How I Live My Best Life Despite Having Epilepsy

How I Live My Best Life Despite Having Epilepsy

Epilepsy Symptoms

“I started having auras (focal aware seizures) when I was about 9 years old. At that age, I could not describe the feeling properly and therefore no one took it seriously.

It made me feel nauseous and I ‘experienced’ situations like this again in my life. Later, in 2016, it turned out to be epigastric deja-vu auras.

In 2013, I had my first EEG (electroencephalography), as I had been suffering from almost daily headaches for years. The outcome was found that epileptic potentials were visible.

In December 2013, I had my first tonic-clonic (earlier: grand mal). A few days of hospital, examinations, etc. EEG showed epileptic potentials.

I received the diagnosis of Hemiplegic Migraine with seizures as a booklet ‘Living with Epilepsy’ was put in my hand.

Epilepsy Diagnosis

Until April 2016 I had treatment in a pediatric hospital with a pediatric neurologist. I mostly had epileptic activity visible in EEG, several tonic-clonic, and many focal seizures, nevertheless my diagnosis was migraines.

In April 2016, I got treatment from a real neurologist. My diagnosis was epilepsy, most likely temporal lobe epilepsy on the left.

No surprise there, since all the doctor’s letters already showed this. There, it also became clear that these strange events are auras (focal aware seizures).

From 2016 to 2018, I had examinations, took the same medication, and accepted the whole situation with some indifference. In 2017 I went to an epileptologist. He confirmed the diagnosis again.

Since September 2018 I’m tonic-clonic free, but experience focal aware seizures and focal impaired awareness seizures a few times a week.

I have had a new neurologist since February 2021, where I receive much better treatment and am able to get a better understanding of epilepsy. I have more time for myself as well as more courage to take risks and get tested.

Still, I experience small seizures. My goal is seizure freedom and to experience as few side effects as possible. In reality, it’s not that easy to get freedom from the small seizures, I’m still accepting this whole situation.

Life After Diagnosis

Since waiting to get an official diagnosis dragged on for years, there was never ‘the moment’ when it blew me away. From the beginning, it kind of bugged me and I just accepted everything for the time being.

Since I was in the middle of puberty, the situation was of course not easy. It was especially bad as I was not allowed to pursue my dream job of becoming a police officer. It wasn’t until I was 18, after graduating from school, that I really came to terms with the disease.

Everyday life with epilepsy is often not too different from healthy people. I have to take medication in the morning and evening. Since I am not allowed to drive a car, I am always dependent on public transportation, so I take the bus to university and work.

As soon as the diagnosis is made and you are relatively well adjusted to the medication, you don’t have to go to the neurologist as often. These doctor’s appointments are then additionally exhausting after work or university.

In the evening, and sometimes in the afternoon, I am usually very exhausted. My concentration is very poor, which makes it even more exhausting. Therefore I need a lot of time for myself as well as time where I don’t do much.

On some days, when the focal seizures are exhausting, my strength is even less. Fortunately, this rarely happens anymore.

The worst, and most annoying thing in itself, is that I can’t drive. Getting around often takes longer, and I always have to go shopping on foot.

I am dependent and not so flexible. All in all, however, my everyday life is relatively normal.

Advice For Others With Chronic Illness

Accept the illness

Acceptance is a big and difficult issue with chronic diseases. Once you overcome the question, ‘Why me?,’ it becomes much easier.

At that time, I simply ‘accepted’ it and got along very well with it. After all, I can’t do anything about my illness!

Avoid triggers

Know and avoid triggers! My triggers include alcohol, stress, and lack of sleep. Avoiding these is easier said than done, I know.

I am also stressed all the time and really tired all the time. Still, it’s important to take time and rest.

Seek multiple opinions

In case of dissatisfaction/uncertainty with doctors and especially neurologists, it is really advisable to look for another one and listen to their opinion. Especially regarding other examination/treatment and cause-finding methods.

I have changed several times and now I am really satisfied. It also makes everything so much easier and more pleasant.

Be adventurous

Dare! You often hear with epilepsy, some things should be completely refrained from. This includes, for example, swimming, climbing, driving a car, and so on.

If the seizure situation allows it, all of these things can be done. Such things can always be discussed with the neurologist as well.

Educate yourself and others

Unfortunately, there is still a lot of prejudice and ignorance about many chronic diseases, which includes epilepsy. Educating can be done in a variety of ways, such as through social media, interviews, newspapers, radio, projects, and even just talking to friends/relatives.

With my Instagram page and projects, I am always working to educate others as well.

Stay optimistic

Don’t get discouraged! Even if a bad phase lasts for a long time, it will pass.

Living My Best Life

I’ve achieved so much already. I am an engineer.

Who would have ever thought? I was bad at math and especially physics.

If you try so hard, fight and make it, it gives you a huge boost in self-confidence and strength.

I’m doing my master’s degree and working as an engineer on the side. I’m a founding member and secretary of an organization called Epilepsie Empowerment Deutschland e.V. and am working on different projects.

Yes, the stress really knocks me out. I have very big problems coping with stress, but I know it’s worth it and the results are great.

What then keeps me alive?

I have my boyfriend who is a resource for me. When I feel bad, the thought that somebody cares about me cheers me up. I have parents who love me and care about me, even if it’s a difficult relationship at times.

My successes and resources keep me alive. My bad experiences and thoughts partly outweigh the rest but I always get out of there stronger.

Chronic Illness And Mental Health

With chronic illnesses, mental stress or illnesses usually occur as well. Due to epilepsy and the psychosocial consequences, there may be accompanying mental illnesses. Often these are depression or anxiety disorders in people with epilepsy.

Seeking help from a psychotherapeutic specialist can also be helpful. Getting help from a therapist is nothing to be ashamed of!

Raising awareness in every way is so important. I‘m happy to see so many people already being advocates and raising awareness. You‘re all so brave and strong!

In closing I would like to share with you my favorite quote, ‘One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.’”

 

Source: lovewhatmatters.com,  amanda bouchard

Understanding Epilepsy and Depression

Understanding Epilepsy and Depression

Depression, also called major depressive disorder (MDD), commonly occurs in people with epilepsy and contributes to a lower quality of life, increased time in hospitals, and less control over seizures. Though the two illnesses often occur together, depression is frequently overlooked and undiagnosed.

This article will discuss the connection between epilepsy and depression, the complications of having both disorders, and how to diagnose them. It will also provide treatment options for epilepsy and depression and ways to cope with them.

The Connection Between Epilepsy and Depression

Depression is the most common mental illness in those who have epilepsy. In fact, people with epilepsy are three times more likely to be diagnosed with depression than those without epilepsy. Having depression with epilepsy can be highly disruptive when left untreated, and it often affects a person’s quality of life more significantly than seizures do.

While the connection may be due to various reasons, managing and coping with epilepsy has been found to impact mood and cause depression symptoms.

Latest Research

Recent data shows that the prevalence of depression in people with epilepsy is actually higher than once thought, and whether a person develops depression is not dependent on the severity of epilepsy or how controlled it is. About 23% of people with epilepsy are also diagnosed with depression.

Complications of Epilepsy and Depression

Depression has been shown to worsen epilepsy. It can lead to negative outcomes following surgery for epilepsy and can also interfere with medications used to treat epilepsy symptoms. Depression is also associated with suicide and can severely impact a person with epilepsy’s life.

If you are having suicidal thoughts, contact the National Suicide Prevention Lifeline at 988 for support and assistance from a trained counselor. If you or a loved one are in immediate danger, call 911.

For more mental health resources, see our National Helpline Database.

Diagnosis of Epilepsy and Depression

Early diagnosis of depression in those with epilepsy is extremely important for successfully managing both illnesses. If depression is suspected, you should contact a mental health professional as soon as possible.

Diagnostic Criteria for Depression

The Diagnostic and Statistical Manual of Mental Disorders version 5 (DSM-5) requires you have at least five of the following symptoms for two weeks for a diagnosis of major depressive disorder:

  • Depressed mood
  • Loss of interest or pleasure
  • Weight loss or gain
  • Sleeping too much or too little
  • Slow psychomotor movements
  • Fatigue
  • Feeling worthless or excessive/inappropriate guilt
  • Decreased concentration
  • Thoughts of death or suicide

In addition, the following four criteria must be present:

  1. The symptoms cause significant distress or impact functioning.
  2. The symptoms experienced are not caused by substance use.
  3. The symptoms are not due to a psychotic disorder.
  4. The person does not have a history of mania or hypomania.

Common Depression Symptoms in People With Epilepsy

In people with epilepsy, the most common depression symptoms include:

  • Poor frustration tolerance
  • Loss of interest or pleasure
  • Helplessness
  • Irritability
  • Feelings of self-deprecation
  • Feelings of guilt
  • Crying bouts
  • Hopelessness

As some of these symptoms don’t meet the formal criteria for MDD, depression is often missed in those with epilepsy.

Depression Screening Tools

Depression can only be diagnosed by a mental health professional. Screening tools are often used to help identify depression symptoms and help with making a diagnosis. There are many tools to screen for depression, including:

  • The Patient Health Questionnaire 9 (PHQ-9)
  • Hospital Anxiety and Depression Scale (HADS)
  • Mini-International Neuropsychiatric Interview (MINI)
  • Neurological Disorders Depression Inventory for Epilepsy (NDDI-E)

All of these tools have also been validated for those with epilepsy.

When to See a Healthcare Provider

Depression and epilepsy have a bidirectional relationship, meaning they can affect and potentially worsen one another. If you or a loved one are experiencing any symptoms of depression or if epilepsy symptoms change or worsen, see your healthcare provider immediately.

Treatment of Epilepsy and Depression

Depression can affect the effectiveness of epilepsy medications, especially for those who were diagnosed with depression prior to developing epilepsy. Therefore, it’s essential to be in regular communication with your healthcare provider to monitor symptoms and ensure treatment efficacy.

Medications

Some medications that are used to treat depression can worsen seizures. Therefore, people with epilepsy should work closely with a healthcare provider specializing in treating epilepsy and a psychiatrist. Antidepressants should be started in low doses and increased as needed and tolerated. Medications that are recommended to treat depression in people with epilepsy include:

  • Selective serotonin-reuptake inhibitors (SSRIs)
  • Norepinephrine-reuptake inhibitors (SNRIs)

Both of these families of medications are shown to have little effect on seizures and to have fewer side effects. Medications from other families of drugs that are used to treat depression should only be used if SSRIs and SNRIs are not effective and only under the guidance of your healthcare provider.

Psychotherapy

Psychotherapy can be an effective way of treating depression in people with epilepsy. Though therapy is unlikely to improve seizure management, it can help improve depression symptoms. Of the available therapeutic interventions, cognitive-behavioral therapy (CBT) may be the best option. This is because CBT can be adapted to meet the individual needs of the person seeking treatment to support their biggest concerns and symptoms. In some people with epilepsy, CBT can help reduce depression symptoms over a three to four-month period.

The kinds of skills and techniques taught in psychotherapy may include:

  • Behavioral change
  • Social interaction support
  • Goal setting and problem solving

A therapist will work with each client to determine the most-needed behavioral and social skills.

Coping With Depression and Epilepsy

Depression significantly impacts a person with epilepsy’s quality of life. People with epilepsy and depression often experience more resistance to medication, worse outcomes after surgery, and higher rates of suicidal thoughts. However, finding ways to cope through lifestyle changes and peer support can improve the quality of life.

