Something completely different than what you might expect to find here…
My partner is an epilepsy sufferer, and was very open about this early on in our relationship, while we were still really at the dating stage. Her epilepsy had been under control for a long while and she hadn’t had a seizure in over ten years.
A couple of years ago, the seizures started to happen again. Still relatively rare, with a long gap (of a few months) between them, and usually with a fairly clear initiator: in her case the seizures are triggered due to lack of rest, so they would happen if she’d just flown a ‘red-eye’ flight in economy class and got no rest, or if she’d had very broken sleep because of some other problem such as a bad cough, cold or flu.
A further complication is that every time an epilepsy sufferer has a seizure and crumples to the ground, there is a chance they will hurt themselves when they fall. In my partner’s case, she almost always falls to the same side, and it’s caused problems in her right arm and shoulder.
This has the ability to initiate a “vicious circle” – have a seizure, hurt your arm, have the pain from your arm affect your quality of sleep, to the extent that you have another seizure, and your arm which was slowly recovering is now even more painful. Lather, rinse, repeat…
So this was the position we found ourselves in. The seizures becoming more frequent. One problem exacerbating the other.
Nothing can prepare you for the first time you see someone you care about have an epileptic seizure. I’m a (lapsed) First Aider, and even though I’ve helped someone having a fit in the past, it’s different when it’s a person you know going through the process of a seizure. It really is quite a shock as the person you expect to find is “absent” during the seizure, but for their sake, you have to try and stay calm and keep a lookout for them until the fit has passed.
Here’s a few hints to help you help someone having a seizure:
1) Start the Clock
When you discover someone having a fit, make a mental note of the time. It’s important to know how long the fit lasts. Many epilepsy sufferers try and record things such as this, as it helps their neurologist. Keep checking the time. If the convulsing (twitching) stage of the fit lasts longer than 5 minutes, then it’s time to call for an ambulance.
If it looks like they have already been having the fit for some time, you may want to call for aid straight away, especially if you don’t know the person, or aren’t sure they are epileptic.
2) Unless they are in any danger, do not try to move them
While epilepsy sufferers can fall in some inconvenient and awkward spots, it’s safer and better for them and you if you can leave them where they are. Their muscles can be in spasm and you can hurt a person having a fit if you try to move them. What’s more they have no sensation of pain so can’t express this, you have no way of knowing if you are hurting them.
If there are dangerous things near them (hot things, knives, etc.), move those away from the person.
If they have fallen onto a hard surface, put something under their head to cushion it, as it will jerk around during the fit. A folded jumper, coat or cardigan will do the job just fine. Otherwise, gently cup their head in your hand.
DO NOT try and move them into the recovery position during the convulsant (tonic-clonic) stage of the fit.
3) Make some space
The person having the fit may kick out as part of their fit, and they don’t know their own strength. Move people away.
My partner fell against a door during a fit when she was at home alone, and knocked it clean off it’s hinges! What’s more, as she came round, she picked the door up (it could have fallen on top of her for all I know) and propped it against the wall. She doesn’t have any memory of doing it, and doesn’t think she can lift the door herself, but nevertheless she had to have done it.
By the same virtue…
4) Do not try and hold them down
You could injure them, or they could injure you. Keep people a safe distance away.
5) Do not put ANYTHING in their mouth
…not unless you want them to break their teeth and end up with an expensive course of dentistry.
Can I make myself clear: Nothing in their mouth at this stage. Not even your fingers.
Try not to be scared if their lips start to turn blue (cyanosed) – during the fit, the epileptic person’s breathing becomes irregular because of the convulsions, and this is a visible symptom. However, make a note that this happened, again it’s relevant to managing the person’s condition.
6) Look for clues
Now you’ve made the person safe, look for clues while allowing the seizure to run it’s course. Does the person have a medical bracelet or necklace – you’ll find some useful information there: What’s wrong with them, who they are, who to contact in case of an emergency.
