Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Confused and Paranoid
Wed, 10/21/2015 - 11:22Hi. I am new to the board and desperate for real advice because I am getting conflicting diagnoses from medical professionals. I am currently a 44 yo female who was diagnosed in the 1970s with epilepsy as an infant. My maternal grandfather was diagnosed in his early 20s and I am the only known relative to get diagnosed. From what my parents described my episodes began in infancy and ended in pre-adolescence. I know from stories that I did have some full blown convulsive seizures (remember waking up in the hospital a couple of times) and that I suffered from absence seizures as well as late as the second grade, about 7 years old. I do know I stopped all medications in 1979 or 1980 (I still have the letter from the doctor). Now when I give a medical history for whatever reason, doctors tell me I'm not epileptic, it must have been febrile, including my own PCP. Since I grew up with this piece of medical knowledge in my head I am truly confused. Am I epileptic or not? One of my biggest fears is that I am going to have another seizure and I won't know how to recognize it. I already suffer from migraines, vertigo, and photosensitivity. I'm afraid I would ignore it and make the situation worse.
Can anyone help me make sense of any of this?
Welcome to the clubOK here
Submitted by just_joe on Wed, 2015-10-21 - 15:09
Welcome to the clubOK here goes. TIME does make a difference. Absence seizures today were petite mal seizures back in1970.. Epilepsy does not need to run in the family.A person can grow out of it if they were very young which it looks like you posted. I would have gotten the same letter if I had stopped meds and no seizures.It took technology an all kinds of things hitting just right in the 1980's to get things changed which also made changes in the neurological field. Back in 1970 the neurologist treated everything stemming from the central nervous system. epilepsy is only one of the many that come from it. Neurologists went into their specialty and that is when major changes started happening.Just to give you a little history... In the 1960's they were still putting some people with epilepsy in homes away from the public. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license.febrile seizures or epilepsy can be grown out of. So depending on who you talk to would also make a difference. I have focal motor epilepsy along with Grand Mal Epilepsy and Petite Mal epilepsy. Some of the people in here do not believe I could see, hear, and understand everything happening in a focal seizure which went convulsive. Some think I don't know what I an saying. But then I tell them to go talk to my neurologists. Stop worrying and don't think about it. There are many people like you that grew out of their epilepsy. There are many who went seizure free for years too. There are many people who went seizure free for years and while weaning them off meds they had one but they raised the dosage to u=just about the level they had gone down to and are seizure free and have a wonderful life but still take meds. My Cousin being one of them.Relax and be thankful that you grew out of it.