the girl with kaleidoscope eyes

You may recall that last Easter I was awakened from a deep sleep feeling strange, and I wound up in the ER because I thought I was having a heart attack/stroke/implosive brain tumor/tetanus/epilectic seizure or some combination thereof.  For the rest of that week, the same thing happened every night, several times a night, although it tapered off in severity. I told myself to breathe deeply through these episodes, to resign myself to the fact that they were just going to happen, for whatever reason, until I figured out how to stop them.  (At that time, I naively believed that someone in the medical profession would help me with the stopping of them, but--[heavy sigh]--I have yet to meet that person.)

These episodes occurred almost exclusively at night between 11 p.m. and 3 a.m. Since it was hard to get back to sleep afterward, I spent much time thinking about what had happened and writing it down.  I kept a heart rate monitor/blood pressure cuff next to my bed so that I could track activity before, during, and after episodes. I wrote down everything I had ingested each day and the time of day it was ingested.  (I know--a little anal, are we?) I was trying to discern a pattern, some key to the source of this sudden onset of internal haywire.

A typical episode went something like this: I would be startled awake from a deep sleep, all sweaty and en fuego, as if I were feverish. As soon as I realized that I was sweaty and en fuego, a sense of strangeness would overwhelm me and make me feel like everything was . . . um, weird.  (I'm so articulate!  This part of the episode is very difficult to describe because it's  more of a "sense" than a "feeling," kind of like deja vu is a "sense.") That's usually when I would convince myself that I had toxic shock syndrome. Then I'd start thinking about a Discovery Health Channel show I once saw wherein a fomerly happy-go-lucky teenage girl becomes oblivious with fever but her parents don't take her to the ER for a day or two.  When she finally gets to the hospital, her organs aren't functioning well.  By the time they trace it to TSS, it's too late.  Whenever I recall that part of the show with panic I usually tell myself, "hey, you always think you have TSS when you have these weird episodes, remember? Therefore you must not really have it and you are instead having one of your weird episodes." Then I start to feel queasy and I have to tell myself, "That queasiness you're feeling? It's NOT TSS. Now, focus!"

Once I start focusing, I realize that my stomach was gurgly and my intestines are squealing like a stuck pig (which, although loud, never seems to awaken Bell as he peacefully dozes next to me without a care in the world). That's when I begin to wonder whether we had ground turkey for dinner because maybe I have food poisoning instead of TSS.  I'll check the time, then take my heart rate and blood pressure for posterity because I can feel them starting to increase. (On a few occasions before I invested in the cuff, it felt like my blood pressure had dropped but my heart rate soared, and I got a headrush while lying down that was alleviated when I sat up. That is topsy turvy, no?).

At this point, a warm tingling either in the back of my head and neck or in my arms and hands starts, and that's when the visual distortions/hallucinations/really trippy shit happens.  The first several times these episodes occurred I saw flashy sparkly lights--pretty, dancing lights. That sparkled.  Since then, however, I've seen a variety of visual trippy shit that marches across the black of my eyelids and occurs over and over in the same pattern for about twenty minutes: e.g., a bright circle against a black background where the circle grows larger in waves until it fills my visual field (kind of like when you look at a flash bulb); brightly colored (usually yellow) animated zigzag lines, sometimes in a circle formation; lines of smaller zigzags, often black and white, much like a herringbone pattern that would be suitable for fall attire this season; and a black screen with pinholes poked out and red light coming through.  The pinholes are often grouped in twos. It's like there's a party in my head.

Always, after about 15-20 minutes of these visual thingies, the muscles in my chest and abs and biceps and hamstrings start to rumble and roil, twitching a little here and there but building and eventually culminating in an all out Twitchfest (TM). Afterwards I am wide awake, wondering what the hell had just happened. (Meanwhile, "zzzzzzzzzz..." from the guy next to me.)  When finally I drift off to sleep, it happens again about an hour later. Sometimes my entire night would go on like this. Upon waking in the morning I would feel completely taxed, as if I had been tied to a Universal Machine and forced to lift weights all day.

Early on I learned that I could control certain stages of the episodes.  I figured that so long as their pattern held, I wasn't going to die immediately so I should learn how to endure them more comfortably. For example, I made conscious efforts to not panic and to control my breathing and heart rate with slow, deep breaths. That seemed to work.  Or when the twitching was about to start, I found that if I stretched my limbs or stood up and walked, I could thwart it.  But if I just lay there trying to relax my muscles, the twitching would overwhelm them.  The sequence of activity was always the same but as time wore on the aura-like sense and the visuals got stronger as the other stuff became less substantial (or under my control).  All this time I was going to doctors or having tests done and no one could figure out what was wrong. Then one night I had a breakthrough.

We had dinner at the house of some friends.  Afterward, I ate a double chocolate brownie with chocolate on top, drank several glasses of red wine and nursed a cup of (decaf) coffee.  Once at home I tried for several hours to fall asleep. Finally successful, I was awakened in the usual fashion about an hour later (including thoughts of TSS. How quickly I forget!), only this time the visuals were incredible--vivid, colorful, animated, and just effin' freaky. Sometimes I would open my eyes and they would pretty much be gone, but as soon as I shut my eyes the same visual appeared exactly as it had been against the black of my eyelids.

