Epilepsy is nothing new! ⠀
We have records* of epilepsy going back over 4000 years to the Babylonian period** and science, medicine, and common sense (!) mean we recognise that it has existed for millions of years, amongst soooo many species. ⠀
“The oldest detailed account of epilepsy is on a Babylonian tablet in the British Museum. This is a chapter from a Babylonian textbook of medicine comprising 40 tablets dating as far back as at least 2000 BC.”
The Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain.
As awful as epilepsy still is, we are at an unprecedented point in history, where we are gaining more knowledge about the human brain, at a faster rate than ever. ⠀
At least we aren’t back in 2000BC when even more people (pretty much everyone) thought that seizures were down to evil spirits (which in certain parts of the world, some people mistakenly do still believe). ⠀
There’s heaps of interesting information in history regarding epilepsy. Google it. Check it out. Empower yourself with knowledge!! ⠀
You are amazing. You are inspiring.
Is the holiday period a bit stressful for you?
Then make sure that you take time out for YOU, regularly. Plan some “me-time” doing what helps chill you out, even if it’s for only a few minutes each day. Examples:
- Indoor exercise/safe walking/running
- Gardening
- Cooking
- Reading
- Mindfulness/meditation
- Music - listening or playing
- Something else creative or arty
- Sometimes even having a shower can help!
Many people have no idea just how “common” epilepsy is.
Whether you have the condition and feel alone or one of your friends or family has it and they feel alone, they needn’t feel so.
There are lots of us out there ready to listen! When people say they have “Parkinson’s”, yes it’s awful, but there isn’t the same stigma attached to it as with epilepsy.
The stigma attached to epilepsy is ridiculous! What are your experiences? Do you know what type of epilepsy you have?
Tell people the above figure - it’ll shock most people and start a conversation!
The ketogenic diet was introduced as a potential epilepsy treatment 99 years ago!
Today, there are several diet options, and ketogenic diets are considered one of the four main ways to achieve seizure freedom (along with medication, surgery and nerve stimulation treatment).
Read more about the research, as well as practical information on candidacy, diet initiation, challenges, and successes.
See this info from the ILAE - International League Against Epilepsy for more info.
Time for fireworks? Sparklers? Bonfires?! ⠀
Who enjoys this day/night/celebration? Not all countries have it, but those that do; well it can sometimes be really fun! ⠀
Heaps of us with epilepsy have to be careful we don’t get burnt in the kitchen/next to a heating appliance, etc., so...⠀
...don’t get too close to any bonfires or fireworks. We don’t fancy you falling in/on a burning object during a seizure. Choose to enjoy the beauty from a distance (as should everybody!)! ⠀
We do feel for those with photosensitive epilepsy who could have seizures triggered by firework displays (and so may have to avoid them). ⠀
We also feel for you guys who are anxious when it comes to loud noises.⠀
Just as some people don’t like pop/rock concerts (due to loud noises/too many people/absolutely terrible music ), some people with epilepsy or/and ASD (Autism Spectrum Disorder) don’t like loud and sudden noises (which can make us anxious and more likely to have seizures). So...
...chill tonight, people. Do what you are comfortable with and what makes you smile.
You are amazing. You are inspiring. ⠀
Poo. We all Poo.
But many of us struggle with constipation as a side effect of Anti-Epileptic Drugs, other drugs we might take, lack of physical movement, and more.
It’s crucial to recognise if you or the person you care for experiences constipation. Apart from it being very uncomfortable or even painful, it can cause anxiety, lead to seizures, and can be lethal.
See the great poster of information below.
Talk to your epilepsy nurse, neurologist, or GP if you or the person you care for struggles with constipation. Don’t be ashamed.
Story (and this is a true story with real quotes):⠀
Torie felt an aura seizure, but was being stubborn and didn’t move further back on the platform... ⠀
She was thinking: “Ok, it’s an aura, but I’ll be ok, I’ll try and remain chilled, this Epilepsy can’t control me, I’ll just stand here...”. Her words today (literally): “What a dipstick”. ⠀
Torie can’t remember falling on, being on, or being rescued from the railway line. ⠀
She also can’t remember much about the day; with only a vague recollection of being with staff in the station, who stopped her from being both electrocuted and run over by a train! ⠀
No injuries at all (bar “a pathetic couple of bruises”!)!
Thank you to UK British Rail staff for saving a life!! ⠀
Who else has had any crazy accidents as the result of seizures? ⠀
PS Torie founded Epilepsy Sparks and is much more sensible now.
Ictal is the period of time when a person is having a seizure. ⠀
For example, if a person has an aura then they are “ictal”, as they are if they have a focal, a generalised, or any other type of Epileptic seizure. ⠀
Now here is a longer description(!):⠀
“Ictal refers to a physiologic state or event such as a seizure, stroke, or headache. The word originates from the Latin “ictus”, meaning a blow or a stroke. In electroencephalography (EEG), the recording during a seizure is said to be "ictal.”* ⠀
If a patient can tell their neurologist how long all of their ictal periods last (i.e. how long their seizures last!) then they should get a gold star. It’s invaluable information for better treatment.⠀
If a person is living alone then they might not know anything about a seizure (their ictal period) until they are post-ictal and fully conscious.⠀
It’s very important for a person to keep a record of their physical and emotional feelings both before their seizure (pre-ictal) and after their seizure (post-ictal), and then to present this information to their Epilepsy Nurse and/or Neurologist. ⠀
Speaking of which, please do keep a seizure diary. It’s absolutely key to receiving the correct treatment. ⠀
Hopefully, you’ll now understand the term “ictal” if you hear a Neuro/Nurse/Doctor use it! ⠀
We dare you to use it in a conversation this week! ⠀
You and/or someone your know/know of; copes with epilepsy (controlled or otherwise). You and/or they are amazing. ⠀
STAY COOL!
Having heat stroke can negatively impact your neurological functions and cause seizures.
It’s crucial when you have epilepsy to stay safe at a regular temperature. Stay in the shade, drink enough water, and don’t forget to eat either (we know some of us lose our appetite when it’s hot).
“Heat stroke (HS) is a medical emergency and life threatening condition, characterized by body temperature over 40°C. This can lead to dysfunction of multiple organs such as the heart, liver, kidneys, lungs, blood coagulation system, and central nervous system. Neurological complications include change in consciousness, cerebellar dysfunction, convulsions, aphasia, muscular weakness, and parkinsonism.”
(Won Gu Lee, So-Young Huh, [...], and Meyung Kug Kim)
Epilepsy research IS exciting (when translated ha!)!
There are heaps of people from around the world investing their time, energy, and quite frankly; their lives, to epilepsy research!
Did you know that it can take 20 years to get a drug from the lab to our pharmacy (because so much research is required)?
Did you know that a drug can be tested for 20 years and then at the end found to be too dangerous for us and we can’t even use it?!
