I recently was told that many in the medical sphere regard those who live with epilepsy in a lower regard. Due to the fact that so many of them don't want to undergo tests in order to diagnose and possibly fix their situation. I fit in this category. I have had so many tests done that I'm tired of tests. I am to the point where I would rather just take medication for the rest of my life than take tests for the rest of my life. Most people with epilepsy who have access to healthcare have had countless tests. CT scans, EEG's, sleep EEG's, MRI's, PET scans, etc. The ones listed here are the less invasive types, but some can be pretty invasive and downright terrifying. My EEG's, sleep EEG's, CT scans, MRI's, and PET scans have all come up with no results. It's always the same thing.
"I have good news and bad news. The good news is your brain is normal, the bad news is, your brain is normal."
So I have been recommended to take a whole slew of other tests, all of which sound much more invasive than what I've currently been undergoing. The one that sticks out the most is where holes are drilled in the skull, then long needles are stuck down through those holes into the brain. No thank you.
Not to mention these tests are expensive. Twice I have spent an entire week in the hospital hooked up to a dozen little nodes undergoing an EEG that ended up costing in the tens of thousands of dollars. Neither time yielded usable results. A year or two after the first test I found out that the test had been rendered unusable. My neurologist at the time was strongly against a surgical option and wanted me to stay on medication, so he had the test results skewed by cutting me off my medication cold turkey in the hospital. This of course led to a tonic-clonic event that was solely due to withdrawals from my medication, not actual seizure activity. The test was set to end as soon as a tonic-clonic event took place, so that was all the results I got. Nothing good at all came of that.
Staying in the hospital with no responsibilities for a week may sound enticing to some, but laying in a bed for days on end is mind numbing and boring. Even with fun things thrown in the mix like playing games on my laptop or diving down the rabbit hole that is Youtube comedy specials.
The brain scans I've undergone to this point are enough. I know there are those who will go through any number of them in search of an answer. I am not one of those. Yes, taking medication twice a day every day for the rest of my life sounds pretty terrible. But I think test after test for the rest of my life sounds even more terrible.
So those in the medical community who are having issues with epileptics not wanting to take part in their tests and studies may want to take a deeper look before condemning us and calling us lazy or undetermined.