Triggers and recognising them. - Epilepsy Research...

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Triggers and recognising them.

13 Replies

I have just been reading something about triggers and it made me realise I don't really know all things that trigger my fits/seisures.I do know using drills or electric saws etc are a no go for me so steer well clear of them now.It actually took a few years for me to accept this despite all my family telling me so.One reason i guess is i am keen on DIY so its really frustrating I cant do everything I want to now I have the time to do so. Also i can be really stubborn at times and I hate admitting I am vunerable .Some would call it stupid of course and I realise that.But its been a few years since I have used those particular tools yet my fits/seisures have got worse so obviously I must have other triggers. I just wish I knew what as its worrying not knowing when its going to happen.The biggest problem I have is i rarely remember anything previous to my seizure or indeed anything about my stay in hospital after them.In fact only last year i had to stay in hospital for 8 days as i had a cluster of seisures over two days and remember absolutely nothing about my stay and still don't.The last one i had last week was no different and i can only go by what my family tell me.Luckily i was only in hospital over night and i was relieved to get home.But anyways i was just wondering what were the most common triggers others had.

Marky.

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13 Replies

Hi marky889, I am so glad to hear you are out of Hospital and feeling a little better. I have had epilepsy for 41 years and still don't get a warning before a massive seizure, which are 35 minutes long now. There are many triggers but they can all affect us differently, depending on how long the seizure is, the type of seizure one has and also the effect of the medication we are on. Triggers can be as follows:

*Heat and Humidity

*Anxiety, Stress and Hypertension

*Flashing lights, i.e. movies and videos on T.V. or other. Playing video games is one of the worst, but I have not played for years due to seizure activity.

*Partying, i.e. alcohol, late nights, loud music and more!

*Severe headaches

*Sitting on the computer for too long. If on the PC, sit for about an hour or less, then take a short break... It does one the world of good!

*Perhaps an odor, numb feeling or tingling, i.e. an aura which might be a warning sign of the start of a seizure.

The above might help you to associate what might start a seizure and possibly what to avoid if possible.

I had a seizure whilst driving at the age of 17, and haven't driven since. I am now 57, so please be careful should you choose to drive.

Feel free to communicate with us anytime or follow me on Twitter (@lesleydonnelly1) or Facebook should you wish to.

Regards,

Les

trevor1954 profile image
trevor1954 in reply to

Hi Les

About triggers.

Every time I have a seizure, Just before its as though all my body goes cold especially around the stomach and I get a weird feeling in my head which is hard to explain. When it does I shout my wife and she comes over to talk to me to see if I can answer her and takes note of all that happens.

Trev

in reply totrevor1954

Hi Trev, the stomach feeling cold and the feeling in the head are probably auras. The shouting at your wife could be a feeling of insecurity that a seizure is about to happen!

Keep strong!

Les

trevor1954 profile image
trevor1954 in reply to

Hi les

Again. what is your name on facebook

in reply totrevor1954

Hi trevor1954,

Facebook details are facebook.com/lesmal

Send a Friend Request and let's go from there.

I need a full name from you to recognize profile and more when it comes through!

Keep well.

Les

in reply to

Hi les I never knew there were so many triggers and it certainly is useful to know so thank you.I certainly get stressed at times although I try not to and i usually succeed in that by concentrating on my family .I do watch TV but not a lot but never video games or partying these days except at family occasions.Loud music i am guilty of for sure as its my way of concentrating my mind i guess also i love music.I must say i always have my head phones on so i don't upset the neighbours and yes i sit at the computer a lot talking to friends.Maybe i need to do less of that.I certainly rarely drink these days .I don't do twitter or facebook as i am a bit wary of them but thanks for the offer.I am guilty of doing journal type blogs like live journal and made a lot of friends on them. You have helped me a lot by pointing out all that so thank you.PS i never drive but i would not be able to now anyways.

Marky.