Did you know that epilepsy research teams are made up of general researchers, assistants, mathematicians, neuroscientists, fellows, professors, statisticians, and more?
Did you know that there are around 60 different types of seizure identified SO FAR? Imagine the research required for each!
Did you know that there are over 100 genes found to play a part in epilepsy SO FAR?
Taking into account the above, this is why we need support and quite frankly government funds to support research!
We need the research to help treat us, to help relieve the distress on our loved ones, to help us have better-controlled seizures so more of us can get into work, to help reduce drug side-effects, and more.
What do you say? Do you agree?!
Don’t assume that because I’m staring at the board that I’m just daydreaming.
Don’t assume that because I’m staring at that random person that I’m being inappropriate.
Don’t assume that because I’m looking glazed over that you’re boring me (although you might be, haha!).
When people have absence seizures we look like we are staring into space/possibly perving - when we aren’t!!!
Absence seizures don’t have us shaking around.
Absence seizures can make us look like we are away with the fairies for a few seconds.
Absence seizures often don’t even have the kindness to let us know that we’ve had one!
Absence seizures can leave us tired and needing a rest.
Absence seizures are generalised meaning that they go for it on both sides of our brain at the same time.
So, whilst we might look like we are chilling, we really aren’t.
See here for more info:
Don’t assume that a person with epilepsy will have seizures.
Loads of people haven’t had one in years because their medication(s) have controlled them!
PS But don’t assume that if a person has controlled seizures they don’t have to try and tolerate common drug side effects such as exhaustion, cognitive disfunction, mood alteration, digestive issues, and more.
PPS Many people have partially-controlled seizures = taking drugs and STILL having seizures.
PPSS Some people with controlled seizures are really lucky and don’t have any side effects of drugs! Yay!
Plus of course, some of us have stubborn brains who won’t have their seizures controlled by drugs at all.
We support the rare epilepsies such as Dravet, Ring20, Ring14, SCN2A, HH, LGS, CDKL5, and more!!
Some rare epilepsies are so rare that they can affect only 1 in 200,000 people! Can you imagine??
And because they are so rare there’s hardly any research going on into helping these people lead better lives.
Often it takes years for people to be diagnosed with these rare epilepsies because many, many docs aren’t aware of them.
The AEDs they take often don’t help them reduce their seizures just like us.
People with Dravet have a 40% risk of dying of SUDEP.
We need to support those affected by these rare epilepsies - and support the people who love them and care for them too!
The thing is, us lot with ‘regular epilepsy’ (actually no, there isn’t such a thing! But you get what we mean, right?!) have SO much in common with those with the rare epilepsies. So let’s get together.
Follow Epag Epicare who supports those affected and works with carers and specialist Epileptologists.
Join us in following Dravet Syndrome UK, Hope for Hypothalamic Hamartomas, LGS Foundation, CDKL5, KCNQ2, Tuberous Sclerosis Association, and all of the other orgs featured on our rare epilepsies page!
Just to say...we get it. ⠀
AEDs (Anti Epileptic Drugs) are prescribed to hopefully help (if not completely) control a person’s epilepsy, and approx 70% of patients can have their epilepsy controlled with drugs. ⠀
Some of the side effects of AEDs are tolerable. They may have rubbish side-effects (such as tiredness); but you get on with it ok. ⠀
Sometimes, however (and this can vary from day to day, from person to person, and at different points in a patient’s life) the side effects of AEDs can be terrible. ⠀
Often we have to compromise. One could: ⠀
- Take (as prescribed) the AEDs recommended by your neurologist; have none/fewer seizures and increase your life expectancy; whilst enduring the side-effects, or;* ⠀
- Not take AEDs, have seizures, accept a potential reduction in life expectancy and potential increase in accidents and injury; but have no AED side effects.*⠀
It’s always best to be 100% honest with your neurologist and epilepsy nurse. Oh, and yourself! Even if you worry that the Neuro or nurse might not like what you have to say (e.g. I hate these drugs, they make me feel moody/sleepy/sick/make me put on weight) - don’t worry - they will have heard it all before! ⠀
There are more AEDs available in some markets than there used to be, say 10 and 20 years ago, meaning: if one drug doesn’t work for you, then there may be another one to try. ⠀
Communicate with your medical team. Treatment isn’t just about drugs, it’s about you, improving your health, and making your life better. ⠀
You are amazing. You are inspiring. ⠀
*These are VERY short versions of what can impact people with epilepsy, both with and without drugs. Each person is very different. Reading this post is not an alternative to discussing your epilepsy with your Neurologist/Epileptologist/Epilepsy Nurse, and instead, we encourage patients to have regular contact with their medical professionals.
Never think that 100% controlled seizures mean an easy life.
They really don’t!
It’s wonderful to have controlled seizures as a result of AEDs (although, yes, one would rather have no seizures and no AEDs either!) and it’s something that we all desire. It’s terrific and those who no longer have seizures are very grateful for this. But...
The AEDs that most still have to take have side-effects. Especially if one is on them, like, forrreverrrrr! Such as:
- Drowsiness;
- A lack of energy;
- Agitation;
- Headaches;
- Uncontrollable shaking (tremor);
- Hair loss*
- Unwanted hair growth*
- Swollen gums
- Rashes
*Seriously. EXTRA hair. Or LOSS of hair.
Then:
- Anxiety;
- Depression;
- Moodiness....
Aarghghghghgh!!
And yes, people still having seizures (who may have refractory/ pharmaco-resistant epilepsy) experience the above too, we are just explaining that those with controlled seizures aren’t free from the dodgy-brain effects entirely...)
Then there’s the:
- “What if I do have a seizure again?
- “When will I have a seizure again?”
- “I’m scared to drive again because what if I have a seizure if I when driving and kill someone?”
- “What if I do change my life, move to the country, get a new job, start a family; and then start having seizures again?”
- “I’m so lucky to not have seizures...but I feel guilty because so many others still do have them!”
Another common thought (although rarely spoken of due to embarrassment/shame) is:
- “I hate my epilepsy but I’m used to a life with seizures. What do I do now?”
....then;
- “Everyone is going to expect me to get an amazing job, live life as ‘normal’ (whatever that is), be happy, flourish and just ‘fit-in’”.
Sometimes, there are even vile people with epilepsy who make people have thoughts like:
- “The epilepsy group thinks I’m fine now because I’m not having seizures. I feel abandoned and alone. I don’t fit in anywhere .”, and;
- “A person I spoke to is angry and jealous of me because my seizures have stopped. I get it and I wish the best for him/her but why should they be mean to me? Is everyone in the group going to be like this now?”
And because of the above, even if one hasn’t had mental health issues before, they may now develop:
- Anxiety;
- Depression;
- Moodiness....
Aarghghghghgh (again)!!!
Goodness me.... human brains in general...
Anyway, our points are that, yes:
- It’s utterly, utterly fantastic to have controlled seizures and, just “wow”. Tremendous x a squillion, and;
- Those with controlled seizures are so very grateful for it, but...