Coping Strategies

Though not a replacement for medical intervention, there are many coping strategies that can help reduce symptoms of depression in people with epilepsy. Some include:

  • Learning about the illnesses and how they impact you. Having an understanding about how depression and epilepsy symptoms impact one another can help when trying to prevent episodes. For example, for many people, a depressed mood tends to be worse in the 24 hours leading up to a seizure. In some people, however, depression symptoms don’t occur until several days after a seizure.
  • Seeking support from friends and loved ones. Sharing thoughts and feelings with others can reduce feelings of isolation and provide a safe place to talk when things feel overwhelming.
  • Using relaxation techniques. Meditation, yoga, breathing, and other relaxation exercises can help reduce stress.

Support Groups

Support groups can offer connection, a safe place to ask questions, and an opportunity to find resources and help others. There are two types of support groups:

  • Peer-run support groups are led by non-professionals who share the same condition(s). These kinds of groups can often be found by searching online for epilepsy or depression support groups. Some places to find support groups include FND Hope and Mental Health America.
  • Clinical support groups. These groups are run by licensed mental health professionals. Usually, a mental health professional will start a support group with current individuals facing similar challenges. Ask your mental health professional about available clinical support groups.

Summary

Depression is the most common mental illness in people with epilepsy and can worsen epilepsy symptoms by increasing seizures, interfering with the efficacy of medications, and worsening a person’s quality of life. Therefore, early diagnosis of depression in people with epilepsy is an important way to reduce its negative effects. A mental health professional can use a depression screening tool like the Patient Health Questionnaire 9 (PHQ-9) or the Hospital Anxiety and Depression Scale (HADS) along with the diagnosis criteria from the DSM-5 to determine whether someone has depression.

Treatment for depression in people with epilepsy can be complex, as some medications can worsen seizures. Therefore, all medical professionals must know about a epilepsy and/or depression diagnosis before forming a treatment plan. Some medications, like selective serotonin-reuptake inhibitors (SSRIs) and norepinephrine-reuptake inhibitors (SNRIs) have been shown to be particularly safe and effective for treating depression in people with epilepsy. In addition, psychotherapy and support groups can also help with treating depression symptoms.

A Word From Verywell

Depression can have a significant impact on a person’s life. For people with epilepsy, depression can be even worse. If you are coping with depression symptoms along with epilepsy, get help right away. It may feel isolating and scary to manage both illnesses, but there is support. Talk to a mental health professional, especially a psychiatrist, as well as your healthcare provider, to ensure your medications are working well. It often helps to talk to others with the same illnesses. Try finding a support group where you can make connections and find resources. Depression is the most common mental illness for people with epilepsy; others can support you as you learn to cope with symptoms.

 

Source: verywellhealth.com, Melissa Porrey LPC, NCC

Epilepsy Drugs May Up Risk of Parkinson’s

Epilepsy Drugs May Up Risk of Parkinson’s

Strongest association seen for sodium valproate

 

Source: medpagetoday.com, Kate Kneisel

What Is Juvenile Myoclonic Epilepsy?

What Is Juvenile Myoclonic Epilepsy?

A Complex Type of Epilepsy

Juvenile myoclonic epilepsy (JME) affects about 10% of people with epilepsy.

 Several types of seizures occur with JME. The seizures generally begin during late childhood or early adolescence.

Seizures can usually be prevented with medication, although sometimes the seizures are not adequately controlled with anti-epilepsy drugs (AEDs). The prognosis of the condition is variable—some people with JME need to continue to take AEDs throughout life, but some no longer need medication during adulthood.

This article describes the symptoms, causes, diagnosis, and treatment of juvenile myoclonic epilepsy. It also provides information about what you can expect if you or your child is diagnosed with this type of epilepsy. JME is also called juvenile myoclonic epilepsy of Janz or Janz syndrome.

Juvenile Myoclonic Epilepsy Symptoms

Seizures are the primary symptoms of JME. Children who may have been otherwise healthy can begin experiencing the symptoms of JME between ages 12 and 25.

In JME, the seizures are typically triggered by stress and a lack of sleep. Some people with JME have photosensitive epilepsy, which means that the seizures are triggered by rapidly flashing lights. Additionally, alcohol, drugs, and severe illness can also trigger seizures.

The three seizure types occur in JME are:

  • Myoclonic seizures: A myoclonic seizure in JME typically occurs within a few hours of waking up from sleep. These episodes involve involuntary jerking motions, usually of the arms, with or without a decreased level of awareness.
  • Generalized tonic-clonic seizures: This type of seizure involves involuntary shaking and jerking of both sides of the body, with unawareness of what is happening. A person may pass out or sleep for minutes or longer after a generalized tonic-clonic seizure. This seizure type may result in physical injuries.
  • Absence seizures: The episodes are often described as staring spells. Absence seizures include staring into space without interacting or responding. Less often, they involve involuntary face, hand, or mouth movements. Absence seizures typically last for less than 10 seconds at a time, and people can’t remember having them.

The severity and seizure pattern in JME varies, and people may have one or more of these seizure types.

Associated Conditions 

People with JME have a higher-than-average risk of learning problems and motor deficits (impaired movement).

JME is associated with a higher risk of cluster B personality disorders, which include borderline personality disorder, antisocial personality disorder, histrionic personality disorder, and narcissistic personality disorder. Personality disorders are long-term patterns of behavior and inner experiences that differ significantly from what is expected.

The sibling of a person with JME also has a higher-than-average risk of learning problems.

Causes 

Seizures are caused by spontaneous, abnormal electrical activity in the brain. It’s believed that JME is caused by structural changes in the brain that occur during early brain development.

The condition can occur without any family history of epilepsy. But about half of people who have JME have relatives with epilepsy.

The genes that have been identified in association with JME are variations of GABRA1, GABRD, EFHC1, BRD2, CASR, and ICK, with complex inheritance patterns.4 These genes are associated with brain development.

Diagnosis 

Epilepsy is diagnosed based on symptoms, physical examination, electroencephalogram (EEG) (a test that records electrical activity in the brain), and brain imaging tests.

Different epilepsy syndromes, such as JME, have certain characteristics. While not everyone with JME has exactly the same experiences, the age of onset and the descriptions of the episodes may suggest that a person has this epilepsy syndrome.

For most people who have JME, a physical examination, including a neurological examination, is expected to be normal.

Brain imaging is normal in this condition as well. Some subtle changes can be detected on brain magnetic resonance imaging (MRI) or positron-emission tomography (PET) scans, but the presence or absence of such changes doesn’t rule in or rule out JME.

An EEG may show a pattern that is described as a 3 Hertz spike and wave pattern that is primary noted in the occipital cortex, which is the posterior (back) area of the brain.

Treatment

For most people, JME is treated with AED medication, which must be taken on a daily basis to prevent seizures from occurring. The AED most commonly associated with the improvement of JME is Depakote (valproate). However, valproate does not always fully control seizures.

Valproate is known to be potentially unsafe during pregnancy. People who might become pregnant may switch to an AED that is safe during pregnancy, ideally before becoming pregnant.

Other AEDs used for preventing JME seizures include Lamictal (lamotrigine), Keppra (levetiracetam), Zonegran (zonisamide), and Topamax (topiramate). If the seizures aren’t well controlled, one or more of these AEDs can be added to valproate or used instead of valproate.

Drugs That Worsen Seizures

Tegretol (carbamazepine), Trileptal (oxcarbazepine), and Dilantin (phenytoin) are AEDs known to worsen the seizures in JME.

Some people may have treatment-resistant epilepsy, which means that the seizures are not adequately controlled with tolerable doses of AED treatment.6 In these situations, epilepsy surgery might be considered a potential option.

Surgical procedures used for treating epilepsy include the implantation of electrical devices or surgically placed lesions in the brain that can help prevent the electrical brain activity that causes seizures.

Prognosis 

The outcome of JME is variable. For many people, the symptoms of JME stop during their 40s.6 In these instances, adults can discontinue AED treatment under the supervision of a physician. However, some people with JME may continue having seizures and need lifelong AED treatment.

It is not possible to predict with certainty whether a child or teenager will continue to need lifelong treatment or whether they will have an improvement in their seizures when they reach adulthood. In general, having continued seizures due to JME is associated with more severe and frequent seizures during childhood and adolescence.

Coping 

Living with epilepsy as a young person can be challenging. It’s important to take medication as directed and learn the potential side effects. Discuss any side effects with your healthcare provider because some AED side effects can be serious.

It can be difficult to gauge how well the AED medication is working. Keeping a diary to track your seizures can help monitor whether the seizures are improving.

Avoiding triggers is a key factor in preventing seizures. Lifestyle measures you need to pay attention to include:

  • Don’t drink alcohol.
  • Get enough sleep.
  • Learn how to recognize your stress so you can slow down.
  • Learn about stress management techniques.

Talk to a healthcare provider about whether it’s safe for you to drive, and be prepared to adopt safer ways of getting around if there is any risk that you could have a seizure while you are driving.

Summary 

Juvenile myoclonic epilepsy (JME) is an epilepsy syndrome that begins during adolescence. It is characterized by three different types of seizures, which include myoclonic seizures, absence seizures, and generalized tonic-clonic seizures.

The condition can be treated with anti-seizure medication, and treatment is effective for most people. Several different medications are available for treating JME, but some anti-seizure medications can actually worsen this type of epilepsy.

Many people outgrow JME by the time they reach mid-adulthood, but some may need treatment for the rest of their lives.

A Word From Verywell

Epilepsy is a serious medical condition, but it is manageable with medication. You may need to make some lifestyle changes if you have JME. In particular, get enough rest, manage stress, and avoid alcohol.

Certain activities, such as driving or operating dangerous equipment, require careful consideration and a discussion with your healthcare provider about whether they are safe for you. Most people are able to live long, healthy, and productive lives after being diagnosed with JME.

 

Source: verywellhealth.com, Heidi Moawad, MD

A Man With Epilepsy Who Had Part of His Brain Removed No Longer Feels Fear

A Man With Epilepsy Who Had Part of His Brain Removed No Longer Feels Fear

“Fearless” is often used to describe bravery and daring, but have you ever thought about what it would be like to lose all awareness of your fight-or-flight terror response?

Jody Smith can speak from personal experience. Despite the success of the operation to eliminate his epilepsy, he quickly realized that he no longer experienced genuine, primal terror.

At 26, Jody Smith was relieved to get the diagnosis of epilepsy. He was relieved to finally understand the cause of his frequent seizures throughout childhood. Then, at the age of 28, after undergoing extensive surgery in which part of his brain was removed, he made the shocking discovery that he no longer experiences fear.

People often say that being fearless is a good trait, but the truth is that fear is what keeps us alive. So how does Jody handle himself when situations get dicey?

“As an avid hiker, I frequently find myself near cliffs. I still didn’t want to fall, and would still feel tense if I started to slip when scrambling, but I didn’t feel the fear part of that. That’s when I started to experiment a bit with my fear: by intentionally walking towards cliffs to see what my instincts would say.”

While every human being is aware of their own mortality, Smith had allowed this knowledge to overwhelm him. Several times a day, he’d get an overwhelming feeling of fear or panic, but he’d tell himself it was just residual stress from losing his father and brother so early. Finally, a visit to a neurologist was the turning point.

