Well, I went to my new neurologist and it was an eyeopener. My doctor says that he's not happy with my history of treatment at all. He confirmed something I've wondered for years. It seemed that when they upped and lowered my dosage of Celexa, it didn't have much correlation with improvement of my condition. And additionally, I didn't have any change in medication and my condition would decrease and then get better. Turns out, Celexa isn't a migraine treatment. Some antidepressants are, but not Celexa. I seriously don't know what the hell. I really liked and trusted the doctor who first put me on it, and no doctor since has said "hey, wait, what?" So really the only treatment I've had has been the Maxalt. The Topomax and Zonegran I was on were too low dosage to help.In other words, in 4 years of going to neurologists, I've not really been treated.So I'm going back on Topomax. He says that the tingling in the hands and feet will go away after time, I just have to stick it out. We're going to increase my dosage to an acceptable level, and he says he thinks he could get me to a once a month occurance and I could go back to work and a normal life.He wants to do a 24 hour EEG, which should be interesting. I'll be wired up and sent home. He wants to rule out seizure activity. I'm not leaving the house looking that way. Of course, I'll look really cyberpunk for a day.

This new medication, Zonegram, seems to be giving me a low grade headache since I started. I know I also have an abcessed tooth, so I'm wondering how much it feeds into it, but the headache is the whole head, feel-it-in-my-fingers type.
I had an all out episode yesterday, I'm not sure how long it lasted, but it was early afternoon, then it was late evening, so it had to be a doozy. I need to talk to Brian when he gets home to get the low down. This morning, I had the high res vision I get afterwards, where everything seems too bright, too detailed. Like looking at my living room will overwhelm my sense of vision. I can only describe it like the scene where Dorothy opens the door to Oz. I always feel like I should harness it somehow, make things while I feel like I can see this detail, but Iend up playing online games to block out as much outside stimulus.

So tomorrow I meet for THE LAST TIME with my horrible, uncaring neurologist. Because I just got an appointment with my shiny new neurologist!!!I've been playing phone tag trying to schedule an appointment, and got a call today. They had a cancellation end of May, would I be interested? Well, considering that they schedule new patients six months out, yes, yes I would. This neurology center is supposed to be wonderful. A cousin of mine is working on a degree in neuro-psychology and does work for them and recommends them strongly--also she'll be able to confer with the doctor, so I have an insider.Even if they don't find a good cure for me, I'll be so happy to talk to a doctor who cares again.

I've debated writing myself a book about all the crap I've been through with this whole thing throughout my life. More a cathartic measure than anything. I had come up with this as an intro a while ago. It covers the time before the migraines, when it was just me and the auras, before the auras became terrifying harbingers.

It was when I was seven years old that I realized I was a deliciously, wonderfully, special little child. Not in a euphemistic use of the word special, or even in a greeting card "for a special little girl" sort of way, but in that I was different than the children around me.
At that age, everyone realizes that their thoughts are seperate from others, but for me that realization was stronger, that my experience of life was fundamentally different than others.
We'd play games at recess, complex pretend stories with monsters and paralell universes, but at some point, I realized that when I'd point out the lighted patterns shimmering around the playground that everyone else was reacting to an imaginary object. They couldn't see the moving patterns I did. I was the only one who would watch the movement, like the edges of our universe were pealed back to show something beyond, a fascinating kinetic world of geometric lighted pattern and energy. It never scared me, rather I'd feel elated, happier than the situation warranted, it was wonderful and familiar in a strange sort of way. They'd show up maybe once a month or less, and I desperately wished they'd be around more.
I tried to seek out things that reminded me of the moving patterns. There was a book from the school library of optical illusions that I'd check out almost weekly, fascinated not only by the similarity to what I saw, but also to the way they conveyed a small sense of the motion I saw.
I'd see lights more often at night, seeming to hover in the darkness, constantly moving like the laser show at Epcot, occasionally taking forms. I'd tell my parents (who explained as you do to children) that it's easy to see things in the dark as you fall asleep. Besides, I was often sick and had fevers, which might cause some hallucinations. But I knew better. This was all done in some way for my enjoyment, a show to amuse me and me alone.
The other kids in school also couldn't float, a realization which shocked me at the time. Once I sat at my desk and let the delicious sensation of being pulled up, like the very air had gained boyancy. The other children seemed so solidly heavy in their chairs. But me? If I let myself go, I felt I could almost float up out of my seat and bob around the ceiling like a astronaut in a space shuttle. It was a calming feeling, soothing almost.
Once, both the lights and the floating happened at once one Easter at my grandmother's house, as I stood in the front living room. I had irridescent clear blue wrapping paper and gossamer Easter grass which I tossed and let flow and fall with the movement I felt and the shimmering lights I saw in this elaborate glorious dance only I experienced. I gathered the paper up afterwards and stashed it for years, trying occasionally to vainly recreate that moment of pure joy.
I was curious enough to demand an answer to what was going on, and young enough to look for answers in fairy tales, and sure enough, I quickly found one. It was in a children's encyclopedia of mythological beings and seemed to meet my criteria. So one day, I pulled aside my friend Aleah and explained in strictest confidence that I suspected I was some sort of a pixie. They exchanged their children at birth for mortal children, were redheaded, and were said to see things others couldn't because they were seeing and experiencing the fairy realm. The next day, a bunch of children started to tease me at lunch. Aleah had let slip my confession to her. I tried to defend myself, but explaining the lights only made them tease me more.
Within a week, the kids moved on, but I decided parcelled the experience up and decided that this was all mine, a secret, and not to be shared. I didn't talk to anyone about these experiences for another ten years.

