Epilepsy Sparks

Epilepsy Sparks Follow

💜Educating regarding #epilepsy & laughing where possible
💻Guest blog with us: www.epilepsysparks.com/blog
🧠Founder: @torierobinson10

http://www.epilepsysparks.com/

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High anxiety is common amongst those with epilepsy. Whilst anxiety is a natural and very useful emotion to have in moderation, excessive anxiety is a mental health issue. 🧠😢⠀
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Common causes of anxiety for those with epilepsy:⠀
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- Am I going to have a seizure?! ⚡️⠀
- I can’t remember names, words...or anything (or that’s what it feels like!);⠀
- I can’t sleep! 😴⠀
- I hate taking drugs! 💊⠀
- My seizures aren’t controlled! ⚡️⠀
- My seizures are controlled - but what if they aren’t because I suddenly have a seizure?! ⚡️⠀
- I forget everything!! 😢⠀
- I’m so tired - I can’t fulfil all of my responsibilities...; 😴⠀
- I am being inefficient at work due to memory issues; 😢⠀
- My friends/family aren’t being understanding re my epilepsy and make me feel foolish. 😢⠀
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We could go on forever!! ⠀
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Sometimes, the more “things” we have to distract us (such as work, exercise or a hobby) the more we can be released from our anxiety. 👩🏼‍🔧🏃🏿‍♂️ As long as we aren’t too distracted and then forget more “stuff”!⠀
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Tips of the day: ⠀
- Have procedures in place. Organisation is key; 📆⠀
- Always keep things in the same place in your room/handbag/man-bag 👜⠀
- Have a notebook/notepad on your phone; 📕🖊⠀
- And don’t have too many notebooks otherwise they get confusing too! 📕📘📗⠀
- Have reminders on your phone, all the time! 📱⠀
- Give yourself a break. You wouldn’t judge your friends unfairly, so if you forget something, forgive yourself. 🤗⠀
- Do Mindfulness every day to relax 🙂⠀
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Summary: ⠀
- You are not alone and there are ways to cope with and even learn to avoid anxiety; ⠀
- If you aren’t coping with your anxiety, seek help by approaching your doctor. Anxiety can be crippling and even induce seizures in some.⠀
- If you need to speak to someone to speak to because you can’t cope and are on the edge, call The @Samaritans⠀
- There are epilepsy charities and mental health charities to call/email, such as @epilepsyaction & @mind⠀
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Remember: be kind to yourself. You are amazing. You are not alone. 💜🤗⠀
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#anxiety #epilepsy #mentalhealthmatters
Hey. We have to laugh at times.⠀
Memory problems are extremely common amongst those with epilepsy. You are not alone. 🧠🧐🤗⠀
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Memory can be affected by seizures themselves - both during and afterwards. The negative effect on memory can increase with and increased frequency of seizures. ⚡️⠀
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Abnormalities in the temporal or frontal lobes of the brain are the most common reason for memory problems for people with epilepsy. 🧠⠀
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It is common for those with temporal lobe epilepsy to have memory difficulties even if seizures are well controlled. This is because the temporal lobe is responsible for creating memories. 😶⠀
~⠀ Memory is also frequently negatively affected by AEDs (Anti Epileptic Drugs). 💊💊💊⠀
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For some people, some AEDs can cause drowsiness or attention problems. These side effects can also affect short-term memory, and may make it more difficult to learn and store new information. 🧐⠀
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However; AEDs may also lead to improved memory by reducing the frequency and/or severity of seizures. Indeed more than 50% of the time, AEDs manage seizures 100% of the time. 👍⠀
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Brain surgery can also affect your memory negatively...but also can improve your memory if it causes you to have fewer seizures! 👍⠀
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Now, if you are still focusing on reading this... (😂), thank you for reading!!! ⠀
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#epilepsy #epilepsysucks #neurosurgery
Meet Lisa, another of our inspiring guest-bloggers! Lisa is studying for a PhD in Germany, traveled to see her friends in the UK a few weeks ago 🌍 and also has epilepsy. 🧠⚡️⠀
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Her blog entitled: “PhDisabled: Studying for a Doctorate Whist Having Epilepsy” is written so well; it’s touching, upsetting, educational, inspiring and funny - all at the same time! ⠀
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Check out the blog:  https://www.epilepsysparks.com/PhDisabled-Studying-for-a-Doctorate-whilst-having-Epilepsy⠀
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#epilepsy #phd #seizure
