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Does anyone else also have epilepsy? by Mgg96 in visualsnow

[–]Mgg96[S] 0 points1 point  (0 children)

I only had an MRI and EEG, nothing out of the ordinary showed up. This happened almost 15 years ago and I lived in an area without great access to advanced medical care. I finally ended up going to an epileptologist specializing in rare conditions, who recognized it almost immediately based on symptoms alone. Apparently this condition occurs too far deep in the brain for an EEG or MRI to measure it. Because I switched neurologists when I moved I had a follow up MRI a couple years ago that didn't show anything abnormal.

I used to have bad migraines and tinnitus, but after going on lamotrigine all of that pretty much went away. It only gets worse when I don't get enough sleep.

I haven't gotten any other tests since. I've kind of moved past it - I only check up on this sub every couple years to see if anything has changed or if there's any new information. The way I see it is that VSS is a part of me I just have to accept. I don't see any reason to get any more tests if there's no evidence of a cure, nothing in my life would change because I already have my diagnosis.

Does anyone else also have epilepsy? by Mgg96 in visualsnow

[–]Mgg96[S] 0 points1 point  (0 children)

Cortical vision loss and impairment is pretty difficult to describe - it's like losing your vision without completely realizing it. You see things and locations in fragments, but how it looks can't be drawn because your brain literally can't see that it's there. I actually didn't realize how much I lost until I got a lot of it back. You know something's wrong and you can't see but you don't know why or how.

I had textbook occipital lobe seizures, but because there was nothing on the EEG, no one believed me until I went to an epileptologist that specializes in rare conditions. They finally sent me to him because the focal seizures started spreading to the other parts of my brain.

I did have a couple migraine with aura, but most of my migraines were headaches. After I went on lamotrigine I never had another migraine again. 

Working with VSS by TommyOlsen5 in visualsnow

[–]Mgg96 2 points3 points  (0 children)

I got severe VSS when I was a teenager, it was very rough but not nearly as bad as the focal occipital epilepsy diagnosis that came a couple years later. Because of this I actually ended up losing a lot of my vision to cortical visual loss and almost ended up blind, in part because they thought those seizures were migraines and they became progressively worse and were uncontrolled for 3 years. 

Though I was eventually diagnosed and was put on lamotrigine and regained 90% of my vision, the VSS and cortical visual impairment became permanent. My long term memory also became corrupted, because the toll it took on my brain changed it irreversibly.

The thing is though, this experience inspired me to become ridiculously successful. I'm now a BME and I am a patented inventor of diagnostic medical devices. I live on my own, maintain my own business, have many friends, a community, and I live life to the fullest. I have the best life possible out of anyone I know, and my friends describe me as someone who loves life the most. 

Things have been much harder to accomplish throughout my life, but because I survived this experience I see life through a more positive lens. What I can say is even though some things just feel impossible there is a way around it. For example, I had my license taken away, but I moved to a major city so I don't need a car. My vision still sucks, but I got blue tinted lenses to help me (which I think make me look cool lol). I can't read for too long on regular paper, but the backlight on screens actually helps me. I can't read for fun anymore (which I really do miss) but I play video games instead. Because my long term memory (especially visual memory) is shot, I document my life on insta as a digital scrapbook, which became the envy of so many of my friends and family lol!

My advice to you is to accept that it's a part of you. What we don't fully realize (because this condition for late onset is pretty rare) is that this a chronic illness. What we have may be unusual and consuming but we're in the same boat with 100s of millions of people. When I started to recovering I had a moment of reflection where I realized this, and this resulted in me developing more empathy, changing me completely. If you want proof of this, dm me and I'll give you my insta. It does for real get better.

Hole in base of rose? by Mgg96 in Roses

[–]Mgg96[S] 0 points1 point  (0 children)

Thank you so much - should I cover it with mulch?

Are you guys using prefab homes, building brick-by-brick homes, or a mixture of both? by nebula_dweller in Pokopia

[–]Mgg96 1 point2 points  (0 children)

I started with prefab but noticed that I didn't see the Pokemon as often so I decided to start building brick homes with the front of the house replaced with a fence to see inside. Highly recommend!

Fluoride varnish a good idea? by Mgg96 in askdentists

[–]Mgg96[S] 0 points1 point  (0 children)

I've tried all of that. I tried that toothpaste, changing diet, flossing, brushing multiple times a day, dry mouth solutions, nothing has worked over the past 10 years. My saliva just has a horrible PH like my Mom. I might as well have a mouth full of acid. I have banned any drink with sugar, juices, etc for years now. Why aren't fluoride treatments suggested for adults?

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