I started writing this blog to document my life while I struggled with a so called "RARE" disorder. I have found out the symptoms are indeed rare, however the problem isn't! Migraines have taken over my life and I am on my way to defeat them!
Thursday, March 20, 2014
Hyper aware - Majority rules
So, I have since seen two very brilliant Dr.'s regarding my peripheral vision and why I see things jerking/lagging and not smooth as I did before. The first Dr. said this is normal, however it is not normal to see it as I do. The best way I can describe it is almost like watching a flip-book comic. Sometimes it's not noticeable, but other times it's hard to ignore.
The second Dr. told me everyone has all of these things with their eyes, visual snow, after images, jerking vision (Saccades and smooth pursuit vision) however "Normal" (He didn't want to use that word, but I said it was fine as I know my brain isn't normal) peoples brains filter all of this "noise" out, but in my case and other peoples cases, typically in close head injuries, this filter stops working.
Both Dr.'s say there is nothing they can do. If it gets too bad with the jerking vision one said he could try to treat it... he didn't go into how.
At the moment we are waiting for the Visual snow study to come out to see if there is any clues as to what is going on in our brains. Then at that point we can move ahead to see if we want to trial some different medications.
I am applying for disability at the moment, but I don't know if I will get it. After all only I can see what I am going through with this curse of an illness.
My biggest problem now is still the fear that this will get worse. My 2nd Dr. said he doubts that it will get much worse. I have heard some horror stories however. The mere fact that I am having this peripheral stuff is scary because this particular symptom has only happened in several other cases out of hundreds and hundreds of people with visual snow. So why was I the lucky one?
Well, it could be the fact that when I was 4 I was kicked in my head and fell backwards hitting the occipital part of my head requiring stitches. From that point on I have had sensitivity to my scalp just like a person with migraine disorder would have. I also would get car sickness frequently and vomit. Then the migraines started when I was about 10 or so, they rarely happened though. By the time I was in my early twenties I was working out regularly and rarely had a headache. Then this Visual snow stuff happened after a migraine and now all of a sudden they are here and fiercer than ever. Could this be why I have Visual snow? God, I hope this study shows something that can be fixed. This hyper awareness stuff is for the birds.
So I think these Dr.'s are right. I think there is something going on in the brain that is shutting off the normal filter that keeps us from noticing all the visual noise and even the sounds like cracking in our ears.. things that I now hear. Maybe there is an over stimulated area and a hypo functional area that isn't getting enough stimulation. Either way, God willing, we will find a cure. I am 31 years old and am not ready to give up yet!
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