Doctors are human, they make mistakes too. Let me explain. First of all, as a nurse I work beside doctors and have been doing so for quite a while. I have learned from patients that lots of patients believe doctors are almost like gods. They think they know it all, cannot make mistakes and are the cure to all their problems. This is a huge falsity. I have seen doctors make many mistakes, both big and small. I have seen them question their orders and be very unsure. I have also seen patients properly advocate for their health and end up with orders that are way more suited and beneficial for their problems. It’s also just not as black and white as one would expect.
When I was just starting off, I definitely did not do my own research and advocate for my health properly. I regret this. My doctors and nurses probably loved it as I was way more quiet and compliant then I am now. One thing that caused me to become less trusting was when I was prescribed a medication that was 100% ineffective with my anticonvulsives. It was prescribed by a fill in doctor for my family doctor. This is just one of the examples that I have.
You have to do your own research. On my own I started to record my seizures; not just how many I had each month like my neurologist wanted, rather when they happened, what I was doing, how I felt before and after, what I ate, what time of the day etc. Like EVERYTHING. I was looking to see if I had triggers or patterns. From this I saw that I have my seizures always five days before my period. Me and my boyfriend looked it up and we saw that I have what’s called cateminal epilepsy where it is hormonal based. Now I am able to estimate when my seizures are and carry out a more functional life. I wouldn’t of found that out if I didn’t take the responsibility to do so. And it’s next to impossible for my neurologist to figure this out on their own.
You must advocate for your health as anticonvulsives are not an easy drug. Im starting to believe anticonvlusives are some of the most dangerous drugs out there. They are just like antidepressants as both are messing with your mind. It affects your mood, thoughts and actual personality. Oh and you can gain weight, be immunosuppressed and basically every possible symptom out there. The worst to me is it can actually changes the person you are and I have experienced that. You may think I am being dramatic but I believe I am probably making it sound less dramatic than it is. So- do your research, ask questions and actively pay attention to the effects! Or even just mentally prepare yourself for what could happen, then explore possible solutions. Is the medication worth it? What makes it worth it and not worth it? If I didn’t do this, I couldn’t even imagine the struggles I could be facing now.
It’s like you are your doctor are in a partnership. Treat them with respect but also put in the effort yourself. It is not only their job to make you better, so don’t put it all on them. When they suggest something and you comply, carefully examine the results so you can come up with a better plan if needed. The more effort you put in the easier it is for them too. Now my neurologist will prescribe something and he knows Im going to talk to groups who’ve used it and pharmacists. I do not use google as a source as it can scare you for sure. I find groups are the best sources of information as they will give you both the pros and cons to the medications. Google tends to just give you the extremes. My neurologist will also let me know that if I do not like the medication he will make sure that I can switch to try a new one because we have created a respectful and understanding relationship of trust.
I have not made this post to make doctors sound like bad people. I just believe it is your body, you have to take ownership for it as you know it the best and you can’t expect your doctor to know everything. It is an active, tiring and very difficult process but the reward will be so much better if you decide to put the effort in. I have taken responsibility and ownership. It’s about taking risks after determining it is worth it and setting yourself up to be able to expect its risks with a plan. Don’t enter blindly. Right now I am still having seizures but proudly still loving my life.
Alone we can do so little, together we can do so much