Epilepsy Awareness Month

[Club_Stoic]

Epilepsy Awareness Month by The Church of Satan | NationStates • View topic - The Rejected Times: Issue LXIV

November is known by many as Epilepsy Awareness Month. This however is out of necessity. While there are specialists and several neurologists that study the condition much is still not known about it. Currently, a cure does not exist and as a result, it is a chronic illness.

What is epilepsy anyways? This is an important question because the overwhelming bulk of people really don’t know what’s true and what’s a rumor so people primarily defer to rumors as truth. This causes people to avoid helping those they might witness having a seizure. Most people believe epilepsy to be contagious. This of course is a rumor disproven by scientific research.

Epilepsy is a neurological disorder caused by the brain’s misfiring of neurons that cause epileptic seizures. Seizures are characterized by shaking, loss of consciousness, and among other things memory loss. The disturbing truth is that it is a very common condition. One in twenty-six people worldwide will develop epilepsy in their lifetime. There are about twelve different types of epilepsy and over forty types of seizures. What kind of epilepsy one has is a significant factor in determining what kind of seizures one might experience. The two primary types of seizures are focal seizures and generalized seizures.

Approximately 60% of people with epilepsy experience focal seizures. These are called partial seizures which are generally characterized by blackouts during which time one might continue moving or talking. When consciousness resumes the person in question will be unaware of their actions. Generalized seizures however are the more widely known variety. These are characterized by blackouts, shaking, intense muscle spasms, and foaming at the mouth. They are very violent in nature. This is where the stigma is derived. Many people are more likely to attribute these seizures to the result of a drug overdose. Several even go so far as to rob someone during the seizure and do nothing to help.

The effects of epilepsy are not just physical either. Memory loss is common. Generally short-term memory. Sure muscles are usually worn out, bones are sometimes broken and many deep gashes, bruises, or cuts are caused but the remaining effects are far worse. Firstly there are the personal effects. Depression is common among epileptics. Attempted suicide is not uncommon due to this. The condition robs people of their independence and often makes finding employment exceedingly more difficult. Travel is also more difficult because it makes driving too dangerous not just to the driver but to everyone around them. The psychological effect is difficult too. Everyone around them is one way and they are another so it makes them feel like something is wrong with them. Others also perceive them differently. Friends and sometimes family leave them behind. People will frequently accuse one of faking their seizures and by extension downplaying the severity of the condition itself. This journalist speaks from experience.

Seizures can be caused by a vast multitude of things: stress, thirst, hunger, sleep deprivation, flashing lights, caffeine, nicotine, alcohol, heights, and even changes in barometric pressure. Anti-seizure medication is also not always effective. Some might go their whole lives without experiencing more. Some go decades before having another. Some go a couple of years, a couple of months, or a couple of days. There are of course those that are catatonic every moment of their lives. Every seizure damages the brain and things get worse. If pharmaceuticals are unable to help those in need then where can they turn? Despite all the current knowledge, there is still much more that is unknown. In recent years marijuana and oil derived from it have made groundbreaking strides towards returning the lives of epileptics to normalcy. Perhaps even towards a cure but that is rather presumptuous of me to say.

As November comes to an end keep this in mind: if you see someone have a seizure don’t just stare at them. You now have an idea of how strong they are to endure things many could not. Be there for them. Help them properly. Note below how to properly aid one that is having a seizure:

[Club_Stoic]

Epilepsy Awareness Month 2018
COMMENTARY | THE CHURCH OF SATAN, SENIOR CORRESPONDENT
https://forum.nationstates.net/viewtopic.php?f=12&t=221965&p=34844049&hilit=epilepsy+awareness#p34844049

It’s been one year since The Rejected Times’ previous article for Epilepsy Awareness Month. Last November’s article was about people that have epilepsy, however, this time we will be talking about what the people around them, friends and family, go through. Getting right into that can be a very painful and stressful experience, especially for children. Often when children see a friend or family member have a seizure it is traumatizing. Most often, children become terrified of seeing it again, quickly turning away and avoiding having to look at that person. It is very tragic, having long-term emotional and psychological effects, with which there’s no telling when or if they will heal. As for the adults that endure the experience, it is primarily more stressful than traumatic. It’s like a permanent stakeout. Every loud noise, pause, and twitch are cause for alarm, “Is he/she having a seizure?” “I better go check on them just in case.” “Did they get hurt again!?” It’s a very difficult thing to live with.

More than that it changes how they see a friend or family member that has epilepsy. Often one ends up treating such a person differently. At first, it generally consists of pity, as if the person is less capable of taking care of themselves, but it changes over time. Depending on the severity of one’s epilepsy their family and friends eventually perceive them as somewhat self-reliant. Even so friends and family almost always feel helpless because they can’t “fix” or get rid of the seizures. Do they help and protect them to prevent injury or lessen seizure triggers? Is it overprotection that can potentially be harmful? Where is that fine line between encouraging independence yet being realistic about life’s risks and the impact of seizures?