Smith’s malady was easy to diagnose, but getting rid of his crippling seizures and the fear they caused was much harder. So first, the doctors placed probes into Smith’s brain to find the region that triggered his attacks, and then they recommended a terrifying procedure: removing portions of Smith’s temporal lobe, amygdala, and hippocampus. He felt this was his only option moving forward, as there was a greater chance that these seizures would cause long-term brain damage.

But two weeks following surgery, he started exploring the limits of his new abilities on purpose and found them to be rather beneficial.

Smith was out and about in New Jersey when he noticed a gang of males approaching him with the obvious intent to mug him. While in the past, this would have caused Smith to fear to the point of having a seizure, he seemed unfazed and simply walked right through them. His apparent lack of fear “shocked them,” he claimed.

This reaction wasn’t completely out of the blue, as Smith discovered after consulting with his doctors. When he told his neurosurgeon about his extraordinary abilities, the doctor casually replied that he had taken out my amygdala, and this was to be expected.

Since the procedure, he has become considerably more sociable and communicative and no longer reacts with the same degree of revulsion or aversion to somewhat unclean objects.
Jody is doing better than ever before, with the exception of a few niggling memory and concentration problems. In many respects, the quality of life has improved.

As unpleasant as it is, fear serves a useful purpose by keeping us vigilant and ready to take on any threats. In certain circumstances, a healthy dose of fear might even prove beneficial. The sensation of fear might serve as a kind of cautionary signal to keep our guard up. In any event, Smith’s example demonstrates that humans don’t indeed require it to survive.

 

Source: original.newsbreak.com, Photo by Johannes Andersson

Creating an Epilepsy Treatment and Seizure Action Plan

Creating an Epilepsy Treatment and Seizure Action Plan

Knowing What to Do If a Seizure Occurs

An action plan can help a person who has epilepsy and other people around them know what to do in case a seizure happens. Everyone who is diagnosed with epilepsy would benefit from an action plan that includes the proper steps to take when an unexpected seizure occurs.

While some people with epilepsy have triggers that make the seizures more likely, seizures often occur without any predictability. Treatment with antiepileptic drugs (AEDs) and avoidance of triggers are important.

By taking medication, many people with epilepsy have very few seizures, but some may have frequent seizures even with medical treatment. The frequency can range from less than once a year to several per day.

This article will discuss how to create a seizure action plan, how epilepsy is treated, and caring for a loved one with epilepsy.

Treating Epilepsy

Epilepsy treatment involves medical care as well as lifestyle measures. Medication is the most common treatment used to prevent seizures. Still, some people also need surgical procedures or dietary changes if standard medication is ineffective or medication side effects are not tolerable.

Complementary and alternative medicine (CAM) treatments are often promoted for seizure control, but they are ineffective and might be unsafe for some people. Discuss any such remedies with your healthcare provider before using them.

Additionally, lifestyle measures to eliminate potential seizure triggers are highly valuable for people who have epilepsy. Illness, sleep deprivation, and alcohol can trigger seizures, including severe seizures.

Medical Treatment

Medical treatment for epilepsy usually involves taking daily, scheduled AEDs. This requires consistency and discipline. You need to take the medication even if you have not been having seizures. Lack of seizures is an indication that your medication is working. For most people with epilepsy, stopping the medication will trigger a seizure.

In addition to regular daily preventative medication, some people are also given a prescription for anti-epilepsy medication that is to be taken if a seizure occurs or if an aura occurs. An aura is a neurological change that causes symptoms prior to a seizure.

Most people will not benefit from taking medication that is given for an active seizure or an aura. You and your neurologist will have to determine whether you should have a prescription to take if you experience a seizure or an aura.

Other medical interventions involve surgery, and many people who have epilepsy surgery continue to need treatment with AEDs.

Most AEDs have side effects, and it can take some time to determine the ideal dose that controls your seizures with minimal side effects. Do not make changes in your AEDs on your own—discuss your dose, seizure control, and side effects with your neurologist.

Complementary Treatments

In general, complementary treatments are not effective in preventing seizures.

Some people with epilepsy are advised to try a ketogenic diet, which is a highly restrictive, low-carbohydrate, high-fat diet. This does not work for everyone, and you and your neurologist can discuss whether this would be a good option for you.

Identifying and Avoiding Seizure Triggers

If you have epilepsy, there are important lifestyle measures that you need to take, because certain things can trigger a seizure. Triggers include alcohol, sleep deprivation, lack of eating, extreme stress, and medical illness.

Some people also have photosensitive epilepsy, which is a type of epilepsy in which seizures are provoked by rapidly flashing lights. If you have photosensitive epilepsy, you need to take precautions to avoid exposure to this type of light, which can be present in video games and some entertainment.

Less often, people with epilepsy may experience seizures in response to certain smells or sounds. If you have noticed that you have an unusual trigger, be sure to discuss it with your neurologist, who might perform tests to determine exactly what your triggers are and advise you on how to avoid them.

Symptoms of a Seizure

Seizures can cause different symptoms, which may include:

  • Staring into space
  • Eye blinking or eye-rolling
  • Unusual noises
  • Stiffening of the whole body or part of the body
  • Jerking movements
  • Falling down

These symptoms can begin suddenly or may be preceded by dizziness, tiredness, or unusual sensations.

Caring for a Loved One With Epilepsy

If you care for a family member or other loved one with epilepsy, you must become familiar with their medication schedule. This includes knowing which medications they need to take daily for prevention and if there are any medications they need to take when they experience an aura or a seizure.

Most importantly, you must be prepared to take safety precautions if your loved one is having a seizure or it seems like they will have a seizure. Safety precautions involve keeping them away from water, fire, or any sharp objects or potential falls.

You should also have a plan for whom to call or where to take them if they have a prolonged seizure or experience an injury during a seizure.

Why Do You Need an Epilepsy Care Plan?

The key reason for having an epilepsy care plan is to avoid making an emergency decision unexpectedly.

Being prepared in advance also means having guidelines for your care from the neurologist who takes care of your seizures. This type of guidance is based on experience in terms of what works medically and how well people can implement the recommendations into daily life.

When your family, friends, or roommates are aware of the guidance you’ve received from your neurologist, they will be able to handle unexpected or emergency issues safely. And it will also help ease their stress or anxiety about your epilepsy, making them feel more comfortable about your condition.

Creating a Seizure Action Plan (SAP)

There are no widely established or endorsed seizure action plans.4 Each person can work with their neurologist to create one. This would include personalized instructions that you can use and share with others with whom you spend time or who would be in a position to take care of you if you have a seizure.

Research shows that having a seizure action plan is beneficial for people who have epilepsy and for their families.

Who Should Make an SAP?

Anyone who has epilepsy should have a SAP that is created with guidance from a neurologist, and with input and approval from the person who has epilepsy, as well as anyone taking care of them. This ensures that the SAP is medically sound and that it is practical and the people who are involved understand it and can handle it.

What to Include

Currently, there is no well-established uniform epilepsy care plan that’s used for people with epilepsy.

An expert panel meeting in 2021 established the importance of creating a seizure action plan. The panel recommend the following information be included:

  • Circumstances specific to the person (type of seizures, where they are located, type of housing)
  • Names and numbers of emergency contacts, including their healthcare provider, caregivers, and family
  • A description of the individual’s usual signs and symptoms of a seizure and any atypical ones
  • How and when to administer seizure first aid to the person
  • Information on the individual’s prescribed treatment, including step-by-step instructions on how to give it
  • When to start medication and when to contact emergency assistance

Where Is It Kept?

A person who has epilepsy should become familiar with their own epilepsy care plan. Epilepsy care plans should be shared with family members, friends, or roommates who live with a person who has epilepsy. The care plan should also be provided to a child’s teachers, school nurse, coaches, and chaperones for field trips or camps.

The student or parents should discuss the plan to help those individuals understand what needs to be done and answer any questions and address any concerns these individuals have.

Adults may need to share their epilepsy plan with certain people in the workplace who would be expected to call for help if a seizure occurs.

The key components of the care plan may be highlighted for specific individuals so that they can easily understand which parts of the care plan they need to take action on.

For some people with epilepsy, it can be beneficial to wear a bracelet or another identifying device so that emergency care workers will be able to quickly learn of the person’s condition, as well as any allergies.

Some people have severe reactions to AEDs, and this should be made clear so that emergency healthcare providers will quickly know the information when a person who is having a seizure is unable to communicate.

Summary 

If you or your child has epilepsy, it’s important to create a care plan that you and everybody who is involved in taking care of you or your child will be prepared in case a seizure occurs.

While there is no established format for an epilepsy care plan, there are some general principles that you and your neurologist can work on to create guidelines. These include having an understanding of what to do in case a seizure occurs, knowing when to call for help, and knowing if there is any medication that you should take if a seizure occurs.

Additionally, if there are allergies to any anti-seizure medication, this should be indicated on a bracelet or other obvious device in case emergency personnel are called and need to administer medication.

A Word From Verywell 

Living with epilepsy requires planning. While the condition is manageable, sometimes unexpected emergencies occur. Therefore, it’s always good to be prepared and to have a plan of action that guides you and others around you in case an emergency occurs.

You and your neurologist should discuss an emergency action plan for your epilepsy and determine periodically whether it needs to be updated or changed. The emergency action plan includes steps that you may need to take in case you have a seizure.

You will also need to share it with people whom you trust and who are responsible and could potentially put the plan into action in case you are unable to do so.

 

Source: verywellhealth.com, Heidi Moawad, MD

Cornwall biker community unites to give brave 12-year-old Jozef Stasiak the perfect send-off

Cornwall biker community unites to give brave 12-year-old Jozef Stasiak the perfect send-off

It follows a plea from Jozef’s family for as many bikers as possible to join his funeral procession.

The biker community from Cornwall and beyond came out in force this morning to escort a courageous 12-year-old on his final journey. CornwallLive reported earlier this week how the family of Jozef Stasiak put a plea out for as many bikers in Cornwall as possible to ride with him to his funeral.

Jozef and his twin Jacob were born after fighting twin to twin transfusion and were very sick from birth. After a hard fight, their parents Heidi and Dom lost Jacob and now have lost Jozef too.

Jozef faced many complex medical needs throughout his life, from epilepsy to being tube-fed and not being able to see. Over the years he had so many operations the list is endless.

He passed away last week and the family, from Carnon Downs near Truro said they would love for as many bikers as possible to turn up to escort Jozef to his funeral at Budock Church near Falmouth on Christmas Eve.

This morning hundreds of bikers gathered at Carnon Downs and followed the hearse along the route. The spectacle was the perfect send-off to Jozef and was watching by huge crowds along the way.

Jozef’s coffin was transported in an adapted motorbike and side car and gathered bikers revved their engine in tribute to the inspirational young chap.

Everybody in attendance was in agreement that this was the perfect farewell to a brave young boy.

Christian Wicks-Lightfoot wrote on Facebook: “A massive thank you to everyone, all the riders attending, Falmouth football club, the Jennings run marshals, David Saunby and anyone who helped organise and run the day.

“Also a massive thank you to the public for turning out to see the ride and to those patiently waiting in traffic who’ve had there’s journey’s delayed but waited patiently for the procession to go. Warm love to Jozefs family I hope we all did you proud.”

