New To This, Not coping well? Scared, confused..

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Hi all! I do not have epilepsy but my boyfriend (27) was recently diagnosed. April 2019 I came home and found him unconcious with puke on him in his car parked in the driveway. He had gotton home from work as a garbage truck driver/loader and had a tonic clonic i guess shortly after he parked his car. He woke up when I yelled his name for a bit and went to hospital where he was diagnosed with a bacterial brain infection and abscess in left frontal lobe. Had to have brain surgury to drain and test it. They still dont know why he got this infection its like a 1 in a million chance. Anyway cue to 8 months later being on Dilantin he seems okay but had some negative side effects (nausea, mood swings, dark urine). They clear him to drive, he goes back to work and 45 minutes into loading garbage (a very very physical job) he goes to switch with his partner to drive for a bit and has a seizure upon entering the truck. Luckily it was parked and he had not started driving. By all acounts from his work partner seems like another tonic clonic. In hospital his levels for dilantin are at half of what they should be even though they gave him a lot of it there and he had not missed his meds. Diagnosed with epilepsy from the damage/scarring from the infection and surgury. He is switched solely to Brivraceptram and he no longer has any negative side effects at all from this medication and seems to be doing alot better and is alot more himself overall. Everything seems to be going great until last night (2 months since last seizure) when I woke up to him having a 30 second or so tonic clonic in bed around 11pm (first nocturnal one ever). Goes to hospital just in case, but sent home like 2 hours later and told to call neurologist in morning. Waiting to see what they decide to do now as far as med adjustment etc. I am absoloutley terrified for his health and our future together. I am only 24 we have been dating for 5 years before all this. I love him more than anything and am trying to do everything I can do make life peaceful and stress free as I can for him. I have a job where i i am fortunate enough to work from home and he is currently off work on LTD. This is the first time ive seen him have a seizure. I was able to confidently handle it as it was happening but I am absoloutley terrified it will happen again especially when im asleep or away from home. I am terrified of leaving him alone (and being alone with him) and feel like im never going to sleep soundly again in case he has another. If anyone can offer me advice or something to get past my fears and resume normal life i need all the help i can get. I feel like i cant even function. Im also not sure if this means he will never be able to be seizure free because 2 meds havent worked now?? Or is it still possible?

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Thu, 2020-03-12 - 09:39

Hi, Thank you for posting, it sounds like you all have been through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in a caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfThe Epilepsy Foundation has many resources available that can help you find and build upon your support network, to better support you in your important role.Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates, to find support groups, events, and programs in your community, or contact our 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline . 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 . If you all have not already, you may want to consider seeking more specialized care for your boyfriend’s epilepsy 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 may be 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 .Tracking seizures, moods, and behaviors over time may help you all & his doctors to recognize patterns, allowing you all to modify behaviors or lifestyles appropriately. My Seizure Diary can be used to organize his health issues, manage medications, record side effects, develop seizure response plans, and more which can be shared with members of his healthcare team. Learn more here: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary. Additionally, there are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with his doctor’s to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping

Hi, Thank you for posting, it sounds like you all have been through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in a caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfThe Epilepsy Foundation has many resources available that can help you find and build upon your support network, to better support you in your important role.Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates, to find support groups, events, and programs in your community, or contact our 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline . 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 . If you all have not already, you may want to consider seeking more specialized care for your boyfriend’s epilepsy 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 may be 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 .Tracking seizures, moods, and behaviors over time may help you all & his doctors to recognize patterns, allowing you all to modify behaviors or lifestyles appropriately. My Seizure Diary can be used to organize his health issues, manage medications, record side effects, develop seizure response plans, and more which can be shared with members of his healthcare team. Learn more here: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary. Additionally, there are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with his doctor’s to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping

Hi, Thank you for posting, it sounds like you all have been through a lot. It’s important remember that you are not alone, we are here to help support you. It’s common for those who are in a caregiver role to feel overwhelmed. It’s also important that you’re and making your health and overall well-being a priority as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfThe Epilepsy Foundation has many resources available that can help you find and build upon your support network, to better support you in your important role.Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates, to find support groups, events, and programs in your community, or contact our 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline . 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 . If you all have not already, you may want to consider seeking more specialized care for your boyfriend’s epilepsy 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 may be 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 .Tracking seizures, moods, and behaviors over time may help you all & his doctors to recognize patterns, allowing you all to modify behaviors or lifestyles appropriately. My Seizure Diary can be used to organize his health issues, manage medications, record side effects, develop seizure response plans, and more which can be shared with members of his healthcare team. Learn more here: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary. Additionally, there are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with his doctor’s to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Thu, 2020-03-12 - 13:31

Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I agree with ConnectHelp that if you are not already connected with an Epilepsy Center and your boyfriend isn’t already being treated by an epilepsy specialist, this should be the next step in the treatment process. It’s great that he has the benefit of LTD through his employer. I’m not sure how his LTD benefits with his employer would be affected if he was approved for social security, so you will want to consult with them about it and see how long those benefits last. I do know that there is a five month waiting period without payment for SSDI and they are a month behind in payments so it is essentially 6 months before he can get a Social Security Disability Insurance payment if they approve him. Many people are denied the first time, but given his history he may get approved. After he’s been on it for a period of time, he is then eligible for the Ticket to Work program which works in cooperation with the State Vocational Rehabilitation agency. They can pay for retraining even college so that he can do a job of his choice after he spends some time working with his doctors on getting his seizures under control either with medication, devices, surgical options or some combination of the three. I’ve had epilepsy for nearly twenty years and mine started because of medical negligence that also caused brain damage. It’s only because in the last year that I’ve been connected to an epilepsy center that my seizures are nearly controlled. I wish I would’ve been connected to them in the first year too. I think you two have a chance for hope if you get connected there where they have access to high resolution MRI, video EEG monitoring, neuropsychological testing, and different medications. It’s important that your boyfriend also pay attention to other things that he may be experiencing too, but just what people observe. For example does he hear, see or feel anything different than what he used to before his injury and how long does it last. These may be focal seizures that happen independently or can serve as warnings for tonic clonic seizures. He may also be at risk for migraines because of the brain damage and may need to treated for those as a separate issue. I wish you the best.

Don't give up because the

Submitted by Misjoey101 on Tue, 2020-04-07 - 18:24

Don't give up because the first 2 meds haven't been effective. Most of us have had to try multiple meds to find the right pill(or combination). Sometimes that may mean a rollercoaster of side-effects. Not only that, there are other treatment options available if medication fails him. See a specialist. If things get bad, see if there are patterns and avoid those. Are there times in life when he performs certain activities and a seizure happens.(ex. I perform extreme cardio. Chances increase) Will certain things in his lifestyle make things increase?(ex. less sleep, extreme heat/weather, etc.) And go and see a specialist. I am an epileptic. My parents and siblings should be talking to you rather than me. But, as the epileptic, I can say this: keep an eye and still have him feel independent. My mom was afraid of my sleep but, it annoyed me that she kept a baby monitor in my room until I was 13. Try not to be controlling because I think that will annoy him(or at least it annoyed me and still does).