Grandparents, aunts, uncles, and cousins can also be affected just as much as immediate family members and friends. Sometimes pitching in when someone is sick, driving to appointments, running errands, babysitting, visiting someone that’s in the hospital because of a seizure all the while they might not be as informed as immediate family members. They might have questions or need someone to talk to about how they feel after taking care of a more distant relative with epilepsy.

Parents of someone with epilepsy have an even more difficult task. They have to teach crucial life skills, self-discipline, teamwork, responsibility, and having fun all while taking their epilepsy into account. They also have to be adapted to suit the unique needs of the child compared to that of a healthy child. As the advocate for their child the parent’s responsibility is far greater. They need to learn new information and skills in order to better care for their child as well as properly navigate the healthcare system. In addition to all of this, they may have to find a balance between work and focusing on their child. They have to find a balance between all of that and the other relationships in their life such as that of their spousal or friendships with others. Often times a parent might put everyone before themselves and this isn’t healthy. The sad fact is that you can’t do it all. Nobody with someone in their life that has epilepsy can simply ignore their own needs. You have to remember that you are important too. My time doesn’t have to be expensive or extravagant. It just has to be there and you need attention too!

[Club_Stoic]

Epilepsy Awareness Month 2020
COMMENTARY | WRITTEN BY The Church of Satan
https://forum.nationstates.net/viewtopic.php?f=12&t=221965&p=38196210&hilit=epilepsy+awareness#p38196210

First and foremost, it is important you know that I AM NOT A DOCTOR. The information from this article is derived from organizations that specialize in epilepsy as well as the scientists therein. Admittedly I missed 2019’s article for reasons I can’t remember. I’m even late for 2020’s article. It may not be November or 2020 right now, but regardless I think this article is very important under the circumstances. With a pandemic in full swing, many people have one question on their mind, “How does COVID-19 affect people with epilepsy?” The short answer is that it does and it doesn’t. It can either have no effect, or it can have severe effects. I know what you’re thinking, “This sounds like an answer and a non-answer!” The long answer requires more detail, and I hope you stick around long enough to read it. Studies are being conducted around the world but so far none have discovered any increased risks from the virus itself. First, we’ll be looking at the beginning.

Pre-Infection

Currently, studies show that people with epilepsy are not at an increased risk of infection. Non-related factors can, of course, result in an increased risk of infection but epilepsy itself is not a risk factor because it does not compromise the immune system. If you have COVID-19 and epilepsy, then epilepsy had nothing to do with it. While the CDC has included epilepsy on a list of conditions that may increase the risk of infection, that is only because it is a neurological condition. The UK has included people with neurological conditions as an “at-risk” group, but it does not specify epilepsy. Until studies prove otherwise, there is no reason to believe that epilepsy increases the risk of infection. Additionally, there is no evidence to suggest that epilepsy medication causes an increased risk of infection so you can take comfort that the medication will not cause any complications.

During Infection

This is where it gets risky. People with uncontrolled seizures, particularly seizures triggered by fever or infection, may be more vulnerable to increased seizures at the time of infection but there is no evidence of this yet. There is also no evidence to suggest that epilepsy medication will cause complications after infection. I am no doctor, but I am not concerned about any trouble from taking my medication during the pandemic. However, studies show that there is a low risk of an increase in the frequency and severity of seizures after infection. This is where you should be concerned but attempts at prevention of infection are the best way to avoid this possibility. Fever and the stress on the body that comes with COVID-19 are where the increase in seizure frequency and severity come in. However, even without COVID-19 fever and any condition that causes significant stress on the body could have the same effect. If you have symptoms of COVID-19 the smart thing to do is to get tested as soon as possible. If you do have a seizure it is more prudent to call your doctor rather than go to the emergency room unless your seizure lasts for more than five minutes, occur in clusters, occur in water (such as while in the bath or a swimming pool), are followed by unusually prolonged postictal symptoms (confusion after a seizure) or abnormal recovery or if the seizure(s) cause potentially dangerous injury. If you’re taking any experimental drugs, then the institution responsible for monitoring you and your condition should be consulted. They will know better. If you do go to the emergency room or even just for a check-up at your regular doctor, then it is prudent to let them know you’re taking an experimental drug. The effects it can have are unknown. If you or anyone else is wearing a mask during a seizure it is recommended that the mask be carefully removed in order to facilitate optimal airway function. If a seizure does last for more than five minutes, then you can be content with the safety of administering buccal or nasal medication (intranasal midazolam) as there is no evidence to suggest that they will cause complications due to COVID-19 infection. Recent evidence has suggested that laying prone (on your stomach) causes improved breathing in people that have respiratory issues caused by COVID-19. However, sleeping in a prone position has been associated with SUDEP (Sudden Unexpected Death from Epilepsy), a condition that is currently very much not understood. I’d go into it but since it was intended to be the subject of last year’s article, let’s save that for next year’s article. Let’s just say that for reasons unknown, people with epilepsy are more likely to die from seizures if they sleep while laying prone. If you have epilepsy and COVID-19 it’s best to consult your doctor about how to proceed in this regard. In conclusion, prevention is the most important thing you can do. Take steps to lower your risk of infection. If you are infected then consult your neurologist and your primary care physician. They will be a better source for advice on the subject than any average joe, including me.