Duane Shaky Bullocke added: “A very sad day, but a marvelous community spirit all pulling together from the fantastic bikers, Falmouth Town Football Club and CJ’s in Budock for the parking, and refreshments for the bikers. I can’t even begin to imagine what the family must be feeling today, but I hope they can take comfort from everyone who cared played a fantastic part. And a big Shout out to Batman, (Daniel) and Robin who lead the procession along the sea front. A massive thank you to Dave Saunby for the organisation of the bikers. God Bless you all.xx”

Jozef, who switched the Christmas lights on in Falmouth in 2019, also loved animals and his parents and siblings would smuggle their smaller pets in to see him in hospital despite it not being allowed, including a rabbit and on one occasion a litter of puppies.

 

Source: cornwalllive.com, Chris Matthews

Life with epilepsy does not have to be a death sentence

Life with epilepsy does not have to be a death sentence

Epilepsy: a word that brought great worry in the early part of 2019 and led me to believe my life was over.

Since the dreadful diagnosis I encouraged myself to thoroughly read and study to know exactly what Epilepsy is after having several bouts of anxiety attacks. I thought it came from dealing with a certain amount of tension at my job, but it became more severe.

I took it to heart when I began experiencing bizarre behavior and started seizing up in front of family members and one near-fatal episode was having an episode behind the wheel. While many thought I was having mental issues and to some point I was, it was a great thing that I was diagnosed and treated in the early stages.

By understanding my ailment, I began reaching out to organizations online such as the Epilepsy Foundation of America, which educates newly-diagnosed patients and offers a variety of resources to help aid this manageable disease. Epilepsy may occur because of a genetic disorder or an acquired brain injury, such as trauma, stroke, or aneurysm.

During a seizure, a person may experience abnormal behavior, unusual sensations, and loss of consciousness. There are few symptoms between seizures, such as uncontrollable jerking and shaking called a “fit,” losing awareness and staring blankly into space, tingling feelings in the arms or legs, and collapsing.

This neurological disease is in the same lineage as Alzheimer’s, Dementia, Multiple Sclerosis, Parkinson disease as well as many stroke patients. My recollection of how severe my condition got was faint as I was in a bed in the intensive care unit at DMC Hospital after having a grand mal seizure.

My mind began to travel back two years earlier as to how I came to be in this critical position and one of the unpleasant things I read about Epilepsy is that it tends to erase one’s memory and that is one thing that comes and goes. Before the grip of the disease got tighter, I was a newlywed, worked two jobs and was very active in my church.

As a result of my sudden decline of health, I ended up moving in with my parents, who eventually placed me in a nursing home temporarily because they felt that was the best choice for health and safety reasons then from the nursing home back to the hospital.

After I was discharged from the hospital in March of 2020, the world seemed strange to me; the rapid loss of memory weighed heavily on me to the point of embarrassment simply because I couldn’t recognize voices and faces, and I also loss a great amount of weight because I simply refused to eat. Soon after, I started reading and doing extensive research once more on Epilepsy and exactly what it is and how it affects a person.

My studies informed me greatly and I found that a few major entertainers such as the late singer-songwriter Prince and rap icon Lil Wayne had their fight with this dreadful disease. I learned empathy for all the men and women, boys, and girls whose lives were drastically changed because of this awful illness.

The team of doctors considered doing a procedure on my brain to see exactly where the seizures were coming from, and they explained to my parents that the outcome wasn’t going to be sure. To be fair and to interview every aspect for my better health, they went home and began to pray.

The doctors elected not to do the procedure and prescribed medication to keep me stable. The curse in living with this appalling ailment is just that—having to live with it, and the blessing in it is there are striking examples of famous people who are highly creative and gifted and took the disease and used it in a positive way. There are many organizations such as Ascension Health and the Epilepsy Foundation of America that can help with the diagnosis and management of the disease.

When an individual is facing a new diagnosis or experiencing ongoing seizures, there are many things to think about. There are thousands of doctors who can discuss both therapeutic and surgical treatment plans for people coping with Epilepsy and the prospects are getting better every day. There are teams of neurologists that are highly qualified and can provide patients with second opinions based on experience and are integrated with a national network of care.

Millions live with this condition undiagnosed, but to stay on track with regular doctor visits and being honest about any abnormal behavior or symptoms could greatly deter the illness from getting out of hand. For the millions of people who are dealing with Epilepsy, great comfort can be found in knowing that it is not a death sentence, help is available, and life indeed can still go on.

 

Source: macombdaily.com, Larry Gore Jr

 

New Port Richey girl with severe form of epilepsy, cerebral palsy gifted castle for Christmas

New Port Richey girl with severe form of epilepsy, cerebral palsy gifted castle for Christmas

When the Make-A-Wish Foundation asked six-year-old Kathryn Handford, of New Port Richey, what she wanted for Christmas, she said a castle. It was a challenging request, even for Make-A-Wish.

However, local construction company Team Farrell heard about the request and jumped in to make her wish come true. For three weeks, Steve Farrell and his team worked in his shop to make a large, wheelchair accessible castle to place on the Handford’s yard.

“I love giving back. The community has been very good to me, and I just love giving back,” said Farrell.

Handford has a rare epilepsy called Lennox-Gastaut syndrome. It’s incurable, incredibly hard to treat with medication and causes numerous seizures a day. She also has cerebral palsy.

“Kathryn is the happiest kid that you’d ever meet. She loves everybody, loves everything. She’s just the best!” said her mom, Alexis.

Hartford’s castle is complete with electricity, a digital fish tank, a keyboard, and a kitchen.

“I hope it really makes her Christmas, and she has many years to enjoy it,” said Farrell.

Alexis said one of her big goals now is to spread awareness about Lennox-Gastaut syndrome.

 

Source: fox13news.com

Study finds disease that children born to parents with diabetes may be more susceptible to than others

Study finds disease that children born to parents with diabetes may be more susceptible to than others

A new study shows that children born to parents with diabetes are more likely to develop autism and behavioral problems.

A study conducted by National Cheng Kung University Hospital in Taiwan and published in the journal Developmental Medicine & Child Neurology found an association between maternal diabetes during pregnancy and a number of neurodevelopmental disorders in children, including autism and attention deficit/hyperactivity disorder (ADHD). ) developmental delay, mental retardation, cerebral palsy and epilepsy.

The findings are based on hundreds of thousands of children whose mothers had either type 1 or type 2 diabetes or gestational diabetes.

Gestational diabetes is a chronic inflammatory disease that can affect the placenta, a round organ that supplies nutrients and oxygen to the fetus.

“These diseases can cause defects in the development of the nervous system,” said study co-author Professor Bao-Ling Kuo of Cheng Kung National University Hospital. They also change genes in newborn cord blood, which contains stem cells, the building blocks of the body.

“Together, these factors suggest that the risk of developing neurodevelopmental disorders in childhood increases with increasing severity of maternal diabetes,” said Professor Koh.

The research team followed 877,233 children born in Taiwan between 2004 and 2008 under the age of 12.

The impact of type 1 diabetes on neurodevelopmental disorders was the largest, followed by type 2 diabetes and then gestational diabetes.

Type 1 diabetes has been associated with an increased risk of stunting, mental retardation, and epilepsy in children. Type 2 diabetes has been associated with an increased risk of autism spectrum disorder, ADHD, developmental delay, mental retardation, cerebral palsy, and epilepsy.

Gestational diabetes has been associated with an increased risk of autism spectrum disorder, ADHD, and developmental delay.

Professor Koh said: “Given the significant burden of diabetes and some neurodevelopmental disorders worldwide, reducing their numbers in children born to mothers with diabetes is an unmet need. While various neurodevelopmental disorders may have the same underlying causes, including genetic and environmental factors, the mechanisms may contribute to different brain conditions.”

Previous research has shown that gestational diabetes increases the risk of heart disease in children.

The development of a child is a complex process, and any change in the mother’s body can have consequences for her child. Hormonal changes that occur during pregnancy can change a woman’s insulin sensitivity and lead to the development of gestational diabetes.

Diabetes of any type is usually accompanied by an inflammatory response of the immune system.

Inflammation has also been observed in the brains of autistic children, suggesting that this may be one of the links between the two conditions.

Professor Koh added: “More research is needed to explore how maternal diabetic conditions may affect brain development in the womb.”

 

Source: asumetech.com, Dianna Clary

Growing Up with Epilepsy: Rose’s Story

Growing Up with Epilepsy: Rose’s Story

Rose’s first seizure was on Valentine’s Day when she was 11 years old. That first seizure was a generalized tonic-clonic seizure. She was taken by ambulance to the hospital, where doctors ordered an EEG. Rose’s mom could tell by the expression on the EEG technologist’s face that something was wrong. Later that night, a call from the pediatrician confirmed that the EEG technologist had seen findings on Rose’s test that were consistent with seizure activity. The doctor recommended that Rose immediately start treatment with an anticonvulsant medication.

Medication Side Effects

The first medication the doctor prescribed made Rose throw up, so after only a week, she was switched to a different drug. The second drug provoked an allergic reaction that caused a skin rash, which is a known side effect of some seizure medications. Often the symptoms are mild and not harmful, but in some cases the rash can progress to a more severe immune reaction called Stevens-Johnson syndrome, which can require hospitalization or even be life threatening. Rose’s rash posed a potential threat to her health, so she was switched to a third medication.

While on the third medication, Rose’s parents, Kathy and Tim, noticed a decline in her academic performance. Rose also received a neuropsychological evaluation and her scores showed a significant enough decline from a previous test to worry her parents and the neuropsychologist. It was suspected that the new medication was affecting her ability to learn, so once again, the family opted to change the medication. The fourth medication had less of an adverse impact on Rose’s cognitive functioning, but her family wasn’t satisfied with the seizure control. Although Rose never had another generalized tonic-clonic seizure, she continued to experience upwards of 20 absence seizures per day, which impacted her learning and social interactions.

Rose explains, “It affected me in school. If I was taking a test, I could have a seizure during some part, and then I’d have to retrace, saying to myself, ‘OK, where am I? What am I doing?’ And then I’d have to start doing the problem that I was presented with all over again. And it affected me socially, because if I was talking to my friends, I could have a seizure, and then I could just completely lose track of what I was saying, and that could be a problem.”

Considering a Dietary Therapy

Because Rose had tried several medications without success, and because her seizures were still impacting her quality of life, her family decided to speak with her doctors about other treatment options. Initially, a dietary therapy called the ketogenic diet was recommended, but for this teenager and her busy family, it didn’t seem like a good fit. Both parents work full time, and Rose and her siblings have active schedules, so the planning and weighing of foods involved in the ketogenic diet felt too restrictive for them.

They chose instead to try a new dietary therapy, called the low glycemic index treatment (LGIT). The LGIT allows a more generous intake of carbohydrates than the ketogenic diet but is restricted to foods that are low in glycemic index, meaning foods that have a relatively low impact on blood glucose levels. For example, Rose cannot eat pasta, most breads, some tropical fruits, or candy because these foods raise blood glucose levels too high. Instead, she eats meats, cheeses, and most vegetables because these foods have a relatively low glycemic index. She doesn’t have to weigh her foods but instead must pay attention to portion size, balancing her intake of carbohydrates throughout the day with adequate amounts of fats and proteins.

The Challenges of a Restricted Diet

While the low glycemic index treatment is less restrictive than the ketogenic diet, the LGIT still has its challenges, especially for a teenager whose peers are loading up on candy bars and pizza. Although Rose is very motivated and receives a lot of support from family and friends, sometimes it can be tough for her to resist the temptation to indulge. When she sticks with the diet, she generally has about one seizure every two weeks. However, going off the diet and eating even a couple of cookies can trigger several seizures in one day.

