Community Forum Archive

Hi, Thank you for posting and for sharing your story. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy . You all may want to consider seeking more specialized care for your son at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan maybe best for him. Epilepsy centers can also help connect you with additional support groups, educational sessions and connecting you with other families.  https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . You all also may want to consider keeping a journal or a diary to help keep track of his seizures, medications, and more by using a diary or a journal. My Seizure Diary, can be used to organize his health issues,record medication side effects, develop seizure response plans, and more, which can be share with his healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents . Additionally,you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. The majority of people who have epilepsy are able to have their seizures controlled with medication and some simple lifestyle choices to be sure that they don’t do things that are contraindicated (e.g. alcohol, sleep deprivation, excessive stress or over exertion, scuba diving, etc.). Many people with epilepsy live very productive and normal lives and are fine after the seizure is over. For some of us, we face more challenges in life and there isn’t currently a treatment option that works. Even still, many of us with what is called refractory or intractable epilepsy are still able to have lives with meaning. My epilepsy started nearly twenty years ago as a result of medical negligence while pregnant. The complications resulted in a brain injury that caused seizures to occur from four lobes in my brain along with cognitive deficits. I never gave up though and I graduated from college with a bachelor’s and two masters degrees. I’m currently trying to get a few more things in place though because my seizures are intractable and my cognitive impairment can benefit from some additional medication, so I’ve had to change doctors to get a new perspective. It’s all about finding a team of doctors that your son feels comfortable with and ensuring that you’re working towards the same goals. 

Thank you Gianna, for sharing your motivational story. The doctor already switch my son's medication, hopefully this will work. I am just worried about the mood and behaviour changes, considering he is a teen it is hard to discuss with him and due to the lockdown he is not able to see/talk to him friends as much either.

Thank you, will do that.

Thank you Gianna, for sharing your motivational story. The doctor already switch my son's medication, hopefully this will work. I am just worried about the mood and behaviour changes, considering he is a teen it is hard to discuss with him and due to the lockdown he is not able to see/talk to him friends as much either.

Are you still on medication? If No, How long  did you have to take it?

Yes and I will likely have to take medication for the rest of my life because epilepsy is a chronic disease. There are very few people who don’t have to take medication for epilepsy after they have a confirmed diagnosis and their seizures are controlled with medication for a number of seizures. Those that are able to go off of the medication are those whose epilepsy starts in early childhood and the person “grows out of it” or the seizures are isolated to one or two small areas of the brain (often with a specific cause) that can be resolved with surgery. For those where there is no known cause or the seizures are not isolated to one area of the brain, medication is the preferred method of treatment and it is typically throughout the person’s life. There are some neurologists that will try to take a person off their medication if their seizures have been controlled for a number of years, but in the majority of cases...the person ends up having seizures again and the patient becomes upset and ultimately changes doctors. I’ve tried going off my medication before and I’ve had seizures without the medication.