Indirect Effects

By virtue of the chaos and “traffic jam” as it were, you might find that it’s more difficult to get your prescriptions. Doctors are busier than ever and drug stores have longer lines. It would be prudent to ask your doctor about extra prescriptions just in case. You wouldn’t want to run out of medication at all, but even more so now.

DISCLAIMER: While surveys conducted via telephone and other telecommunications methods have gathered certain data on the subject, those surveys do not have any scientific data to support their conclusions, (including but not limited to EEG’s, physical examinations, blood tests, etc) so I would not rely on them for accuracy unless scientific studies have corroborated their findings.

Editor’s Note: you can view more information about COVID-19 on the World Health Organization’s Website here: Coronavirus disease (COVID-19)

[Club_Stoic]

Epilepsy Awareness Month 2021 | by The Church of Satan
(originally published late in The Rejected Times on December 25, 2021)

It’s November again. Every November over the last few years, I’ve written about multiple aspects of epilepsy; how it affects those diagnosed, how it affects family & friends, first aid procedure, as well as the impact that COVID-19 could have on people with epilepsy. This year, however, I’m writing about something more concerning than living with epilepsy; sudden unexpected death from epilepsy, or SUDEP as it is more commonly called. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. For decades, it has been unknown how SUDEP causes death. Studies suggest that 1.16 in 1000 deaths in people with epilepsy are attributed to SUDEP every year. It’s terrible living with the thought that your next seizure might be the last thing you experience, and you won’t even know it. We all live with the risk of death, from one source or another, natural or not. However, the constant thought that you will simply lose consciousness and never wake up, although some might think of it as peaceful, is somehow more frightful for people with epilepsy because we live with it. We don’t have a choice in the matter. We either live with it or we die from it. We do or we don’t.

SUDEP has been studied for decades, and yet no progress has been made. Just as progress towards a cure for epilepsy has been slow, so to has progress towards understanding how SUDEP occurs. Children with uncontrolled epilepsy or frequent seizures are at the highest risk for SUDEP. The main risk factors for SUDEP are:

∙Uncontrolled or frequent seizures
∙Generalized convulsive (also called tonic-clonic or grand mal) seizures

Other possible risk factors may include:

∙Seizures that begin at a young age.
∙Many years of living with epilepsy.
∙Missed doses of medicine.
∙Drinking alcohol

For many people with epilepsy most of these factors are unavoidable. Circumstances have been decided for them long ago. Only two of these risk factors can be consciously avoided. The rest are up to some degree of genetics, accidents, and statistics. Anyone concerned with the risk of SUDEP should consult their doctor of course. The first and most important step to reduce your risk of SUDEP is to take your seizure medicine as prescribed. If you are taking seizure medicine and are still having seizures, discuss options for adjusting the medicine with your doctor. If seizures continue, consider seeing an epilepsy specialist. Other possible steps to reduce the risk of SUDEP may include:

∙Avoid seizure triggers, if they are known.
∙Avoid drinking too much alcohol.
∙Learn how to better control your seizures with epilepsy self-management programs.
∙Get enough sleep.
∙Train adults in the house in seizure first aid.

important steps in seizure first aid

Major progress has been made in determining how seizures result in death, as indicated in the neurology journal, Brain, Volume 142, Issue 2, on February 1st, 2019, Pages 412–425. The article can be read here: https://academic.oup.com/brain/article-pdf/142/2/412/27635439/awy325.pdf. The brief explanation is that during a seizure, the depolarization of neurons (part of the process by which signals in the brain are normally transmitted between nerve cells) is intensified and spread after a seizure, which instead silences brain activity, and if it reaches the brainstem it becomes fatal, resulting in death. This is because the brainstem plays an important role in regulating breathing. In non-fatal seizures, the depolarization doesn’t reach the brainstem. This discovery of how SUDEP occurs brings scientists one step closer to finding a means to prevent it from occurring! Someday there may be hope. For now, we’ll have to buckle down and wait.