You don’t need to explain or justify your feelings to anyone. Just trust your gut and follow its guidance. I recently made the mistake of not trusting my gut. Instead, I trusted my neurologist. Let me explain.
I won’t get completely into it but it has been almost ten years of being with the same neurologist. I have been left feel nothing but hopeless, confused, lost and alone. The trust is completely gone and is past repair. I will not explain what has built up over time to cause this. Rather, I will explain what was the breaking point.
I was previously put on a medication called Keppra. When I was on the medication not only did I go from having 3 seizures a month to 3 a day but also my personality completely changed and I wished I was dead. Before I took the medication I absolutely loved my life. I quite quickly took myself off of the medication against my neurologist and his nurses’ advice. Somehow, even though my seizures stopped and I was happy again, they got mad at for doing that. I still don’t understand how they managed to justify that.
Six months later I was given a speech on how I should try Keppra’s sister drug called Brivlera. My neurologist promised me that the same thing would NOT happen even though they are sisters. I was told it would have no psychological side effects. I spent months doing research. It was a brand new drug with very little information to obtain. I finally agreed to taking the medication. I was told I would get the appropriate support next time if anything goes wrong. It is a medication that is about $800 a month so I had to get health insurance and wait for that.
Just before my insurance was approved I decided to look up my neurologist. Under his name it says he is in a “post marketing trial of Brivlera”. This made me wonder if there were any extra reasons why he chose this medication. It is a speculation but I still don’t really know. I decided to take it anyways.
Initially I had an insensitivity and itched my skin raw. I was told to continue. Next, I increased the dose and I had over 22 seizures in 5 days. The nurses tried to blame it on my lifestyle by saying it must be ‘situational’ or a ‘coincidence and told me to stay on it’. My family also told me to listen to the nurses and neurologist and just stick it out. I cried every day, almost all day, even when I found out my parents won the lottery. I was a different person. Against medical advice, I took myself off of the medication. The next day I cried with happiness to feel myself again and didn’t have another seizure for at least a month. Coincidence? I think not. I felt like I had PTSD.
It made absolutely no sense to me. For example, if you take a medication for nausea and the medication causes you to be more nauseous and throw up do you continue to take it? Of course not! It is not complicated.
Over a week later when I spoke with my neurologist lets just say it was a long and heated conversation. No sympathy or accountability. Yes, he agreed I made the right decision to stop. Anyways, this is not meant for me to vent about my neurologist or it would be a much longer blog. My point here is that I know my self the best. I care about myself the most. I have learned to advocate for myself. As someone who is pretty feisty, it scares me the thought of someone who isn’t feisty being in my position. Without a backbone and ability to fight I would be a complete mess. I would be a prisoner to the drugs by now.
When taking anticonvulsives one must have a great amount of self awareness. You must be able to recognize when it is NOT your fault like you may be told it is. When the medications are effective, one must be able to ask themselves if it is worth it with its horrible side effects. I tell myself all the time that I would rather have 3 seizures a month and never drive rathe then experience the majority of the side effects of anticonvulsives 24/7. I am not recommending this. Everyone is different. Therefore everyone must know their limits and what they are seeking. Its okay to set your goals high. Every failure is one step closer to success. So don’t give up. Don’t accept misery. Approach it with caution and the readiness to put your fists up when needed.