The diet can also provide challenges to some family routines. Although this is not typical among families using the LGIT, Rose’s entire family tries to eat as much like Rose as possible so that food preparation time doesn’t involve making two different meals. That sometimes eliminates the easy or popular meal option, like their regular Tuesday night pizza dinners. Also, grocery shopping can be more time consuming and expensive, involving trips to multiple stores in search of specific low-carbohydrate items.

Kathy adds, “We started changing what we’d eat, and we started eating really healthy foods, which was positive and negative. Some of the kids really thought it was great, and others didn’t. They were really hurting for those carbs. My son usually has two meals; he has our meal and then his meal.”

The Tradeoff Is Worth It

In spite of the difficulties, the family agrees that the diet is well worth the carbohydrate sacrifice. Rose’s brother and sisters have found that they actually like some of the foods Rose eats, like natural peanut butter, low-carbohydrate pita bread, and a whipped cream and strawberry dessert.

The real benefit of the low glycemic index treatment is improved seizure control with fewer concerns about side effects. Rose now has more energy, and she worries less about seizures. She’s on the honor roll at school and hopes to study musical theater after graduation. She says she used to be anxious about having a seizure during a performance, but now she worries more about remembering her lines and dance steps.

Kathy says, “It’s just nice to see Rose again, because she was always in that fog. And just to see her again and see how she is—that dynamic personality sometimes was subdued, and it’s back. And I’m grateful.”

 

Source: massgeneral.org, MassGeneral Hospital for Children

 

Lanarkshire Epilepsy

Lanarkshire Epilepsy

Lanarkshire Epilepsy is a charity supporting those with epilepsy across North and South Lanarkshire, Scotland 

Help us to raise the funds to keep operating and continue supporting 500 people every year across North and South Lanarkshire!

Last year you all did an amazing job, helping us, along with extra funding from the National Emergencies Trust, to raise over £4,000 to keep Lanarkshire Epilepsy running.

Because of your efforts, we were able to provide specialist support, counselling, and activity groups to those with epilepsy across North and South Lanarkshire.

Summary

Nearly 1 in every 100 people live with epilepsy. This means that 5,000 people across North and South Lanarkshire live with epilepsy, for the past 11 year, have been and still are the only charity  providing frontline support to those with those people and their families. This support is totally free. Over the past year, we’ve still continued to try and provide support to those with epilepsy and their families as best we can, through counselling, activity groups, specialist advice, and days out.

What We Do

Despite those with epilepsy often being marginalised due to ignorance and fear surrounding the condition, we know that those with epilepsy can live full and active lives! We provide specialist support such as counselling, befriending, and opportunities for socialisation through family fun days, outdoor activities, support groups, and other evening events! We’ve recently started offering musical workshops too! These services are proven to best options in addressing the risks of depression, anxiety, and social isolation that so many those with epilepsy experience every day. We’re trying to reduce the ignorance around epilepsy, too, and have started offering epilepsy training to businesses and charities in the region.

Every year we support approximately 500 people. We want to make sure we can continue to support both these and all of those in need who live with this condition. Our work is supported by dedicated volunteers who are the backbone of Lanarkshire Epilepsy.

Our Story

We were formed as a charity in 2011, by Helen MacDonald. After being made redundant from her job with a leading epilepsy charity, she has made it her mission to meet the unmet need of those with epilepsy across North and South Lanarkshire, a blackspot with no other epilepsy charities operating.

In those eleven years, we’ve been making sure that those with epilepsy stay connected, get out and about, and  get specialist advice and support, including counselling. We’ve continued to support our clients during and since the pandemic in every way possible, despite the it being difficult to fundraise at the moment.

Our Plans

We want to make sure we can maintain the help and support we provide to people. With times as tough as they are, we’re putting a special focus on our counselling service.

Despite these plans, the most important thing is keeping the charity operating! Please help us to keep supporting the roughly 5,000 people across North and South Lanarkshire who live with epilepsy every day. Your help can make a real difference! Already with this, we have been able to transform peoples lives. We want to keep reaching out too, helping more and more people with this condition. YOU can help us to do this!

 

Source: crowdfunder.co.uk, Lanarkshire Epilepsy

Lauren’s Epilepsy Story

Lauren’s Epilepsy Story

Epilepsy Surgery Gives Toddler Active, Seizure-Free Life

In 2013, LaDonna and Luther Jenkins of Southfield, were joyful at the birth of their beautiful first-born daughter Lauren. Their baby girl was healthy and thriving.

When Lauren was about 17-months-old, however, there were a few signs that caused some concerns.

“Lauren started to have staring spells and it advanced to involuntary twitching followed by collapsing, which appeared as though she was having a seizure,” says LaDonna.

After taking Lauren to her primary care doctor and a local neurologist, tests revealed that there was a mass on her brain.

“We were terrified. Everything happened so fast and we did not know what to expect,” explains LaDonna.

The local neurologist suggested she be seen at the Children’s Hospital of Michigan. After evaluation from a team of specialists, tests revealed she had a mass on the upper-right side of the brain that was the probable cause of her seizures.

Surgery was recommended and performed by Sandeep Sood M.D., neurosurgeon on staff at the Children’s Hospital of Michigan, in November of 2014.

“Epileptic spasms are devastating to the normal development of the brain. While in many instances, we may not be able to localize the origin of the spasms, in Lauren’s case we were able to localize the seizures to the mass in the temporal lobe,” he says.

The surgery was a success and a biopsy revealed the mass was not malignant.

Lauren surprised the doctors and staff at how quickly she recovered.

“She came home from the hospital after only four days and is doing amazing,” LaDonna says.

She adds that other than the incision from the surgery, you would not know that Lauren had such a serious condition. She is a very happy child who loves to play catch and be active.

“This experience reminds us to truly pay attention to the development of your child. If you notice some abnormalities, do not hesitate to take your child to a doctor for an evaluation.   We are also so thankful to the staff and doctors at the Children’s Hospital of Michigan. They took the time to thoroughly explain what they were doing to treat Lauren and the care was outstanding. We are also thankful to God for allowing us to experience this and see the light at the end of the tunnel. It just makes family that much more important.” LaDonna says.

 

Source: childrensdmc.org

Castlegar woman plans California-to-Florida cycle for epilepsy

Castlegar woman plans California-to-Florida cycle for epilepsy

Castlegar’s Kelly Hall, a member of the Robson Fire Department, is about to set out on an epic journey to gather stories of people with epilepsy and to raise funds for a couple of epilepsy-related charities.

What are you going to be doing?
I’m going to be biking from California to Florida, from Big Sur to St. Augustine. And if I’m early, Key West.

What has prompted you to do that?
I had a friend who biked across Canada two summers ago for traumatic brain injuries. I was inspired by that and decided to do something similar, except I wanted to talk to people along the way about epilepsy, which is something I have. I was diagnosed when I was seven. So it’s quite a personal thing. I hope to create a series of short films and eventually maybe a documentary on the whole thing.

You’ve picked a much better route than cycling across Canada in January. But how did you decide on the start and end points?
It was exactly that. I, at the time at least, was a seasonal employee. So from December to April is usually my time off. That’s what I was focusing on. Where can I bike between January and April?

And you figure that’s how long it will take?
Yes, four months.

Are you going alone or is there any support vehicle with you?
I’ll have a support vehicle for the first day. After that I will be on my own.

Along the way, how will you connect with people with epilepsy?
A surprising number of people have epilepsy, so being out there talking to people, my hope is that some people will be like “Oh, I have epilepsy,” or “I have a friend who has epilepsy.” That said, there’s always the internet. I’ve been connecting with people who have epilepsy. At the very least I will be able to have phone conversations with some of these people. A lot of people are willing to talk.

You’re hoping to film some of them?
Yes, that’s definitely part of it. As well as all the triumphs and tribulations of me suffering!

I understand you feel there is still a lot of stigma around epilepsy to overcome.
I really do think that. I know a lot of people who have epilepsy who hide it. It’s a terrible thing to hear people are still suffering from the idea of being judged by their employers, their friends, even sometimes their families. I hear horror stories from people whose families don’t believe them, despite medical proof that they have epilepsy. There is a lot of stigma. You hear epilepsy and a lot of people think the worst. They think “Oh no, this person is going to fall down and shake.” There’s so many different kinds that that might not even be their form.

What has your own experience been like?
I had a really good support network growing up. I had friends who would be there for me when I had a seizure as a kid and very supportive family. Definitely I’ve suffered from some bad doctors and there have been a few employers along the way that have turned away when they learn I have epilepsy. Or they get scared. I have nocturnal epilepsy, so you’ll never see me have a seizure. But people hear the word and think of one thing. It puts a lot of weight on a life.

Have you done any long-distance cycling before?
I’ve done 100 kilometers in a day a few times. That’s going to be a lot of my days, over 100 kilometers.

But the actual itinerary will be based on whoever you’re meeting?
That’s a big part of it. It will be very much up in the air. I can’t expect people to put their lives on hold for an interview. That is a challenge I’ll be facing. Part of the itinerary is going to be meeting with people and being on time. So that could mean maybe no day of rest, just a day of more biking to meet up with someone. It’s very common complaint [of people with epilepsy] that they can’t drive. So I’ll bike over to your house and talk to you there. Definitely a challenge but I intend to get it done.

When do you begin?
I’ll be heading down to the States on Dec. 28 and getting on the bike on Jan. 1. Kind of a coincidence, but a very convenient one.

How long have you been planning this?
I’ve been thinking about it for two years.

But the stars just lined up now?
Yes. Just considering how I work and the job I do, winter was the best option.

Anything else you’d like to add?
I should add that along the way I’m trying to raise funds for the Centre for Epilepsy and Seizure Education in BC as well as the Defeating Epilepsy Foundation in the US. Anybody who knows anyone with epilepsy, or has experience with epilepsy, I would love to hear from you!

You can find Hall’s website at storytellingseizures.org and her fundraising pages at gofundme.com/storytellingseizures and gofundme.com/rideforepilepsy

 

Source: mykootenaynow.com, Greg Nesteroff

A social worker who helped others needs help after epilepsy diagnosis | Wish List

A social worker who helped others needs help after epilepsy diagnosis | Wish List

The Enquirer and United Way of Greater Cincinnati have joined forces for the 36th year to help families in need with the Wish List program. This is the seventh of eight stories that will appear this month.

The first seizure happened on a September morning last year. Rob Allen awoke next to his wife, Jamille Collins-Allen, whose body was thrashing violently. When she stopped shaking, he wasn’t sure she was breathing.

“I really thought I lost my wife,” said Rob, who is 39.

Jamille, 34, had experienced her first grand mal seizure, and it would not be her last. They have occurred irregularly, always without warning and always less than three months apart. More frequently, she experiences absence seizures, which cause her to blank out and stare into space.

Early this year, Jamille was diagnosed with epilepsy. The impact on Jamille, Rob, and their children – Jazmya, 16, and Michael, 12 – has been profound.

Before the diagnosis, Jamille’s career was devoted to helping people who struggle with addiction, young people in the juvenile court system, people who are homeless, people who are marginalized. She is a licensed chemical dependency counselor and a licensed social worker. She has a bachelor’s degree in psychology and a master’s in social work, both from the University of Cincinnati. The seizures began soon after she earned her master’s.

