Persistent Visual auras with headache very frequent, very scared.

Hello, my name is Emily. I am a 30 year old single woman and I believe, rather I know I am suffering from this persistent migraine aura problem. I just came across this web site last night after a long day and evening of having the visual hallucinations/migraine. I do not know much about this condition in fact what I do know I have determined from my own experiences. I have seen my eye doctor numerous times and all she ever says is I'm having migraines and there isn't much that can be done. I started on my own writing down every time I have an episode, the length of time my vision is blanked out, how long the hallucinations last, what kind of stress I am under in that moment, my diet and and any other things I feel may be relevant. I do all this in hopes of maybe uncovering a trigger or similarities. It has not worked. I first had the hallucinations in the spring of 07 and every single episode is different. It has not happened the same way twice and I never know when its going to take place. My hallucination is a spinning prism/checkerboard patten of light that shimmers. It starts out as a pin prick of shimmer that I cant see through the pattern grows and spins and pulsates until my whole vision is blanked out and then it grows out of my sight. When my vision returns everything seems to be hyper-colored and very intense. It doesn't seem to have a preference over one eye or the other. Most of the time it results in a headache but every once in a while I wont have pain after the lights. When It happens the feeling I get can best be described as seasickness. The strangest thing is I grew up on the water, and have never had any problems with motion sickness. I also have some confusion, trouble with my motor function, muscle twitching and trouble finding words after each episode. The migraine art and visual aids on the web site for this condition are pretty accurate in what I see. I also suffer from floaters, snow, after image, ghost imaging and distortion all of the time not just during an attack. One thing I did not see anything about is, when I read the letters on my screen or page do not look they are in a straight line, the letters all appear to be just slightly shifted making a wavy lines or they look melted. This is a new thing, its only been about a year that this symptom has been present and a most annoying one because I love to read. I have a pretty good handle on what I experience when having an attack what I am most concerned about is the frequency of my episodes. I have no idea if this is normal, middle of the road, or extreme because I really know nothing about the mechanics of all this and up until last night I was the only person I knew of who suffers from this mess. 

I had traditional migraines when I was a child, they were pretty bad pain wise but infrequent and manageable. I have poor eyesight but when I moved to contacts the headaches pretty much went away. In the spring of 07 while in art school I was working on a drawing and had my first visual hallucination with no pain. I thought it was strange and it hindered my drawing but was over after 30 minuets. I had a few more that quarter but they were more of a nuisance than anything else. Over the next few years the frequency increased and pain began to follow my visuals. Presently, I will have the visual hallucinations and lights lasting 30 minuets to an hour at a time followed by headache, each cycle happens up to 6 times a day and as the number of the visual hallucinations increase so does the pain. By the end of the day I have to cut all the lights out, put ear plugs in and completely shut down. Sleeping really isn't a relief because I have these attacks in my sleep and have been woken up by the lights behind my eyes. I will suffer from this everyday for a two month span and then it just goes away. It will go away just long enough for me to get comfortable. When I least expect it these attacks begin again. Like I said, I am a single woman who works full time but is not offered medical insurance. I have had a really difficult time getting any doctor I have seen to listen to me. They all just want to throw migraine medications at me which hasn't helped the problem at all. The med's just make me feel removed from reality. I cannot afford to sift trough doctors until I find someone who wants to help me. So, how do I effectively get a doctor to listen to me, treat me like I'm not crazy, seeking drugs, or just overacting? I'm beginning to feel like my brain is defective and I stay in fear of when it will strike. I want relief because I can't live my life in a dark room away from the world. Please I would like any and all insights, information, support and help that can be offered. I have felt alone in all this and I am thankful to know I am not the only freak of migraine nature. If anyone out there experiences the same thing I would love to compare notes. Thanks in advance for talking with me.

Email: ehawki20@aol.com

It really does sound like persistant migraine. If you had health insurance I'd want an MRI just to be sure.

Basically, migraine treatment these days does consist of doctors "throwing" medication at you. They rotate through all the standard preventatives and abortants and if nothing works they start all over again.

Yours are so persistant that you definitely need a preventative, not just an abortant. But have you tried the triptans like Imitrex to abort? Also, some people find relief with OTC drugs like ibuprofin ( I'm one of those who can stop all the visual and other aura stuff with this drug, most of the time). Of course, they say you shouldn't use these OTCs too often.

Some of the preventatives, like Elavil, don't seem to cause any cognitive side effects, or make you feel removed from reality, other than a little sleepiness, which is why you notmally take this one at night. It's also very inexpensive in generic form ( amytriptaline).

Hello, I was just wondering, you said you saw an eye DR, was it an Opthamologist?

One thing I have found to work well with DR's is to go in and be yourself. Have a consultation first, not just an appt. Make sure they hav eyour full attention, and just explain what is going on. I myself have outright told DR's "I am not a drug seeker, in fact I want as little as possible, as long as my pain and symptoms are controlled". Since I started dealing with migraines I have seen several DR's and many times wished I would have said or done this or that when dealing with them, also there have been times I wished I wouldn't have let them make me feel a certain way. One day, it just all clicked. Like I said, I let them make me feel that way. DR's, although sometimes we may think it, are not gods. They are humans and make mistakes, they have other agendas from time to time than just their patients. Thinking on that I came to the conclusion that I was going to treat them like humans, an expert in their field, but still humans. I no longer put them on the pedastal I used to and this has gotten me a lot farther than before.