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Sleep apnea with nocturnal seizures

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LaylaRose +0 points · 5 months ago Original Poster

Good day, everyone, this is my first post. I was diagnosed with sleep apnea three weeks ago, and it was also discovered that I am having nocturnal seizures, hence many nocturnal arousals. Has anyone else experienced this? I am a complete physical wreck - have gone from being someone who can run 10km to someone who can barely function. I started getting symptoms of sleep apnea five years ago, but nobody knew what they meant. I also started experiencing inappropriate sinus tachycardia six months ago but my cardiologists could not find a cause. I now know everything was related to sleep apnea. I believe that being untreated for so long contributed to the seizures. Please can someone give me hope?! I am on a CPAP machine, which is controlling the apneas and making me marginally functional, but I want to be able to exercise again. I am starting on new seizure meds tomorrow - Tegretol made me so nauseous and exhausted I couldn't function, either!

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Sierra +0 points · 5 months ago Sleep Innovater

First, welcome to the forum.

I am not a medical professional and cannot comment on the cause of the nocturnal seizures or treatment methods. One of the things you could do is copy your CPAP data to a free software program called SleepyHead. It lets you view in more detail what is happening during the night, to the extent that the CPAP machine monitors it. The software requires a PC or Mac and a SD card reader to get the data from the SD card in the machine to your computer. The software may give you some insight into what is going on.

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LaylaRose +0 points · 5 months ago Original Poster

Thank you, that is such a great suggestion! New seizure meds are helping already. :)

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Ruby +0 points · 5 months ago Sleep Commentator

So sorry you are having all these issues! Good to hear that the new meds are helping. As Sierra said, we aren't medical professionals here and so need to be careful about what we suggest but the SleepyHead suggestion is a good one. Just a question here and not meant to be critical but have you asked these questions of your doctor? I always wonder why people ask questions like these on here. Maybe to get a personal, been-there done-that answer to compare with what the doctor said or because they didn't ask the doctor. Regardless, forums like this can be so helpful and I hope you continue to let us know how you are getting along.

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