Epilepsy Research UK
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Possible nocturnal seizures?

Hi, I've recently started experiencing what I can only describe as seizures in my sleep.

I'm a 33 year old mother of two, and It tends to happen not long after I've fallen asleep, I suddenly feel a tight pulling pain on the left side of my head, and with it comes a feeling of seizing up in my face and limbs. I get a sensation of numbness in my body- even my tongue feels like it flops to one side and my mouth feels lopsided- there have been times I'm biting my tongue.

This can last for a couple of long seconds until I'm able to snap out of it, leaving me in a very anxious and uncomfortable state. I always turn over to the other side in a bid to shake off whatever it is that's happening, and once I fall asleep- it's back to square one.

This can happen up to 4 times a night.

Another symptom I've noticed when I'm awake is a feeling of suddenly not being present. The only I can describe it is like someone switching a light switch on and off rapidly. In those brief moments where I'm "off" I feel like I'm not in my body almost as though I'm in a dream sequence with a feeling like my body is about to collapse.

Just to give you a bit of my medical history:

-I've had a brain and spinal MRI in December since suddenly developing Mononeuritis Multiplex in October.

-I've had extensive blood tests and scans, all of which have come back normal, aside from elevated Thyroid Antibodies.

-I have a goitre and Hashimoto's

-I take Iron supplements to help my low side of normal ferritin levels, and magnesium spray to help with the neuropathy in my right hand and left foot, as well 600mg of Alpha Lipoic Acid.

-I have TMJ

Any input from you guys would be most appreciated.

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Hi Daisy, I recommend you ask your GP to refer you to a Sleep Service for a sleep study in order to inform any diagnosis and treatment. Good luck Paul

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Hi DaisyBelle85 I started having nocturnal seizures over 12 months ago. My first one was around 4am and i was unaware until i came round to find paramedics in my bedroom, I had woken my husband with my fitting and he called an ambulance. It was very scary at the time and they took me to A&E were i had lots of tests but found no cause and said could be a one off! Any way I had another in June last year then another in oct when I finally saw the Nurologist who put me on Levitiracetam. I also have PMR and take steroids for this. The strange thing is that all 3 seizures happened around 4am! I haven't had one since last oct so hope they are under control! Have you seen a doctor about them.

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Thank you for your responses.

I will try and arrange an appointment with my neurologist soon, in the meantime I've become terrified of falling asleep. I try to keep myself up for as long as I can possibly manage, just out of fear of having another "episode" when asleep.

Over the years I've always been told that I twitch violently in my sleep, sometimes to the extent that my husband would think I'm actually awake, however I have never had any recollection of this.

These current "seizure" like attacks that I've started experiencing are very new, and I have a foggy recollection of the incidents, almost like how one would remember a nightmare. I was just wondering if these are symptoms of epileptic nocturnal seizures at all

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Lack of sleep can trigger a seizure as can dehydration and over heating. So get as much sleep as you can, drink lots of water.

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Thanks for the advice aharrod65!

Does stress have any effect on seizures at all?

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Hi Daisy yes it can trigger seizures I run my own business when I get worried/stressed it has brought a seizure on. On the the night time one I have had a lot when I sleep at night I was talking to my partner about this subject and she said its funny I have never had one when I sleep during the day this maybe coincidental but if possible for you you could try that.best of luck.Dino

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Thank you for sharing your experience Dino, I was sure stress was a contributor to whatever it is I'm experiencing.

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Hiya Daisy I have diagnosed REM sleep behaviour disorder. Symptoms sound similar but impossible to diagnose without a Sleep Study where a person stays overnight and has sensors all over for brain waves, movement and also videoed. Don't want to alarm you. Mine may be caused by a prescribed anti depressant and I tapered off it 3 weeks ago. Too early to say if it is yet for me. I did mean to ask if you'd had any recent changes to medication Daisy? I do wonder if the symptoms are medication side effects. You've done the right thing to start asking about it and next stop GP or neurologist. Please don't worry as nothing is known till the sleep study is analysed. Good luck

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Thank you for your response Pauley!

Technically, I'm not on any medications as such, just vitamins and supplements to help with my low energy and to relieve the neuropathic pains in my hand and foot.

I had briefly mentioned the head pain and numbness in my sleep way back in October last year, and since I was suffering from neuropathy in my hand and foot, my neurologist sent me for a brain, neck, and spinal MRI, as well as giving me an extensive test of bloods. The MRIs came back normal, as did the bloods.

The progression recently has now been the numbness in my tongue, and having it flop to the side as well as feeling my body seize up- almost as though I'm trapped in my own self. The most bizarre part is that this only happens when I'm in a certain state of sleep.

Will definitely be looking into the REM sleep disorder that you've mentioned btw!

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