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Nocturnal Seizures out of the blue

Hi everyone,
My name is Sarah, I'm 38 and I live in Tasmania. Back in April/May I woke my husband with a seizure (fell out of bed, wet myself, then climbed back into bed). He called an ambulance and they took me up to our local, country, hospital. Exactly two weeks later I had a second seizure. This time paramedics took me to the larger, city hospital.
I was referred to a sleep specialist, did a sleep study, and was diagnosed with obstructive sleep apnea. Prescribed cpap and have been on that ever since (from about August). About a week ago I had 3 episodes in the one night. Hubby called the ambulance again and I was taken, again, up to the city hospital.
I still haven't had an EEG, although apparently I have been referred for one. I have had an MRI and it showed nothing abnormal.
I am so scared of these sudden onset seizures. The only person in my family with any kind of seizure disorder is my 12 year old daughter, who has absence seizures.
NO one seems to be as concerned as I am about them. Has anyone else been through anything similar?

Thanks so much for your time.
Sarah
❤️

Comments

It sounds like you have been

It sounds like you have been through a lot and there are many people who have had similar experiences. Some of my seizures are also nocturnal, but I do not wake anyone else up as mine are focal onset with impaired awareness. The type that you are describing sound more like generalized, but nobody here can tell you that for sure. It’s good that you are going for an EEG. It’s not unusual for someone with epilepsy to have a normal MRI, but to later have abnormal EEGs. Sometimes people even have normal EEGs except when they are actually having a seizure. At some point you may need to ask your doctor for a video EEG if they do not start treating your episodes as seizures like in the case of getting a normal EEG at first. Sometimes it can lead to misdiagnosis without an extended VEEG. I do think that they are on the right track with getting the initial EEG though because you may have both sleep apnea and seizures, but maybe your seizures are just confined to sleep. There are other types of seizures that you may not even be aware of that you have, so be sure to keep a journal about any unusual sensations or behaviors or loss of awareness, etc. For most people with epilepsy the seizure is the same, but for a few people...they have different types. Hope that helps! 

Hi,Thank you for sharing your

Hi,Thank you for sharing your story. As Gianna stated in her comment, we are happy to hear that you’re following up with your healthcare team for further diagnostic testing and if you continue to experience any changes in seizure frequency,types, behaviors, symptoms and moods. It may be helpful to keep a diary or a journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... a great tool for not only tracking seizures, but recording your medical history, setting reminders, managing medications,side effects, behaviors, moods, symptoms and other health events that may affect wellness, which can be shared with your healthcare team. 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_Ale... more about nocturnal seizures and safety while sleeping, here:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe..., you may always to contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access resources in your country by visiting: https://www.ilae.org/ https://www.ibe-epilepsy.org/ 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

I grew up for 33 years with

I grew up for 33 years with sleep seizures.  I had brain surgery in 2011 and my epilepsy was cured.  It took many medications,  MRIs, EEGs, hospital visits, etc.  Lucky for me, I was very successful.   I am always here to chat and am looking to be an epilepsy advocate for those struggling.  Please continue to stay positive. 

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