Community Forum Archive
Issues falling asleepSat, 07/27/2019 - 06:30
Hello, I’m new to this website and am looking for any help! I’ve had 7 seizures in the last 6 years. Which isn’t an extreme amount, but any amount is significant. My major issue though is that I get, what I call “waves”, what I’ve heard people refer to as auras, every day. I have an intense feeling of dejavu mixed with panic that can last anywhere from 30seconds to a few hours. It’s the same feeling I would get before I had one. The worst is at night when I’m trying to fall asleep and shock myself awake RIGHT BEFORE I fall asleep. It’s followed by me staying awake in fear of it happening again. I have to sit up and continuously tell myself that I’m okay and am not going to have one. Does anyone have any insight on why this would happen or how to help me not have this feeling all the time?
Auras can be seizures. Can
Submitted by Amy Jo on Sun, 2019-07-28 - 02:29
Auras can be seizures. Can your doc re evaluate your situation? It may be that your medication levels need adjustment (drug levels can be checked, maybe you aren’t metabolizing the meds you take as well). Poor sleep is a common seizure trigger so you may be stuck in a bad cycle (plus sleep apnea is an issue that impacts seizure control). For women some birth control drugs interact with some seizure meds and for anyone various otc drugs can interact with seizure meds so make sure your neurologist knows all the drugs you take regularly and infrequently.
Hi Kate_L, Thanks so much
Submitted by Anonymous on Mon, 2019-07-29 - 09:10
Hi Kate_L, Thanks so much for posting. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . To help prepare for a visit with your healthcare team please visit: https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf Seizures can take on many different forms and affect different people in different ways. Learn more about seizure and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures For more information on sleep & epilepsy please visit: https://www.epilepsy.com/learn/challenges-epilepsy/sleep-and-epilepsy https://www.epilepsy.com/article/2016/7/dilemmas-seizures-night-or-other-predictable-times Additionally, you may want to consider with your doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers. https://www.epilepsy.com/learn/managing-your-epilepsy It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health 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 For additional questions, please contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 firstname.lastname@example.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline Or contact your local Epilepsy Foundation: epilepsy.com/localsupport,
Welcome Kate,I have
Submitted by birdman on Sat, 2019-07-27 - 18:10
Welcome Kate,I have infrequent seizures (1-2 per month) but like you point out seizure frequency is not the issue; it's the threat that one could occur that is disturbing. When you say that you had 7 seizures in six years, are these the type that put you on the floor in a convulsion? Did any doctor ever point out that those "auras" of waves could be seizures? I don't mean to scare you. But if this is what is going on it is helpful to understand "partial" or "focal seizres". Look at www.epilepsy.com/learn/types-seizuresFocal seizures start in a smaller portion of the brain and often remain "localized". Sometimes they can spread to a greater portion of the brain and become "generalized" or what most people recognize as a "grand mal" or convulsion. And because each of these focal seizures has the potential to go generalized it is important to get them under control.Have you ever had a "baseline EEG" for a diagnosis? If so you may recall that during the test you go through an exercise where they let you fall asleep a few seconds and then wake you. They do this several times to catch the brainwave activity just at the point where you go asleep. For some people this is a common point where seizures begin. You may find interesting information if you look up "nocturnal seizures".I used to have nocturnal seizures more often. It is scary to not know if you will have a good night's sleep or if you may wake to discover another event happened. My doctor has me on an anti-anxiety pill called Klonopin or clonazepam. I take it more to control my mood and anxiety problems but it also has the effect of controlling seizures. It may be helpful to take something like this just before going to bed, but you'll need to talk to a doctor as it is only available though prescription. Better yet, I hope a doctor can help you get on a prescription for seizure control that will stop these infrequent seizures as well as the auras. Klonopin is not effective for long-term seizure control and so it is better to use an anti-convulsant for longer term. But Klonopin or maybe another anti-anxiety drug may help you. You have good reason to be afraid but there is help,Mike