- Everyone please be sensitive, especially if a person has had uncontrolled epilepsy for a long time; they are now experiencing a new, exciting, yet possibly intimidating life of opportunity that they haven’t faced before;
- If you don’t have controlled epilepsy, rather than be jealous and angry, try and be envious and supportive. Don’t turn into an a@@h@le.
- Families/friends: realise that that person affected might need you now more than ever; as they face a new, possibly opportunity-filled life which whilst exciting; without your support can be very frightening!!
Anyway, that lengthy piece is over! You are all wonderful; epilepsy refractory or not, and indeed, epilepsy or not.
We admire people who know nothing about epilepsy but want to learn!
It’s fine to not yet know anything about a certain topic, as long as one is open to learning.
We’ve met heaps of people who’ve confessed that they nothing about epilepsy. And that’s great as far as we are concerned, because:
- The person has been modest and admitted their ignorance (ok, harsh word... their “lack of knowledge”!) ⠀
- We are able to use the time as an opportunity to educate them and remove the fear that they have regarding epilepsy ⠀
For those who don’t want to learn...we pity them. ⠀⠀
Where you can, surround yourself with open-minded people who didn’t leave school deciding that they’d never have to learn anything ever again.
Our brains are interesting (to say the least! ), and those not interested are losing out!⠀
You are amazing. ⠀
Enjoy the holiday period…but give your brain time to chill out!
Christmas and New Year can be the most stressful times of the year. Yes, lots of us will be really happy, excited (especially kids (including adult-kids!)!) and lots of us will be ultra-stressed out. Some of us will be upset too.
So: make sure that you take time out for YOURSELF to chill, relax, meditate/whatever de-stresses you. Be careful with the booze (we know....) and make sure you get enough sleep (it's a challenge at party time (we know that too!).
Oh and take your meds!
Why any of this? As L'Oréal would say: "Because you're worth it". (Sorry)
No matter what they say, kudos to you!
For managing your drugs, your lifestyle, for getting up in the morning, and more!
People often don’t get that epilepsy isn’t “just” seizures.
Seizures are bad enough but then there’s recovery time too.
We have to plan everything.
We have to take drugs with unfavourable side effects every day.
We often have to cope with the anxiety that we may have a seizure again and “what if...l”...
Getting to sleep can be hard (due to drugs) and then getting up can be hard (due to drugs)!
But, you people are amazing. You continue to persevere, which isn’t always simple and certainly isn’t ever easy.
You are amazing. Kudos to you.
Whether affected by epilepsy directly or indirectly, remember: you are amazing.
Making epilepsy ultra-interesting! Check out our epilepsy blog: epilepsysparks.com/blog!
We have people from all over the world contributing!!
Epilepsy affects the 65,000,000 patients AND the loved ones, friends, etc..
This is why it’s so important to talk about epilepsy and become more comfortable doing so.
Our blog is to enable people to do this; through education. Even sometimes through humour!
Help us get to the stage where we can just chat about it like we would diabetes.
Check out our blog and share it with your friends, family, employers, and, well, just everyone haha!
Did you know…
that your brain uses 20% of your energy despite only accounting for 3% of your weight?!* Or that epilepsy is so common that it’s the FOURTH most common neurological condition in the world?!
This is why the world needs to be talking about it. “
This is why more epilepsy research needs to be taking place (as it is with Epilesy Research UK for example).
Use this fact when explaining epilepsy to someone: statistics speak volumes!
Whether affected by epilepsy directly or indirectly, remember: you are amazing.
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
Surround yourself with…
Supportive, authentic, empathetic, respectful, honest, and funny people; who want to talk with you about more than just epilepsy!
Those who are only interested in your extra-curricular brain activities... Well, it can get a bit boring can’t it?!
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Seeing lots of people at this time of year (many of whom many of us don’t even get on with) can mean heaps of questions; over and over again, which can mean stress, anxiety, exhaustion...
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It’s natural for people to ask how you are and it’s nice if they are concerned. But... just talking about something negative in your life, all day with different people can be stressful and depressing.!
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If necessary, tell the person that you don’t want to talk about your condition(s) any further because they depress/bore you! Be firm! Tell them that talking about it stresses you out and if you get too stressed you might have a seizure! (Hey it might happen...!)
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Start conversations about music/sport/news/fashion/science or whatever you like/have in common!
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Break the conversation by:
- Asking them about themselves/their children/their love lives;
- They career;
- Their Xmas/New Year/holiday plans;
- Their lovely outfit (even if it’s that grotesque one that he wears every year );
- How much chocolate they’ve eaten;
- Plans for 2019
~
Any other ideas to share - please do so below!!
Whether affected by epilepsy directly or indirectly, remember: you are amazing.
~
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
How you feel is valid. Whatever the reason
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Sometimes others won’t understand and we need to “step away from the vehicle” (ok, “vehicle” meaning annoying/insensitive person, and sometimes we need to “step-away” mentally if not physically possible!).
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Epilepsy and all it involves can get depressing, anxiety inducing, and everything else inducing at times!
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If others don’t understand, or even if you see other people in a “worse” situation than you, don’t question the validity of your feelings.
Sometimes we all may take things the wrong way, may be a bit sensitive, etc., but even if that IS the case, it doesn’t mean that we don’t feel like and that you need someone to understand and not judge.
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You don’t have to have 100 tonic-clonic seizures a day to “justify” negative feelings.
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You may not have had a seizure for 20 years but you’re still as upset about your epilepsy. It’s awful to feel the way that you do and we aren’t judging you. And nor should anyone else.
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When you feel a certain way, try not to compare yourself to those who have more seizures, who are in hospital, those who are poorer or “whatever”. Our feelings don’t work like that.
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If you need to talk to someone and feel like you don’t have anyone, call the Samaritans/another helpline (you don’t have to be suicidal to call them):
UK & ROI: 116 123
AUS: 135 247
USA Suicide Prevention Helpline: 1-800-273-8255
Canada CSPS: 1-833-456-4566
India: +91 84229 84528 /29/30
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Here is the link for many other numbers for other countries: https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines
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PS You’re reading this post. You’re here. You are amazing to us.
It needs to be said…
You are amazing! People coping with an invisible illness/condition like epilepsy are pretty amazing.
~
Give yourself credit every day for:
- Dealing with the AED (Anti Epileptic Drug) side-effects;
- Coping with any comorbidities* (additional illnesses);
- The after-effects of seizures (if you still have them);
- The restrictions that you are held with;
- Not being defined in whole by your condition.
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You are an amazing person.
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Thank you for:
- Making people smile;
- Making people laugh;
- Being you;
- Being positive on our page;
- Giving everyone else realistic hope;
- Not talking rubbish
~
Reference:
* Wikipedia-cormorbidities: https://en.m.wikipedia.org/wiki/Comorbidity
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Whether affected by epilepsy directly or indirectly, remember: you are amazing.
