Hello all from Migraineville Az,
I want to thank Teri for bringing to attention the Alice in Wonderland syndrome. As a person who experiences 24 hour aura that is never quite the same or ordinary, I sometimes experience the syndrome. It is often preceeded by flattening of my surroundings as if the third dimension was removed and things have no depth, then objects lack color and finally my images around me become all distorted, becoming smaller and larger without rhyme or reason. As another facet of my aura, I now treat it as such, though after attacks of this sort my vision takes a long time to come back to normal. I understand this is rare in adults but then again my 24 hour never ending, never stopping aura is as well. It is so hard to predict a worsening of my migraine situation (status) because my auras are so continuous. Sometimes they worsen, sometimes they don't before a deepening of pain. Various and many preventative regimes have failed to reduce my aura. I try to accept it but lately I simply can't. A frequent theme is the color blue which may interest some researcher out there. What I call my blue lightning - in which bright blue zigzags with silver lining shoot through my vision are often common for me. Things having blue patches on them from carpet to my dogs are common. This is not to say that blue is my only aura color but it is the predominant. The other is the constant black. Sagging lines, dots, ghost figures all figure in black.
You cannot imagine how much I wish for one day to wake up without the first thing I see in the morning being blue and black dots chasing each other around the bedroom. It has been so long, I can't imagine any more what it was like before my aura became continuous. My neuro has recently referred me to a local headache specialist in the area but so far they have not let me know whether it is someone covered by my difficult insurance, insurance for instance that will not cover lyrica for my constant pain though both my GP and Neuro have appealed. But my neuro as a last resort wanted me to try lithium. He doesn't like the drug, calls it dirty but says it does work on aura. I almost said yes but then considering the plethora of dangerous side affects I said no. My lamictal was supposed to be good for aura too, it has had no affect. In fact none of the drugs I have tried for migraine prevention or even abortive have never reduced my aura. So if there are any other 24 hour a day aura migraine patients I would like to hear from you. How do you cope? My own cope meter is way way down from constant pain, often I have little left to deal with as far as the aura. I am still fighting it out but am finally beginning to think about disability which my neuro has mentioned. But being self-employed it is messy. In fact everything health-wise is harder I think when you are self employed. I don't mean to complain, it just seems to be that way. It has been a pleasure talking to all of you because when I write - I feel like it is talking.
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