Staying on the same meds? Changing meds? Timing? Pros vs cons

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Jun

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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.
 
Hi Jun,

Welcome to CWE! I've had seizures for 46 yrs. and over the yrs. I was on many different seizure meds but just a few yrs. ago my Epileptologist did a DNA test on me where they drew blood and could see the amount of enzymes in my liver along with my body chemistry and this showed I was drug resistant to all seizure meds out on the market right now. If you ask to have a DNA test done the Dr. will be able to tell you what seizure med is the best for you with the least side effects.

Everyone is different when it comes to changing seizure meds some people it doesn't bother while others may have a couple of seizures until their body has gotten used to the drug change. A lot of it has to do with the amount of time a person has been on the drug and how serious the seizures are. I took tegretol for many yrs. and when I went off of it I had a few seizures until the new drug I was taking was in my body. When I went off of Depakene my Dr. put me in the hospital for a couple of days because I had been on it for yrs. and you may want to speak to your Dr. about this also.

Do yourself and your Dr. a favor and start keeping track of any seizures you have write down the type of seizure you had and the time it happened by doing this the Dr. can often see a pattern in a persons seizures or if they have more seizures at certain times of the yr. I wish you the best of luck and May God Bless You!

Sue
 
Q1: Is there a problem with continuing on the current meds? For instance, my wife took Dilantin for many years. It worked great for many years. But after many years, she "became sensitive to it" - the range for therapeutic dosing seemed to narrow and she was frequently finding herself on the low side (insufficient seizure control) or high side (toxic dose - increased side effects). It became unmanageable.

Q2: Are you satisfied with your current Quality of Life? How does your existing seizure activity impact your life? How about any side effects from the meds?

AED roulette is a gamble. Whether the risks of playing the game are worth it or not depends upon your personal circumstances.
 
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