← Return to Medication management issues for my daughter - suggestions?
DiscussionMedication management issues for my daughter - suggestions?
Epilepsy & Seizures | Last Active: Jan 17 9:24am | Replies (15)Comment receiving replies
Replies to "Good Morning @closetmonster93 I was in a similar situation in 2019 and 2020. At that time..."
@santosha your situation sounds so much like mine. It’s almost Erie. I had been seizure free for 30 years. In 2016 I was severely attacked and suffered brain trauma. I didn’t start having seizures at that point in time I had severe migraines that were uncontrollable and many of the doctors over 12 of them could not fix the situation. I exhausted every possible medication and therapy known to me. In 2019, I was at work. I don’t remember driving to work, and I started to feel this very strange aura, and or like before you have a seizure. I had a tonic chronic seizure that lasted over 10 minutes, it nearly killed me. They almost didn’t get me to the hospital in time. The doctors were amazed I was still alive. The doctor I had at the time was completely a knowledgeable and ill prepared for such a thing. He was a neurologist, but that he was a mobility specialist so he was not adequately prepared for my situation or what was to unfold after. I had to fire him immediately because he refused to do anything, while I waited to see the epileptologist, who would then take my case. However, I had to wait over six months. In that time. I lost my job, I became increasingly worse, and the seizure activity was worse than it had ever been in my entire life. The epileptologist saw me one time, and then he pawned off on his PA. She did not have the fellowship. She did not have the degree. She did not have any experience whatsoever. It was probably the most difficult times of my life because I could not get the help I needed. She would prescribe drugs that I should never have been on because of other existing health conditions. She had no checks and balances as far as the medications that she was prescribing, and it was really a disaster, waiting to unfold in greater capacities, which it did. I was later told by a physician, that many of the meds she prescribed I should never have been on, and they only made the seizures worse. I fired the epileptologist, and waited to see another neurologist, there is only one epileptologist here where I live. In waiting for the new neurologist, I was threatening and verbally, abused, and sent away with no medication’s or any medical care. The hospital did nothing. I waited a year for a new neurologist, I barely had enough medication to hold me, and the pharmacy and a neurologist that had never seen me before worked with me until I could see a new neurologist take my case on. The neurologist I have today is no better than a lot of the other neurologist I’ve had. He does not listen, when I present questions and medical journals, substantiating my concerns, questions issues and experiences he mocks me. He is arrogant and doesn't listen to the concerns. I have no one else to go to in the place where I live. Nobody else in this area will take my case. He is the last neurologist that will take my case. I have pounded the pavement extensively trying to get help for my situation and have been turned away from almost every neurologist in this area, claiming my case is too complex and they do not have the capabilities or resources to be able to deal with it. I really like your idea of possibly doing what you have done, but I don’t know even where to begin. How did you manage to get a epileptologist to treat you online? I’m not sure that this is something that they would do for me here although I am not opposed to trying it. I’ve had to advocate a lot for myself because the doctors will not advocate for me, and if that means doing the research and looking elsewhere, I am will make it happen. How did you wind up finding somebody that would treat you online if you don’t mind me asking?