Nocturnal Seizures

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Hi all, Im a 26 year old male that has had Epilepsy since February 2016. I had my first seizure in work while a manager of burger king so as you can imagine this was in a kitchen with extremely dangerous equipment. From there I had to leave my job as well as hand in my drivers licence, causing additional stress, disappointment and loneliness for me. I can imagine it hasn't been easy for anybody in my house as I live with my parent, sisters and nieces. My seizures have varied from dropping in the kitchen at home, dropping in work, seizures in passenger seat of friends cars, in bathrooms and quite a lot while im asleep. All of which have no warnings, signals or potential auras Im aware of. I have had quite a few bad injuries from these unwarned seizures causing scars, stitches, glue, broken teeth and damaged jaw cartiladge. The latest seizure (1st September 2019) left me with 4 broken teeth that I have to get taken out or a root canal on and damaged jaw cartilidge leaving me on Penicillin antibiotics to reduce swelling and pain. Medication wise I was on 1500mg of Keppra twice a day aswell as 100mg Vimpat, I am being weaned off the Keppra by 500mg a day every 2 weeks but since the switch the seizure on 1st of September is the most extreme Ive had, turning blue in the face, bleeding from my nose and leaving extreme pain in my ribcage when taking deep breathes. Has anybody experienced any issues like this with medication reduction or would anybody be able to give me any information on what I can do to try and track seizures without warning. Any information at all is greatly appreciated as I feel like Epilepsy is starting to take over my life, limiting what I can do and also leaving my unable to drive and unstable employment due to employers not risking the chance. Thanks again, Wayne

Comments

Hi Wayne, Thanks so much for

Submitted by Anonymous on Wed, 2019-09-18 - 10:23

Hi Wayne, Thanks so much for sharing your story,we understand this must be very scary and upsetting to experience. It's important that you continue to follow-up with your healthcare team and to discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For assistance finding an epileptologist, (epilepsyspecialist), please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist It’s also important to remember that you are not alone. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: support,here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIn many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Additionally, you may 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 Explore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowGetting Hired hosting an online live, text-based chat career fair, for job seekers with disabilities on Wednesday, 09/25/19.Learn more about the fair here: https://www.epilepsy.com/event/online-career-expo-getting-hiredFor additional information and resources regarding employment, please visit: https://www.ssa.gov/work/https://askjan.org/ A 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 things to consider for independent living , resources that are available & when help is needed. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Track your seizures, record your medical history, set reminders, record side effects, moods, or other personal experiences, by using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/ 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-tools

Hi Wayne,  Thanks so much for sharing your story,we understand this must be very scary and upsetting to experience. It's important that you continue to follow-up with your healthcare team and to discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf  For assistance finding an epileptologist, (epilepsyspecialist), please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  It’s also important to remember that you are not alone. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: support,here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIn many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Additionally, you may 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 Explore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowGetting Hired hosting an online live, text-based chat career fair, for job seekers with disabilities on Wednesday, 09/25/19.Learn more about the fair here: https://www.epilepsy.com/event/online-career-expo-getting-hiredFor additional information and resources regarding employment, please visit: https://www.ssa.gov/work/https://askjan.org/ A 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 things to consider for independent living , resources that are available & when help is needed. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:  https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Track your seizures, record your medical history, set reminders, record side effects, moods, or other personal experiences, by using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/ 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-tools  

Hi Wayne, Thanks so much for sharing your story,we understand this must be very scary and upsetting to experience. It's important that you continue to follow-up with your healthcare team and to discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For assistance finding an epileptologist, (epilepsyspecialist), please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist It’s also important to remember that you are not alone. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: support,here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIn many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs. Find your local Epilepsy Office, here: epilepsy.com/localsupport Additionally, you may 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 Explore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowGetting Hired hosting an online live, text-based chat career fair, for job seekers with disabilities on Wednesday, 09/25/19.Learn more about the fair here: https://www.epilepsy.com/event/online-career-expo-getting-hiredFor additional information and resources regarding employment, please visit: https://www.ssa.gov/work/https://askjan.org/ A 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 things to consider for independent living , resources that are available & when help is needed. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Track your seizures, record your medical history, set reminders, record side effects, moods, or other personal experiences, by using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/ 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-tools

Wow Wayne, it sounds like you

Submitted by Patriotrehab on Wed, 2019-09-18 - 10:36

Wow Wayne, it sounds like you need to go to an Epilepsy Center where they will probably recommend doing a 7 day VEEG to learn more about your seizures, recommend the right medication and dosage, and possibly do an outpatient ambulatory 3 day EEG after they have tried that recommendation. They can adjust your medication or even do other testing if medications are not working for you. It doesn’t make sense to be taking you off a medication that was helping you and giving you such a low dose of another, but I’m not your doctor and I don’t know what that conversation was about. I’m just another person with epilepsy who has had it for 19 years and based on my experience with doctors including Vimpat and Keppra, they only were willing to taper me off Keppra after I had been able to achieve a therapeutic dose of Vimpat. Because I also have nocturnal seizures, I strongly recommend the VEEG, which is usually only available through an Epilepsy Center.

Hi Wayne, yes they took me

Submitted by Patriotrehab on Wed, 2019-09-18 - 12:01

Hi Wayne, yes they took me off all of my meds for the VEEG and they ended up capturing 3 seizures that they couldn’t capture any other way as part of doing sleep deprivation. They kept me up until 2am every other night in addition to having no medication and it worked! I’ve also had periods of up to 7 months where I thought I was seizure free, but then I have then again, but what I learned from the VEEG study was that I was having seizures that I wasn’t even aware of because one I didn’t wake up to and the other two I only woke up to briefly and I couldn’t be for sure that they were seizures until the doctor told me the next morning. So, that’s why I recommend the study. Even if they don’t capture something the first time, they can try again in 6 months. The doctor said that’s usually how often insurance will approve the VEEG study. It can give you valuable information about the type and location of your seizures.