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Noctornal Sezuires And Changes

A MyEpilepsyTeam Member asked a question 💭
Muskegon, MI

I have noctornal sezuires that last 30 to 45 seconds and maybe a minute sometimes which happen in my sleep, deep sleep and I have no knowledge of them or if they happen or when except when I wake up sometimes or when I go to visit my neroligest. Asking anyone who has noctornal sezuires as primary sezuires or has had them at any time mine have never caused me any problem except the obvious life problems. I have been having my noctornal sezuires now that have been actually waking me up in the… read more

May 21, 2021
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A MyEpilepsyTeam Member

These are the type of seizures myself, my daughter and son suffer from. A sleep study may help with answers if yo have not had one done recently. The sezures may be related to sleep apnea. Definately mention your systoms to your specialist. As I always say they get paid the big bucks to answer our questions. My son does wake during or after his seizures and is not aware of having one the following morning. My daughter was having very voilent seizures, she would wake up go the toilet and return to bed and go straight back to sleep. She was also was unaware the next morning. I would usually have a voilent sezures not aware of having them except for waking in morning feeling like I had done four rounds in the boxing ring and coming out the loser. I now use a CPAP machine and don’t have the noctural seizure but still have abscent seizures during the day. Hope this is of some use to you. Keep well.

May 21, 2021
A MyEpilepsyTeam Member

The only focal seizure ever captured by EEG for me was in my sleep. I also have focal aware seizures during the day and once, 2 years ago, I had a generalized tonic-clonic at work.
I have had multiple sleep studies, and I AM a big person, but I don’t have sleep apnea. I DO have RLS (restless leg syndrome) and have had that for 20 years. I think a sleep study is a great test to have in your Arsenal. I would definitely take the time to find someone who is sensitive/knowledgeable about sleep disorders other than apnea- so- a sleep disorder specialist, not necessarily a pulmonologist. Your epileptologist may have someone they like. Also, if you ever go to an EMU again/ever, you could ask them if they can monitor all of that as part of your admission. I remember ASSUMING they would for mine and being disappointed that they didn’t.

These days, I have gotten good at “knowing” that I had a Seizure in my sleep based on how I feel when I wake up. When that happens, I try to let myself rest/sleep in a little bit to keep from triggering another one. I am like you in that a lot of my seizures happen when transitioning from sleep to wakefulness, or when I am really tired. I have been focusing on my “sleep hygiene” and making sure to go to bed and get up at the same time everyday as much as I can, and I have noticed fewer seizures that are less severe.
Best wishes!

May 22, 2021
A MyEpilepsyTeam Member

I usually have nocturnal seizures mainly in early hrs.that i stay asleep for.. Then upon waking it happens again with pretty much no short term memory..i try and stay quiet in mornings with my mrs because its the same questions evertime..can be difficult as we live in rv and always in different locations ..so after ive made a cuppa ect im usually in better shape things will slowly come back to me ..my mrs reckons she can hear the cogs grinding when im trying to retrieve things..also if im stressed it happens everyday ..stress free only 2 to 3 times a week ..good luck cheers mate .

May 22, 2021
A MyEpilepsyTeam Member

I'll have 1 per night and 1 when I take a nap I have localization-related epilepsy with partial complex sezuires with intractable epilepsy and am on onifi along with birivact and Topomax with waking up to just tiredness and my brain in a fog and a willingness to nothing all day put stay in red and sleep while my bed and room might be trashed.

May 25, 2021
A MyEpilepsyTeam Member

I don't have sleep apnea as I've had sleep studys done and all my EEGs I've had have shown them in my sleep and when I take my nap in the afternoon and only then nothing more in the day happens. I do have a sleep and wake schedule and routine that I follow every night and day all week along with my sleep hygiene with nothing with in a hour or two before bed except my nightly smoke and a white noise machine that I use for calming and meditation music and sounds for sleep. I have logs of when I go to sleep and what I eat and also sleep and eating with all the information is recorded in my smartwatch and syched into my tablet. My mornings are very quite a time for reflection and writing.

May 23, 2021

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