Can you imagine, being in the bathroom when you start with a focal. You then sit down as this isn’t feeling good... 😖⠀
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The focal seizure swiftly spreads its legs and goes full throttle into a tonic clonic. Then, “blank”. 😶⠀
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You “wake up”, post-ictus, in bed with the paramedics around you, not recognising your boyfriend and with a terrible headache.”😓🚑⠀
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You’re taken to hospital to be safe, but all is “well” (although you feel like you’ve done the London Marathon 3 times, with weights attached to each limb). Phew. ⠀
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Later, you learn that you were found during your seizure with your head in a Vileda bucket (hence “the Vileda Seizure) that was on the bathroom floor. 😐🗑🛁⠀
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“How could I not laugh when hearing about the bucket?!” 😂 - Torie Robinson (who had the seizure)⠀
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This is a story from @torierobinson10 - see her blog for the full story: https://www.torierobinson.com/The-Vileda-Seizure⠀
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#seizure #tonicclonic #epilepsy #nhs #paramedic
Put simply. And politely. 😑😆⠀
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For those who aren’t familiar with the British term, it means: “to irritate and annoy”. ⠀
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We could of course use stronger words, but thought we’d better not online. 😁
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https://www.google.co.uk/amp/s/www.urbandictionary.com/define.php%3fterm=does%2bmy%2bhead%2bin&amp=true⠀
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#epilepsy #epilepsysparks
To the great Consultants, Neurologists, Epileptologists, Neurosurgeons, Neuroscience Nurses, Epilepsy Nurses, Psychiatrists, Therapists, Mental Health teams, Researchers, Medical Assistants, Admin staff, and all other staff who help us with our epilepsy. We thank you! 🤗🤝💜
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We thank you for all for;⠀
- Caring;⠀
- Listening to us;⠀
- Asking us the right questions when we aren’t sure how to bring things up/how to say things;⠀
- Knowing what you’re doing (!);⠀
- Taking the time and effort to educate yourselves further each and every day;⠀
- Putting up with us (patients!) when we aren’t in a great mood;⠀
- Being able to step away and see our overall picture to judge suitable treatment(s);⠀
- Coping with gross bodily fluids/functions 😂⠀
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#epilepsy #epilepsysparks #neurology #neuroscience #medicine #mentalhealth
Put very simply, sometimes we just get bored of talking about and hearing about epilepsy! 😂⠀
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Of course, epilepsy impacts our lives every day... but because it’s so nasty (we thought of other words, but thought we’d best use a safe one 😉) we’d much rather be distracted! E.g.:⠀
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- Humour; 😁⠀
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- Exercise; 🏃🏿‍♂️🏓🥊⚽️⠀
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- Friends and/family; 👨‍👩‍👧‍👦👩‍👩‍👦👨‍👨‍👦⠀
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- Work; 👩🏻‍🏫⠀
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- Nature; 🌿🍁🦎⠀
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- Travel/new experiences; ✈️🛥⠀
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- Music; 🎼🎸⠀
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- Learning about something new that you’re interested in; 📕📗📘⠀
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What else works for you? 🧐⠀
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#epilepsy #epilepsysparks #leisure
Please meet, the inspiring, the one and only, Clair Cobbold! Clair is a professional who works with people with special needs - physical, neurological and psychological. 🧠⠀
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Clair is a trained physiotherapist, who has done the London marathon, has a supportive husband and two beautiful, healthy children. Clair also has epilepsy. 🧠⚡️🧠⚡️⠀
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Clair’s Epilepsy is currently controlled and in her blog she tells us how the stresses of controlled epilepsy and how it still massively impacts her life; negatively. But also, how she copes. 😞💪⠀
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Clair is also a trained Accredited Volunteer for Epilepsy Action. 💜💜💜⠀
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Read her story here: https://www.epilepsysparks.com/Seizure-Freedom-is-a-Funny-Thing ⠀
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Clair also has a blog of her own: epilepsybumps.com ⠀
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#epilepsy ⠀
#epilepsysparks⠀
“Approximately 1 in 3 people (32%) who have a mild to moderate learning disability also have epilepsy.”(Epilepsy Society) 🧠⠀
(Learning Disability also known as Intellectual Disability)