Jamille was the family’s primary breadwinner, and now her career is in jeopardy. She has not been cleared to drive. She has applied for jobs, “but once they find out about the epilepsy, it’s a no,” she said. And so, she worries. “If I’m disabled, will I never be able to achieve my goal of having my own private practice?”

Rob quit his full-time job as a security guard to care for Jamille. He started a home business making T-shirts, but that provides minimal income.

Since Jamille began taking medication that reduces the frequency of the seizures, Rob has taken on part-time maintenance work. While he’s away, a security camera in their home allows him to check on her. Still, “It’s nerve-wracking leaving her at home,” he said.

The couple looked forward to achieving financial stability after Jamille earned her master’s degree. Having outgrown their rental home, they were saving for a house of their own. Now, “It feels like that dream has been diminished,” Jamille said. “Our savings are gone, and we’re trying to maintain (solvency) while dealing with all this.”

The family was nominated for the Wish List by Ladies of Leadership, a mentoring organization for minority girls. Jazmya has benefited from the program, which is a United Way Black Empowerment Works grantee.

While saving for a down payment on a house, Jamille and Rob postponed many purchases. Their Wish List items include clothing, furniture (including beds and dressers), a washer and dryer and other appliances. Other requested items, such as a workbench, computer and pressure washer, will make it possible for Rob to earn extra money on weekends while someone stays with Jamille.

She still hopes to work again, possibly via virtual visits with clients.

“I’m used to being able to help people,” she said.

But now, it’s her family that needs help.

JAMILLE’S WISH: Clothing for the family, furniture (including beds and dressers), appliances, computer, workbench and pressure washer.

ESTIMATED COST: $5,000

How to help

Donations can be made online at www.uwgc.org/wishlist. You can also mail donations to: United Way of Greater Cincinnati, Attn: Wish List Pledge Processing, P.O. Box 632840, Cincinnati, OH 45263-2840. Please include “Wish List” in the memo line on checks.

 

Source: cincinnati.com, John Johnston

6 Things to Know About Epilepsy and Seizures

6 Things to Know About Epilepsy and Seizures

One in 26 people will have a seizure at some point in their lives. And some – around one or two out of 100 – will be diagnosed with epilepsy. Despite their prevalence, many people are misinformed about seizures and what to do if you or someone around you is experiencing one. “Seizures can be scary,” says neurologist Gabriel Martz, MD, medical director of the Ayer Neuroscience Institute Seizure and Epilepsy Clinic based in Enfield. “And there is a lot of confusion and myth about them. The more people know, the more they are prepared to get the right help if they experience a seizure, and to help others having seizures.” Here are six things you should know about seizures and epilepsy, according to Dr. Martz.

Seizures may look different than you expect.

Sometimes it’s hard to tell when a person is having a seizure. Most often, a person having a seizure may seem confused, stare into space, wander, make unusual movements, or be unable to answer questions or talk.

Seizures are classified into two groups.

There are two primary categories of seizures:

  • Generalized seizures affect both sides of the brain. These can be characterized by rapid blinking or a few seconds of staring into space. Other types of generalized seizures could cause people to cry out, lose consciousness, fall down, or have muscle jerks or spasms.
  • Focal seizures, or “partial seizures,” are located in just one area of the brain. These seizures might only affect a small part of the brain, and cause twitching or a change in sensation such as a strange taste or smell. A person might also become confused or dazed, and be unable to respond to questions or direction for a few minutes. A focal seizure could be followed by a generalized seizure, meaning that the seizure began in one part of the brain, but then spread to the other side as well.

Seizure first aid is easy to give.

Here are some easy steps to follow if someone is having a seizure:

  1. Stay with the person until the seizure ends and he or she is fully awake and responsive. After it ends, help the person sit in a safe place. Once they are alert and able to communicate, tell them what happened in very simple terms.
  2. Comfort the person and speak calmly.
  3. Check to see if the person is wearing a medical bracelet or other emergency information.
  4. Keep yourself and other people calm.
  5. Offer to call a taxi or another person to make sure the person gets home safely.
  6. Call 911 and take note of duration of seizure if the person has never had a seizure before.

People with epilepsy can live full lives.

Some may need to learn new ways to manage daily life however, with the right treatment, safety considerations and support most individuals can live a normal life despite their diagnosis.

Epilepsy has many different causes.

Some common causes include:

  • Traumatic brain injuries
  • Stroke
  • Infection. Certain infections (such as cysticercosis, the leading cause of epilepsy worldwide) can lead to epilepsy
  • Lack of oxygen during birth
  • Birth defects

Diagnosis is key.

As there are many causes of seizures and many types of epilepsy, the first step in getting control is making the right diagnosis. Epilepsy specialists at the Ayer Neuroscience Institute are trained to help diagnose and manage seizures. Using a full range of EEG and brain imaging tests (like MRI), our board-certified epileptologists are able to diagnose:

  • Seizure
  • Epilepsy
  • Fainting
  • Psychogenic event
  • Movement disorder
  • Sleep attack

What can be done?

Although seizure disorders have no cure, you can manage them with the right support. If you or a loved one has experienced a seizure for the first time, the Ayer Neuroscience Institute Comprehensive Epilepsy First Seizure Clinic can offer rapid and accurate diagnosis so that appropriate care can be started as soon as possible. Treatments may include medication, diet changes, surgical intervention and more.

 

Source: hartfordhealthcare.org

Lil Wayne’s History With Epilepsy Explained

Lil Wayne’s History With Epilepsy Explained

Grammy Award-winning rapper Lil Wayne has been regarded as an “elder statesman in the rap game” for more than a decade now, as XXL Mag highlighted. Born Dwayne Michael Carter Jr. on September 27, 1982, in New Orleans, Louisiana, Lil Wayne was living in abject poverty in one of NOLA’s most dangerous neighborhoods, Hollygrove, when he began rapping, which was sometime before he had turned eight (via Biography).

Within a few short years, “Weezy,” as you may think of him, was already performing and recording music professionally. (His first recorded performance was with rapper B.G. on “True Stories,” which dropped in 1993, the year Wayne turned 11.) None of that is to say, however, that in those days, young Lil Wayne was living anything close to a glamorous lifestyle.

He “dealt crack and once ac­cidentally shot himself in the chest,” Rolling Stone revealed in a 2008 profile of the rapper. Ten years later, he revealed to Billboard that it wasn’t exactly an accident; Wayne had been attempting suicide after his mother forbid him to continue rapping. In 2013, the artist also revealed he’d been diagnosed with epilepsy during his childhood (via NPR). Let’s take a look at Lil Wayne’s history with the neurological disorder.

Epilepsy is an umbrella term for all seizure disorders

Some might think of epilepsy as a form of seizure disorder, but it’s actually the umbrella term for all seizure disorders, according to the Epilepsy Foundation, which explains that a diagnosis of epilepsy will be made when someone experiences two unprovoked seizures not “caused by some known and reversible medical condition,” such as alcohol withdrawal. The word itself doesn’t speak to the cause of the seizures or their level of severity, both of which can vary significantly from person to person.

What a “seizure” refers to is an episode in which there is a “sudden surge of electrical activity in the brain,” according to UPMC. This can cause various temporary bodily symptoms and conditions, including dizziness and/or passing out, nausea, heart palpitations, bradycardia, hot flashes, headaches, vision or hearing loss, and visual or auditory hallucinations (via Epilepsy Foundation). A seizure may be the result of a brain injury or illness, or it may also be simply the result of a family tendency. In many cases, the cause of epilepsy remains elusive. And the symptoms that a particular seizure manifests can vary, even from seizure to seizure in one person.

That’s precisely how it is for Lil Wayne. Sometimes he may have a single seizure and then quickly recover (via USA Today). Other times, he’ll experience multiple seizures over a short period of time. Some of his seizures have been mild, but others, life-threatening (via Rap-Up).

Although Lil Wayne has had epilepsy since childhood, he didn’t know it was epilepsy until much later

Lil Wayne first began speaking publicly about his experience and history with epilepsy in 2013, despite that he had his first seizure as a young child (via Rap-Up). The reason was, as Wayne explained during an interview that year with Katie Couric, was a “lack of knowledge.” At the time, Wayne’s mother thought of the seizure as nothing more than a simple fainting spell. To Wayne’s knowledge, he didn’t have another seizure until he became an adult, although Wayne has stated that he is unaware of when he is having a seizure (via MTV).

It was only after Wayne was an adult seeking medical attention for seizures that Wayne came to recognize that his history with epilepsy went back at least as far as that very first fainting spell, which occurred when he was a very young child. This realization came about during a conversation Wayne had with his mother, during which he expressed his bafflement as to why he would be dealing with the “sudden” onset of epilepsy in adulthood. At that point, his mother reminded him about that “fainting spell,” and the two realized that the episode may have been Lil Wayne’s first in what would eventually become a long history of seizures.

Why it’s difficult for Lil Wayne and his medical team to keep accurate track of his seizures

Because Lil Wayne wakes up from his seizures having no recollection of the event, it not only makes it difficult to pinpoint exactly at what point in his childhood his seizures may have begun. It also means that if he were to have a seizure with no one there to observe it, such as in his sleep, he wouldn’t be able to report it to his medical team.

“I don’t know that it happens,” he told MTV’s “RapFix Live” in May 2013 after being treated and released for a seizure a month earlier. “I mean, it’s just a regular day. I go to sleep, I wake up in the hospital. I don’t feel anything. I don’t mind it, I just hope it stops happening.” According to the Epilepsy Society of the UK, it isn’t unusual for someone with epilepsy to experience memory deficits. “If you have lots of seizures, memory problems might happen more often,” the organization explained.

In fact, seizures, themselves can adversely affect memory, both in general and of the episode itself. Epilepsy that affects, or is caused by abnormalities in, the temporal lobe of the brain, is most commonly associated with memory loss. However, Lil Wayne has not publicized the specific details of his epilepsy.

Lil Wayne spent almost a week in the hospital in 2013

Prior to 2013, Lil Wayne had never publicly addressed his history with epilepsy. When he did finally did, it was only after being hospitalized for six days as a result of multiple seizures. When he went public, he chose to give his story first to DJ Felli Fel of hip-hop station, Power 106 (via Rap-Up).

“The bad news is I’m an epileptic. I’m prone to seizures. This isn’t my first, second, third, fourth, fifth, sixth, seventh seizure. I’ve had a bunch of seizures, ya’ll just never hear about them,” Wayne told Fel in the days after he returned home from his nearly-weeklong hospitalization. His stay included time in the intensive care unit (ICU) in connection with his seizures. Although Wayne hadn’t revealed his diagnosis publicly until then, those close to him likely knew. Wayne explained that his seizures were frequent enough that anyone who’s around him for any length of time eventually begins to “know what to do.”

TMZ reported at the time that Wayne was in critical condition. What made this particular seizure episode so worrisome is that after having three seizures in a row, his heart rate dropped down to “like 30%” he told Fel. In addition, Wayne was living in a Los Angeles neighborhood that made a trip to the hospital logistically challenging. “I live in the hills in L.A. … I live all the way at the top, so you know how hard it is getting down those hills. That was what was so scary about it.”

