Nocturnal

Hi everyone, I'm very new to this and only got diagnosed a couple of days ago! (This is going to be very long and I apologise!) I had a car accident a couple of years ago, and injured my back. Since then, I had had a few unexplained injuries in my sleep resulting in trips to the hospital with many smashed faces! We didn't know what was happening, but kind of put it down to knocking myself out whilst being tired and just not remembering (I always ended up with concussion), or me just falling out of bed! Around two years ago, I had a weird episode in my sleep that resulted in paramedics being called, which I do not remember. The paramedic said that it wasn't actually a fit, and all my obs were normal. Ignored it since then, but a more serious injury made me start recording myself in my sleep with a spy cam app. This showed me having what looked like a fit (horrid to watch myself doing that!), so I eventually went to the drs, who referred me to the neurologist saying I had nocturnal epilepsy. Saw the neurologist on Tuesday who has told me that I had a major epileptic seizure, and that what I have thought for 8 years were migraines, turns out to be a form of epilepsy in my waking hours! The only connection is that I lose control of my eyes and sometimes my head, which both twitch down to my right side. Apparently this is not a migraine, and is connected to my epilepsy. This has resulted in me losing my car, HGV and LGV licences, and being put on medication! Has anyone else had anything similar regarding the strange day time things connected to nocturnal?! Sorry for the length of this!

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  • My epilepsy is not nocturnal, but occasionally I have also had the symptoms you refer to having in the day time. It is not common, but a couple of times at the start of major seizures, before I have lost consciousness I have turned my eyes or head to the right without meaning to and once I remember turning my whole body round in a circle in that direction. As you describe it as "twitches" I can also relate to that, as it often occurs as a series of jerks to the right rather than a smooth movement. It is very scary as you are conscious and can often hear people asking why you are acting strangely or something but you can't control your body at all.

    Hope this is helpful,

    Amy

  • Hi Amy, this is exactly what I have! I've also had the turning around in a full circle just prior to what we thought was a major migraine. I've never had an actual seizure in the day time, it was just always followed by a migraine. Yes, I can hear people asking what is happening, but I will also often hear old conversations in my head?!

    Thanks,

    Rhiannon

  • Hi I've had similar experiences but nothing as severe as needing paramedics or treatment. I knew something was wrong due to daytime 'sleep attacks' which included nearly losing consciousness while driving. Plus terrible night time experiences - exhausting vivid dreams. I had a sleep study last November and was informed at the outpatients that I'd had a seizure during the study.

    It is quite a shock to cope with the losses that come with this such as driving license and livelihood. I was a community nurse so have had to deal with both issues. I' ve also tried filming my sleep but not really found anything. I've seen a neurologist recently whom suspects I may have a REM sleep disorder rather than epilepsy but nothing is yet clear. I've started Clonazepam which has suited me well after severe side effects from Epilim and Tegretol. It may be that you have to think about a different kind of work when you feel well enough. I advise you to access all the help and support including benefits and bus pass. At least yo now know what's wrong and can learn and explain to others.

  • Hi yes but not as severe as yours .I too was just diagnosed recently after 2 years of strange 'happenings' and health professionals thinking i was a bit nuts !

    I am to a health practitioner I had a fit when I was 13 and 2 more in early 20s then nothing forgot all about it !

    I was working nights 2 years ago and found to be 'asleep' on duty ..but also clutching a 'gas and air' tube I was described as being 'rigid grey looking with my tongue between my clenched jaws ' ..I was agitated confused and disorintated when I was woken ...I was suspended believing I had been knocking back the gas !! ..I had not ! Took me 18 months of hard work to clear my name ..since then ...I have fell out of bed ....been incontinent at night 4 times had strange night mares bruised I can't explain .blood on my pillow ...one night I got up and immediately fell to the ground ..very weird ..I now know to be a 'drop attack' go told by GP to stop worrying an change my perspective !ha despite having visible muscle jerking that I could not control memory problems where the most worrying

    Any way, eventually got Neuro opinion and EEG ..rapidly followed by an urgent fax that I had Epilepsy and to start Epilim ..the difference is amazing I am so much better can concentrate now ......and am starting the process of challenging my employers for assuming and not getting an ambulance

    Pity about the licence but at least I've got a good excuse not to drive teenagers around !

    Hope you stay well

  • Hello I have been having what so think are night fits since Jan when I got very stressed and tired it came on. I just completed a sleep monitor and await results but I basically have partial awareness that I've said/shouted a sound very fast in a repetitive manner or a choking sounds that's fast. I always wake with a migraine. I'm convinced it is some kind of fit as I have a pounding heart after and have vaguely been aware of my arms vibrating. I'm really scared as sleep alone. Hope yours eases it's not nice to cope with.

  • Yes, mine is always when I'm tired. Had another one last night and I was pressing my face into a pillow and holding it against me, which like you is rather scary to watch as I also live on my own! I'm not away of it when it happens, but I can tell when I wake up that ive had a fit, and luckily I've been filming it. I hope your results come back with good news!

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