- CASE FILE
Basically, my body acts like it’s having a stroke nearly daily. Constant neurological symptoms and doctor after doctor has no idea why.
ABOUT THIS CASE FILE
I’ve had “odd” symptoms since childhood. I can’t burp, had tonic seizure like episodes during adolescence that had no proof; one side of my body would seize up, my face would contort, my body would go rigid and I would often fall. It was so embarrassing as a kid and I tried to hide it. Doctors dismissed it. I learned to control it with age and it seemed to get better. Also developed migraine with aura during that time.
March, 2018: I had a migraine at work. I was almost done and my right side started going numb. Called my husband and he heard my speech slurring. He picked me up and rushed me to the hospital. Within 30 minutes, I was in a helicopter to a trauma center and TPA was administered. All tests showed no stroke symptoms, but I was paralyzed on my right side, lost speech, confusion, severe head pain. The hospital ran tests and they showed nothing. Symptoms resolved within a day and I was diagnosed with Hemiplegic Migraine.
One of the head neurologists at ECU referred me to a big headache specialist, Dr. Kahn. He’s the founder of a headache institute. He tried to treat me with no luck. In the meantime, the episodes are occurring nearly daily. Triggers are similar to those of migraine: lights, sounds, foods, sleep, weather, etc. However, many times, my headache will be minimal with all of the neurological symptoms (coordination loss, aphasia, vertigo, paralysis, confusion, lapses in memory, tremors, seizure like activity....the list is incredibly long). The episodes vary in intensity and duration. It can last anywhere from an hour to days. Over the last year, they have intensified and become much scarier. I have also developed frequent gastroparesis that is becoming really hard to keep under control. My heart rate and blood pressure also tend to spike from on extreme to another when the episodes are about to happen or happening. HR will go from 40 to 150 for extended amounts of time. Blood pressure will drop to 85/45 or spike to 150/105 (these are average). My normal resting HR is low 70s and BP is 110/70.
I have been on migraine meds, beta blockers, seizure meds, antidepressants, steroids, anti inflammatory meds, antihistamines....and many vitamins and supplements. I’ve changed my diet, tried to avoid triggers, and documented. I have had MRIs, an EEG, CT scans. Countless ER visits for worsening of symptoms and stroke checks. Nothing seems to help. I am desperate for answers. My entire life is being affected. I have gone from an active, fun loving person to a recluse. I am at risk for losing my career of almost 20 years. I need help.
I’ve done a lot of research on my diagnosis. There isn’t much to research, as there is very little known as to why or what is actually happening. I have a really hard time accepting not knowing what is happening to me. I am convinced that there has to be something causing this. I truly feel like this will end up completely disabling me, as the symptoms are taking longer and longer for my body to recover from. I have chronic weakness, coordination, and cognitive impairment. Please, please help me figure this out.