Out of the Downward Spiral

I had no clue that a condition I have had for almost twenty years could spiral (literally, and I mean literally in the correct use of the word) out of control.  I went back to the work at the end of July, but I was still struggling with daily migraines.  They were much milder and didn’t have the full vertigo symptoms.  However, by early August it became apparent that I DID have Menerie’s Disease on top of vestibular migraine.  By the end of the month I was having daily migraines, along with daily Meneire’s episodes that averaged about 4 hours a piece.

I was still so naive.  I had steroid injections through my right ear drum and after two weeks I stopped having the Meneire’s episodes, and I assumed the chronic migraines would just improve.  They always had in the past.  The first week of September I developed a migraine that did not stop.  It wasn’t super severe, I wasn’t too concerned, I kept working.  With the headaches I was lucky to get 9 reasonable hours out of the day, and slept over 12 hours a day.  It was worth it though, and it was going to get better, it always had.

In a vain act of being proactive I asked my neurology nurse practitioner to call in some steroids to break this week long headache.  That night I had two violent falls.  Not from dizziness or vertigo, my body just stopped working.   I had no choice but to stay home.  I couldn’t drive, I couldn’t even get around my own house safely.  By Saturday the headache had taken on a bizarre new quality that whenever I stood up or moved the throbbing would get so bad I would get lightheaded and dizzy.  I was advised to go to the hospital.  By Monday the pain had recalibrated my pain scale.  A scale that encompasses nineteen years of migraine, fifteen years of endometriosis, surgeries, etc. My conception of a 10 on the pain scale was totally blown away and reenvisioned.

By the following Wednesday I made it to the neurology office with tons of assistance from my boyfriend.  My migraine had gotten so bad my blood pressure and pulse were elevated and I was running a fever. I was rushed AGAIN over to the ER.

I realized I wasn’t getting better.  This wasn’t like last time.  This was new and different. At this point transient loss of muscle control had also taken ahold of my fingers making it impossible for me to type more than a sentence or two at a time.  The vertigo had fully taken hold. Walking, standing, or just tracking something with my eyes would send the world spinning.  And the pain, I can’t even describe.

Now it is almost the end of November and I am just starting to get back to where I was at the BEGINNING of July. I am so happy to even be able to type this post.

I’m also just starting to make sense of what happened, and stand on the dark edge of figuring out what it means for my future. The short of it is that I had two rare forms of migraine co-occur. Status migraine and Vestibular/Basilar migraine.  And apparently most headache specialists aren’t very comfortable with treating either, not to mention both together, not to mention both together in a patient would also has Meniere’s.

I am an anomaly. The negative ways in which this has impacted my care is it’s own story. The reality of this going forward is there is no clear source of answers, hell there aren’t even clear answers.  I have been lucky enough to have a drop in symptoms steep enough that I’ve been able to do my own research.  The sum of which is my headache severity and frequency can easily be treated with preventative drugs, but my auras (the vertigo and other nasties) are another story.

The outcome of the next month will likely forecast my future for the next few years, which is scary. My life is likely to be quite different. But where my body has failed and my doctors have failed, the people close to me haven’t. Especially my boyfriend who has been stuck with a near invalid for the better part of 2014.  Thanks to the people who care about me my will and my heart have not failed, and I am maintaining hope.

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