~
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
Plan your holiday season!
The holiday season can be one of those times where we want to spend time with families, to have fun, chill, and give as well as feel loved.
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There’s heaps of advertising about how great the holiday season supposedly is and how people spend time with their loved ones.
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But, not all of us are lucky to have this. Many people with epilepsy can be or feel very alone, particularly over the holiday period.
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If you are going to be alone or you worry that you will FEEL alone (we can feel alone even with people around us!) this holiday season, make some plans to keep yourself busy and try and enjoy it ( that means plans beyond social media!! )!*
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Planning ideas:
- Arrange a Skype with a friend or two-maybe one from overseas that you e met on social media?!
- Write that book you’ve always said that you’ll would!
- Clean the house/apartment/room
- Play/learn to play that instrument
- Listen to relaxing music
- Have a million movies/TV series lined up (Netflix anyone?!)
- Read a book
- Try colouring-in books and even Lego (seriously therapeutic!)
- Do some puzzles (hey low-tech can be cool!)
- Do some cooking (if you are able) or having some nice food that you like ready
- Play some games
- Have a shot at one of those old hobbies your left behind years ago
- Have a go at knitting/embroidery
- So some gardening (if it’s not winter in your country!)
- Keep company with/walking your pet(s) (if you have any)
- Go for a walk/run if possible -we know that some people have physical disabilities too); whether that be in the snow or the warm sunshine!
- Learning a new skill on the phone apps:
• Udemy
• Coursera
• Skillshare
- Check out the Lumosity app for working your brain!
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Tell a close friend that you are feeling worried, depressed or/and anxious about this time of year. Ask if you can do a call with them. They might even invite you over! Oh maybe you can invite yourself over?! Or, call The Samaritan. At any time.
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If you have any ideas for people feeling alone over the festive season, please share them with us below!
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*Some people do enjoy the holiday period alone-if that’s you, good for you!
~
Whether affected by epilepsy directly or indirectly, remember: you are amazing.
~
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
Plan your pills for any holiday/holiday season!
The vast majority of doctors’ practices and pharmacies close over the holiday period (in the West anyway). How dare they?! ⠀
~⠀
This means that we all have to prepare and ensure that we have enough medication to see us through to mid-January! ⠀
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Running out of AEDs (Anti Epileptic Drugs) as well as any other drugs you take can be a nightmare. Seriously. It’s almost like an invitation for seizures... ⠀
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Get your pill-box/drawer/wherever you keep your drugs stocked to see you through until the doctors and pharmacies are open again. ⠀
~⠀
We are running out of time... check your pills today if you haven’t already. Actually, perhaps check them again just to make sure!! ⠀
~⠀
Whether affected by epilepsy directly or indirectly, remember: you are amazing. ⠀
~⠀
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog⠀
Who knows what their seizure threshold is?
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Your seizure threshold is a bit like a stress/exhaustion/over-excited (sigh...) line; which, when you cross, can lead to seizures.
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Identifying your seizure threshold means that you recognise how far you can push yourself before you are likely to have a seizure. Please don’t push yourself too far!
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E.g.s:
- Sleep: You do long hours at work and don’t get enough sleep. Or the baby is crying ; you’re up for feeds and then you don’t get enough sleep. Say that you normally need 9 hours sleep and you only get 4 as a result of the above. The lack of sleep could mean that you cross your seizure threshold and that you might have a seizure.
- Stress: say that you did have a steady job, but got made redundant so you stress out way more than usual. Or that you have a new boss who is a bully/putting too much pressure on you. That excess stress could mean that you cross your seizure threshold and that you might have a seizure.
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Some psychotropic* drugs and antibiotics can also lower a person’s seizure threshold. Hence it’s always really important to disclose your AEDs to doctors.
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There are unlimited scenarios, but hopefully, you get what we are saying.
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Here is a more professional way to describe your seizure threshold:
“The term seizure threshold is used to describe the balance between excitatory and inhibitory forces in the brain which affect how susceptible a person is to seizures.”**
Here’s another, lengthier version:
“Part of the genetic likelihood of developing seizures is called a seizure threshold. This is our individual level of resistance to seizures. Any of us could have a seizure under certain circumstances, but for most people, their natural resistance to having seizures is high enough to stop that happening.
Our seizure threshold is one part of our genetic make-up which can be passed from parent to child. So the chance of you having seizures may depend partly on whether either or both of your parents has epilepsy.
If you have a low seizure threshold, your brain is less resistant to seizures. So you are more likely to suddenly start having seizures for no obvious reason than someone with a high seizure threshold.”***
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For self-care and empowerment: identify your seizure threshold (for some this this may take some time...) and where you can, manage your lifestyle to minimise your seizure risk.
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Our brains are amazing. They enable us to do so much. Hey; you’re reading this...! ⠀
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But, we can get more than a little “irritated” by our brains too. They can feel amazingly “LOTS OF RUDE WORDS!!”!
~⠀
The trouble with epilepsy is that it isn’t “just” a brain lesion, or “just” a genetic issue, or “just” seizures.
~⠀
Epilepsy affects much more of our brain than “just” the source of the seizures. There’s the AEDs, the life restrictions and social, professional and personal impacts that can negatively affect our mood, sense of well-being, our choices in life, etc. ⠀
~⠀
The underactivity and/or overactivity of even just one part of our brain can affect the rest of it negatively. Which in due course affects other parts of our lives negatively. Hence....⠀
⠀
...we’d love to get rid of our epilepsy so we can appreciate the rest of our amazing brain! ⠀
~⠀
Sometimes we need reminding of how incredible we are. You’re here reading this. If you’re frustrated with your brain-we get it. But you have already achieved so much. ⠀
Learn about epilepsy - if you expect anyone else to
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We can get as frustrated as we like about the general public’s lack of understanding of epilepsy. But if we don’t have some understanding of it ourselves then we are hypocrites.
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Research and medical discoveries continue to change professional understandings of epilepsy. We and epilepsy charities help convey these to you so you don’t have to talk to your Epileptologist all of the time!
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What helps is for those with epilepsy/their carers, to have a good view of epilepsy overall - not just from a personal perspective, but from the perspective of other people affected by epilepsy differently, and indeed those who aren’t directly affected.
This enables us to find better ways of explaining our epilepsy, and “forgive” people for misconceptions.
Trust a qualified neurologist over a spoon!
Seriously. We spoke to an unnamed man who believed that putting a spoon in a person’s pocket would prevent them from having Epileptic seizures.
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It was just shocking. There are still a lot of bizarre, just utterly ridiculously false beliefs about epilepsy across the world.
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Having people believe things like this causes deaths because a person will be less likely to seek medical treatment, will continue to have seizures, and may die of SUDEP as a result.
