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New to the Group

Tue, 05/05/2020 - 16:47
I am new to support groups in general; this one, in particular. My post concerns my sister who expereinced a horrific accident 35 years ago and began having mild seizures afterward. She was very successful in her field. The seizures were mild and infrequent. She had the ability to tell when a seizure was imminent, would excuse herself to the ladies room (if at work) and get through them within 2-5 minutes. This consisted of sitting, or standing, and focusing on her hand making a fist, and releasing the fist, over and over until the seizure passed. They were little more than annoyances until she had one while driving. Her license was suspended, only to be reinstated if she could remain seizure free for 6 months. She was unable to accomplish this, and made it her mission to study, research and speak with her doctors regarding surgery to stop the seizures. Clear on all the pros and cons and VERY adament, she went forward with surgery and came out on the poorer end. Over the past 10 years she's gradually become someone her family no longer recognizes, her husband doesn't know how to deal with, and a woman who's argumentative and suffers from SEVERE short term memory loss. I'm sure you're aware there is no medication or cure in sight regarding her memory loss. So, my question is: anyone have a similar experience? and how do you cope? Any suggestions as to how we might cope better? Sadly, I avoid her more than I should, because the visits or telephone conversations are extremely frustrating. She can't recall that we just visited yesterday, or that we had a telephone conversation this morning. And gets very belligerent if we mention that she's incorrect. Anything we can do that might help her situation and, if not, ours? I appreciate any thoughts you may have. Thank you.


Hello. I’m a licensed

Submitted by Patriotrehab on Wed, 2020-05-06 - 01:43
Hello. I’m a licensed clinical social worker as well as a person with epilepsy. It sounds like you and your sister have been through a lot. My epilepsy started as a result of what is considered an acquired brain injury (posterior reversible encephalopathy syndrome aka PRES). I still struggle with memory, but one of my neurologists agreed to do an experiment on me because there’s some research that supports this and it worked on me. In fact, one time I tried stopping it for just a couple of weeks so that another doctor would try something else with me and I had to go back on it because it was so obvious how much I needed it. Anyway, the medication the experiment was done like this...they did a full neuropsychological evaluation and then they started me on a trial of Aricept. I started off on 5mg for 30 days, then titrated up to 10mg. I was on the 10mg daily for 6 months before they did another full neuropsychological evaluation again. I improved significantly in many areas (especially memory) even though I still had significant deficits. I’m now working with my doctors to see if we can do a trial of ADHD medication because there’s evidence that shows that may help me too based on my neuropsych testing. It’s my understanding that while Aricept is not approved by the FDA for treating epilepsy or brain injury related memory problems, it is used as an “off label” treatment by many neurologists when done the way that my doctor did it for me. It helped me get through two masters degrees, my licensure exam, and national certification, not to mention it improved my quality of life. There are other similar medications too that are used “off label” if that one is contraindicated for some reason. I hope my story helps you and your sister.

Hi,Thank you for posting. It

Submitted by Anonymous on Wed, 2020-05-06 - 09:46
Hi,Thank you for posting. It sounds like you all have been through a lot and we understand this must be very challenging and know you want what is best for your sister and your family. It’s important that you all are continuing to express your concerns to healthcare team. Be open and honest with her doctors about the impact of her memory loss and how this affects you, your family and daily life. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be related to a number of issues,including side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit: . If she has not already, you sister may want to consider seeking more specialized care 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 her.Epilepsy centers can also help connect you with additional support groups, educational sessions and connecting you with other families.        Ask her doctors about getting a referral to a neuropsychologist, for neuropsychological evaluation, like Gianna shared in her comment. Neuropsychologists can evaluate cognitive issues and adequately determine individual strengths and weaknesses. In addition, you may want to ask her doctors torefer you all to other members of the healthcare team, such as psychiatrists,or social workers, who specialize in helping people with epilepsy and their families to improve their lives and can provide additional support. .It’s important remember that you are not alone, and we are here to help support you and that you’re and making your health and overall well-being a priority. .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, , or contact your local Epilepsy Foundation: 

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