Speak to someone who has lived with Epilepsy - someone who can relate to your struggles and empathise with your journey through ECA Peer Support counselling.

awareness & information

Thanks for coming to ECA - as noted in our #ECACoreMandates on prior pages - allowing the public FREE access to a CENTRALISED database of Epilepsy Organisations from all over the world with dedicated filters / search features / enquiry methods gives people the power to find information EASILY & QUICKLY.

(we suggest those from the public seeking support check out our "Public Services" page...)

It means people from anywhere in the world can access online support - even on complex topics as we are EPILEPSY SPECIFIC - but we can ALSO promote Awareness, Medical Research & Social issues from around the world relating to Epilepsy via the ECA foundation and our many ECA Connections. Our work expands from Australia to Africa, India, Middle-East, USA, Sth. America, UK, Europe, Indonesia and most other places in the world. We ACTIVELY seek out Charities from every part of the planet to make ECA a larger and more accessible Epilepsy network to the ENTIRE world.

Our "Epilepsy Info" page is a larger conduit for people to seek information, make enquiries, look up work done (current, upcoming or prior) by either ECA or our global ECA Charity Connections, find links / data to ECA projects &/or campaigns... all of ECA's "Awareness work" will be listed here. This includes:

  • All of ECA's public work both from individual & collaborative events. Plus all of our links to all of our numerous social media platforms. If ECA has posted something about "Epilepsy Information" you will be able to find it here. We also provide a "Frequently Asked Questions" feature plus an enquiry option.

  • All of the work by "Paul Lang: ECA CEO & Founder" is also listed via this page. His work as the CEO of ECA... all of his international medical conference work (& related videos / links)... plus his own online Awareness work dating right back to the beginning of ECA - is all available. As CEO & Founder Paul has always wanted to remain fully transparent but ALSO his own experiences are a part of ECA's story.

  • All of ECA's public services are free and open to the ENTIRE world. Anyone can use them, anyone can contact us, and anyone can post/share/link our information to others without fear of reprisal. You do not need to "sign up" to access ECA... we do NOT need your email or details... you can simply use us for free.

Frequently asked questions

What is "Epilepsy"?


Epilepsy refers to a condition that causes symptoms known as "Seizures" - although not well know, it is not a disease in it's own right - and refers to a spectrum of disorders that cause electrical flaring from malformed Nuerons in the brain. In clinical terms, it is defined as "a disorder causing prolonged and recurring seizures from an un-diagnosed source". In this sense, the term Epilepsy is more akin to the term Cancer - in that it describes a range of diseases (many of which are not able to be fully diagnosed) that cause the same overall symptom. Our brains run on a microscopic web of cells that conduct electricity known as "Nuerons". Although not directly linked (like veins for example) the individual Nuerons in the brain create standard electrical pathways that conduct all aspects of our entire bodies. Signals enter the brain, are interpreted, then responded to. For example - we see a light, signals go from our eyes to our brain - it then interprets what we see - and both our concious and subconcious mind respond sending new signals to the body on how to react. All aspects of our concious thought, memory, senses and physical functions (barring those controlled genetically) are controlled through this process: regardless of concious thought or subconcious reactions. Research shows that Nuerons can become malformed cells. This can happen Genetically, through Physical trauma, Chemically induced and for many other reasons. As yet there is no fully defined reason as to how and why Malformed Neurons occur - but the effects are well researched. When a cluster of these Malformed Nuerons forms in the brain - it may cause an electrical abnormality that causes signals passing through this section to amplify exponentially - causing "Electrical flaring". The effect of a massive influx of electrical signals into the brain causes a "Seizure" - and these can have very varying effects from loss of general conciousness to full blown physical reactions such as electrical signals flaring out from the brain, then into the body causing uncontrolled movements.




What causes a "Seizure" to occur and why?


