Husband Had first Seizure, worried as heck, should we be avoiding any foods?

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Hello everyone, a week ago my husband had his first tonic-clonic seizure. It has been legitimately the scariest, most anxious week of my life. They put him on 500mg of Kepra, and my whole week has been me having anxiety attacks over "what if" scenerios. What if he dies from this? What if it happens weekly? What if i'm not there? What if I AM there and panic so bad that I am unable to help him? What if he has another and it goes for more than five minutes??? What if when he begins driving again, he has a seizure while driving??? What if it happens when he's eating and he chokes!??!? etc. etc. etc. Anyway, the whole thing went over like this from what I've heard, as it happened to him at work. He works for an internet and phone company, and from his perspective, all he remembers is sitting at his desk with his hand on his cheek waiting for a reply from a lead... and then he "woke up" in an ambulance. After asking his co-workers, they told me he made a "nails on a chalkboard" sound that got their attention, and he was convulsing and foaming at the mouth. I do not know how long it lasted, they just told me "a long time". He apparently kept trying to stand after it was over and the EMT had to stop him from doing so. That day he told me felt "unusually good" and the only thing he had done different that day was drink a large cup of Green Tea. Over the weekend he had actually drank a lot of diet soda [way more than his usual]. When we spoke to the Neurologist, he asked us a bunch of questions because this is the first tonic clonic he's ever had. My husband and I have been together 8 years, and I mentioned to the doc that he's always done this thing where he suddenly stops, rubs his fingers together, gets nauseous, has "deja vu", sweats, and then becomes partially un-responsive. He'll hold up a finger as if telling me to wait a second, but then won't remember what i've asked him/doesn't respond to me during that time period of about 10-30 seconds. He has been checked in the past for it but doctors kept telling him it was "just anxiety" when I kept tellling him it made me think of seizures and that he should see more doctors with more definitive answers - and then proceeded to put it off for two years. Then this neurologist says that it is, in fact, seizures... Being the worrywart I was, started looking up things that could have triggered it, and I have told him no more caffeine, no more aspartame, no more splenda [sucralose] and we have since bought him decaffinated tea [that's his favorite drink in the world]. This means that he hasn't had coffee, soda, mio, or tea and he keeps begging me to let him have some. we have an appointment next week to see a neurologist, and then another on the 9th for an EEG. I keep telling him no but I just feel so bad!! I know for a fact he can't have aspartame anymore as it does effect the kepra he's on... so no more diet soda's. I'm just at a loss and scared, so I guess i'm looking for advice or thoughts on if I should have him avoiding anything in particular. Thanks!!

Comments

I don't have trouble with

Submitted by birdman on Sun, 2019-08-18 - 12:12

I don't have trouble with caffeine and I don't drink diet but here is a conversation between some people who have had seizures from aspartame https://www.epilepsy.com/connect/forums/new-epilepsycom/aspartame-and-seizuresIf you are interested in looking up more information on the subject the term is "seizure threshold". Anyone can have a seizure but those of us with epilepsy live with what they call a "reduced seizure threshold". Increased stress and lost sleep can reduce that seizure threshold more. I just had several brain operations and was given a script for I think it was hydrocodone acetaminophen for the pain. I had more seizures and then I did a search and found it is likely to reduce seizure threshold so it was no surprise I had more.I don't see much about foods that lower seizure threshold. I just find lots about how the high fat "Ketogenic" diet may help some people increase the threshold. Mostly the Epilepsy Foundation always supports eating a balanced, steady diet.

Hi Soren49, Thanks so much

Submitted by Anonymous on Mon, 2019-08-19 - 07:59

Hi Soren49, Thanks so much for posting, we understand this can be very scary and upsetting to experience. We cannot determine what caused your husband’s seizures, so it’s very important that you all continue to follow-up with his healthcare team to determine what treatment is best for him. 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 epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways. Learn more about triggers andseizures here: https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-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.pdfThe Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools 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 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 to 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 You 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: https://www.epilepsy.com/affiliates can help you find resources, support groups,events, and programs in your community.

Hi Soren49, Thanks so much for posting, we understand this can be very scary and upsetting to experience. We cannot determine what caused your husband’s seizures, so it’s very important that you all continue to follow-up with his healthcare team to determine what treatment is best for him. 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 epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways. Learn more about triggers andseizures here: https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-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.pdfThe Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools 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 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 to 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 You 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: https://www.epilepsy.com/affiliates can help you find resources, support groups,events, and programs in your community. 

Hi Soren49, Thanks so much for posting, we understand this can be very scary and upsetting to experience. We cannot determine what caused your husband’s seizures, so it’s very important that you all continue to follow-up with his healthcare team to determine what treatment is best for him. 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 epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways. Learn more about triggers andseizures here: https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-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.pdfThe Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools 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 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 to 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 You 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: https://www.epilepsy.com/affiliates can help you find resources, support groups,events, and programs in your community.

Avoid caffeine, if he plays

Submitted by Twistdstofgrace on Fri, 2019-09-06 - 14:15

Avoid caffeine, if he plays video games or watches shows with and strobe effects this could also cause a seizure