Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

A Quick Question About Sleep Apnea

Thu, 04/16/2020 - 16:35
So yesterday I went on a difficult hike and reality overdid it. When I got back home I spent time next to my bed on my knees doing my best to ward off seizure activity and trying not to fall asleep and make things worse. I slightly recovered enough to get something to eat. Later that night before I went to bed I took 150mg lamictal, 300mg gabapentin, and 100mg zonizamide that I just started. Often, when I go to sleep on my back, I have sleep apnea and wake up over and over in the night gasping for breath. I'm not at all overweight or unhealthy. I turn to my side but end up on my back again. Well, last night instead of just having the apnea on my back, i was experiencing it on my side as well. I researched a bit, trying to find info about what was happening and came across central apnea. The articles also warned it could raise the likelihood of SUDEP. I'm worried now, because the apnea doesn't just feel like I loose my breath, but somehow like my body is shutting down. My breath stops, my heart rate goes way down I'm convinced, and even my legs and arms start going numb when I have attacks back to back like last night. It makes me nervous. Anyway, my neurologist is out of state right now. I can call the clinic, but I don't want to of it's not necessary, though it feels like it could be after last night, but i don't want to be admitted or anything especially with COVID going around. Anyway, any advice would be nice. Thank you in advance :)

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Fri, 2020-04-17 - 08:53
Hi, Thank you for posting, we understand this must be scary and upsetting for you to experience. Sleep disorders are highly common among people living with epilepsy and often under diagnosed. To learn more about Sleep Disorders such as Sleep Apnea: https://www.epilepsy.com/article/2018/3/relationship-between-sleep-apnea-and-seizuresIt’s important that you follow-up with your healthcare team who is most familiar with your history to explore this further and if you continue to experience poor sleep quality, daytime fatigue or sleepiness, snoring, or breathing issues in sleep. It is also important to discuss any changes in seizure types/frequency, moods, or behaviors. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . We understand that talking about SUDEP is tough and can feel scary. Discussing ways to lower risk for SUDEP with your healthcare team can help you take actions to stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep. There are also many different devices that can help detect seizures and notify someone to help respond.  Review our seizure alert device factsheet with your neurologist, who can help determine if an alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf . Many clinics and offices are now offering telemedicine options for non-emergencies if you’re unable to see your doctor in person currently. You may want to call your neurologist and see if you can schedule a time to talk via phone/ other telemedicine resources you can utilize, or if they can make any additional recommendations. It may be helpful to keep a journal or a diary to help keep track of these episodes you describe experiencing and your symptoms. My Seizure Diary can be used to organize your health issues,track your seizures, manage medications, other therapies, or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary  . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.