Although highly complicated and many aspects are still unproven - the basis of why seizures occur is based on the principle of an electrical "short" occuring in an interconnected network of signals - our brains. A comon analogy used is to think of our brain like a PC: It has a concious processer, it has connections to power, there are various functions being performed at once (input and output) plus it is all connected and needs to run according to the correct software systems & electrical currents. If you damage just 1 section of this network then the whole system will break down. Seziures can be likened to the effects of power surges in a PC: Perhaps it's just a case of the software "freezing" requiring a restart? Maybe it's worse and saved data or even software / programs could be damaged? Or there could even be full physical effects such as loss of screen / keyboard functions right through to the PC overheating and bursting into flames? The amount of issues that could be caused by just a simple power surge are enourmous - and this is just a PC. Comparitively - our Brains are billions of times more complicated than a PC and subsequently this means the consequences are much more varying and harder to determine... - We could have a "Software freeze" in our brain: similar to a partial seizure / Aura / Petit Mal where we lose conciousness but dont go into physical movements. Our brain resets after a while (depending on the severity of the seizure) then we "come back online" and regain our full mental functions - the time this takes varies based on the power of the electrical surge and amount of related damage / disruption. - Perhaps our "hard drive" will get damaged during this event - we may lose memory not just of the event, but surrounding memory from before and after the seizure. Sometimes there are issues before and after causing loss of full mental & cognative function for a period. This can also cause "Post Ictal" (or "After Seizure") symptoms ranging from simple nausea right through to temporary psychosis. - In many cases the size of the "Power surge" will not be contained to the "Software" of our brain. It will be so great it flares out causes effects on the actual "Hardware" of our bodies. Electrical pathways way be blown, heat from the power surge can damage the battery, the screen and keyboard may disconnect or stop working (fully or partially) etc... This is comparitive to the many forms of physical seizures such as a Tonic Clonic / Grand Mal where the electrical signals flaring from the brain actually escape and go on to cause uncontrolled effects on the body. Common triggers for seizures are not fully defined, but correlative studies show that stress, photosensitivity, drugs & alcohol, sleep abnormalities (lack of or varying patterns), physical issues (digestive, injury, excertion, hydration / food intake to name just a few) and more factors can play a part. Some people get "warning signs" that they are having an oncoming seizure - others do not. The range in variations from syptoms caused by a seizure are immense - plus different people experience many different kinds of seizures & subsequent effects.




How do Epilepsy medications work?


Although there are many different medications all with different technical effects - the principle behind most Epilepsy medications is the "Pathway Blockage" principle (one of many names). Our bodies are a web of pathways, cells, nerves and blood systems that are constantly moving things throughout our body to keep it functioning correctly and prevent damage. From the electrical signals of our brains and nervous systems, to our blood pathways that move all kinds of fluid, protiens / minerals, oxygen / white blood cells for our immune systems (and more) then right through to our skin pores and digestive system - we are constantly moving things back and forth / in and out to provide life to our bodies. Our body is also adaptive however - any of these pathways can become damaged through trauma or infection (example) at any time - and our body has to cope when pathways of any kind break down. An evelotionary reaction we have developed is to grow NEW pathways when older ones get damaged or can no longer cope after long term stress. Our veins are a very good example. If you were to get a scar on your arm that cut off one of the major blood pathways - the body automatically begins to grow a new vein(s) around the scar or to connect with another vein. This keeps the bloodflow pathway to your arm constant and able to keep up the same load of bloodflow - thus the arm wont get damaged or deteriorate. This is a natural process of our body. It is thought (although we cannot directly prove this yet as we cant see it happen within a living brain) that the same principle works with our Nueral pathways. Epilepsy medications are believed to work by cutting off access to the electrical pathway containing the Malformed Nuerons causing the seizures. If the pathway is cut off - then signals can't access it and subsequently cause electrical flaring. But this is the short term effect designed just to tackle the actual seizures. Over the LONG TERM however - it is theorised (and somewhat proven through correlative studies) that if the medication can cut the signals / seizures off for long enough then the body will recognise the Neural pathway is blocked and grow a new Neural pathway AROUND the one containing the Malformed Neurons / Epilepsy. Once this occurs, the malformed Nuerons would "die off" like most unused cells in the body do naturally. So in essence: 1) Epilepsy medications work by blocking access within the brain to the electrical pathway containing the Epileptic Malformed Nuerons. 2) The short term effect is this will prevent electrical signals entering the Neural pathway containing the Epileptic cells that cause the flaring and subsequent seizure. 3) The long term effect is hoped to result in this section of the brain being "cut off" when the body naturally grows new Neural pathways around the one containing the Epilepsy - which then dies off naturally. We must keep in mind however - this is like trying to use flamable liquid to find a needle in a haystack. It takes takes a lot of time - and when there are breaks in the treatments success and seizures recurr it breathes new life into the blocked pathway - increasing the time factor for long term effects. There are also many psychological factors that effect our Neurology that cannot be controlled chemically (stress for example). Plus effects of certain chemical medications can cause massive reactions to the brain, and this varies greatly from person to person. On the positive side - advances in Neurological treatments and technology are happening at a massive rate - we have made more advances in the fields of research, technology & treatments for Epilepsy in the past 20 years than in the prior 100 years. New medications are coming out every year with greater success rates and also refined for lower side-symptoms.