~
So:
Point 1: No, having a spoon close to your body does not prevent seizures
Point 2: Listen to professional epileptologists, neurologists, and epilepsy nurses. Read published scientific journals. But, do NOT believe old folklore that has no scientific base.
~
There are heaps of epilepsy treatment myths out there, featuring: eggs, spoons, mythical creatures, spirits, and more. ⠀
~⠀
There are people perceiving myths to be truths and refusing AEDs (Anti Epileptic Drugs) in exchange for someone trying to remove “evil spirits” from their bodies. Frightening and dangerous! ⠀
~⠀
Many in the Western world are shocked that beliefs such as this still exist but indeed they sure do! Even within pockets of western nations. ⠀
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Education, education, and more education is required!! ⠀
People with disabilities
Shockingly (NOT) we are totally celebrating the United Nations’ International Day Of Persons With Disabilities!⠀
~⠀
Disabilities vary sooooo much. Some people with epilepsy consider it a disability and some don’t.⠀
~⠀
Some people say that their epilepsy isn’t a disability because they don’t like the connotations of the word “disability”. ⠀
~⠀
Well, epilepsy or not, mental health difficulties or not, any other disability (or not!); you are amazing.⠀
Art is a powerful thing
Art is proven to help us humans chill out, hence it can be a great tool helping to manage anxiety.⠀
~⠀
A research study in Germany did a test on visual art, which proved that: “...the functional connectivity in the visual art production group was related to psychological resilience (i.e., stress resistance).”* ⠀
~⠀
Anxiety is a huge obstacle in life and can be a seizure trigger for many people with epilepsy, so, finding a way to chill, to become mindful and to be at peace with oneself is critical. ⠀
~⠀
Sometimes using art to chill out is a struggle (especially if you don’t yet know of anything you like that comes under the term “art” that you like yet!), but there is a lot of choice out there, and like with so many things; start small and improve with effort and time. No pressure. ⠀
~⠀
We aren’t a nagging parent or doctor. ⠀
~⠀
So to use art to chill, become calm and to relax, you can try:⠀
- Playing/learning an instrument;
- Listening to calming music; ⠀
- Writing music;⠀
- Drawing;⠀
- Colouring-in;⠀
- Painting;⠀
- Moulding a 3D piece; ⠀
- Designing something ⠀
... there are so many forms of art, that we can’t list them all! ⠀
~⠀
What forms of art do you like? What have you tried that you like? Any tips? ⠀
Ictal is the period of time when a person is having a seizure. ⠀
~⠀
For example, if a person has an aura then they are “ictal”, as they are if they have a focal, a generalised, or any other type of Epileptic seizure. ⠀
~⠀
Now here is the longer description(!):⠀
“Ictal refers to a physiologic state or event such as a seizure, stroke, or headache. The word originates from the Latin “ictus”, meaning a blow or a stroke. In electroencephalography (EEG), the recording during a seizure is said to be "ictal.”* ⠀
~⠀
If a patient can tell their neurologist how long all of their ictal periods last (i.e. how long their seizures last!) then they should get a gold star. It’s invaluable information for better treatment. ⠀
~⠀
If a person is living alone then they might not know anything about a seizure (their ictal period) until they are post-ictal and fully conscious.⠀
~⠀
It’s very important for a person to keep a record of their physical and emotional feelings both before their seizure (pre-ictal) and after their seizure (post-ictal), and then to present this information to their Epilepsy Nurse and/or Neurologist. ⠀
~⠀
Speaking of which, please do keep a seizure diary. It’s absolutely key to receiving the correct treatment. ⠀
~⠀
Hopefully, you’ll now understand the term “ictal” if you hear a Neuro/Nurse/Doctor use it! ⠀
~⠀
We dare you to use it in a conversation this week! ⠀
Interictal is the period of time between seizures. ⠀
~⠀
Now that time could be an hour, a day, a month, a year, multiple years, or indefinitely (hopefully!). ⠀
~⠀
For example, if a patient were to explain a seizure to their neurologist, they could say: ⠀
“I’m still interictal; I’ve been sleeping well, minimising my stress-levels and taking my meds as and when I’m supposed to. Following the rules seems to be paying off!” ⠀
~⠀
Or a longer description: ⠀
⠀
“Interictal refers to the period between seizures, or convulsions, that are characteristic of an epilepsy disorder. For most people with epilepsy, the interictal state corresponds to more than 99% of their life. The interictal period is often used by neurologists when diagnosing epilepsy since an EEG trace will often show small interictal spiking and other abnormalities known by neurologists as subclinical seizures. Interictal EEG dischargesare those abnormal waveforms not associated with seizure symptoms.”* ⠀
~⠀
Sometimes people aren’t sure of their interictal time period because:⠀
⠀
- They aren’t aware of their seizures when they happen, and/or; ⠀
- They don’t record their seizures and forget them ⠀
~⠀
Speaking of which, everyone with epilepsy needs to keep a seizure diary. This information is key in order for a Neurologist to provide them with the best treatment possible. ⠀
~⠀
Hopefully you’ll now understand the term “interictal” if you hear a Neuro/Nurse/Doctor use it! ⠀
~⠀
We dare you to use it in a conversation this week!
Living with epilepsy feels a bit like an internal war…
Seriously. We think that this is rarely communicated: with epileptic seizures it can feel like a person’s brain is attacking ITSELF... i.e.: THE PERSON. It’s as if THEY are attacking THEMSELVES involuntarily.
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So to control (or try to control) the extracurricular activity of their brain (seizures), a patient takes AEDs (Anti Epileptic Drugs): which restrict neural activity...
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These AEDs sometimes (but not always) have negative side effects. Which makes it feel that even if one’s seizures are controlled/partially controlled, that their brains are still negatively impacting them (albeit indirectly). But their brains ARE them! Argh!
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The purpose of this post is to let those who are feeling any of the above emotions know that they aren’t the only ones.
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Ranting over (for the day!)!
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If you or anyone you know ever feels like this about their epilepsy, we recommend:
- Have a good cry;
- Give a punching bag a good punch;
- Go for a walk/run;
- Do some mindfulness;
- Have a massage;
- Tell some bad jokes;
- Distract yourself and talk to someone you trust.
~
You cope with your epilepsy (controlled or otherwise). You are amazing.
Listen to your body (including your bowels!)!
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Now. Correlation doesn’t always mean causation, but some people do find that if their “internal hallways” are blocked (constipation!), then they are more likely to have a seizure due to a build-up of toxins.
This is a serious issue to be addressed.
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Also, constipation is not comfortable. You might save on toilet paper temporarily, but it’s really not worth it...
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Constipation can also:
- Affect a person’s mood negatively ;
- Make one feel tired , which can then potentially lead to;
- Less exercise, and;
- Less eating...
...all of which can then of course make the problem worse. So, to clear those “pipes” and sort out the blockage...
