Community Forum Archive

How to deal with possible triggers

Sat, 07/20/2019 - 04:50
My husband had his 2nd seizure last monday. His first was 3 years earlier and I had fully accepted it to be a 1 time thing. Because of this second seizure, my world litterally came crashing down. He went to the hospital, had an EEG and they saw some activity. He is on Keppra (2x 500 a day) and says he feels just fine. Wants to get back to work and act as if nothing happened. They didnt find a reason for the seizure, but he says it must have been lack of sleep (he only slept 5 hours that night before) and possibly stress (lots of things changed this year - new job, i am 30 weeks pregnant with our first etc). The doctor said that a good schedule is important and that an irragular work schedule might increase chances of a seizure. He is not allowed to drive for 6 months. How do I deal with triggers? He has grand mal seizures and I am terrified of them. Both times he was near me, but I can't let go of the feeling of "what if". Whaf if he has them after the y month no driving period in a car while driving on a highway of near water? What if he is holding our baby? What if he is walking the stairs or fishing?? I am obsessed with him having at least 8 hours of sleep, and preferably even more. I am obsessed with not stressing him and thus I don't talk about my things anymore (pregnant and autistic, it's hard). I cam't vent, I can't sleep, I can't accept his work schedule (6 days of work, first 2 days from 6am to 2pm, 2nd 2 days from 2pm go 10pm, last w days from 10pm to 6am, then 3 days off). I am terrified of having our baby soon, who will surely mess with our sleeping schedule and quality. I can not do nights on my own, as I too am badly sleep deprived and stressed every day. Even more so since last monday. So, how? How much do I need to take his schedule and life into consideration? Can 1 day of broken sleep cause a new seizure? How do I deal without getting lost myself?

Comments

One of the things that helps

Submitted by Jazz101 on Sat, 2019-07-20 - 16:14
One of the things that helps when dealing with challenges involving individuals close to you is to pause, and then swap places (figuratively, off course).I get what you are saying. Your concerns are legitimate. That said, pretend for a second that you are in his place. How would you prefer him to approach you? Overly guarded? Or guarded but not overly guarded?A lot of life when dealing with individuals comes down to meeting them halfway. By that I don't mean say yes to every thing they want. No.But when individuals have to work together, sometimes selective negotiating has to take place. In essence, you both meet each other halfway. Relationships without medical issues have their own challenges. And it usually comes down to what he conversation between both sides are like. At times personalities will differ from issue to issue. At times there are no straightforward answers. Put it this way, it's like me when I was undergoing surgery. The neurosurgeon usually tells the patient that we are looking into the best available option.What that means is that there are many other things to factor in when undergoing surgery. How close is the focal area to language and speech and memory? And, if it is close, we have to be selective as to how much of that area we can remove.Same with a relationship. Don't look for a "perfect" answer. Look for your "best available answer" after factoring in everything, be it his job; the up and down sides to his personality; what made you interested in him to begin with. As you sit down and look at the entire picture, you might have a better way for figuring out if maybe you  might be worrying too much. I'm not saying you can't worry. I'm just saying try to figure out if there are areas where you might be worrying too much.In the areas where you have legitimate concerns, well, try to have conversations with him without making it seem like you are robing him of some of his independence. The point? Be firm where your concerns are not overblown. Like I said, at the end of the day, only the two individuals in the relationship really know the whole story. What I will say to you is try to minimize overwhelming yourself with worry especially given you are having a baby. If you find you are, then don't be afraid to speak with your doctor about it. They can probably give you some guidance by getting you in touch with specialists who deal with situations like this. Best Regards

Hi Biancavd, Thanks so much

Submitted by Anonymous on Mon, 2019-07-22 - 09:17
Hi Biancavd, Thanks so much for sharing your experience, it sounds like you all have been through a lot. It’s important that you continue to express your concerns to your husband's healthcare team and discuss any changes in seizure types, frequency, side effects, behaviors and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf  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.Learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy For additional information about triggers and seizures, visit these links: https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/learn/about-epilepsy-basics/what-seizure  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.pdf. Additionally,there are plenty of things you all can do to reduce these feelings and stay safe: https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Learn how to live safely with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your husband to understand what do if he has a seizure.Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his seizures, record his medical history, medications, side effects, moods,triggers, or other personal experiences. Have a Seizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips &resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org where a trained information specialist can connect you to resources,  provide referrals and additional support. epilepsy.com/helpline  Additionally, your local Epilepsy Foundation: epilepsy.com/localsupport,  can help you find resources, support groups, events, and programs in your community. 

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