What "kinds" of Seizures exist & what are the common symptoms?


The types of seizures that exist number literally in the hundreds if we take into account the different types of Epilepsy and different kinds of electrical effects that occur plus all the different areas of the brain - and naming them all doesn't really provide much insight. But generally symptoms can be broken down into a few catagories. ABNORMAL CONCIOUS & COGNATIVE EFFECTS: People don't always lose full conciouness or have have visible physical effects during a seizure. Some seizures cause only partial loss of full Neurological function - so the person is partially or fully concious and experiencing symptoms caused by electrical effects from the seizure. They may be able to stay sitting up, or need to slump to the floor based on how active the subconcious mind is during the event. Symptoms can include abnormalities in perception such as visual distortions, strange tastes / smells, loss of balance, pins & needles or itching like feelings in the body, rapid rises in body temperature, nausea, headache, lightheadedness, hyperventilating, profuse sweating and more. These kinds of seizures usually only last for short periods after which time the person comes "back online" and regains full conciousness - most often with little to no memory of the event. These can often be referred to generically as "Deja Vu's", "Aura's", "(mild) Petit Mals", "(mild) Partials" and are often a pre-emptive warning of a more severe upcoming seizure. LOSS OF CONCIOUSNESS: In many cases the elctrical flare from a seizure can actually "knock out" the concious mind and send the person into a subconcious state - although still "awake" they are not actually "there" - effects which are very similar to head trauma. Again the person may or may not be able remain upright but they have no sense of what's going on around them and are not physically "concious". Obvious symptoms will be that the person becomes completely unresponsive to any surrounding stimulus or possibly pass out - but other symptoms include partial loss of muscle functions (losing mouth muscle function causing drooling is a common example) or increased but automated physical reactions (subconciously grinding at teeth or clawing at skin being other common examples). These kinds of events can last for either short or long periods - and may incorporate similar symptoms to abnormal concious / congnative effects listed above. The person may regain full conciousness very quickly but in other cases it takes much longer - often requiring the person to sleep before full Neurological function returns. This can also occur in "Clusters" where the person goes from one seizure right into another one without regaining conciousness. These again can fall into catagories such as "Aura's", "(mid-range) Petit Mals" and / or "(mid-range) Partials" and "(mild) Clusters" plus can also be a warning of a more severe seizure approaching. VISIBLE PHYSICAL REACTIONS: Sometimes the amount of electrical activity caused by a seizure is so immense or highly targeted (or both) it cannot be just contained to our brain. The electrical signals "escape" out into the body without being regulated by the brain so physical movements and/or reactions are generated when the signals reach our bodies nervous system. This can cause milder physical effects such as shaking, anxiety / panic attacks, passing out or convulsions (and more) - but the person can still be fully or semi-concious. These milder effects are often referred to as "(strong) Petit Mals", "(strong) Partials", "(severe) Prolonged Aura's" and even "(mild) Tonic Clonics / Grand Mals". On the more severe end the electrical activity can be so great there is no chance of the brain staying concious, and uncontrolled physical reactions occur until the seizure passes. The person will pass out, hit the ground, and jerking / convulsive muscle movements will occur triggered by excess electrical activity venting out into the body. Locking of the jaw and biting down on the toungue / inner mouth is also very common. These are commonly referred to as "Tonic Clonics", "Grand Mals", "(severe) Localised seizures" and other names depending on the exact style of Epilepsy vs the resulting seizures. In most cases it will take a prolonged period for the person to regain full function including sleep plus there will be severe "hangover" style effects as they recover. "CLUSTERS" OF SEIZURES: In the most severe cases seizures can also occur in "Clusters" during which time the person suffers numerous seizures and may drop back and forth into milder range seizures without any break. The body can only take so much Physical and Mental stress - if severe physical symptoms persist non-stop beyond 5-10 mins or keeps recurring in a cluster with no drop in electrical activity - the person may need to be placed into an induced coma to brake the cycle - or risk many kinds of physical failures (heart, brain, organ, respiritory and more) or even long term damage. "POST ICTAL" PSYCHOSIS AND DELIRIUM: The term Post Ictal is the medical term for "after seizure" - even after a seizure passes it can have prolonged Neurological symptoms akin to psychosis or delirium. Some people have the majority of their symptoms occur in the Post Ictal phase of a seizure, despite few symptoms during the electrical flare itself. The person regains conciousness from the seizure - but does not regain full Neurological function - instead waking in a semi-concious state. Symptoms can range from sleep walking style effects & repetitive actions through to full blown Psychosis. A well known and documented effect includes "Fight or Flight syndrome" - where the patient wakes but is panicked by the fact they can't process the environment of what's going on. The result is they try in a half concious state to "escape" this Neurologically induced panic, and they will often run from the situation or if unable to do this - even attack people immediately around them ("Fight" or "Flight" per say). This is a common problem faced by hospitals and related staff such as ambulance officers. Eventually the person regains full function - this can look strange when it happens quickly as 1 second they are literraly is psychosis babbling away about incoherent thoughts or even acting aggressively. But then al of a sudden it's just "snap"... and they're back. They often immediately and coherently begin asking "Where am I?" / "Was I just having a Seizure?" / "What just happened?" / "Am I injured?" / "The last thing I remember is this.." or similar questions. Although it is not proven, there seems to be a trend that occurs after long term treatment in that as seizures subside overall the remaining Physical Symptoms tend to be replaced by more Post Ictal events (even though reducing overall in frequency and severity). It is thought this is due to the body gaining a natural tolerance to having seizures over time combined with prolonged medication so the physical signals are surpressed / insulated to some degree but offset by more mental based reactions.




