Archive for category Epilepsy

[WEB SITE] Epilepsy News: February 2018 – THE EPILEPTIC MAN

EPILEPSY NEWS: FEBRUARY 2018

With just 28 days in February, this month’s Epilepsy News is with us a little earlier than usual.

If a significant event pops up in the final seven days of February this year, then I’ll try and talk about it in next month’s edition as well. But with topics of technology, treatment, campaigning and design involved today, I’ve got plenty of interesting stories to tell you about what’s been happening around the world with epilepsy.

Seizure Prediction is Looking More Likely

Researchers in Melbourne recently became more excited about the advancement of new, seizure predicting technology. By recognising patterns in the brains electrical activity, algorithms have been trained to pre-empt epileptic seizures.

At St. Vincent’s Hospital at the University of Melbourne, senior researcher Dean Freestone, PhD, and chair of medicine Mark J. Cook, MD, have now launched a company called Seer Medical. Here the new technology can hopefully be pursued with patients implanted with it later this year.

Likely to be contained in a chip inside a wearable device like a wristband or bracelet, the new forecasting technology would probably work best for people who typically have seizures about once a week.

For me, this new technology sounds interesting. I have a seizure approximately once every two weeks and reckon it could become so useful for myself. However, if people have seizures once every hour, or if the seizures are too infrequent, researchers have stated that it is difficult to train the algorithms.

But by knowing when seizures are coming along, I can understand why people who have tested this technology have felt more comfortable doing everyday activities. After being tested, people also claimed to benefit from improved sleep and decision making too.

Knowing when my seizures were due would be a handy tool for me and the people who have to keep an eye on me when they occur. It’d give me the chance to put myself in safer places beforehand, and even find ways to prevent them.

Being designed in Australia, I only hope we don’t have to wait too long before we have some form of the technology made available in the UK.

Genomics Set to Speed Up Epilepsy Diagnosis

Right now, epilepsy diagnosis can be completed with the use of various scans, including EEGs, CTs and MRIs. Although they work, these scans don’t give doctors much information regarding the type of issues their patients will be facing with their epilepsy.

MRI Scan

However, genomics interpretation software company Congenica has now teamed up with FutureNeuro, an SFI Research Centre for Chronic and Rare Neurological Diseases. This new partnership is working on a programme that will give doctors a much easier way to make a diagnosis of genetic epilepsy.

With the use of genomics, doctors may now be able to get a better and quicker view of the many challenging possibilities of epilepsy. This would lead a way to start individualising treatment and prognosis in the clinic. All in all, the earlier diagnosis would see positive impacts on the patient and their family.

Speaking recently, Congenica’s CEO, Dr David Atkins said: “We are excited by what this collaboration could mean for patients and their families around the world. The types of genetic mutations that this project will focus on are thought to be at the root of as much as 40 per cent of childhood epilepsy.”

I don’t suffer from genetic epilepsy, but wish this new partnership well in finding what they need to bring better diagnosis to children who may gather the condition through their mother, father and other family members.

An Update on Alfie

Back in September, I told the story of Alfie Dingley, a 5-year-old with epilepsy whose parents were due to take him to the Netherlands so he could receive cannabis oil treatment to stop his daily seizures.

After about five months, Alfie has now returned because he has no health insurance in another country. Now his parents are back in the UK, they hold a great passion for gathering their son a medical cannabis licence. However, their recent request was denied by the Home Office, who said the drug “cannot be practically prescribed, administered or supplied to the public”.

Home Secretary Amber Rudd
MPs have called for Home Secretary Amber Rudd to issue a medical cannabis licence

Alfie’s mother, Hannah Deacon, is clearly very much upset by the response. Right now, Alfie suffers from up to 30 violent seizures a day, but when receiving treatment in the Netherlands, he went for 24 days without a single attack.

Speaking on BBC News, Hannah told presenters that she wanted to speak to MP’s Amber Rudd and Jeremy Hunt, saying: ‘I want them to know my reality with my son in A&E every week, watching him have a seizure, watching him go purple; wishing that he will live.”

I know this isn’t positive news to tell my readers about. But it is another clear reason that I wish to raise awareness of epilepsy, and speak out for people with difficult health conditions.

Medical cannabis won’t just be useful for Alfie – it was recently made more legal to use in various states across the USA. It doesn’t just help people with epilepsy and will be helpful for many other people with various health problems in this country as well.

Avocado Diet Helps Manage Epilepsy

After struggling to stop up to sixty seizures occurring every day with conventional medication, five-year-old Leafy Liu now only suffers around four seizures a year. Her patterns have improved greatly with her new ketogenic diet, which has had her parents spending £1,200 and Leafy eating approximately 3000 avocados – at least two a day for the last four years.

