The Terrifying World of Hemiplegic Migraine
After a scuba diving accident in 1999, I developed what neurologists called “basilar-type migraine,” a migraine with aura that included neurological symptoms like profound confusion, disorientation, vertigo, periods of short term memory loss, and the like.
To be brief, medications, vaccinations, caffiene, chocolate, hormonal changes, and dramatic weather changes were triggers. On November 7th, 2010, I woke up in what I thought was the worst experience of my life. Profound weakness and numbness on the entire right side of my body. I was probably, oh 85% paralyzed. I couldn’t walk, life my head, or move my arm. My face drooped, my mouth fell open and I drooled everywhere. I couldn’t speak although I could form words in my head. I was so confused I didn’t make any sense. I was hospitalized for several days and tested for stroke and heart problems. Nothing. My menstral cycle started later that day.
In the following weeks, I had similar attacks every day. I was eventually diagnosed with hemiplegic migraine. It was difficult to diagnose as I only have moderate headpain that follows the aura, although it does come with extreme sensitivity to light and sound. I was given VERAPAMIL (a calcium channel blocker) which reduced the severity of my symptoms dramatically. Unfortunately, it has been over six months and I have attacks (albiet “quieter” attacks) about 9 days out of 10 with a debilitating spike around the time of ovulation and menstruation. I will be bedridden and/or in a wheelchair during that time. It can take several days to recover back to “baseline” from a bad attack. Symptoms like nystagmus, tinnitis, and vertigo can be debilitating. After two months, I developed auditory nerve damage from repeated attacks. I had been a 43 year old student prepping for grad student and tutoring algebra students at university when I became disabled. My academic and teaching career ended on November 7.
What the future has in store for me, I just don’t know. I have been hospitalized at Mayo Clinic Hospital, Scottsdale, and still, no improvement. What my future has in store for me, I just cannot say.
As this information is helpful to others, I am including it here.
CURRENT TREATMENT: Verapamil (80mg 3x/day), Riboflavin (200mg 2x/day), Magnesium Citrate Solution (300-400mg 2x/day), Ativan (as needed when I “can’t take it any more”), Compazine/Benedryl/Ativan cocktail to abort severe attacks either via IV in the ER or, if I can swallow, I have a script.
I am going to try other treatments but I am only allowed to introduce one at a time for 8 weeks. This way, my doctors and I know what side effects come from what and we give the treatment a fair chance to work. It’s a process. Meh.
SYMPTOMS: Aura: right-sided hemiperisis, ataxia, aphasia, confusion, disorientation, vertigo, nystagmus, anxiety. Headache: moderate pain on both sides (feels like intense pressure), sensitivity to light and sound, tinnitis (ringing in the ears).
I HAVE EXPERIENCED: After multiple cyclical attacks, not knowing where I was for nearly ten minutes which was terrifying. I have fallen during attacks of hemiplegia and laid in my own urine for 45 minutes until I could move again. I have tinnitis so loud that I now play music in my house 24 hours a day to drown out the noise. Both televisions (upstairs and down) are consistently tuned to the digital new age music station. All lightbulbs in my house have been replaced with low wattage and fixtures only contain one bulb instead of three. NO miniblinds or other light splitting things that cause increased vertigo or pain. Wheelchair, crutches on both floors of the house and grab bars installed. Changed my wardrobe to very big clothes because I’m in bed a lot and I don’t like the feeling of tight clothes clinging to my numb skin. Did I mention I have a 34cm blood clot in my left arm and a small one in my right because my delicate vascular system just can’t handle IVs or even blood pressure cuffs? Ahhhh, my life with migraines. I often ask the universe; “gee, why can’t I just vomit like everybody else?”