That’s compared to the prevalence of epilepsy within the general population of approximately 1%. 🧠
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The more severe a learning disability, the more likely that the person will also have epilepsy.⠀
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Further studies are required for more precise statistics when it comes to ID and epilepsy. 📊⠀
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For more information:⠀
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Epilepsy Society: https://www.epilepsysociety.org.uk/learning-disabilities#.W22ZQKTTWEd⠀
AEDs (Anti Epileptic Drugs) slow down/restrict pathways in our brain to reduce the likelihood of a seizure. 💊🧠⚡️⠀
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Unfortunately, these drugs often have a detrimental effect on our cognitive function (as well as other things!) and we need to establish: do the benefits of the drug outweigh the negative side effects?⠀
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This compromise (because that’s what it feels like!) can be really tough to make. That’s why it’s essential to keep in close contact with our Neurologist’s (especially when coming off of one drug and going onto another) to make them aware of any side effects of the drug, and record the effectiveness of it. 😴🧠🤦🏾‍♀️⠀
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There is a lot of gossip out there on social media about the negative side effects of drugs. However, make sure that you don’t make a decision based on what unqualified people say. E.g. Keppra doesn’t work/has adverse side effects for some people - but for lots of people it does work and they don’t have negative side effects.⠀
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Points: ⠀
- Establish what drug(s) are right for you-through your Neurologist/Epileptologist. If you don’t trust them, find another one if you do;⠀
- Research your drug from numerous factual and credible sources (notice the terms “factual” and “credible” 😁), and;⠀
- Talk to staff from your local epilepsy charity (we work with @epilepsyaction)!⠀
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Remember:👫👭👬⠀
- You are not alone;⠀
- AEDs do not reduce your intellect; 🧠⠀
- You are amazing. 💜💜💜💜
You might be surprised, but a lot of people around the world still think that epileptic seizures are the result of evil spirits in the brain. Seriously. 👻🧠⠀
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This of course is terrible for those with epilepsy, and can lead to isolation and lack of effective treatment. 💊💊💊⠀
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Beliefs about evil spirits in relation to seizures exist among communities upon all continents; particularly in areas lacking education. 😔⠀
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We hope that through education we can help people realise that there “Ain’t no evil spirits in the brain!”, and encourage them to seek professional help from an epileptologist. 👩🏾‍⚕️👨‍⚕️⠀
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#epilepsy #epilepsysparks #neurology
Thank you to everyone for following us and for your support!! We are here not just to educate but upon occasion make people smile. 😀
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Knowledge is power (even if it doesn’t feel like it sometimes!). 🧠
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Survivors of epilepsy are so strong. They often don’t feel it. Because coping can be energy sapping. If someone you know has epilepsy and and is still a great friend, family member, employee (or whatever!), then appreciate them. Because it’s bl&&dy hard work living with the condition!! 💪💪💪
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Thank you all for your support. Big, virtual hugs to all. 🤗🤗🤗
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Check out our blog: https://www.epilepsysparks.com/blog

#epilepsy #epilepsysparks #epilepsysucks