Lil Wayne experienced another seizure after being released from the hospital

Just weeks after an episode involving multiple seizures landed Lil Wayne in intensive care in March 2013, Lil Wayne experienced yet another seizure, according to TMZ. On April 30, 2013, Lil Wayne was taken to Cedars-Sinai Medical Center in Los Angeles after experiencing an isolated seizure. This one appears to have been less medically worrisome than the seizures Wayne had in March, however. Whereas Lil Wayne’s previous hospitalization had lasted for six days and involved multiple seizures, this time Lil Wayne was deemed to be in good enough shape to be released within 24 hours.

The next morning, the rapper reassured his fans, tweeting, “I’m fine. Thank u.” A few days later, Weezy again spoke publicly about his history of epilepsy with MTV News’ “RapFix Live,” revealing that his seizures are as shocking to him as they are to his fans (via USA Today). “I go to sleep and wake up in the hospital,” and while sometimes there’s a headache that might give him a clue as to the possibility that he may have a seizure, that was not the case this time. “The headaches? I didn’t get no headaches or nothing,” he explained.

You might recall older reports of Lil Wayne’s ‘seizure-like symptoms’

It wasn’t until March 2013 that Lil Wayne publicly divulged — for the first time ever — that he had been diagnosed with epilepsy. However, looking back, it appears that the first hints that Lil Wayne may have had a history with the neurological condition were visible in 2012. That was when it was first reported that Wayne had possibly experienced a seizure, although the word “epilepsy” was not mentioned at the time. Specifically, in October 2012, TMZ reported that a private jet transporting Lil Wayne had to make an emergency landing in Texas after the rapper experienced “seizure-like symptoms” mid-flight.

Wayne was briefly hospitalized for treatment. After leaving the hospital and getting back to the business of his day, Wayne experienced another seizure and was sent to another hospital, this time in Louisiana, according to a separate report by TMZ. Although a rep for Lil Wayne allegedly said that Wayne was dealing with was a migraine and dehydration, this wasn’t consistent with the pilot’s report and hospital accounts.

Lil Wayne experienced at least three seizures during summer 2016

In June 2016, Lil Wayne once again experienced a seizure while flying as a passenger on a small private plane. According to TMZ, Lil Wayne was on a cross-country flight that took off from Milwaukee, Wisconsin and was en route to California. Wayne’s plane never did land in California, however, because Wayne experienced a seizure somewhere over Nebraska. Wayne apparently lost consciousness as a result. The pilot made an emergency landing in order to get Wayne medical treatment before continuing on to California.

After the plane landed in Omaha, Nebraska, Wayne refused medical treatment. However, Wayne later confirmed that he’d had an epileptic seizure (via Hip Hop DX). Not more than an hour later, while flying out of Omaha, Lil Wayne had another seizure, forcing the plane to turn around and make an emergency landing back in Omaha. TMZ reported Wayne was then treated by paramedics on the aircraft.

Just one month later, Lil Wayne experienced another seizure — this time mere moments before he was due to take the stage at TAO nightclub in Las Vegas, Nevada during the second weekend of July, TMZ reported in 2016. This seizure was apparently more serious because not only did it lead to the cancellation of the show, but he also was reportedly hospitalized in the ICU.

Lil Wayne missed a show in Las Vegas in 2017 after having two seizures in Chicago

In September 2017, TMZ reported that Lil Wayne had been hospitalized again in connection with his epilepsy. “Multiple sources tell us Wayne was hospitalized Sunday in Chicago after he was found unconscious in his hotel room at the Westin on Michigan Avenue after suffering at least one seizure,” TMZ alleged. “He was rushed to Northwestern Memorial, where we’re told he suffered yet another seizure.” These incidents were confirmed by the Chicago Fire Department (via Chicago Tribune).

According to Variety, it appears Lil Wayne had left the hospital by Monday morning, which would tend to imply that this particular episode of seizures was not as serious as others he’d had in the past. Nevertheless, as a result of these two seizures, Lil Wayne was forced to cancel another show scheduled in Las Vegas, Nevada, this one at Drai’s Nightclub. Wayne’s medical team believed that it was too risky for Wayne to attempt to fly to Vegas, given that he had a history of experiencing seizures while traveling by air (via TMZ).

Did ‘sizzurp’ contribute to Lil Wayne’s propensity toward seizures?

Ever since the public first learned about Lil Wayne’s epilepsy diagnosis, there has been on-and-off speculation as to whether the star’s lifestyle might have contributed to his seizures (via MTV). Wayne acknowledged the rumors in a September 2013 interview with Katie Couric.

During the sitdown, Couric expressed concern to Wayne about his consumption of “sizzurp” (sometimes called “lean” or “double cupping”). Sizzurp is a liquid concoction containing codeine and soda (via Partnership to End Addiction). Wayne told Couric that he had stopped imbibing “the syrup,” as Couric referred to it. However, he opened up about the fact that he had been taking “pain pills” that contained codeine. “So the lack of drinking the codeine the way I did drink it … it was kind of like a reaction of you stopping the drug,” he explained.

According to Dr. Michael Privitera, a professor and the director of the Epilepsy Center at the University of Cincinnati Neuroscience Institute, told MTV that there are multiple reasons that can contribute to epilepsy, including genetics or taking codeine.

Lil Wayne said that he stopped using codeine at the advice of his doctors

A few months after Lil Wayne went public with his epilepsy diagnosis back in 2013, Katie Couric asked him if he was still using codeine. Lil Wayne replied that he “can’t” because the doctors told him it was off-limits due to his history with epilepsy. Since then, when Wayne has had seizures that the public has learned about, Wayne has attributed them to many things, including dehydration, stress, lack of sleep, and overworking (via Rap-Up) but he has never admitted to, and at times had denied, continuing to abuse codeine.

Still, some continue to speculate that Wayne’s seizures in recent years have been caused, or at least, exacerbated by his use of cough syrup, including TMZ, which in 2017 published a series of photos taken of Lil Wayne in which Wayne is hoisting a “double cup,” which is culturally associated with sizzurp (via TMZ). “Lil Wayne continues playing with fire by downing sizzurp, and there’s plenty of visual evidence he’s been doing it regularly for months leading up to his latest seizure,” TMZ alleged in the accompanying story.

That said, Lil Wayne holds no ill will against the site. “That’s what they do,” the rapper told DJ Felli Fel (via Rap-Up). “I can’t be upset at TMZ for doing what they do,” he continued.

Lil Wayne doesn’t always see his condition as a ‘life-changing thing’

Epilepsy is a serious neurological disorder, according to the Mayo Clinic. However, Lil Wayne hasn’t always been forthright about the seriousness of his condition. Wayne and his representatives have been known to post reassuring messages on Twitter after the media reports on a seizure episode. For example, in 2016, after he cancelled a Vegas show following a backstage seizure, Wayne tweeted the next day that this was nothing more than a “false alarm” (via Hip Hop DX).

“I appreciate da prayers and konsern, but I’m good,” he added. It may be that he doesn’t want his fan to worry about him, or that he wishes to circumvent any further discussion about his history with epilepsy. “I don’t mean to sound bad, but it wasn’t no life-changing thing,” he told the magazine Nylon-Guys in late 2014 regarding the seizures he had in 2013 that exposed his epilepsy to the public eye (via Rap-Up). “I shot myself when I was 12. I grew up in Hollygrove [in New Orleans, Louisiana]. I’ve seen way worse.”

However, the rapper did admit the seriousness of his seizures after his nearly week-long hospital stay in 2013. “Basically, I could’ve died, so that is why it was so serious,” he said (via Rap-Up).

Lil Wayne manages his epilepsy with medication

Lil Wayne seldom speaks publicly about the manner in which he and his medical team are managing his epilepsy. What we do know, however, is that after experiencing seizures in 2012 (which Wayne’s camp initially attributed to a migraine and dehydration), Wayne said that he “didn’t want to make a big deal about the whole thing,” but that his “recovery regimen includes seizure medication and plenty of water,” according to MTV. He also said that he was under doctors’ orders to drink “four bottles of water a day,” adding, “I ain’t drinking four water bottles, but everything’s good.”

The following year, when Weezy went public with his epilepsy diagnosis, he spoke about the advice his doctor had given him. “He didn’t tell me to do too much that a human, that we all don’t do anyway,” Lil Wayne said. “Sleep and eat right — that’s about it” (via MTV). And in 2020, he told a Florida judge that he was “taking daily medication for his epilepsy,” according to Tampa Bay Times.

As a celebrity with epilepsy, Lil Wayne is in esteemed company

If Lil Wayne is reluctant to share with the general public the details of his history with epilepsy, it may be because people with epilepsy can feel stigmatized by their condition, as reflected in a 2002 research paper published in the journal of Epilepsy & Behavior. “Though attitudes toward people with epilepsy have improved over the years, for many people with epilepsy, stigma continues to adversely impact their psychological well-being and quality of life,” the paper’s author wrote. “The stigma of epilepsy can be linked to a number of factors, including under-resourced medical services, poor seizure control, and inadequate knowledge of epilepsy.”

Nevertheless, Lil Wayne, who has gone out of his way to reassure his fans that his epilepsy will not interfere with his career, is in good company as there are a number of famous people who are known to have had epilepsy. For example, the 26th President of the U.S., Theodore Roosevelt, contended with epilepsy, according to Healthline. Sadly, Roosevelt felt compelled to downplay his condition as a result of the stigma attached.

The Academy Award-winning actor Danny Glover is another famous and much-admired person who has a history of epilepsy, which began when he was a child. So too is the celebrated singer-songwriter Neil Young, who also has a daughter with the condition. Young wrote about his epilepsy in his memoir, “Waging Heavy Peace” (via Healthline).

 

Source: healthdigest.com, Lauren Cahn

New Epilepsy Disorder & Genetic Cause Found

New Epilepsy Disorder & Genetic Cause Found

Neurodevelopmental disorders (NDD) encompass highly prevalent conditions such as autism and epilepsy, with cognitive disabilities alone affecting 1-3% of the global population. Developmental epileptic encephalopathies (DEE) are NDD characterized by epilepsy and delayed development or loss of developmental skills. Although the prevalence of DEEs remains to be determined, studies estimate that single-gene epilepsies occur in around 1 in 2100 births annually. A recent study from the laboratories of Dr. Hsiao-Tuan Chao, assistant professor at Baylor College of Medicine (BCM) and investigator at the Jan and Dan Duncan Neurological Research Institute (Duncan NRI) at Texas Children’s Hospital, and Dr. Pankaj Agrawal, professor at Harvard Medical School and Boston Children’s Hospital, identified alterations in the Eukaryotic Initiation Factor 4A2 (EIF4A2) gene as the cause of a novel DEE syndrome.

This new discovery, published in the American Journal of Human Genetics, provides the first experimental demonstration of a causative role of alterations impacting EIF4A2 in human disease.

Identifying individuals with a new neurodevelopmental disorder

The study involved an international collaboration that was made possible by a virtual tool called MatchMaker Exchange, which was launched in 2013 to serve as an integrated platform for clinicians and researchers all over the world to exchange phenotypic and genotypic data which greatly accelerates genomic discovery.

“Using this tool, Dr. Anna Duncan, an instructor in Dr. Agrawal’s lab and co-first author of the study, identified about 15 individuals from 14 families who had structural changes in the brain (as observed by MRI imaging) and similar clinical presentations comprising global developmental delays, poor muscle tone, speech impairments, and epilepsy,” Chao said. “They found these individuals carried extremely rare spontaneous mutations in one or both copies of EIF4A2.”

