I feel as though I haven’t been updating this as much as I should, probably because I am TIRED. Sleepy girl for life.
This past Monday (1 week ago now) Jan 23rd, I saw my neuro-opthamologist for a follow up. Something about a test result with my retina being slightly abnormal, but I have a follow up with a retina specialist as soon as I email him and find out who he wants me to see. But the most exciting thing is, I finally got a prescription for Lamictal! This mysterious drug that I have been hearing about every time that I have went to see him for about a year now.
It’s an anti-seizure medication but it has shown to help with migraine and visual snow. It’s one where you will slowly have to increase your dose up to the correct amount to see any relief. I’ve only been taking it a week so far, and I am just EXHAUSTED. Never been so sleepy for so long in my life. I decided to caffeinate myself today, which was probably a bad idea, but I have things to do!
I am also very very paranoid of one of the rare side effects, Steven Johnsons syndrome (SJS) for no reason other than it makes your skin fall off and I really don’t want to deal with that.
So lets talk about my rare disease. I suffer from Visual Snow. I cannot find any statistics or community about my disease. Visual Snow is a 24/7 neurological disease that causes visual symptoms, like seeing snow or tv static. It also causes increased light sensitivity, seeing after images and trails, fatigue, tinnitus cognitive dysfunction and some others. It can lead to anxiety and depression.
I have a hard time getting doctors to take me seriously because of this condition. No one has answers and there are no tests. No studies are being done in the US (as far as I know).
It is hard to live with this disease because it is widely misunderstood. It affects my most important senses (sight & hearing) as well as my brain. I have a hard time seeing through the snow and visual disturbances. I have a hard time hearing because of the tinnitus and sound sensitivity. I have trouble with thinking, forming thoughts and words, and then communicating those thoughts coherently. I often feel like I am trapped inside my own head, unable to see, hear or effectively communicate with the world around me.
I have special doctor recommended glasses to try and tone down some of the symptoms. They block about 20% more light than normal sunglasses, and have a purple tint that’s helping me deal with some afterimages, contrast issues and a small amount of snow. These glasses are allowing me to gain some of my visual functionality back.
There is no cure and no treatment that has been proven to work. Experts don’t even know which part of the brain it comes from. I can only hope that it doesn’t get worse as I continue to struggle through every day.
Here’s a video that made me cry REAL TEARS the first time I watched it. It (almost) perfectly describes my vision. Add in a large amount of mystery scotoma and more colored halos etc. and that’s pretty much how I see.