~
Recommendations:
- “Eat a healthy diet that’s high in fruit, vegetables and fibre, and low in fat and salt;
- Drink a reasonable amount of water and;
- Take gentle exercise such as walking.”
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- “If you want to to buy and over the counter remedy for constipation, ask your community pharmacist if it’s safe to take it with your AEDs.”*
Epilepsy is not catching!
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To many of us, it sounds like something that shouldn’t need to be said, but unfortunately, there are millions of people who still believe that epilepsy is catching!
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Epilepsy is not an infection. It is not viral. It is not bacterial.
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Epilepsy is a neurological condition (in one’s brain) only.
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Epilepsy is not caused or caught by touching, kissing, or breathing in the same air!
~
There are many causes of epilepsy, including:
1. Genetic:
- A genetic tendency, passed down from one or both parents (inherited);
- A genetic tendency that is not inherited, but is a new change in the person's genes.”*
2. “A Structural (sometimes called 'symptomatic') change in the brain, such as:
- Brain not developing properly, or;
- Damage caused by a brain injury;
- Infections like meningitis;
- A stroke, or;
- A tumour
(A brain scan, such as Magnetic Resonance Imaging (MRI), may show this.)”*
3. Other “Structural changes due to genetic conditions such as:
- Tuberous sclerosis, or;
- Neurofibromatosis, which can cause growths affecting the brain.”*
~
Reminders:
- Epilepsy is not catching;
- There ain’t no supernatural spirits involved;
- There are 50-70MILLION (!!) people around the world with epilepsy
Ecstatic seizures!
Your brain is an incredible thing. It allows you to feel pleasure, pain, excitement, sorrow, fear, and utterly “unique” feelings that unless one has epilepsy it’s hard to understand!
~
Some people love their focal seizures and wouldn’t want them to stop. We have literally had them described to us as “a feeling of ecstasy”.
One patient’s experience:
“It’s like when you have an orgasm. You don’t get to the orgasm in one step. You go progressively. [My seizure] was the same kind of thing.”* (check out the article link below!)
~
We’ve also had people describe their focal seizures as:
- “Relaxing”;
- “As if I’m in another dimension”
- “Weird, but still relaxing”
- “Just a funny/weird (indescribable) but not disturbing ‘feeling’”
~
Some people (both with and without epilepsy) are surprised at hearing the good feelings that
Epilepsy is nothing new! ⠀
~⠀
We have records* of epilepsy going back over 4000 years to the Babylonian period** and science, medicine, and common sense (!) mean we recognise that it has existed for millions of years, amongst soooo many species. ⠀
~⠀
“The oldest detailed account of epilepsy is on a Babylonian tablet in the British Museum. This is a chapter from a Babylonian textbook of medicine comprising 40 tablets dating as far back as at least 2000 BC.”***⠀
~⠀
The Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain.****⠀
~⠀
As awful as epilepsy still is, we are at an unprecedented point in history, where we are gaining more knowledge about the human brain, at a faster rate than ever.
~⠀
At least we aren’t back in 2000BC when even more people (pretty much everyone) thought that seizures were down to evil spirits (which in certain parts of the world, some people mistakenly do still believe). ⠀
~⠀
There’s heaps of interesting information in history regarding epilepsy. Google it. Check it out. Empower yourself with knowledge!! ⠀
Medication often feels like it gives with one hand….
…and takes with the other.
Just to say...we get it. ⠀
~⠀
AEDs (Anti Epileptic Drugs) are prescribed to hopefully help (if not completely) control a person’s epilepsy, and approx 70% of patients can have their epilepsy controlled with drugs. ⠀
~⠀
Some of the side effects of AEDs are tolerable. They may have rubbish side-effects (such as tiredness); but you get on with it ok. ⠀
~⠀
Sometimes, however (and this can vary from day to day, from person to person and at different points in a patient’s life) the side effects of AEDs can be terrible. ⠀
~⠀
Often we have to compromise. One could: ⠀
⠀
- Take (as prescribed) the AEDs recommended by your neurologist; have none/fewer seizures and increase your life expectancy; whilst enduring the side-effects, or;* ⠀
⠀
- Don’t take AEDs, have seizures, accept a
Check reputable, professional sources for information on epilepsy
~⠀
Today we were left speechless (which is rare! ). This is a bit of a long post-are you ready?!
~⠀
So, we came across a person publishing a “fact” on Facebook. Ok, it was quite the opposite of a fact: it was both inaccurate and misleading and had either been made up or was from a very unreliable source. ⠀
~⠀
When something sounds exciting and when it’s what we want to hear - then it’s no surprise that many of us “believe” it. But...⠀
⠀
...generally, it’s not wise to believe the first thing we read online (about epilepsy or anything else to be honest ); unless it’s from a source such as a university, Neurologist, Epileptologist, Neuroscientist, Epilepsy Nurse, specialist hospital or registered and reputable epilepsy charity. And even then, it’s responsible for us to ask questions and get multiple opinions! ⠀
~⠀
Some of the best medical and science professionals will say “I don’t know” if they actually don’t know (which is a lot of time as no one can know it all!) , and will refer a patient on to another reputable source.
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We call the dodgy sources of information the “Epilepsy Tabloids”. And they are all around us! ⠀
~⠀
Of course, we want to find answers to everything regarding epilepsy. Totally. However, we need to be realistic:⠀
“In a human, there are more than 125 trillion synapses just in the cerebral cortex alone. That’s roughly equal to the number of stars in 1,500 Milky Way galaxies”).* ⠀
⠀
So, a complete understanding of the human brain sadly isn’t likely in the foreseeable future. ⠀
~⠀
Learning facts about our epilepsy that we don’t want to hear can be upsetting. But it’s also empowering. If our choices are narrowed down, then we know what we can focus on. We are able to make more educated decisions about both our health and our lives/the health and lives of those we care for. ⠀
~⠀
We all have opinions on things in life. But when it comes to epilepsy, let’s base these “opinions” on fact, rather than fiction or sub-conscious emotion. ⠀
~⠀
There are so many new Neuro and Epilepsy discoveries being made through research, data analysis, new technologies, and pharmaceuticals. It’s exciting.⠀
~
So if your seizures aren’t controlled, don’t give up hope. But focus on evidence and truth. For the sake of your neurological, mental and physical health.
