Balance, Cognition and memory

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46yo Male. About two years ago was diagnosed with complex partial seizures. I lost conciousness and fell causing me to hit head. Fractured my orbital socket and sinus passage. I take 600mg phenytoin a day and 600 mg lamotrigine. Still have at least one 'episode' a month. I say episodes because they seem to have started around 22 or 23 years old after a tbi during a mugging. I thought I was just falling asleep at strange times. I would walk somewhere and then awake laying on a sidewalk or in the street. Quit driving because I'd wake parked in the middle of the road or off the side of road in a ditch. Until I was 42 I never sought a doctor for this until fracturing my orbital. This past month have had six I am aware of. The past two or three months I have lost memory(short term), have brain fog, cannot do simple math in my head and have balance issues(look like I am drunk teetering side to side or tend to lean/fall backwards). Can't carry on a conversation with my wife or anyone for that matter. So far my PcP has found nothing and tells me I am healthy as can be. Blood test say meds are in balance. See neuro Monday morning. Is this the norm for epilepsy?

Comments

Hi dfalstaff, Thanks so much

Submitted by Anonymous on Fri, 2019-09-20 - 10:40

Hi dfalstaff, Thanks so much for sharing, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your neurologist to express your concerns an any increase in memory issues, changes in seizure types, frequency, behaviors, side effects and symptoms, to determine what individual treatment is best for you.It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/fall-safelyWe know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyTracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryMy Seizure Diary also helps you remember what to do- you can have reminders of when to take your medicines, when to refill prescription, or when you have medical appointments or tests.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-formsLearn 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 factsheet 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.pdf One of the most important things to help you live with epilepsy is to find a support network. Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find& give support to each other. Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsAdditionally, 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

Hi dfalstaff,  Thanks so much for sharing, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your neurologist to express your concerns an any increase in memory issues, changes in seizure types, frequency, behaviors, side effects and symptoms, to determine what individual treatment is best for you.It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/fall-safelyWe know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyTracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryMy Seizure Diary also helps you remember what to do- you can have reminders of when to take your medicines, when to refill prescription, or when you have medical appointments or tests.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-formsLearn 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 factsheet 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.pdf One of the most important things to help you live with epilepsy is to find a support network. Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find& give support to each other. Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsAdditionally, 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   

Hi dfalstaff, Thanks so much for sharing, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your neurologist to express your concerns an any increase in memory issues, changes in seizure types, frequency, behaviors, side effects and symptoms, to determine what individual treatment is best for you.It is common for those living with epilepsy to report having difficulties with thinking & memory Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/fall-safelyWe know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyTracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryMy Seizure Diary also helps you remember what to do- you can have reminders of when to take your medicines, when to refill prescription, or when you have medical appointments or tests.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-formsLearn 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 factsheet 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.pdf One of the most important things to help you live with epilepsy is to find a support network. Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find& give support to each other. Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsAdditionally, 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

dfalstaff,The seizures and

Submitted by birdman on Fri, 2019-09-20 - 19:51

dfalstaff,The seizures and injuries you've had sound awful. But the treatment you describe from PcP sounds worse. Maybe doctor only said you're as healthy as can be just because he or she doesn't want to get involved. The results of your blood test will probably be forwarded to your neurologist but I would have just asked for the numbers of those levels to be able to record them for myself. I've been on Dilantin for much of my life and have been able to identify what levels are needed to gain the greatest control with the least side effects. I remember and recorded a time when I was on 400mg phenytoin a day and I had periods where I wasn't sure if I was standing or walking straight. Double vision also bothered me at those times to where I had to close one eye to be able to read large numbers on a box or calendar. It's too bad the medications are not working. But the good news, I would bet, is that the brain fog, simple math problems, and balance issues are the result of high phenytoin. Hopefully a change in medication will help to relieve some of this. And if this discomfort continues ask to see an epilepsy specialist who can offer alternative treatments.Mike

Thanks Mike. Saw my

Submitted by dfalstaff on Thu, 2019-09-26 - 19:48

Thanks Mike. Saw my neurologist and she said I was over the max dosage. She said 400 is the max for me. Titrating me off the phenytoin and starting keppra. 7 or 8 weeks will be off phenytoin.