Have you seen someone else have a sei... - Epilepsy Research UK

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Have you seen someone else have a seizure? Would you know how to deal with it if you did?

AmyBadd profile image

It occurred to me that I have never seen anyone else have a seizure in real life, despite being diagnosed about 13 years ago and having seizures myself on a regular basis for the first 7 of those years. This is despite an ex-boyfriend and my now husband both having siblings with epilepsy (completely coincidentally, I might add).

Most of the time I was having seizures I was a teenager living at home and my parents and two younger sisters knew perfectly how to care for me (after a tonic-clonic seizure it would often take me hours to get back to my usual self). That included a sister who is 9 years younger than me. From talking to my family about the illness now, I think they might be more frightened of it than I am. Personally I am not sure how well I would deal with seeing someone else having a seizure. I now have a huge appreciation for how my family have looked after me.

Does anyone else feel this way?

14 Replies

I agree with you here. I never knew what it was like to witness a seizure till I went to work for a few months at an epileptic establishment. The one which has always left a mark is when one of the children had a seizure over the breakfast table, and it exhausted his body so much that he was asleep in bed for the rest of the day. In comparison I only had petit mal, so my fits were just like daydreams, and everyone knew to leave me to come out of them. Like you, for years I have wondered what I would do if I witnessed someone else having a seizure.

I have seen my 23 year old daughter having all types of seizure many times. They are all unexpected and can be horrifying, funny, sudden; and a reminder that we cannot take the effectiveness of her cocktail of AEDs for granted. Until our daughter developed severe and unpredictable epilepsy I had never seen anyone have a seizure, so I can imagine the shock someone may feel when they see one for the first time. We do not expect her array of support workers to have experience in handling epilepsy (we didn't) so we film her seizures in order that any new support worker can start to get used to the sight.

Hidden profile image

I have had epilepsy for 40 years now. The only time I have ever seen a seizure is when I was at a conference a few years' ago, which was organised by Epilepsy South Africa for fellow people with epilepsy to get together, and share their experiences. I must admit, it was one of the most frightening things I have seen. One must remain calm... there are so many different types of seizures, which affect us all differently, i.e. some people can get aggressive. I have major grand mal (tonic clonic) seizures, but now understand what happens and what the body goes through. In the case of a tonic clonic seizure, stay with the patient at his/her side, talk calmly to him/her during the process, rest the head on a soft pillow/handbag/etc. and turn the patient over gently into the recovery position. Lower the head softly. The seizure has to take its course and cannot be stopped once it has started. Do not put anything in the patient's mouth. Call an Ambulance/Paramedic should the seizure last longer than 5/10 minutes. In my case, seizures last longer than 30 minutes, and an Ambulance is often needed. Oxygen has to be given due to respiratory problems, but I am always grateful for the wonderful people out there who are always willing to help in times of need!

ecossaise profile image
ecossaise in reply to Hidden

I am one of the ones who has never seen anyone else having a seizure - even as a nurse 40 years ago!! When I was first diagnosed with epilepsy - back in 2005 - I was separated from my husband and it was my adult son who was with me the first time - and for quite some time afterwards - and he had to deal with me having several tonic/clonic seizures a week for a long time (4 years in fact) He says it was terrifying at first before he learned exactly what to do - or NOT do. He also had to deal with me going into Status Epilepticus on 2 occasions. He learned to know when he had to call the paramedics - as did my long suffering good friends and neighbours!! When I got back together with my husband 3 years ago, he has had to deal with me having absences and night-time tonic/clonic seizures (my day time seizures are completely under control) and, to this day, is terrified by them. He tells me he finds it a very frightening thing to watch. I am left exhausted for up to 48 hours afterwards - even by the milder nocturnal ones - sometimes 4 or 5 in a night but not very frequent in themselves. My "joke" is that I am the only one NOT frightened by the seizures as I haven't got a clue what happens!!!!

AmyBadd profile image
AmyBadd in reply to ecossaise

ecossaise, that is a big part of what I was getting at! It is funny that we don't understand what happens to us nearly as much as our loved ones do! We are so lucky to have such caring friends and family!

endogenous91 profile image

Hi, I totally agree with you! I have had epilepsy for about the same time as you and still have tonic-clonic seizures a few times a month.

I know how you feel, my younger sister was just 5 when I was diagnosed and was amazing at dealing with me if I had a seizure, as well as my parents and older siblings.

Like you, I have never seen someone have a seizure and would not have a clue how to act, I would probably have a massive panic! I have asked my friends/ family to film me, but this has never happened because there is never a good time!

Like you said having a seizure is tough and takes a while to recover from, but I never remember it, whereas my family and friends must have awful memories and experiences. Like you I am so thankful for what they have done and still do for me :)


Hidden profile image

See my response above. I have had epilepsy for 40 years and seen one seizure. All details are above.

My wife suffers from seizures all the time. It is really scary seeing your loved ones go through that. But you have to be strong for them and just talk them through it and let them know you're there for them. Ask them questions and if possible prop there head up with a pillow and turn them on there side to keep there air way flowing. If its longer that 4 to 5 minutes I would contact emergency help to be safe. You just have to be strong no matter how scary it is because they are scared too and need you

Hidden profile image

I am always conscious during a tonic clonic seizure and can hear but not speak fluently during a seizure. If someone is with me, and battling to know what to do, I can vaguely speak and tell them the basics of what to do. It is frightening for us all, but I know my seizures now and find the exhaustion afterwards the worst!

I am 25 years old, and was diagnosed with grand mal seizures since i was 2 years old....I have neither witnessed a seizure either, i generally have always gone by what my mom or sisters told me what happened when they saw me having one. However i can tell you, biting your tongue(generally cannot speak at least 3 days without it hurting to talk), and the exhaustion is the worst part, i can barely stay up for more than 5 minutes without my body forcing me back to sleep...

Hi I have had epilepsy for 30 years. Saw someone have a seizure on a canal bank put my coat under her head as I always used to wake up with headache after seizure, put her on recovery and rang ambulance, it was tricky as no-one around, no mobile phones and was scared she would go in river, but she was fine. Not had seizure for 21 years

A young ma at work had a seizure. Everyone roundabout stood looking. He did not fall down so I took hold of him, very tight. Just for a minute or so. Did make me feel nauseous. The next day he was fired from work!!

AmyBadd profile image
AmyBadd in reply to Cavallo

That’s disgraceful! Do they understand he had a seizure? What reason did they give for dismissing him?

Cavallo profile image
Cavallo in reply to AmyBadd

It's just not the safest place to be when you have Epilepsy. Same as driving. Not safe for horse (I worry more about the horse than me) or human. It has nearly cost me my life in U.S.A could of been in wheelchair for life, coma 2 months. Still I've kept going. Though now hard to find work. Had no work since December, word gets round!

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