Avocados
Although avocados can be eaten in moderation, key fruits to avoid include apples, oranges and bananas

The ketogenic diet was discovered by her parents Justin and Claire after their daughter first started having seizures when she was six months old. They were scared by her first seizure, which lasted for 25 minutes and led to her being taken to the hospital.

As time continued, Leafy’s seizures became more frequent, with 60 minor seizures sometimes occurring in a day, and her longest seizure lasting for around 45 minutes. Because of the side-effects involved with anti-epileptic drugs, her parents searched online for an alternative solution to their daughter’s issues.

Here they came across the ketogenic diet and were quickly stunned by how effective it was. High in fat and low in carbohydrates, burning fat for fuel is said to be better for the brain. Within two days, they started to see big changes occur, and Leafy moved quickly from having up to two major seizures a week to having just one seizure a month.

Although a lot of fruits are avoided with the ketogenic diet, it seems to have started their daughter Leafy’s passion for avocados.

Speaking from their home town of Loughborough, father Justin said “The avocado has been a real staple; she absolutely adored it from the word go.

“We’ve spent a fortune buying them, but it’s been worth it. They are wonderful.

“It’s amazing. When I see what other children are eating for lunch, and compare it with what Leafy has, I think it’s so much healthier this way.

“When she was at her worst, I could never have envisioned that avocado would be the thing to help her through, but that’s how it’s turned out.

“We’re just so thankful that we discovered the diet when we did because it’s changed all of our lives for the better.”

Teenager’s Poster Keeps an Eye on Invisible Conditions

Out of all the individuals this month, I’ve been most impressed by the poster design skills of 18-year-old Thomas Bell, who suffers from epilepsy, dyspraxia and hemiplegic migraine. Tom was born with epilepsy, but after having to live with all of his invisible health conditions, he’s designed his poster campaign through Fixers, the national charity that looks to give young people a voice.

As a whole, Tom intends to shine a light on invisible conditions. Although better controlled now, Tom used to have to manage migraines as often as twice a month. Living with epilepsy, Tom was bullied by his peers in school, who used to flash lights in his eyes and say “I want to see you have a fit.”

He believes the reason for them doing this was because his conditions are invisible, and they didn’t take them seriously. These frustrating times have led Tom to create his poster, which involves a cartoon of himself explaining epilepsy, dyspraxia, hemiplegic migraines, and gives further information about why he’s designed it.

The poster’s heading states ‘Not all conditions are visible. If you could see my pain maybe you’d understand’.

Since they’ve been created by Fixers, Tom has said that he’s happy with how the posters have turned out, and now wants to campaign with them in local schools to drive home the message.

Click here to take a look at it on Flickr.

Analysis

This month has seen the inclusion of mainly positive news stories. People and companies mentioned have impressed me with the way they’ve exploited their efforts to improve epilepsy in different ways.

Right now, I only hope to keep an eye on the projects that are currently being developed, so I can take advantage when they come along to be beneficial to myself and others in the future. As well as that, the story of Alfie Dingley’s difficult life makes me want to play a part in getting cannabis oil treatment legalised in the UK.

The poster brought forward by Thomas Bell shows that he’s got similar interests to me too. He’s only 18, and I don’t want to push him into any career movement – but if I can give him a helping hand with his campaign, I wouldn’t turn it down.

 

via Epilepsy News: February 2018

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[WEB SITE] Minimally Invasive Brain Implant Lessens Seizures

Treatment option for individuals living with refractory epilepsy now available at UC San Diego Health

UC San Diego Health now offers patients with epilepsy another non-pharmacological way to treat seizures. For the more than one million individuals who live with uncontrolled seizures despite taking medications, UC San Diego Health recently began offering the first and only FDA-approved brain-responsive neurostimulation (RNS) system designed for the treatment of refractory epilepsy.

Jerry Shih

Jerry J. Shih, MD, epileptologist and director of the Comprehensive Epilepsy Center at UC San Diego Health.

“This device is approved for use in patients who have seizures coming from up to two different locations in the brain,” said Jerry J. Shih, MD, epileptologist and director of the Comprehensive Epilepsy Center at UC San Diego Health. “When unusual brain activity is detected, the neurostimulation device sends brief painless electrical pulses with the goal of disrupting the emerging seizure and to normalize brain waves.”

Shih added, “This device provides another treatment option for patients who were previously not candidates for traditional surgery because the seizure focus was in or near important brain structures controlling memory, language or movement.”