7) Don’t just phone for an ambulance… unless you can see they are really hurt, or the fit lasts longer than 5 minutes
If you’ve found evidence the person has epilepsy (and it’s clear the fit isn’t for some other reason), don’t automatically phone for an ambulance. This will mean they get carted off to a hospital, probably miles away from where they were planning to go, where they will waste time sat in A&E waiting to be discharged. Often, people with epilepsy just want to pick up where they left off and get on with what they were doing beforehand, or want to go home and sleep because having a fit is very tiring for them.
Obviously, if you can see they have got other injuries as a result of the fit, such as broken bones, cuts, burns, etc., then they need professional medical care, and you should get an ambulance straight away.
Likewise, if the fit last longer than 5 minutes, or they have one fit which seems to subside and then run straight into another with no period of lucid consciousness between the two, then it’s time to get help.
8) Clear your diary
When the twitching part of the seizure starts to subside, it’s not over for you yet. Make a note of the time, so you know how long the fit lasted. It’s now time to put the person into the recovery position, and stay with them as they slowly become aware of their surroundings.
Clear your diary for the next hour, tell people you’ll be late if you’re heading for an appointment. The person on the floor still needs your help.
The person may have a lot of saliva build up in their mouth during the fit, so it’s important to get them into the recovery position, and make sure their lips are open so this saliva drains away. Tilting the head back to protect the airway should open the mouth slightly, but now you can gently use a (clean) finger to help the drool escape. Don’t be surprised to find a little blood in this. They probably bit the inside of their lip or cheek during the seizure. Get a tissue and help wipe this away.
They will probably be breathing heavily, almost snoring at this stage.
9) Be patient
Check the person is breathing okay and wait for them to slowly regain consciousness. This length of time varies from person to person, but over the next few minutes, they will start to wake up, however, they won’t be properly aware. They will be what is known as postictal – a altered state of consciousness as a result of the seizure, which will slowly subside as their consciousness returns to normal.
In some people, you will find that the person will respond to your presence, but either can’t understand what you’re saying, or if they can, can’t answer you yet, because their brain is effectively still “rebooting” after the fit.
Chances are they will want to try and sit or stand up (their brain is no doubt thinking “Why am I on the floor?”), but it’s unlikely they are steady enough on their feet at this stage. Gently encourage them to stay led down, and reassure them that you will look after them.
As the person recovers from the fit, they may be very confused, or anxious, possibly even aggressive. To some people, they may appear drunk. Try your best to reassure them. If you feel out of your depth, especially if they become aggressive, get help.
They will possibly feel very tired as well, and will likely have no memory whatsoever of the seizure or the moments leading up to it.
You will need to stay with them and remind them several times over several minutes that they have had a fit before they finally realise what’s happened to them.
Try to avoid asking them questions such as “What day is it?”, “Do you know where you are?”, as they probably won’t know, and it might make them anxious or scared. It’s just a waiting game while their brain gets sense of order back. This postictal stage usually lasts up to 30 minutes for most epilepsy sufferers.
10) Check they have properly recovered
A person who is recovering from a fit can be a danger to themselves or potentially others, especially if there are hazards nearby such as traffic, machinery or something as simple as a flight of steps.
Look for clues in the person’s eyes – are they dilated, in their speech – is it slurred or clear, do their sentences make sense, their muscle tone – for instance, the muscle tone in my partner’s face is affected immediately after a fit.
The person may seem a little embarrassed once they become more aware of what’s happened. This can especially be the case if they have lost control of their bladder or bowels during the fit – which does happen for some people. The important thing is to reassure them, don’t judge them, and offer them help.
If all looks well, before leaving them to get on with what they are doing, again ask if there’s anything else you can do for them, and what they are going to do next. Try and sanity check this with what you know already, and make sure what the person says they are going to do makes sense. If you’re not convinced they have fully regained a normal state of consciousness, stick with them a bit longer.
I hope this might be useful to someone when they are faced with a fellow human being having a seizure. It can be quite scary, especially if you haven’t seen one before, and more so if it’s someone close to you, but maybe you’ll understand how it’s important to be strong for the person you’re helping.
Disclaimer: I’m not a medical professional. This is just my experience from having to help someone close to me get on with their life and live with epilepsy. If you feel out of your depth, then call the emergency services, or try and locate a first aider, but don’t leave the person having the fit until help arrives.