as small as a world and as large as alone

8:56pm May 20, 2015

anderfalling:

I am once again in a talkative mood and have some things I want to say about epilepsy, so today we’re going to talk about why tagging for epilepsy and generally helping epileptic people avoid seizure triggers is absolutely necessary. 

This might get long, but it’s very important, and I’ve bolded a short conclusion at the bottom if you can’t read it all.

I have temporal lobe epilepsy and mesial temporal sclerosis. This means my seizures begin in the temporal lobe, and neurons in my hippocampus have died and scar tissue has built up. The more seizures I have, the more likely this is to spread, meaning more neuron death and more scar tissue. This build up causes more seizures, changes in my emotions, and muscle spasms. 

If my MTS someday spreads at a rate that worries my doctor, he will recommend brain surgery to remove it. Brain surgery carries a number of risks, isn’t totally guaranteed to stop the seizures (about a 50-70% percent chance), and can be extremely costly. A number of tests are required to determine if someone is a candidate for surgery, there’s no guarantee you will be, and there can an extremely long waitlist.  

I am lucky (ha) in that temporal lobe epilepsy patients with MTS on one side generally respond the best to surgery. People with other kinds of epilepsy and people with bilateral MTS have lower success rates in stopping their seizures.

I am also extremely lucky in that photosensitivity is not one of my seizure triggers. My seizure triggers are rapid temperature changes, physical stress, mental/emotional stress, and sleep deprivation. However, many epileptic people are photosensitive, and they are most at risk online. 

So what does this all mean for you, the average non-epileptic tumblr user?

Mesial temporal sclerosis is very common in epilepsy. If someone with MTS has a seizure, that neuron death can spread. As well, in every kind of epilepsy, there is something called SUDEP–Sudden Unexplained Death In Epilepsy. Basically, a seizure can just kill you without warning.

Not tagging photosensitive seizure triggers can lead to brain damage and possibly death for epileptic people. Not helping epileptic people avoid any and all seizure triggers can lead to brain damage and possibly death for epileptic people.

Please. Tag flashing lights, flashing colours, loud repetitive sounds, optical illusions, and bold/regular repeating patterns. Asking us what our specific seizure triggers are is appreciated as well, because everyone has different ones.

Thank you for reading, and I’d appreciate a reblog!

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