“In clinical trials, patients treated with this device experienced substantial seizure reductions in the first year that continued to improve over time,” said Sharona Ben-Haim, MD, neurosurgeon at UC San Diego Health. “The device continuously monitors and detects the patient’s unique brain activity, allowing us to personalize treatment for each individual.”

Epilepsy is a neurological condition in which patients experience seizures, sudden surges of electrical activity in the brain. Symptoms range from brief staring spells to uncontrollable limb movements. About one in 26 people in the United States will develop a seizure disorder. Treatment with medications can control seizures for 60 to 65 percent of patients, but 35 to 40 percent of patients continue to have seizures, affecting their quality of life.

Sharona Ben-Haim

Sharona Ben-Haim, MD, neurosurgeon at UC San Diego Health.

Called the RNS System, the device is the first and only closed-loop, brain-responsive neuromodulation system. The neurostimulation system consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. The system comes with a remote monitor that patients use at home to wirelessly collect information from the neurostimulator and then transfer it to a patient data management system.

The patient’s neurologist can log into this system at any time to review accurate, ongoing information about the patient’s seizure activity and treatment progress. This helps physicians learn more about their patients’ seizures and improves patient care.

The RNS System was developed by NeuroPace, Inc. in Mountain View, CA. The system was approved by the FDA in November 2013. More than 1,300 patients have received the device nationally.

The Comprehensive Epilepsy Center at the UC San Diego Health Neurological Institute is the only nationally designated Level 4 Epilepsy Center in the region. It offers the latest technological advances in diagnostics, medical therapies, surgical procedures and clinical trials.

The epilepsy team includes epileptologists, neuropsychologists, neuroradiologists, epilepsy neurosurgeons, EEG technologists, clinical nurse specialists, and researchers.

To learn more about epilepsy treatment options at UC San Diego Health, please visit health.ucsd.edu/specialties/neuro/specialty-programs/epilepsy-center or call 858-657-7000.

 

via Minimally Invasive Brain Implant Lessens Seizures

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[Abstract] Do neurologists around the world agree when diagnosing epilepsy? – Results of an international EpiNet study

Highlights

189 Physicians assessed the same 30 case scenarios.

Agreement was good when epileptologists and neurologists diagnosed epilepsy.

Agreement was fair-moderate for seizure type and aetiology based on history alone.

Agreement improved significantly when results of investigations were included.

Agreement was better for epileptologists than neurologists interested in epilepsy.

Abstract

Objective

Previous studies have shown moderate agreement between physicians when diagnosing epilepsy, but have included small numbers. The EpiNet study group was established to undertake multicentre clinical trials in epilepsy. Before commencing trials, we wanted to determine levels of agreement between physicians from different countries and different health systems when diagnosing epilepsy, specific seizure types and etiologies.

Methods

30 Case scenarios describing six children and 24 adults with paroxysmal events (21 epileptic seizures, nine non-epileptic attacks) were presented to physicians with an interest in epilepsy. Physicians were asked how likely was a diagnosis of epilepsy; if seizures were generalised or focal; and the likely etiology. For 23 cases, clinical information was presented in Step 1, and investigations in Step 2.

Results

189 Participants from 36 countries completed the 30 cases. Levels of agreement were determined for 154 participants who provided details regarding their clinical experience. There was substantial agreement for diagnosis of epilepsy (kappa = 0.61); agreement was fair to moderate for seizure type(s) (kappa = 0.40) and etiology (kappa = 0.41). For 23 cases with two steps, agreement increased from step 1 to step 2 for diagnosis of epilepsy (kappa 0.56–0.70), seizure type(s) (kappa 0.38–0.52), and etiology (kappa 0.38–0.47). Agreement was better for 53 epileptologists (diagnosis of epilepsy, kappa = 0.66) than 56 neurologists with a special interest in epilepsy (kappa = 0.58). Levels of agreement differed slightly between physicians practicing in different parts of the world, between child and adult neurologists, and according to one’s experience with epilepsy.

Conclusion

Although there is substantial agreement when epileptologists diagnose epilepsy, there is less agreement for diagnoses of seizure types and etiology. Further education of physicians regarding semiology of different seizure types is required. Differences in approach to diagnosis, both between physicians and between countries, could impact negatively on clinical trials of anti-epileptic drugs.

