I met with my neurologist this morning to discuss the best course of action going forward seeing as I am continuing to have seizures, even after removing 95% of the stress and distraught in my life 🙂 🙂
For now, we are just increasing the dose of my meds and then will regroup again in a few weeks to see how I am doing. Can’t wait to start taking a higher dose!!! The last time I had a dose increase I slept 12-14 hour days for a MONTH (tax season was REALLY, REALLY rough this year – I could barely keep myself awake most days but I managed to get all of my work done on time, thank god)
ANYWAYS, my neurologist said the first stages of epilepsy (especially when diagnosed later in life) are always the hardest because my brain/body are actively changing, there’s SO many unknowns, and it just becomes a waiting game of seeing if medications work. It doesn’t help I’ve been alone during every single one of my seizures so we have no idea what kind of seizures I’m even having, how long they last, or even how many seizures I’ve actually had… I know of 5, but considering each seizure wipes my memory, who knows how many I’ve actually had ¯\_(ツ)_/¯
right now it just feels like my life is in a holding pattern while we wait and see if we can get my seizures stabilized. and it really fucking sucks, because there’s a LOT of things I am no longer allowed to do anymore at the risk I have a seizure (especially if alone). And hell, even if I forbid myself from even getting out of my bed for the next 6 years, I could still die from a seizure solely from a not-so-cool thing called Sudden Unexpected Death in Epilepsy (SUDEP) – which is literally what is sounds like, sometimes perfectly normal healthy people can just randomly die during a seizure with no apparent cause. it’s just a fun thing I’ve had in the back of my mind ever since I went down a Google rabbit hole after being diagnosed with epilepsy earlier this year. 🙂 🙂
but yes, anyways, for the foreseeable future, I am banned from many fun things, including (but not limited to):
- Driving
- Living on my own
- Traveling on my own
- Taking a bath
- Swimming
- Roller skating
- Using an open flame
- Using power tools
- Climbing ladders
- Rock climbing
- Skydiving
- Bungee jumping
- Scuba diving
- Roller coasters
- Rodeo
- Parachuting
- Skiing
- Surfing
- Hot yoga
- Extreme sports
- Drag racing
- Dirt bike racing
Honestly the main thing I am pissed about is not being able to do literally anything on my own – just in case I have a seizure (especially because I had one while driving on the highway and one while in the shower, so I truly am a danger to myself right now lol). But I have so fiercely fought for my freedom and I love my independence. I love traveling by myself and going on adventures. I love being able to do whatever I want, whenever I want.
this is so fun!
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