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I HAD A tonic-clonic seizure on the morning of December 27 2016, I had never experienced any seizures before this so it came as a shock to myself and the people close to me.
In the months leading up to this first seizure, I had been feeling very strange. I was convinced that I was having slight panic attacks due to the anxiety of Christmas coming up, I did not realise that this was the beginning of something much bigger.
I was getting an overwhelming feeling of discomfort in my whole body, unsure what was real. I got strong feelings of deja-vu and smells that weren’t actually there. I later learned that the “strange feelings” I was having were actually simple focal seizures.
It’s been great to speak to other people with epilepsy about this as it has made me feel less alone. I didn’t think anyone would understand, but they do. It is essential to speak about things that make you feel scared, worried or upset.
I still have simple focal seizures quite regularly, the way I cope with them is to breathe deeply and try to fight any thoughts of fear. I repeat in my head “this will pass”. It seems to work for me.
Temporal Lobe Epilepsy
Although my seizures started at the end of December last year, I was not diagnosed with Temporal Lobe Epilepsy until May of this year when I had three tonic-clonic seizures within a couple of hours.
Like a lot of people, my EEG and MRI did not show up any classic signs of epilepsy so it took a long time to diagnose the condition. Following my diagnosis I was not myself at all, the seizures had affected my memory and moods quite intensely and I was advised to take two months away from work.
Having to take time off was difficult and frustrating as I really enjoy my job. It is challenging to spend days upon days at home, I did begin to feel left out as I couldn’t do the things I would usually do.
I wasn’t able to go out with friends regularly, firstly because I was still in a lot of pain and secondly because I could not afford to. I am happy to be back working full-time now but I do have to take extra good care of myself.
I cannot do the strenuous hours I would have done before my seizures started. If I overdo it, I am guaranteed to begin having simple focal seizures within 24 hours.
Friends and family
Living with epilepsy is challenging, it is a challenge for those who have the condition but it’s also a challenge for their friends and family. I have a wonderful support system around me, my family and friends are very understanding and do not get angry if I cancel plans or don’t feel up for the day that lies ahead.
However, when I was first diagnosed, some people weren’t so understanding. I have fallen out of touch with friends who weren’t prepared to help out when the seizures began to strike. Everyone is different, but for myself I have to make my social circle as easygoing as possible.
Due to my diagnosis of Temporal Lobe Epilepsy, my emotions are heightened and I am overwhelmed by difficult or upsetting situations. The more of those situations I can avoid, the better.
I have been on Lamictal for SIX months now and it seems to be doing the job. I had my si month check up this week, my doctor has also been a fantastic help throughout this journey. I am confident that he has my best interest at heart.
If you are ever having problems with a doctor, I would suggest a change. It’s vital to feel comfortable in the hands of the person who is looking after a medical condition you have.
Epilepsy Ireland’s help
This Christmas will mark one year since epilepsy became part of my life, I have learnt a lot about myself and this condition in the last year. The support that Epilepsy Ireland gives is incredible. I attended an Innerwise seminar last month and I thoroughly enjoyed it. It is reassuring to know that my symptoms don’t only belong to me.
This past year has been testing but I have found a sense of pride in myself that I did not have before, I hope others have found this too.
Eva-Jayne Gaffney is an actress whose star is rising after appearances in the multi-award winning Sing Street as well as Red Rock and Can’t Cope Won’t Cope. Almost one year ago she had tonic-clonic seizure and has been learning to live with epilepsy ever since. last week was National Epilepsy Week and for more information log onto epilepsy.ie.
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@Eva-Jayne
I know the feeling, I had my firste cit when I was 18, scary stuff, along with getting physical injuries as a result .. Im 47 now and havent had a fit in 9 years (bar 1 which was a result of slight trauma after jumping into a lake to save my dog).
Im also on Lamactical and find them great..
Just keep hydrated get loads of sleep, lay off the alcohol and try never to get too hungry….works for me.
All the best and hopfully they will be a distant memory in the future..
My daughter had one of thes n the middle of the night, the only reason we knew was because she fell out of bed. We called an ambulance and they admitted her, she had a 3 hour memory lapse, and was out of it for 24 hours. Her eeg was abnormal, 4 months after they did another eeg. That too was abnormal. She has never been diagnosed with epilepsy but she is at high risk of another seizure. If she has one we’ve been told to call an ambulance immediately.
The drugs for epilepsy can be a lottery particularly if the person is at a young age I have heard many people will try Natural Remedies first
@Johnny Mason: My daughter had major brain surgery in April to remove a tumour. Had two weeks of as-yet undiagnosed seizures. Doctors not convinced they were tonic-clonic ones and more than likely vasovagel. I was there for a few, scared me enough to allow them to put her on a low dose medication on the off chance. No amount of turmeric would convince me to second guess am complimentary medicine. You watch your twelve year old go rigid and start twitching and come back to me.
