Always Be Honest With Your Doctor
It is hard to face certain things concerning epilepsy. One of epilepsy's biggest challenges? Medication.
Every medication has a different effect on every person. What controls seizures for one person might not control seizures for others. Likewise, 1 person may have side effects to a medication that another person may not have. Never compare yourself to the results that others had.
Being honest about our seizures
But we have to be honest about our seizures. Do you have back-to-back seizures, one after the other? Do some go on for several minutes? Are more seizures happening than usual? We have to be honest with ourselves first when we know something isn't right.
And I get it, admitting something is off can be scary. This could mean your doctor will want to change your meds. And changing medications can be really hard.
But I don't want my doctor to change my meds...
You're not alone if you dread the idea of changing epilepsy medication, thinking how much worse your side effects could be. But if you're facing increasing or worsening seizures, you have to face the truth of what is happening, and how serious the outcomes could be if you don't address it with your doctor.
It's not worth lying to yourself or your doctor because you don't want to switch medications.
When seizures increase
Since I was diagnosed at the age of 6, my medicine has changed many times. I always take the advice of my doctors to tray another medicine if needed, or if one needs to be added to what I am already taking.
But I had fear of Onfi (clobazam) when my doctor recommended it to me. I was afraid of the side effects and it affecting my emotions.
Then came the day that I had 2 tonic clonic seizures – which is very rare for me. I have focal epilepsy. Tonic clonic seizures usually only happened if I have a fever or if my levels of phenobarbital were too low.
I know I need to listen to my doctor
A day after being admitted into the hospital for my tonic clonics, my epileptologist came at 8:00 in the morning and asked me with a smile on his face, "Now are you going to take Onfi?" I then thought about it more, and finally agreed.
Did adding this medication to my treatment plan help? Yes. And after doing so, it appeared that central nervous system (CNS) depressants help me the most. I needed to listen to my doctor's treatment recommendation. But of my seizures had continued to be severe or I had serious side effects, I needed to keep my doctor in the loop.
Have an honest relationship with your doctor
Don't lie to your doctor – because then there will be no way they can truly help you. He or she can't know what is happening unless you tell them. Giving your doctor the full picture will inform them what is taking place, and they can think over what changes may need to happen. This includes what medication should be attempted and why.
The other piece of being honest with your doctor is taking their recommendations seriously. Are you open-minded to trying something that could help you? Or shutting it down right away? When I shut down my doctor's recommendation, I ended up with 2 severe tonic clonics and in the ER.
Facing the unknowns with epilepsy
But of course, none of us have the psychic ability to know what will happen. Sometimes we have to take a risk – such as new side effects – in order to see if a medication could help our seizures and quality of life. But finding the right treatment can be a bit of guessing game.
I was on 19 drugs before my seizure were well under control. How many different meds did it take for you? Few of us will have the same treatment journey, but I know most of us can relate to hating the unknowns. But I guess that's what we have to face in order to live safer lives with epilepsy.
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