What are some of the common side effects of medication?


Epilepsy medications are some of the strongest long term use drugs on the market. Most are derived from Valium, and they act as an electrical surpressant on a chemical level in our brains. Many of these are referred to as "Neuro-valiuts" or "Nueral Surpressants" and are often used (in much lower doses) to treat conditions such as ADHD, Depression, Stress / Anxiety disorders and many more. In basic terms - these kinds of medications cause an electrical "dampening effect" overall, but specifically they target the higher functioning electrical area's of the brain - so predominantly react where the Epilepsy is located and causing flares. Current research and new breakthroughs with CBD (Cannabiniod) based medications is based on the same principle - certain chemicals are attracted to electrical activity in the brain on a cellular level and when they arrive they activate then surpress the surrounding electrical activity to varying degrees. The reason this is important is that it gives us insight into how and why side effcts occur from medications. Epilepsy is a fault in a specific set of malformed neurons - not "the whole" or even "an area" of the brain. Trying to target this microscopic cellular fault by ingesting a chemical medication - then having it spread to the brain from the stomach via the bloodstream (while also travelling through and being absorbed by different sections of the body on the way) - is like trying to mix a drink by throwing different fluids from meteres away into one cup... there is a lot of stuff lost and splashed about in the process and its extremely hard to be accurate. So that's where we need to think logically about the possible side effects: Firstly - we cant target just the Epilepsy, so we need to cover the whole brain in medication that is attracted to high function and causes surpression of electrical activity - so THE WHOLE brain gets caught by side effects from Neural Surpression. If our brains are not running at full capacity side effects occur just as if we were trying to keep functioning after weeks with no sleep - you get tired, anxious, moody, digestive / appetite issues and headaches can occur and our body will start to physically deteriorate in general. Evetually we either stabilise this with sleep, better overall intakes and relaxation - if not it will most likely trigger a seizure. Secondly - we have to keep in mind that there is a constant amount of very strong chemicals (meant for our brain only) passing through the body. These are not designed to travel through our organs, blood system, muscles and other sections of our body - but it is neccesary in order to trasport the drugs to our brain. So our body is constantly taking a hit from unwanted chemicals throughout all of our physical systems. Evetually our bodies can adjust to and stabilise this chemical effect so the physical effects are not as dramatic but it takes work by the body to do so. If not - often new medications need to be applied as the body can't cope with the physical effort of transporting the chemicals into the brain without damaging the body itself on the way. The most common and well known symptoms of medication include loss of balance, digestive issue and general inebria while adjusting to new meds (or on prolonged high doses) in the short term - through to longer term effects such as mood swings, depression, fatigue, weight gain / loss, numbness in the body, issues with sleep patterns and ongoing sensory perception issues (sight, taste, smell, feeling etc). It must be noted that these medications work for Epilepsy patients as they have an excess of electrical activity already in the brain that needs to be surpressed. By comparison - the effects on non-Epileptic patients without this electrical excess of taking these medications in such high doses would be exponentilly more severe and possibly even fatal. This is one of the reasons there are such tight controls on Epilepsy based medications.




What types of issues do Epilepsy patients & thier loved ones face?