First I saw a big square with smaller colored squares inside.  Each square was a different color except one, which was black.  This black square kept moving around, switching places with the colored squares. It was very Andy Warhol-ish. Meanwhile, an image of a black-and-white telephone I once owned was superimposed over these squares but not moving. I don't know how long that stayed within sight but it was eventually replaced by what appeared to be a page from a math or science textbook as it contained a bunch of formulas. The background was white, most of the text of the formulas was light grey except for the formula in the center, which was black and stood out as if highlighted by a white light.  But that formula kept changing, as if it was scrolling along the page from left-to-right. Finally, things changed again and I saw a brown tunnel made of blurry twigs, and inside it the image of a train flashed on and off. Then the twitching started.

That was when I decided that either 1) someone had slipped me LSD at Judy's house; 2) I am stark-raving mad; or 3) I am a freaking genius, the likes of which this world had never known and will not appreciate until long after my death (when the sketches are found with my notes scribbled in the margins.) To determine which of these options was the most viable, the next day I Googled for hours. That's when I realized that, in fact, there was a fourth option. I think all these systemic disturbances are migrainous. Apparently out of the blue, I had joined the ranks of migraineurs around the world. (It sounds so French and sophisticated, oui?) 

Even though I have never experienced any pain or headache with these, they can still be a form of migraine.  Apparently a small population of migraineurs experience  migraine aura without headache. (These are sometimes called "acephalic migraines" or "acephalgic migraines" but I dislike those term for their suggestion of decapitation, a practice I do not endorse except in the case of "A Tale of Two Cities." I loved that book in high school.) Damn.  I had kind of been  counting on the possibility that I had become some kind of mystical genius with access to visions unknown to anyone else.  As it turns out though, I'm probably just another migraineur. To make matters worse, many of the online images of migraine art look disturbingly familiar, as if someone else had stolen my hallucinations. (So much for my idea of opening a gallery...)

It seems fairly clear to me that these episodes are tied to two things: my womanly cycle and caffeine intake. Incidentally, I have not been diagnosed by a doctor as having any such thing. In fact, the only thing doctors have done for me is order tests and tell me that they have no idea what is causing my strange symptoms, then refer me to someone else. (Oh, and they have also tried to push Valium and other irrelevant drugs on me.) With the exception of one, every doctor I have seen to has focused on the twitching only, either completely disregarding my reports of an aura-like feeling or flashing lights and zigzag lines and queasiness, or simply chalking it up to "anxiety."

So. Have any of you ever experienced something like this?

[UPDATE: links corrected.]

Comments

[Glen]

So now that you have your own diagnosis, do you plan to visit a doctor to get a prescription for some migraine medicine? I assume such medicine must exist.

[Antonio Patano]

My acephalalgic migraines come only when awake, and are entirely restricted to the visual kind; they come accompanied by nothing, except for the shot of cognac that I gulp down to get rid of them...if at home.

I am a normal male, i.e., no menstruation of any type at all.

Are acephalalgic migraines symptomatic of anything threatening? Has anybody out there taken any effective medicine for them? (Other than a shot of good Courvoisier, I mean)

[dgm]

antonio patano, there are studies and articles out there that suggest a connection between acephalgic migraines and an increased risk of TIA (transient ischemic attack--a kind of stroke, i believe), but other studies seem to say "nuh-uh!" or that the increased risk is very very small. having said that, though, sometimes TIA can look a lot like acephalgic migraine. since i don't know your migraine history (or, pretty much anything about you except that you don't menstruate), i would recommend getting yourself checked out. in my case, as i said in the post, it is pretty clear the episodes are set off by hormonal changes/imbalances. plus, i've had CT scans and MRIs and my brain looks okay. if you haven't done that, maybe you should.

as for medications (and this responds to your comment too, glen), i know that there are migraine medications out there but i have no idea which are the most effective for migraine auras without headache. unless i start getting killer headaches to accompany these auras or i learn that my health is threatened by allowing them to continue, i won't go the medication route. in women who get migraines that track their cycles, it is usually due to estrogen dominance. i've been taking supplements--among them vitamin b and primrose oil--to keep things in balance, and ever since then things have been much better. i would try antonio patano's courvoisier suggestion if i could actually get the stuff near my mouth, but i can't stand the smell.

[Scott B]

NOW you understand what high school was like for me (though I don't think I was having migrains)!

[dgm]

scott: you mean all that time you were just estrogen-dominant?

[Scott B]

Remember how long my hair was? Just a coincidence? And my love of bubble ba...oh wait I think I said to much!

[A. Newton]

Hey, I'm nearly sixty-five and have had these incidents most of my adult life with various diagnosis. It gets tiresome. I've decided to live with it and keep my BP down.