DarrenC profile image
DarrenC

Hello mate, my name is Darren I'm a 36 year old man, who has had temporal lobe epilepsy from birth. But I didn't know this until I was 20 years old? I had a grand mal seizure in 1999, lasted 3 hours and I had my heart stopped just short of 4 minutes. My school life was a mess, I can look back now and see it was because, of the heightened nerve activity in my temporal lobe. But my natural fitness level was to strong for the nerve activity to cause fits? but it was drawing blood from my memory to cope with the heightened activity, leaving me with a short concentration span. So to sit in a lesson and listen to a teacher was hard. I was placed on an anti depressant called Tegretol,after my grand mal seizure this basically stimulated my nervous system 10 fold!!! For 14 years I have had to consciously control every emotional thought & feeling through the sensory area of my brain(ie) my eyes, ears, nose, tongue and hairs on my body? due to the activity in my temporal lobe creating pure panic stricken insanity!!! sesvere anxiety, depression and panic!! I have been single for 15 years, and it put me to suicide twice!!! I joined the church of Jesus Christ of latter day saints, in 2010 after bumping into a couple of missionaries spreading the word of the Bible. when I was going to put myself off a bridge!! I am now a qualified personal fitness trainer who has given up Tegretol on my understandings of my life!! neurology is saying absolutely nothing to me, my heart & lungs control my nervous system not my head!! you find the answers to life through your feelings not your thoughts!! You are no different to a car!! trust me you don't service that car it gets stressed out!!! and won't start on that freezing!!! Monday morning? your body is no different, so break the pain barrier, raise your natural highs(endorphin) the confidence in your feelings, and reduce the emotional thoughts in your head!!! the Bible is the true understanding of life!!! middle age humans are thicker!!! than a 7 year old child who simply live there lives through there senses(ie) hearts!! not there heads. the ten commandments take a read? the simplicity of life!!!

in reply toDarrenC

Hi Darren you certainly have been through a lot and i am glad you found a way to sort things out.However i am not into any kind of religion totally through my many bad experiences as a child in care.That will never change but thank you for your reply.

AmyBadd profile image
AmyBadd

Hi,

I think some of the things that Les and Trevor mentioned are auras rather than triggers. By my understanding, triggers are what cause your seizures and auras are a warning you have one coming on. Obviously both important to be aware of, but slightly different.

My main trigger is not getting enough sleep. Most of the tonic-clonic (grand mal)seizures I have had have been either first thing in the morning or in the evening. They have often occurred after I have had a late night or got up early for some reason. I suppose it was probably my family who made the connection, but when all the pieces were put together and we realised I have JME (juvenile myoclonic epilepsy), it turns out that lack of sleep is the main trigger for this kind of epilepsy.

Amy

in reply toAmyBadd

Hi amy well i certainly get up early every day but that is mostly though being a postman for many years and i cant get out of the habit of getting up early i guess.But its useful to know.My siezures are all grand mal and happen at any time and i never go out unaccompanied for that reason .I used to feel so bad about them mostly because i didn't like upsetting the family and especially the younger members like my grandchildren. Thanks for your reply.

Hi Amy, all triggers I mentioned are triggers for me with the tonic clonic seizures I have. Very seldom do I get an aura. Lack of sleep doesn't affect me too badly, but it can be one of the worst for others. I am also Hypothyroid which is to do with estrogen/hormonal levels and when hormones are 'up and down', a tonic clonic is bound to happen! The two worst triggers are 'heat and stress' for me! Have a great day.

Hi Marky889,

Sorry to hear you don't do Facebook or Twitter - I am Admin to so many Groups and getting others advice on a problem is also worthwhile when one doesn't understand a problem. Triggers/auras can affect everyone so differently, as we all have a different type of epilepsy. I find heat and stress are the worst for me! If any further advice wanted, feel free to ask!

To Anyone on Facebook & Twitter,

Feel free to make contact with me should you wish to.

I have my own Page that I put a motivational quote on every day to make everyone more positive, never give up hope and go forward with their epilepsy. The past is gone, the future hasn't yet arrived, so live for TODAY!

Anyone wanting to send a Friend request, feel free: facebook.com/lesmal

My Page link: facebook.com/EpilepsyMotiveQuotives

Have a super Easter weekend and thinking of you all!

Les

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