Hi there,
Currently 33, I’ve been on two meds (tegretol and clobazam) for the better half of 17 years, which is also when my seizur3s started.
I’ve never gone a year withou5 having at least one seizure. If someone asked me how frequent my seizures have been over these 17 years, I really couldn’t give a number because maybe one year I would have 2, and maybe another year, I would have 10...kind of like a roller coaster. One thing I can definitely say is that I’m not the type of person who has seizures on a daily basis. The more frequent time I had seizures was when I was a university student (ie: a stressful period in my life, lack of sleep, and not being educated about potential triggers) .
My concern is basically like what anyone else is concerned about. I’m scared of changing medications. Generally, I feel okay on a regular basis...the only times seizur3s have occurred, was when I let triggers get the better of me, such as lack of sleep or too much caffeine...just to name two examples. But there are other times when I just have a breakout seizure for no reason except it’s just been a long period of time, and it’s like, I was due for a seizure.
Anyway, I’m just trying to weight the pros and cons to switching meds, and trying to figure out implications to my lifestyle, like what would happen if I have more seizures or side effects affect my work performance, which might end up getting me dismissed, and I hope you can see where I’m taking this. I don’t want change of meds affecting my lifestyleto the point that it flips my world upside down.
All of this to ask anyone, how do you process/deal/think through potential medication switches or staying on the same. I know each and everyone dealing with epilepsy has their own story and tolerance to seizures, which means I know not to base my decision based on one opinion. If anyone would be willing to share how they decide whether or not to switch meds, I would really love to know how you thought through it, as I know ditching meds is not as easy as doctors make it out to be (ie: cherry picking meds if one doesn’t work)
Many many thanks in advance for reading this and letting me know your story.
Currently 33, I’ve been on two meds (tegretol and clobazam) for the better half of 17 years, which is also when my seizur3s started.
I’ve never gone a year withou5 having at least one seizure. If someone asked me how frequent my seizures have been over these 17 years, I really couldn’t give a number because maybe one year I would have 2, and maybe another year, I would have 10...kind of like a roller coaster. One thing I can definitely say is that I’m not the type of person who has seizures on a daily basis. The more frequent time I had seizures was when I was a university student (ie: a stressful period in my life, lack of sleep, and not being educated about potential triggers) .
My concern is basically like what anyone else is concerned about. I’m scared of changing medications. Generally, I feel okay on a regular basis...the only times seizur3s have occurred, was when I let triggers get the better of me, such as lack of sleep or too much caffeine...just to name two examples. But there are other times when I just have a breakout seizure for no reason except it’s just been a long period of time, and it’s like, I was due for a seizure.
Anyway, I’m just trying to weight the pros and cons to switching meds, and trying to figure out implications to my lifestyle, like what would happen if I have more seizures or side effects affect my work performance, which might end up getting me dismissed, and I hope you can see where I’m taking this. I don’t want change of meds affecting my lifestyleto the point that it flips my world upside down.
All of this to ask anyone, how do you process/deal/think through potential medication switches or staying on the same. I know each and everyone dealing with epilepsy has their own story and tolerance to seizures, which means I know not to base my decision based on one opinion. If anyone would be willing to share how they decide whether or not to switch meds, I would really love to know how you thought through it, as I know ditching meds is not as easy as doctors make it out to be (ie: cherry picking meds if one doesn’t work)
Many many thanks in advance for reading this and letting me know your story.