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Epilepsy Action
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Doctor Betrayal

I almost feel like I have been betrayed by not, one, but at least two neurologists that I have seen over the past few years. They convinced me to go on two medications that I wasn't sure about, but I followed their instructions and took the medications to the best of my abilities. I have taken the medicine for years now, but what I have noticed is that I have received very few blood tests. The occasional test regarding how much of the different medications are in my blood stream, but nothing more thorough than that. Well, recently I started seeing a new Internal Medicine Specialist as my PCP. She requested a thorough blood test because I'm in my mid-30s... The time for all things good to begin... Well, my ammonia levels were twice as much as they should have been and at critical levels. I didn't know this could happen or how to understand if it was happening. I was always very open about any side effects, but just basically brushed off. What if the medication was poisoning me this whole time, and yet no one payed attention to look? From now on, no matter my PCP or neurologist, I will always remember and take from me this: only you can really control your own health. Read about your medication and ask questions if you have any, ask your pharmacy, your PCP, your neurologist, and even the nurses... Let them make sure you feel comfortable with what you are doing, understand what you are taking and it's side effects. Lastly, I will always remember to request a yearly comprehensive blood test around my birthday. It will be my birthday present to myself.

That is not my medical opinion, but my experience from dealing with epilepsy for the past dozen years at least. Good luck to you all.

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I can’t tell you how many doctors I’ve seen that have treated me poorly. When I first started having seizures, ER doctors drug tested me then acted shocked that my test came back clean, one insisted that I just needed to eat more and I would be fine. I refuse to experiment with seizure meds, I was prescribed some that gave me suicidal thoughts and it was so scary for me. When I told my neurologist what happened he just wanted to try different drugs, I asked him about the ketogenic diet and told him I wanted to do it. He said that it was impossible to get into ketosis without being in the hospital and if that’s what I wanted to do then he could not support my decision. Keto diet has given me my life back! I agree with you, we must take control of our health and we can’t blindly rely on doctors.

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I'm going to go to a dietician after the holidays, so I will definitely bring up the ketogenic diet as a method. Thank you for mentioning it.

I have been on probably 12 or so different medicines over the years and they all have caused either side effects or worsened the seizures. It has finally led me to get a VNS, but it is only minimizing the seizures slightly... With time, with time!

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I know what you are going through. Doctor after doctor. Then when you find the one you are comfortable with you are medicated with medication which has all sorts of side affects. You inform your doctor about them and they say it’s normal. Doctors should listen to us. We know more about ourselves then they do. They may be doctors but they really need to listen to us rather then focus on there expertise so much. We each are different. Now a days it seems no matter what all they tend to do is reach into their pocket and give a prescription to us without much of an explanation on the side effects. Even if you ask them. It is very frustrating. I know how you feel.

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