is worse than it was before with the meds.
My advice to anyone with CD: Be. Your. Own. Advocate. Especially if you have other co-morbid mental health conditions like I do. When I saw doctors, they saw my medication list and health history and blew me off because I had a psychiatric history. They just said "Conversion Disorder" and walked out. The neurologist did a band-aid procedure, a cervical MRI, specifically saying "You don't have to do this, but..." just to say he did something while completely ignoring me. He missed the grade I sponlolysthesis that was caught during a CT looking for more kidney stones. That accounts for some symptoms, but unfortunately, I still have CD.
Don't let doctors treat you like dirt because you have a history of mental illness, or they can't find anything. Make SURE that there is nothing physically there. Make your needs as a patient clear. Don't be another statistic of "well, I ended up with x disorder because the docs missed x". ...Or even cases of patients with mental health illnesses dying of treatable physical health disorders dying because they were blown off by doctors for their psych histories.
I'm still out of work, looking for it. These episodes will knock you down hard, but do not let them keep you down. I'm back in school with the new semester, doing all right. Little tight on money, but hopefully, working again soon, that won't be an issue. There is hope. Psychotherapy, medication, any sort of physical therapy needed for physical movement disorders associated with the CD episode, speech therapy. Get it done. It's going to kick you while you're down, but stand right back up and punch it in the throat to show it that you're in control.
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