Aura Aura Aura

So, bored again, and been doing some looking into migraine auras. Its interesting to me how other people's symptoms line up with mine, and how they differ.

Aura, for the record, is the bizarro stage that happens just before migraines or seizures. They indicate that something is going very wrong in your brain, but give the benefit of allowing you to take measures to make yourself safe before the episode actually starts. For me, I remember them from childhood long before I can remember the actual episodes taking place. (My grandmother once bought me this coloring book of geometric patterns that you were supposed to fill in to make pictures and I remember being disturbed by the similarity between it and the images I saw.)

I do have a visual aura, but also weird sensory things going on. I smell/taste a very strong scent, something like smelling salts, formaldahyde or rubbing alcohol... a smell so sharp that it registers as more of a non-scent than an acual smell. It registers bizarelly, more towards the back of my throat and nose than something you're actually smelling, and tends to ebb and flow in strength and actual form; occasionally registering slightly more acidic, but sometimes almost like an aerosol undertone. It's a very industrial chemically smell, and one I've sensed components of frequentally in real life settings, but not anything I can ever firmly identify.

A lot of times I start to have this sense of disconnect, although it happens much worse afterwards than before. Usually I just don't feel like I can depend on my body to function. I usually describe myself as dizzy, but it's more like suddenly I feel like the floor might not hold me. It's totally illogical, and I know it, but the fact that I know that I'm going to lose my higher functioning very soon, so I usually tend to get down on the ground or lie down when this happens.

It's the visual aura that fascinates me. I've looked up other people's experiences, and they can be downright overwhelming. I'm almost disappointed that mine is less dramatic, because in its own way its something I'd love to experience. I remember when I found out about television test patterns, I thought of the visual auras as sort of being like that. Surprisingly, I wasn't that far from the truth. http://migraine.blogs.nytimes.com/2008/02/13/patterns/ As I said, though my aura isn't as detailed as the intricate carpets they're showing on that site. There was an optical illusion that was featured on not one, not two but THREE of my psychology textbooks as an example of motion and is still the closest thing to what I see 90% of the time.

That, only monochromatic. Not neccessarily black and white, insomuch as maybe red and white, or yellow, or whatever. It comes into the perephery of my vision, like the slice of light you get around the edges when you wear sunglasses and slowly takes over slightly more of my periphery, sometimes floating out into a C into my vision. The thing is, it's opaque. I've tested myself, and I can see through it to what's beyond, it just takes a moment of pondering to see past the distracting concentric moving circles. One of the reasons I shy away from lights so much the second an aura starts is that its the areas of my vision that are taken up by the circles of doom are the areas that cause the sharpest bits of pain. Fortunetly, it never takes up too much of my vision, and frankly, my auras only last so long before the actual episode starts that it's not terribly a big deal in a horribly defeatist sort of way.

The ridiculous part is that seeing that when things happen that remind you of the aura, it actually panics you and in some way, you feel like you're going to start to have symptoms. I used to have class in a science building where the smell of chemicals would occasionally waft through the air and remind me of the scent I smell during the aura. It would be enough to make me dizzy with anxiety. There was a construction zone that had a similar smell to it and I couldn't walk past it. The person who bought one of those textbooks from me must have hated me because I blacked out the optical illusion with a magic marker. I'm not that bad anymore. But still, when I smell sharp chemicals, I run around like a crazy person asking other people if they smell it too. I used to have to very carefully calm myself when I worked when they'd paint and have paint thinner or spray for bugs.

By the way, I hate when I find thing out I didn't know. When looking for that link again, I came across this one from the same NY migraines blog, which I hadn't read. http://migraine.blogs.nytimes.com/2008/02/17/lifting-lights-and-little-people/#more-12 There's a very famous incident in my family from when I was a child involving my seeing a man on a bicycle and watching him cycle under the furniture. I've read a lot contemplating how young migraines actually start, and I'm more and more wondering how long this has been going on with myself without my realizing it.

I've decided to search out a new neurologist, and I'm going to try to go to a group where it just so happens that a second cousin of mine works with a specialty in neuropsychology. She actually had no clue of what I've been going through all these years, considering I've kept everything super quiet with so much of my family. I've been so embarrassed of what I've been going through, and the fact that I'm so out of control over it, plus the fact that it has complete control over so many facets of my life. I just haven't wanted to admit that it even exists, not to mention how much of a problem it is.
So, we've started talking on email, and she's recommending several neurologists to me. There's apparently some very involved investigative techniques at the hospital, and I'm willing to go through some strong tests and treatments if it means getting better.

I can say now, with some certainty that I am going to go out of it today.
I even know why: I had a nasty stomach flu for a few days and didn't take my meds/meds didn't stay down for a few days. Even without that, if I'm sick I'm usually doomed a few days later.
I woke up this morning feeling lightheaded and disconnected--it's a feeling I know well enough to forsee what's going on. My solution was to go back to sleep, which wasn't as stupid as it may sound. I sometimes can sleep through the entire thing, or can fall asleep and wake up better, so sleeping might just prevent the whole shebang. No luck tho, I just woke up a couple of hours later feeling the same way. So I'm taking it easy and waiting. Actually, I'm stunned I'm still here. I thought I'd be gone by now. The kitty is freaking out. She senses when this is going on. I desperately need coffee right about now.
Now I'm wondering if I should take a Maxalt now, or wait til a full aura? I have one left, so if I take it now, I might just use up my last chance. But if I wait, it might be too late. Course, Maxalt hasn't been doing much for me lately, so I might be wasting my time taking ANYTHING.
And it took me fifteen mintues to type that, I don't think I'm thinking clearly anymore.