Seizure while sleeping

Hi there after joining this group and learning how others cope with there head injuries and stuff I've been going down the proper channels to take control of my life and not let my TBI take control, on Monday night I was in bed asleep with my partner I had a seizure and all I know was being put in a ambulance with blood everywhere, my TBI happened 6 years ago and this is my first and hopefully last seizure, I've had to surrender my driving licence to the Dvla, I'm currently in a lot of pain all my muscles are agony and my tongue is disfigured because I must have been biting on it when seizures took place, has anyone else had anything similar happen to them and if so what do they do about it and how is it managed, I don't know what kind of seizure it was and pray it was a one off as I've not had anything like that until now, thanks

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  • Hi Chris,

    Although I've never experienced a nocturnal seizure (As far as I'm aware), I've been living with epilepsy for around 10 years now (Caused by a brain tumour which has since been operated on and 'debulked'/partially removed) and thankfully it's been well controlled by a combination of two antiepileptics, Lamotrigine and Epilim. The difficulty with epilepsy medication is that there is no 'magic bullet', different medications and combinations work for different patients, and it can sometimes be trial and error till you get a treatment that is perfect for you.

    With a grand mal seizure I think memory loss isn't unheard of, when I had my very first seizure I wasn't 'aware' until I'd arrived at the hospital. Your muscles will be sore due to the rapid spasm they went into, it's very stressful on the body and will make you tired at the very least.

    With regards to driving, after my first seizure I surrendered my license to the DVLA and was informed that I would have to be fit-free for at least 12 months before reapplying, and my application would require a declaration from a doctor or specialist that I was medically fit to drive before the DVLA's medical team would make a decision.

    Any sort of seizure is a frightening experience for the person experiencing it as well as anyone who sees it happen. Medical advice from epilepsysociety.org.uk is as follows:

    10 first aid steps (when someone has a convulsive seizure)

    What to do when someone has a seizure where they shake or jerk (a convulsive seizure). This is intended as a quick first aid guide when someone is having a convulsive (tonic clonic or clonic) seizure. For more detail please see first aid for all seizure types.

    Although it can be frightening to see, this type of seizure is not usually a medical emergency. Usually, once the convulsions have stopped, the person recovers and their breathing goes back to normal.

    What to do

    Stay calm.

    Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.

    Note the time the seizure starts.

    Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.

    Cushion their head with something soft if they have collapsed to the ground.

    Don't hold them down.

    Don't put anything in their mouth.

    Check the time again. If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance (dial 999).

    After the seizure has stopped, put them into the recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance.

    Stay with them until they are fully recovered.

    If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.

  • chris i suffer vacant seizures, but worked with adults who suffered mal and grand mal, back then we were taught how to administer rectal diazapam to ease the muscle tightening.

    after aa seizure that would be it for a day or 2, totally exhausted, even my vacant takes a lot out of me.

    what meds are you on?

  • I'm not on meds, I got took to a&e in ambulance and kept in for a day then had a MRI scan then discharged, I think I need to wait on a Referal but it can take 18 weeks, my whole body is still in agony and my tongue it disformed because of what happened and I hope it gets better but doesn't look like it, what meds do you suggest and I hope my seizure was a one off, thanks

  • chris im not a dr so i cant suggest what medication you should be on.

    im on epilim for my aggression annd topiramate for my epilepsy, although my friend is on something else for his epilepsy'

  • really sorry to hear that. until/if you have further seizures normally you'd not be classed as Epileptic, sounds scary stuff, and no dough not being able to drive again is going to be a right bore.

  • Hopefully just the one for you. I do Quite often have a bitten tongue, no recollections of it. Have thought of bite guard thing. Nothing on your scale that I know off.Glad truly you have a partner. My warmest regards too you both sincerely. I'm chuffed I have a window into other "passengers" Lives / episodes & aching. Shouldn't really txt when weekend Liquid in my system & my only very much sheltered religious ex from years back gives me a " Good on ya " when mentioning possibly doing a marathon when My True Everything Love, died oot running. Not run myself since. ( The living ex, her fella cheated multiple times... Not condoned but clearly one sided & unwilling to know the ways of reality & adjustment. Religion. No Anything before marriage! Excuse my purging in electronic direction of yr page, their is No one else. Truly. Shrinks mostly are like Banks... Take Your money. Appologies for what I've written, for the morning.

    Hope yr Healed & it's just a one off weird thing that'll be HISTORY.

  • Hi yes this has happened to me a couple of times - one hospital admission one I recovered and stayed at home. The cause was diagnosed when I changed GP practice and my new GP listened carefully to what I was experiencing - specifically needing to sleep all the time. She referred me to a Respiratory Consultant who simply sent me home with a little fingerstall oximeter that I wore taped to my wrist for 24 hours. The data was downloaded and revealed that I did not breath enough automatically and my blood oxygen fell into the low 80s! this is bad as brain damage occurs - and the need to sleep is because the brain shuts down to conserve oxygen! It is termed Central Alveolar Hypoventilation. Because of where the brain was damaged I do not breath enough and neither does the brain react by yawning or feeling short of breath! A straightforward enough mechanism but not one diagnosed by MRI scans... My Neurologist had no idea. Worth a try - get an Oximeter finger device and see if your blood oxygen is always 95% or above!

  • Hi,

    Hope you have had a good day bearing in mind yr recent events.

    I had seizures as a presenting symptom of my cvst (venal blood clot) and bit my tongue really badly both times.

    In hospital (once they actually admitted me after 48 hours) they gave me iced water which was soothing, soluble paracetamol for the pain of the tongue(tramadol for the head pain) and some spray anaesthetic. My boys were revolted by the sight of my tongue....but I was the one living with it. It took a few weeks to heal, but now absolutely fine now.

    I found heat patches helped the muscle pain after a while of using them.

    Not driving was horrible, though I was too ill to care or be out on my own for several months. Have you applied for a bus pass yet ?

  • Good point Moo!

    Chris, if you're declared unfit to drive for medical reasons you may be eligible for a bus pass and reduced rates on trains.

  • Had a cracker of a seizure whilst sitting on a stoll in the kitchen. Woke up on the floor with a bloody lump on my forehead and the skin off my nose.

    I suffer with petit mal and flashing lights can cause. I generally have a warning, metallic taste in my mouth and a feeling of descending peace before it happens.

    When an event is on its way I prop myself safely .... mine only last a few seconds to a minute. Nonetheless there have been odd longer events, one extending to 4 minutes when I nearly missed my train stop.

    Never driven since my accident; its a bugger and I do miss what I've never done but at 67 its not going to change so I have to accept.

    When my wife arrived home after this event she thought I'd been fighting. Now, the kitchen stools are in the shed which is a pity.

  • By the way, I don't take medication for this. Used to take Phenobarbitone and phenytoin Sodium but two years after my TBI I condemned them, along with a load of other mindbending crap to the dustbin. Doctor not so happy, Paul very happy.

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