Community Forum Archive

Hi, Thank you for posting, we understand that must be very upsetting for you all to experience. It’s important that you all continue follow-up with her healthcare team to determine what individual treatment plan is best for her and if she experiences any changes in side effects, seizure types, frequency,behaviors and symptoms. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid &safety, & find self-management tools. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed. Review our women and epilepsy section of our website with your wife, to learn more about issues that are unique to her as a woman with epilepsy. https://www.epilepsy.com/living-epilepsy/women Create a seizure responseor action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your wife to understand what to do if she has a seizure.  Use a journal or diary, to track her seizures, record medical history, manage medications, side effects, moods, triggers, or other personal experiences. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with her doctor, to see if a seizure alert device is an option for her:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfAdditionally, 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 contactus@efa.org. epilepsy.com/helpline  

I know it can be very hard having a spouse with seizures. My son is 6 now but i find being honest with him is the best choice. He understands that his dad gets sick sometimes and he actually even helps me when his seizures happen. That he knows what to look for, since my husband grabs and gets aggressive sometimes let's him know when to get help if I'm not in the same room or dont see. His dad's epilepsy is medication resistant and surgery isnt an option so I think it's best he knows so that he also knows when to get out of reach and call help. As a spouse its difficult, you hope things help and try to support your partner but it gets tough and my husband gets stressed and embarrassed when he comes back from a seizure. I think it depends on the person but I reassure and crack jokes with him because he is very centered on humor. It still bothers him bit there's nothing I can do just be there if and when he needs to talk. 

Hi, my wife has seizures every day, ones where if she doesn't get to the floor she falls over. She has them when we are out about, could be  anywhere, e.g. during a movie at the cinema etc. I totally understand and have done the same thing, where you try to comfort by making the situation more light, sometimes not giving it too much attention, but being a bit more like "oh it's fine don't worry about that" and continue with whatever you are doing at the time. My wife is often embarrassed if we are in public, but in the 10 years I have been with her with these seizures I am learning to accept that this is our lifestyle and we adjust to it. We have a 5 year old who gets terrified of the seizures, especially the grand mals and the cluster seizures, when this happens I have always kept him busy, I ask him to get the phone to call 911 or to grab a towel, just anything that keeps him active and not just staring at his Mom. It is heartbreaking to see him go through this type of stress so young, I work from home to help my wife and almost weekly I will hear him shouting for me when a seizure is happening to come from my home office. He has learned from an early age that people have health problems and to be aware of that, I think as much as it is a hard thing to always be around it has made him a very caring and considerate little boy. We try to make an effort to do special things for my wife to lift her spirits. In the last 2 months he has seen his Mom be taken by ambulance 4 times due to non stop seizures, cluster seizures. I think the best thing for my family has been to be hopeful and patient and to not show my wife and my son how much it worries me. It is a heavy weight to carry for a family and especially for the person who has epilepsy, they may feel like they're a burden and from my experience you don't want them to feel like that, because it isn't true. I feel like personally these health issues as much as they are very difficult, if you can approach them with a different perspective, they can be a blessing, because they can help you appreciate the simple things in life and deeply appreciate each other. I think your family will only become closer and stronger because of this. Don't give up on finding a medication or way to treat the seizures. We have been on that mission for 10 years, and my wife 20 years now. I think from what you are saying you are all doing an amazing job for your wife! With these things there doesn't seem to always be a quick fix, it might take a while, but continue to make the positive efforts and keep your hope alive.