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via Do neurologists around the world agree when diagnosing epilepsy? – Results of an international EpiNet study – ScienceDirect

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[WEB SITE] Medication Adherence Key to Epilepsy Treatment

In assessing the effectiveness of prescribed medication there is a strong emphasis on the ability of the patient to adhere to the regime recommended by the clinician. For individuals with epilepsy, adherence to medication is crucial in preventing or minimizing seizures and their cumulative impact on everyday life. Non-adherence to antiepileptic drugs (AEDs) can result in breakthrough seizures many months or years after a previous episode and can have serious repercussions on an individual’s perceived quality of life. Reasons for non-adherence are complex and multilayered. Patients can accidentally fail to adhere through forgetfulness, misunderstanding, or uncertainty about clinician’s recommendations, or intentionally due to their own expectations of treatment, side-effects, and lifestyle choice.

Adherence in epilepsy

Adherence is acting in accordance with advice, recommendations or instruction. Ways that adherence can be optimized;

  1. Educating individuals and their families and carers in understanding of their condition and the rationale of treatment, reducing the stigma associated with the conditions.
  2. Using simple medication regimes.
  3. Positive relationships between healthcare professionals, the individual with epilepsy and their family and /or carers.
  4. Other measures are; manual telephones follow up, home visits, special reminders, regular appointments/ refill reminders.

While failing to adhere to treatment plans can adversely affect individuals with any general medical condition, Non- adherence to anti-epileptic drugs results to increased risk of status epilepticus (prolonged seizures) resulting into brain damage, SUDEP, risk of injuries, increase rates of admission to hospital due prolonged seizures. The consequences of not taking medication can be more immediate with epilepsy.​

Epilepsy as a chronic condition relies heavily on adherence to medical advice in order to maximize an individual’s quality of life by controlling seizures more effectively while avoiding unwanted side-effects. Treatment of those diagnosed with epilepsy the vast majorities are treated with AEDs and approximately 70% can become seizure-free once the most effective regime is followed.

Monotherapy is viewed as the initial and preferential option for treating epilepsy, the choice of drug depending on seizure type and effectiveness of the drug balanced against possible side-effects. It is difficult to find estimates of how many people are on monotherapy or polytherapy at any one point in time.

However, in one of the cases I encountered that of Sarafina Muthoni from Banana, Kiambu County, she was diagnosed with Epilepsy at a very young age in her primary school days. With no history of such a condition in her family, it got everybody thinking what could have gone wrong with their lovely daughter. After days of trying to figure out, the family had to adapt to reality of their daughter living with Epilepsy. She was lucky to have very supportive parents ready to see her through the long journey of treating the condition. The motivation and support from her loved ones to access medication improved her status by far as she continued to adhere to the prescribed treatment. Unfortunately, the support didn’t last long and the burden of continuing with treatment squarely relied on her. This adversely contributed to the beginning of non-adherence to medication for lack of funds to buy drugs. Not only were finances a challenge but also finding a good hospital to comply was a problem.

Muthoni had to live with the sad reality of pain every time she experienced a seizure. Pain which she clearly knew with access to medication the situation could by far be controlled. At the very worse of her situation she found help. Cheshire Disability Services Kenya (CDSK) a Non-Governmental Organization in Kenya whose objective is to empower an inclusive society of persons with disability and develop their full potential to lead a quality life, in partnership with Kenya Association of People with Epilepsy (KAWE) came for Muthonis’ rescue.

Under CDSK’s program to help Epilepsy patients’ access medication and ensure compliance, Muthoni benefited and today she leads a life full of potential and energy as she explores her skills as a beauty and hair stylist.

As we celebrate International Epilepsy Day on Feb 12th 2018, themed on “Life is beautiful”, Muthoni’s story is a highlight of what beauty is all about. Hers’ is just but one of the many inspiring stories to celebrate during this season of Epilepsy Awareness.

Managing Adherence

Adherence to medication regardless of medical condition remains an important problem in treatment. Factors that have been discussed here – side-effects, drug regime, family support, impact on everyday life, relationship with the clinician – are unlikely to be the only predictors of adherence. While adherence to treatment within the context of epilepsy has been the focus of this review, these factors can equally be applied to various chronic conditions.

Assessment of adherence should be a routine part of management of epilepsy. Further recognition and support should be given to patients who have poor seizure control since they are more likely to be more anxious and have unhelpful illness and treatment beliefs.

Finally, patients may be fully aware of the importance of taking AED medication and the benefits gained by altering their lifestyle choices in order to prevent seizures, but will make a decision about the degree to which they follow advice. Patients only have a small amount of time in contact with the clinician in their “patient role”, after which they return to the practicalities of their everyday routine where their adherence fluctuates based on how they feel their medication affects their quality of life.