@Emma Fitzpatrick: Really hope that your daughter makes a full recovery and I am very familiar with grand mal seizures from your comment any serious operation to the brain area can bring on a seizure it may not be connected to epilepsy so the drugs prescribe in that situation would be essential to allow the healing
@Johnny Mason: I’ve spent a lot of time in various A&E Departments over the years, but I’ve yet to hear someone cry out for turmeric, ask for herbalist or cry out for the want of a reiki massage.
These things don’t work, if they did they’d cease being labelled ‘alternative’ and just become medicine, it’s the same with thought’s and prayers, if they worked ambulances would stop at churches.
@Boyne Sharky: you wouldn’t hear them crying out at A&E over the years because they don’t need to attend when alternative medicine or way of life works for them and Church’s have been around before ambulances but that doesn’t mean Ambulances don’t serve a important purpose
Can anyone who is familiar with Lamicital tell me if they’ve had any side effects? In particular, hair falling out and bad rash on your body?
Thanks in advance
@Mrs Wynne: Yes my son had many side effects and we brought him to Hospital on a few occasions and his immune system seemed to become weak and suffered from rashes and a case of blood poisoning
@Johnny Mason: thank you Johnny. Did they change him from the medication? I’ve just changed to Lamicital in the last 9 months. They don’t agree that my skin and hair is related but I firmly believe it is.
@Mrs Wynne: Yes he has gone back on Tegretol and it seems more suitable for the time being I do know a young girl who decided to change her diet and gave up all dairy products and it had resounding effects but the research on epilepsy medication is a bit hit and miss
@Mrs Wynne: yes I experienced bad rashes and even blisters on my face while on Lamictal. Was eventually switched to Keppra – no issues since.
@Mrs Wynne: Ive been on Lamatical for over 10 years and thankfully no major side effects..Have a read up on them and peoples side effects and compare..
@Mrs Wynne:
Two members of my extended family have been in that position, one was on tegratol was advised to move to lamicital but suffered from dizziness and headaches, she kept feeling a seizure (petite mal) was imminent, went back to tegratol and is fine now. This was a few years ago
I know another lady (Grand mal) who is on lamicital for the best part of ten years with no trouble.
I know this information is probably no help, I do hope your daughter’s health improves.
@Mrs Wynne: I’ve been on Lamictal for 15 years, started on 50mg and now 500mg a day. Never gone longer than two years without a seizure though. I thought I was indestructible in my twenties and didn’t mind myself as much as I do now. I had a few small rashes at the very beginning but nothing at all now. Funny you should mention the hair-loss, I thought it was just natural ‘thinning’ but ya never know…. But no side effects that me or my doctor can see. I just needed to get the dose right. And seemingly the more weight I put on, the bigger the dose I needed. Happy on 500mg now though, seems to be working.
@Mrs Wynne: it has effected my teeth, apparently it is a known side effect. Was on 500 lamictal for 13 years, reduced to 400 (slowly) and removed my topamax completely, last month had my first seizure in 12 years, going back to the higher dose, will deal with the teeth separately
@Mrs Wynne: Lamictal turned my child into a walking zombie for the whole time he was on it. But it was probably just the absolutly wrong medicine for him! keppra/chloral hydrate mix was the solution in the end( after 7 – 8 long years) If the Lamictal is keeping the seizures at bay and no other is, rashes and hair loss may be the sacrifice you have to pay.
I developed epilepsy about 3 years ago (temporal lobe, but no tonic-clonic movement). Started on Keppra but due to side-effects changed to Lamictal. No side-effects since. I’ve been fortunate to be sitting down for any of my seizures as I get a clear warning first. Like most things in life, you get on with it if you have to. Apart from the aura, I won’t even be aware I had a seizure, so it’s not the worst type of epilepsy.
@Mrs Wynne: side effects include apathy, slight depression, occasional rashes. Don’t let this put you off the medication. Going to a gym and living a healthy lifestyle really helps to eliminate them. I’ve been taking lamictal for a few years and it has controlled my condition.
Mad that it just came out of nowhere like that!!! I like reading your experience because my son started having seizures when he was about 8 but he could not describe how it feels because he has special needs. I can only guess that he feels something like you do.
I wonder could there have been an environmental chemical trigger. Did author move into a new house or have any chemical based renovations carried out such as spray insulation, new windows etc?
Eva Jayne my best friend had epilepsy. I would regard him as the greatest person I’ve met . He was a rare person – goodness walking among us. You are a mighty person. Hope all goes well for you and that you’ll come out of this and eve greater person than you are. Your story reminded me of my great friend and so I had to write these few words
‘Vallend ‘ or Falling is a short Dutch documentary about epilepsy made in 2014. All the info. is probably on the imbd and I’m sure it’s on you tube or one of them
Thanks Eva-Jayne for your piece. Although my Epilepsy is different to yours; Complex Partial with slight risk of elevation to tonic-clonic (I’ve had a few of those too) your description of feeling emotional and overwelmed by certain situations resonates. I know that’s no consolation to you but be aware that reading another person’s experience helps. Be good to yourself and keep well.
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