Constant Auras. Anyone have this?

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The past few years, I have days when I have constant auras. It is hard to tell when one ends and the other begins. They seem to run right into each other. I am having one now as I type and trying to ignore it. They make me feel really agitated. Yesterday, I avoided my family because I felt so irritated. My auras usually start with stomach tightening that feels like i'm being squeezed on the inside and then it will rise somewhere near my chest and I feel afraid. My head will sometimes feel like its going to sleep (pins and needles) and I will start to breath a little heavier. Usually, I rub my face. Not sure why, just a reaction. Lately, I have started having muscle tightening in my tail bone and twitches and crawling feeling in my legs. When it happens, I can talk and walk and do things, but I can have really focus and I may do some things that don't make sense because I am confused. I have stopped tutoring because they are becoming more frequent and causing me to not remember things I know and afterward, if they last a long time, I feel like my head was banged against something. Epileptologist has told me not to drive until I am 6 months seizure free. I am not on meds yet. Terrified of the response my body might have since I have autoimmune issues. My mom has same issues and has kidney failure due to autoimmune response to a medication. I want to speak with my doc about trying some alternatives. So, can't drive, can't work. By the way, these auras do not develop into full blown seizures. I had epilepsy as a child and had 3 grand mals, but that was it. I was diagnosed with nocturnal seizures because most of the ones I had were events where I would wake up having a visual seizure. I still have these from time to time if I am sleep deprived or eat heavy and go to bed. It is hard for me to keep up with all this stuff going on in my brain. There are other kinds of auras that start with a metal taste too. I know there are people who have it much worse and fall and injure themselves.I do not ever want to have another grand mal seizure. But, these auras are no picnic either. Anyone else having constant auras ?

Comments

Is there something new in

Submitted by Itsame! on Sun, 2019-09-22 - 15:27

Is there something new in your routine? I do not really get auras as you describe. For me, it is a fuzzy brain feeling behind my eyes and I struggle to focus. I started noticing them more when I began using a computer more between college and work. They went away after I went on a slow-release Keppra. The medicine stays in my system longer and leaves my system slower which has helped a lot. I hope you figure it out though! Sending you my best wishes!

Thanks! Nothing that I can

Submitted by Newyorkcita2 on Sun, 2019-09-22 - 23:17

Thanks! Nothing that I can think of has changed. My life has always been stressul in general and there has been more stress lately, but I have definitely been through worse. I think it is to do with hormones. It is getting worse as I get older. My autoimmune issues have gotten worse, so maybe that could be it too. Feel like this is probably not going to be a straight forward thing. I am scheduled for continuous eeg at the hospital in a couple of months. I hope they can pick these up if I am still having them.

Hi Newyorkcita2, Thanks so

Submitted by Anonymous on Mon, 2019-09-23 - 10:19

Hi Newyorkcita2, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your Epileptologist to describe these episodes, as well as difficulties with memory & attention, changes in seizure types, frequency, side effects,behaviors, or symptoms, to help determine what treatment is best for you. Seizures can take on many different forms and affect different people in different ways. Learn more about seizures & auras, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizureIt is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory We 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-epilepsyCreate 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 Tracking your seizures, record your medical history, medications, side effects, moods, behaviors, triggers or other personal experiences, using a diary (which can be shared with your healthcare team) : 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 a prescription, or when you have medical appointments or tests.Learn 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.pdfOne 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 Newyorkcita2,  Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your Epileptologist to describe these episodes, as well as difficulties with memory & attention, changes in seizure types, frequency, side effects,behaviors, or symptoms, to help determine what treatment is best for you. Seizures can take on many different forms and affect different people in different ways. Learn more about seizures & auras, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizureIt is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  We 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-epilepsyCreate 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 Tracking your seizures, record your medical history, medications, side effects, moods, behaviors, triggers or other personal experiences, using a diary (which can be shared with your healthcare team) : 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 a prescription, or when you have medical appointments or tests.Learn 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.pdfOne 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 Newyorkcita2, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you continue to follow-up with your Epileptologist to describe these episodes, as well as difficulties with memory & attention, changes in seizure types, frequency, side effects,behaviors, or symptoms, to help determine what treatment is best for you. Seizures can take on many different forms and affect different people in different ways. Learn more about seizures & auras, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizureIt is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory We 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-epilepsyCreate 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 Tracking your seizures, record your medical history, medications, side effects, moods, behaviors, triggers or other personal experiences, using a diary (which can be shared with your healthcare team) : 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 a prescription, or when you have medical appointments or tests.Learn 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.pdfOne 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