Post-ictal
There are heaps of Neuro terms used by doctors, nurses etc., that many of us are not familiar with.⠀
~⠀
Hey, it makes sense; they aren’t exactly in the language that most of us use day to day (unless you are in the medical field)! ⠀
~⠀
So, we thought we’d provide you with a bit of an explanation as to what these medical epilepsy terms actually mean, and in case you forget them...you can just refer back to our posts! ⠀
~⠀
So:⠀
Post-ictal means: ⠀
“The postictal state is the abnormal condition occurring between the end of an epileptic seizure and return to baseline condition.”. (NCBI) ⠀
⠀
Or, here’s another (longer!) description: ⠀
⠀
“The postictal state is the altered state of consciousness after an epileptic seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures, and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine, and other disorienting symptoms. Additionally, emergence from this period is often accompanied by amnesia or other memory defects. It is during this period that the brain recovers from the trauma of the seizure.” (Wikipedia)⠀
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Our (and perhaps simpler explanation!):⠀
⠀
The post-ictal period is a length of time after your seizure during which you can be tired, confused, have a bad memory (worse than normal ) and some people may have a banging headache, feel a bit sick, or feel “A bit ‘off my face’” as @torierobinson10 put it. “One time, I didn't recognise my boyfriend for an hour!” - she also said. ⠀
~⠀
Everyone’s post-ictal experiences are different and the experiences can vary in severity/length of time; depending upon the severity of a seizure.
Simply put: ignorance induces fear, fear induces discrimination. Hence, education is KEY!
There’s so much in this world that we can change for the better with education.
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That includes the lives of those who are affected by epilepsy; and indeed related mental health and societal issues.
~
We are talking about the education of those:
- With the diagnosis of epilepsy (which is 50-70million people!!), as well as;
- Friends;
- Family;
- Medical staff, and....;
- The rest of the human population.
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Anyone who reckons they know it all They are often the most ignorant!!
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Let’s all be open to contradiction by accepting proven facts from credible sources.
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Let’s understand our own condition as much as we can, but also accept that our understanding is limited due to the fact that even scientists and Neurologist’s can’t yet (and to be honest, maynever) fully understand the human brain.
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With the confidence that education slowly brings us, we are better able to educate others-both intellectually, and emotionally.
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For those who aren’t open to education...meh; those aren’t the sort of people we’d like to associate with!
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As we know, not everyone’s family/supposed friends or employers are yet mature enough to learn about epilepsy.
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Hence, thank goodness for the internet; which allows us to find like-minded individuals with whom to associate/build relationships with!
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The message of the day: learn, learn and learn more (in your own time, at your own pace, from reliable sources, and don’t hit yourself if your memory is an issue...we feel you!).
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You are amazing.
Epilepsy….does my head in!
Just saying... ⠀
~⠀
Sometimes things like puns/dark humour are what enable those of us who are having a bad day to get through it! ⠀
~⠀
What’s the “worst”/darkest joke you’ve used when it comes to your epilepsy/any comorbidities?! ⠀
~⠀
It can be good for our close friends and family to use “bad jokes”/puns too...but generally it’s when we know that these people aren’t laughing AT us but WITH us. ⠀
~⠀
It’s true: sometimes laughter is the best medicine.
We admire people who openly say that they don’t know much/anything about epilepsy!
It’s fine to not yet know anything about a certain topic, as long as one is open to learning. ⠀
~⠀
We’ve met heaps of people who’ve confessed that they nothing about epilepsy. And that’s great as far as we are concerned, because: ⠀
⠀
- The person has been modest and admitted their ignorance (ok, harsh word... their “lack of knowledge”!) ⠀
⠀
- We are able to use the time as an opportunity to educate them and remove the fear that they have regarding epilepsy ⠀
~⠀
For those who don’t want to learn...we pity them. ⠀
~⠀
Where you can, surround yourself with open minded people who didn’t leave school and decide that they’d never have to learn anything ever again.
~⠀⠀
Our brains are interesting (to say the least! ), and those not interested are losing out!⠀
We can be absolutely exhausted after a tonic-clonic seizure!
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The only great thing post-ictal for many of us (especially after a tonic-clonic) is that we are SO exhausted that we can have the most amazing sleep!!!
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Other seizures can be very tiring too though. imagine if you had 10 auras a day? Or 100? Or even 1 can tire you. We are all different. Or “complex”...
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Normal, stressful situations exhaust a healthy person, so compare/add that to additional overactivity of the brain from ANY type of seizure.
SUDEP: To educate is to empower
We know. Most people don’t like to talk about it. Or think about it. Or anything-it. This is understandable; SUDEP is a scary thing. But...
...so many cases or SUDEP are preventable.
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Learning about SUDEP and making subtle changes to our lives (take a look at our posts tomorrow) are easy to implement.
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Educating ourselves about SUDEP is empowering. It’s the unknown which is the scariest.
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The fact is that we can only do what we can do. But we can take preventative measures.
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Just like how people better their chances when they wear a helmet when cycling or skiing. They put those helmets on and still cycle and ski, despite the risks of injury or worse.*
*I know, bad analogies...heaps of us don’t cycle or ski Doh. You know what we mean though...
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We talk about cancer. We talk about HIV. We talk about diabetes, heart disease, asthma and more. Let’s learn about SUDEP through
so we can minimise our own risks/the risks of those we love.
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Please join us in spreading the word about SUDEP and how we can save some lives. And not just our own, but the rest of the 50-70million people around the world with epilepsy.
~
You are lovely. You are worth saving.
Epilepsy is so common
Ok, so depending upon your country, the statistics do vary, but about 1% of the human population have epilepsy. Meaning between 50-70million people!!! ⠀
~⠀
If you think of it like that...those that THINK that they don’t know/have never met anyone with epilepsy are very likely to be wrong. ⠀
~⠀
We’ve met people who’d found out that a member of their family had epilepsy....decades after their diagnosis. ⠀
~⠀
We met a woman who found out that her best friend’s mum had epilepsy (as did she)... but the mum had kept it a secret for 30 years!! ⠀
~⠀
Education is key. Let’s TALK about epilepsy. If you don’t yet feel comfortable doing so, learn as much as you can to build up your confidence. ⠀
~⠀
You are amazing. ⠀
Never think that 100% controlled seizures mean an easy life. They really, really don't.
~
It’s wonderful to have controlled seizures as a result of AEDs (although, yes, one would rather have no seizures and no AEDs either!) and it’s something that we all desire. It’s terrific and those who no longer have seizures are very grateful for this. But...
~
The AEDs that most still have to take have side-effects. Especially if one is on them, like, forrreverrrrr! such as:
- Drowsiness;
- A lack of energy;
- Agitation;
- Headaches;
- Uncontrollable shaking (tremor);
- Hair loss*
- Unwanted hair growth*
- Swollen gums
- Rashes
*Seriously. EXTRA hair. Or LOSS of hair.
~
Then:
- Anxiety;
- Depression;
- Moodiness....
Aarghghghghgh!!
~
And yes, people still having seizures (who may have refractory/ pharmaco-resistant epilepsy) experience the above too, we are just explaining that those with controlled seizures aren’t free from the dodgy-brain effects entirely...)
~
Then there’s the:
- “What if I do have a seizure again?
- “When will I have a seizure again?”
- “I’m scared to drive again because what if I have a seizure if I when driving and kill someone?”
- “What if I do change my life, move to the country, get a new job, start a family; and then start having seizures again?”
- “I’m so lucky to not have seizures...but I feel guilty because so many others still do have them!”
