My symptoms began about 6 months ago. They began with imbalance. I felt like I was
leaning or rocking, like on a ship. At times it would make me motion-sick. I began waking
up with nausea and weakness. I'd often get up and shower, but then became very sick
and have to lie down for 4-7 hours, with extreme nausea, sensitivity to sounds and light
and sometimes tinnitus. Without any meds, this happened for 3-4 days in a row, separated
by 3-4 weeks.
My GP thought it was an inner ear infection, but when it continued for 2+ months, he
ordered an MRI. I then went to an ENT and a neurologist. Over a couple of months,
my imbalance became almost constant, but varied in intensity. I also had trouble with
coordination that would last about 2-3 minutes -- using hands, especially. When very off-balance,
I'd have difficulty starting speech, or I'd stutter for a minute, but then be okay. I'd also
get nystagmus and some double-vision that would come and go. Fast moving visual
stimuli triggered or worsened my dizziness. However, I've never had rotational vertigo.
The ENT did lots of tests -- ENG, VEMP, audiogram and others. He detected some
problem with my right inner ear, but he said my symptoms seemed neurological and
wanted me to see a neurologist.
The neurologist saw me over the last few months and tested for about everything that could
cause the symptoms; all blood work came back negative -- nice to know I don't have Lyme
or syphillus, among other things. He said my "deficits" were all common to multiple sclerosis.
He especially noted that hot showers greatly worsened them. But, my open MRI was negative,
so he said it was not likely MS, but could be "vertiginous" migraines. He wanted
to start me on preventive meds, but I was getting better my last visit, so he said
to keep a diary and follow-up in 6 months to plan another MRI.
At my first visit, he prescribed my Meclizine and Zofran. My GP had given me Valium.
When the imbalance makes me motion-sick, I take 25mg of Meclizine. I find that
relieves the nausea, but doesn't do much for feeling off-balance. I've never taken
more than 50mg/24hr and usually 25mg/36hr. A 5mg Valium gives me some relief,
but I rarely take them and it doesn't help that much. I haven't tried the Zofran yet.
I never noticed headaches, at first, just extreme nausea and balance problems. Oddly, while
my imbalance and other symptoms have much improved, I've begun getting headaches
and facial pain. When I get those, I also get off-balance again. Now, mostly smells and
heat trigger my symptoms, though I'm rarely feel completely normal, balance-wise. Now
I've had headaches that last 10 hours. I still don't think of them as migraines because the
throbbing comes and goes, rather than build and become intolerable. It builds a bit, but
then goes, then comes.
Certain smells have made me almost immediately sick since my 20s and still do now,
as does heat. My mother, her mother and my sister all have or had "regular" migraines.
I'll update this when/if the Dr's settle in on a firm diagnosis.