The EIF4A2 gene encodes an ATP-dependent RNA helicase, a protein that is involved in regulating the three-dimensional (3D) structure of a fundamental molecule, the ribonucleic acid (RNA). The EIF4A2 protein is expressed in all tissues and acts as a regulator of protein translation. It belongs to the DEAD-box family – a group of 50 closely-related proteins – many of which regulate protein translation, a fundamental molecular process by which messenger RNAs are converted to their corresponding proteins. Previous studies have implicated EIF4A2 as critical in brain development and its dysfunction has been associated with intellectual disability.

Using fruit flies to understand how mutations in elF4A cause this syndrome

To confirm if these gene variants are responsible for the neurological symptoms seen in these patients, co-first author, Dr. Maimuna Sali Paul, a postdoctoral fellow in the Chao lab, and Dr. Chao carefully examined human EIF4A2 variants and its fruit fly counterpart, elF4A, with which it shares significant sequence similarity.

They identified four variants of EIF4A2 that affected conserved residues in the fly gene eIF4A and were predicted by molecular modeling data to perturb the 3D structure of the human EIF4A and its interaction with the RNA. Dr. Paul found overexpression of these EIF4A2 variants in the fruit fly resulted in a variety of behavioral and developmental defects such as motor defects, and improper development of eyes, wings, and peripheral nervous system organs such as bristles, a clear indication of their toxicity.

Moreover, Dr. Paul leveraged the knowledge that complete loss of eIF4A was lethal at the fruit fly embryonic stages, whereas reducing its levels from specific tissues was lethal in either embryonic or pupal stages, to study the functional consequences of the human EIF4A2 variants. “Most importantly, when we overexpressed the wild-type human EIF4A in the eyes of the flies lacking this gene, we were able to completely ‘rescue’ the pupal lethality and restore the normal lifespan of these flies,” Dr. Paul said. “However, overexpression of one disease-causing variant resulted in a weak/partial rescue while the others were unable to rescue the lethality – a clear indication of the essential role they play during development.”

“Consistent with this study, our lab had previously found that loss of a kinase, EIF2AK2 which regulates downstream protein complexes involved in protein translation also causes similar neurological impairments,” Dr. Chao said. “Thus, our findings in this study underscore the critical role of balanced regulation of protein translation for brain development and maintenance of function in neurons and glia. These findings reveal EIF4A2 as a previously unrecognized cause of a novel developmental epilepsy syndrome.”

 

Source: miragenews.com

RNS for Epilepsy: Everything You Need to Know

RNS for Epilepsy: Everything You Need to Know

Responsive neurostimulation (RNS) is a treatment that may help manage epileptic seizures. Doctors may recommend RNS for epilepsy if medication has not been effective for you.  Doctors may initially use medication to treat epilepsy. However, for some people, medication does not completely stop seizures. This is known as intractable or refractory epilepsy. According to the National Institutes of Health (NIH), this occurs in up to 30–40% of people with epilepsy.

In such cases, other treatment options, such as RNS, may be effective.

This article discusses RNS for epilepsy, including how it works, its benefits, and its effectiveness. It also explains what to expect from the procedure, including costs, possible side effects, and additional care options.

How RNS for epilepsy works

Epileptic seizures are the result of abnormal or uncontrolled electrical activity in the brain. RNS treatment involves placing a battery-powered device called a neurostimulator in the skull that connects to thin leads inside the brain. This manages the brain’s electrical activity.

The neurostimulator does this by monitoring the brain’s electrical activity and responding when it detects abnormal patterns. It then produces short electrical pulses to manage the activity.

Benefits

RNS can be a beneficial treatment. Not only may it be effective at managing seizures, it can also have other advantages, such as:

  • Adjustable: This means your doctor can tailor the RNS settings to the needs of your individual condition.
  • Reversible: RNS implantation is reversible, which means the surgeons can remove the device if they think you do not need it.
  • Painless: After recovery from the surgery, a RNS device should not cause any pain or discomfort.
  • Safe: According to a 2018 study, RNS procedures are safe and well tolerated by people who have them.

Another benefit that RNS may offer is the ability to store the information from the device and learn more about your condition.

If you experience pain or a tingling sensation with RNS for epilepsy, contact your medical team promptly. They may help by adjusting your device.

Effectiveness

Research into the effectiveness of RNS for epilepsy is still ongoing.

However, a 2020 study suggests that RNS therapy effectiveness increased over time as clinicians have learned to optimize its use.

For example, the median rate of reduction of seizures improved from 67 to 74% over the first year of the study to the last follow-up. Additionally, around 35% of participants experienced at least a 90% reduction in seizures, with around 18% of people becoming seizure-free for long periods of time.

A 2020 review of research also suggests that RNS can reduce the risk of experiencing unexpected death due to epilepsy. It may also improve the quality of life and cognitive function of those with epilepsy.

Who may benefit from RNS

If you have epilepsy, your doctor will discuss the possible treatment for your condition and determine if you’re a suitable candidate for RNS. This is because RNS may not be effective for everyone.

The Food and Drug Administration (FDA) has approved RNS treatments for people over the age of 18 years who experience focal seizures due to refractory epilepsy. Focal seizures may also be known as partial seizures. Other candidates for RNS can include adults with seizures that start in two places of the brain, known as two seizure foci.

A neurologist may also recommend RNS therapy if clinicians believe that you would not benefit from brain resection surgery for epilepsy, and treatment with medication is not successful. This may occur if clinicians believe that other surgeries could be unsafe for you or the chances of other surgeries being effective are low.

What to expect from the procedure

If medication is not managing your seizures, your doctor may conduct further diagnostic tests to check if RNS may help you. This can involve imaging scans or EEG monitoring.

If RNS is recommended, you can then undergo surgery using a general anesthetic to place the device. Surgeons will place the neurostimulator just underneath the scalp, which will not be visible to anyone else.

You may then need to stay in the hospital for around 1–2 days while you recover.

After several weeks, you may also need to see your doctor for a follow-up exam. This allows the surgeon to check and program your device. Your medical team may ask you to record your seizures before and after surgery to help identify any improvement after the procedure.

The neurostimulator battery may last around 8 years.

Risks and side effects

Clinicians generally consider RNS to be safe and effective when performed in appropriate candidates.

However, all surgeries carry a risk of side effects and complications. For RNS surgery, these complications may include:

  • pain or swelling at the implant site
  • bleeding
  • slow healing
  • lack of improvement to seizures
  • changes to seizure symptoms
  • infection
  • tissue damage

Some people may experience pain or discomfort during and/or after the procedure. Discomfort may also occur while programming the device.

Cost

RNS procedures can be expensive. Total costs for the procedure and related care can vary, with some estimating that the average healthcare costs for any epilepsy surgery are between $40,000–60,000.

However, a 2021 model of costs suggests that long-term RNS may be cost effective and help save money when compared with using medications on their own. Researchers theorize that this may help save up to $46,596 in certain conditions.

Some insurance providers may cover costs of RNS for epilepsy. Contact your insurance provider to see if RNS therapy could be covered for you.

Living with an RNS implant

After the surgery, your doctor will provide you with a remote monitor and a special magnet. This can help you collect data from the RNS and review the information with your doctor.

To collect this data, the magnet must be swiped over where the RNS sits in the head. Your doctor may ask you to do this during a seizure to further help the doctor tailor the RNS settings to your condition.

The magnet can also temporarily stop the stimulation from the RNS implant. Contact your doctor for advice regarding when to stop the stimulation.

You will also have regular check-ups with your doctor or medical team to monitor how the device is working and update its settings if necessary.

Eventually, you may need to replace the battery in the RNS implant.

Certain medical procedures can interfere with an RNS device and may cause serious complications or be fatal. These procedures can include:

  • MRI
  • diathermy
  • electroconvulsive therapy
  • transcranial magnetic stimulation

Do not undergo any of these procedures. Always inform your medical team that you have an RNS implant while seeking any treatment.

Alternative treatment options

If RNS is not suitable or desirable for you, other treatment options may be available.

These treatment options can include:

  • vagus nerve stimulation and deep brain stimulation, which use similar nerve stimulation approaches
  • brain surgery
  • complementary therapies, such as ketogenic diets

Summary

RNS therapy can be an effective treatment for those with epilepsy who do not see improvements with medication therapy. To carry out the treatment, a surgeon will place an RNS implant in the skull. This implant can then help monitor and manage the electrical activity that causes epileptic seizures.

RNS for epilepsy can be effective and safe, with many people experiencing a decrease in seizure episodes. However, RNS therapy may not be suitable for everyone, and all surgeries can present a risk of complications.

Contact your doctor if you have questions about RNS for epilepsy or your current epilepsy treatment.

 

Source: healthgrades.com, Kristina Lavarone

Food And Epilepsy: Myths And Facts

Food And Epilepsy: Myths And Facts

There are lots of myths surrounding food and epilepsy. Read on to know what is true and what is false.

A balanced diet is a key to a healthy body and a sharp mind. This fact applies to all kids but becomes even more pertinent for a child with epilepsy. A healthy balanced diet ensures the delivery of all the essential nutrients and micronutrients in adequate quantities that are essential for optimal brain function.

Unfortunately, there are lots of myths surrounding food and epilepsy with the commonest one being that certain foods or spices can trigger seizures. Another myth we encounter is that certain foods can cure epilepsy. These associations are completely unproven, says Dr Pradnya Gadgil, Senior Consultant, Paediatric Neurology and Complex Epilepsy, NH SRCC Children’s Hospital, Mumbai, India.

Poor dietary habits can affect seizure control

Dr Gadgil, however, states that poor dietary habits can contribute to overall ill health as well as adversely affect seizure control. Listed below are a few poor dietary habits that is talking about:

  • Missing meals or irregular food intake
  • Excessive use of stimulants like tea, and coffee, excessive sugar intake, excess salt.
  • Excessive intake of foods containing artificial food colours, preservatives, additives.

Nutrient deficiencies can cause seizures

According to Dr Gadgil, sometimes nutrient deficiencies or imbalances cause seizures. She says, “It is important to recognise these as they are an easily treatable cause of seizures e.g. calcium deficiency in small babies with hypocalcemic seizures, low sugars in diabetic patients, etc. Rare conditions like biotin deficiency, pyridoxine deficiency, etc., secondary to genetic metabolic abnormalities are well-recognised causes of seizures.”

Foods that people with epilepsy should avoid

Some evidence suggests that certain foods especially caffeinated drinks and alcohol may react with anti-epileptic medications making them less effective, thereby increasing the chance of breakthrough seizures even in patients with well-controlled epilepsies, says Dr Gadgil.

Role of special diets in the treatment of epilepsy

This is another question often asked when it comes to the treatment of epilepsy, Dr Gadgil points out.

She adds, “The ketogenic diet and its variations have long been used effectively to control seizures. However, misunderstandings abound. Ideally, these diets should be started only at the advice of an epileptologist. The diet does not replace first- and second-line anti-seizure medications- in fact- they serve as an adjunct. The diet plans must be carefully designed by an expert dietitian. There has to be close surveillance of the side effects of the diets.”

In conclusion, Dr Gadgil says “following a healthy balanced diet and consuming other foods in moderation can help patients avoid the diet’s effect on seizures.”

 

Source: thehealthsite.com, Longjam Dineshwori

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