Epilepsy is a terrible disability - there is no hiding from that fact. It effects 1 in 26 people in the population and can be caused genetically, through trauma or acquired through other other means (many of which are still being researched). The actual symptoms and side effects from treatments are bad enough, but it is actually the follow on life effects that are often the hardest to deal with. And it doesn't just effect the patient - it spans out into their support network of family, friends and loved ones (who are often the "rocks" we rely so much on for our survival). Some of the most common issues experienced by sufferers of Epilepsy and those around them are based on emotional stress, depression & anxiety, work & career issues, cost of living, general health, immobility & disconnection to society (loneliness) as well as mental instability - to name just a few. People need to simply sit and think... "Imagine if I could just pass out at any second - and wake up with any manner of injury or even worse reacted while not concious during psychosis - or possibly never wake up at all..." - how would you deal with that on a day to day level? Instability is one of the key issues that Epilepsy causes. FOR THE PATIENT: Many people with Epilepsy face prejudicial treatment in society. This can range from bullying - both in school, social circles and the workplace - to full blown inequality issues like lower pay, being passed over for promotions or excluded from the workforce or social activities / groups (examples). There are also many myths and a lack of awareness that perpetuates this prejudice and Epilepsy is still somewhat of a "White Elephant" in general society (although this is changing) so people feel isolated and feel a lack of empathy from the surrounding world. Having any disability generally has finacial and work based consequences. This is often restrictions on working or the amount of hours one can do and then a lack of income leads to further economic instability issues. Unlikie many disabilities though - Epilepsy is very hard to predict in this context - a patient could be fine for years then, with no warning, suffer months with no ability to make income and maintan life expenses. This instability means it is very hard to save, invest, plan or rely on future income and this can be a very hard aspect to deal with over the long term. Even if we take out the damage that may be caused from prolonged seizures and side effects of massive ammounts fo medication - the effects of prolonged emotional stress are well known and can be quite severe. One of the interesting anomalies with Epilepsy is that it is a recurring and very severe symptom - and in most cases the actual patient is not concious to experience the events - however their loved ones or medical staff are. This can create many issues relating to guilt by the strain placed on loved ones and to general society due to a patients condition. FOR LOVED ONES: It is not easy to watch some we love go through illness. but when it's symptoms as severe as seizures - and they recurr constantly with no warning and possibly fatal consequeces - this is many times harder. Combine this with watching them go through emotional, financial and life issues as a result? Well it becomes near impossible... The support networks that Epilepsy patients have range from partners, family & friends right through to teachers, employers and general society. They have to watch the dramatic events, see us go through years of medical and life issues and in most cases are pretty powerless to do anything directly. Often they are the targets of emotional outbursts or psychotic events for the person they support too. Prolonged emotional support creates stress, frustration, guilt, anger and all kinds of other emotions and people need to recognise that the effects on the loved ones of Epilepsy sufferers can in some cases be as severe as the effects suffered by the patient themselves. It is a difficult journey and takes a huge toll on people as they walk it.





INFORMATION WORLDWIDE

ECA's information page is the best place to find our Global Epilepsy work... & the work of Paul Lang ECA CEO & Founder directly... plus our countless collaborative efforts with other worldwide charities. It is the "central database" for our information.

It is also the place you can:

  • Find / reference any & all ECA projects / publications

  • Look up, link, download or save ANY posted data for FREE with no legal obligations

  • Join into the online discussion forums on topics you take interest in (WITHOUT signing up)

We DO advise however that anyone in the world seeking DIRECT OR SPECIFIC help with Epilepsy view our "Public services page" (or contact us direct - info@epcona.org) and that CHARITIES seeking assistance review our "Charity Services page" for the most direct support options ECA can provide.

Sometimes Epilepsy feels like a mountain...

but we are not just standing alone.

One of ECA's key mandates is "Supporting the Supporters" - this refers to our policy of providing services to the partners, family and loved ones of those with Epilepsy. Without our support networks those of us with the condition could not get by.

ECA focuses on providing support to the loved ones of those with Epilepsy. It is a battle for you too - and you deserve support.

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Epilepsy Connections Affiliated is an International non-profit foundation that provides free services to both the global public and worldwide Epilepsy related organisations. We provide information and support to anyone in the world with no costs or membership requirements, and help people find relevant services to assist with their Epilepsy. We also assist other Charities, Medical groups and foundations with Social expansion, Technical services and collaborative efforts to help other Epilepsy based organisations have greater impact and achieve larger goals. All ECA Connections remain fully independent, but our extensive network is based on collaboration and joint efforts.

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