~
Another common thought (although rarely spoken of due to embarrassment/shame) is:
- “I hate my epilepsy but I’m used to a life with seizures. What do I do now?”
....then;
- “Everyone is going to expect me to get an amazing job, live life as ‘normal’ (whatever that is), be happy, flourish, and just ‘fit-in’”.
~
Sometimes, there are even vile people with epilepsy who make people have thoughts like:
- “The epilepsy group thinks I’m fine now because I’m not having seizures. I feel abandoned and alone. I don’t fit in anywhere .”, and;
- “A person I spoke to is angry and jealous of me because my seizures have stopped. I get it and I wish the best for him/her but why should they be mean to me? Is everyone in the group going to be like this now?”And because of the above, even if one hasn’t had mental health issues before, they may now develop:
- Anxiety;
- Depression;
- Moodiness....
Aarghghghghgh (again)!!!
~
Goodness me.... human brains in general...
~
Anyway, our points are that, yes:
- It’s utterly, utterly fantastic to have controlled seizures and, just “wow”. Tremendous x a squillion, and;
- Those with controlled seizures are so very grateful for it, but...
- Everyone please be sensitive, especially if a person has had uncontrolled epilepsy for a long time; they are now experiencing a new, exciting, yet possibly intimidating life of opportunity that they haven’t faced before;
- If you don’t have controlled epilepsy, rather than be jealous and angry, try and be envious and supportive. Don’t turn into an a@@h@le.
- Families/friends: realise that that person affected might need you now more than ever; as they face a new, possibly opportunity-filled life which whilst exciting; without your support can be very frightening!!
~
Anyway, that lengthy piece is over! You are all wonderful; epilepsy refractory or not, and indeed, epilepsy or not.
Epilepsy is so common!
Ok, so depending upon your country, the statistics do vary, but about 1% of the human population have epilepsy. Meaning between 50-70million people!!! ⠀
~⠀
If you think of it like that...those that THINK that they don’t know/have never met anyone with epilepsy are very likely to be wrong. ⠀
~⠀
We’ve met people who’d found out that a member of their family had epilepsy....decades after their diagnosis. ⠀
~⠀
We met a woman who found out that her best friend’s mum had epilepsy (as did she)...but the mum had kept it a secret for 30 years!! ⠀
~⠀
Education is key. Let’s TALK about epilepsy. If you don’t yet feel comfortable doing so, learn as much as you can to build up your confidence.
When you have epilepsy...you can become one of the most caring, empathetic people!
It’s a bit cheesy. We know.... But it’s true!!⠀
~⠀
Some of the most empathetic people we’ve met have been those affected by epilepsy (or indeed another neurological health condition). ⠀
~⠀
It’s because we are more likely to have been through the social, personal, physical, neurological, and psychiatric mill. Maybe we still are being churned. Maybe we will be again in the future. We don’t know.⠀
~⠀
Having experience of what epilepsy can “bring” or remove from your life (or how about “detonate”?! That’s a good word for it, right?! Epilepsy can feel like a bomb going off sometimes....) is actually an education like nothing else. It’s like when you find out why a nurse becomes a nurse, or a counsellor becomes a counsellor: they’ve very often had similar experiences to those of their patients. ⠀
~⠀
Accept your positive trait as an empathetic person. Maybe write yourself a note to remind yourself of something positive like this, or put it as your screen saver (in case you forget )?! ⠀
Listen to your emotions!
Hey, whoever you are, of whichever sex, sexuality, etc., we all have emotional times/days/weeks! Acknowledge!! ⠀
~⠀
What heaps of people don’t appreciate is how impactful our emotions are on our physical and neurological health. ⠀
~⠀
If we feel awful/emotionally unstable then our posture, eating habits, activities and general lifestyle can change for the worse too. These can then sometimes increase our likelihood to have seizures...then we feel awful...then we get a bit stuck in the loop of “awfulness” (you know we are trying not to swear right?! ).⠀
~⠀
Our point is, that being “at one” (sorry, we’re sounding “deep” here) with yourself, listening to your emotions and your mental state is equally (if sometimes even more) important than being aware of your physical state. Your mental health is...KING/QUEEN. ⠀
~⠀
Now we aren’t going all: “be at peace with the world maaaaaaan” on you, but, we are saying that for those of us with epilepsy, it’s crucial to be aware of our feelings and realise that if we aren’t feeling “good” then the threat to our neurological health is significant; i.e.: we might go and have a seizure. Or a cluster. Then who knows... ⠀
~⠀
Remember, you aren’t as alone as you may feel (millions of us around the world have epilepsy and BILLIONS have/will have a mental health condition at some point). ⠀
Don't be angry when meeting people who don't understand epilepsy
It can be hard, we know...when so many people don’t “get” what affects us so deeply and so negatively. But... ⠀
~⠀
When you accept that it’s not them being horrible people (most of that time) but instead they just haven’t consciously needed to learn about epilepsy, then their ignorance stops being such a big deal. Instead, it’s an opportunity for us...⠀
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It’s like meeting someone who just doesn’t understand how people can get so depressed - because they haven’t experienced it before (lucky people!). ⠀
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As long as these people are open to education and are listeners, then them not knowing anything prior is an opportunity for us! ⠀
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We can be that person who makes someone not fearful of epilepsy and instead, interested. We can enable them to understand epilepsy (at least to a degree), which benefits them, us, and the rest of society. ⠀
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If we meet people who don’t understand epilepsy (and are honestly ar££holes about it), we seriously giggle. And, should they not be open to using their own brains, we walk away from them. (sometimes easier said than done though, we know...)⠀
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Let’s educate ourselves, surround ourselves with good people, talk with confidence and educate the world regarding one of the most common neurological disorders in the world! ⠀
I pulled up my skirt in the office canteen during a seizure. Apparently.
“I felt the seizure swiftly develop from an aura into... I woke up on the floor of the canteen, (after a dreadful tonic-clonic), with my skirt up past my Bridget Jones knickers, and a couple of colleagues very kindly covering my privates with a towel.” - Torie Robinson ⠀
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The colleagues were great - Torie had told them all about her epilepsy and what to do in case of a seizure of any kind.⠀
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“The experience did encourage me to wear nicer knickers to work though.” ⠀
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Torie laughs now. But at the time... And the exhaustion felt...⠀
For us, every day is a Purple Day
Purple day is great because it raises awareness of epilepsy within society. But...⠀
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...for us, every day is a Purple Day. ⠀
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Every day we are being challenged. ⠀
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So many of the people we’ve met/spoken to (who are affected by epilepsy) make us laugh (in a good way)! Sometimes it’s the dark humour... ⠀
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Let’s educate not just others in society, but each other. Let people know they are not alone. Let’s read about new epilepsy developments and spread the word. ⠀
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Read our blog: (www.epilepsysparks.com/blog) to read stories from others around the world and their 365days/year that are purple!!