Strategies to manage adherence originate from different perspectives. While the medical model may advocate less complex drug regimes, the use of measured pill containers, and minimization of side-effects, the psychosocial model analyzes non-adherence in terms of patient attitudes to medication, stigma, family and peer influences, and ability to manage self care. Neither model can adequately improve adherence independently. Perhaps the best approach is to offer a “menu” of adherence-enhancing strategies. However, what is increasingly clear from both models is that total adherence is an unrealistic goal. The emphasis has shifted away from total adherence towards a compromise with both patient and clinician involved in a joint process of treatment negotiation and decision-making in order to achieve the best outcome for the individual.

 

via Medication Adherence Key to Epilepsy Treatment : Evewoman – The Standard

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[WEB SITE] AEDs: Which Work Best as Monotherapy in Epilepsy? – Neurology Times

Which antiepileptic drugs (AEDs) are best as monotherapy? Before the updated Cochrane review, first-line therapy in adults and children with partial onset seizures was with carbamazepine or lamotrigine. And first-line therapy for generalized seizure onset was with sodium valproate.

©Chaikom/ Shutterstock.com

  • 60%-70% of people with epilepsy reach remission from seizures shortly after starting AED treatment. Most are treated with AED monotherapy. The National Institute for Health and Care Excellence (NICE) guidelines in the UK recommend carbamazepine or lamotrigine as first-line-therapy in adults and children with partial onset seizures and sodium valproate as first-line for generalized onset seizures. A 2007 network meta-analysis of AED monotherapy generally agreed with these recommendations.[1]

     

  • The Cochrane Review of AED monotherapy, which updates previous meta-analysis with studies published since 2007, adds levetiracetam and zonisamide.[2]

    ©xpixel/ Shutterstock.com

  • Individual participant data (IPD) approach were used; considered gold standard for time-to-event pooled network meta-analysis. Combined IPD data from 12,391 people in 36 studies and compared 10 AEDS: carbamazepine, phenytoin, sodium valproate, phenobarbitone, oxcarbazepine, lamotrigine, gabapentin, topiramate, levetiracetam, zonisamide. ooled data from trials that did head-to-head comparisons were analyzed; a second analysis combined all data from trials to compare drugs that had not been previously compared.

  • For partial seizures, levetiracetam was found to be significantly better than carbamazepine and lamotrigine. Lamotrigine was significantly better than all other AEDs (except levetiracetam). And carbamazepine was significantly better than gabapentin and phenobarbitone. For generalized onset seizures, valproate was significantly better than carbamazepine, topiramate and phenobarbitone. For both partial and generalized onset seizures: phenobarbitone, the earliest licensed treatment, performed worse in terms of treatment failure than all other treatments.

    ©Chaikom/ Shutterstock.com

  • There were few notable differences for partial or generalized seizure types, except fpr 12-month remission: Carbamazepine was significantly better than levetiracetam for partial seizures; and 6-month remission: Sodium valproate was significantly better than lamotrigine for generalized seizures. Regarding time to bot partial and generalized seizures: the oldest AEDs (phenytoin and phenobarbitone) were generally better than newer AEDs. The most commonly reported adverse events across all drugs: drowsiness/fatigue, headache/migraine, GI disturbances, dizziness/faintness, rash/skin disorders.

  • IPD data were available for just 69% of total participants from 47% of eligible trials, leaving out 31% of eligible participants. Methodological inadequacies in some trials could have biased results

  • 1. Phenobarbitone and phenytoin are better for seizure control, but at the expense of earlier treatment failure. 2. Carbamazepine and lamotrigine are suitable as first-line monotherapy for partial onset seizures; levetiracetam may be a suitable alternative. 3. Sodium valproate is suitable as first-line monotherapy for generalized seizures; lamotrigine and levetiracetam may be suitable alternatives, especially for women of child-bearing age given the potential teratogenicity of sodium valproate 4. Zonisamide may effective in partial onset seizures: evidence is limited and more research is needed.

1. Tudur Smith C, Marson AG, Chadwick DW, Williamson PR. Multiple treatment comparisons in epilepsy monotherapy trials. Trials. 2007;5(8):34
2. Nevitt SJ, Sudell M, Weston J, Tudur Smith C, Marson AG. Antiepileptic drug monotherapy for epilepsy: a network meta-analysis of individual participant data. Cochrane Database of Systematic Reviews. 2017, Issue 6. Art. No. CD011412.

©Chaikom/ Shutterstock.com

Which AEDs work best as monotherapy?

A new Cochrane review scrutinizes the efficacy and tolerability of various agents.

 

via AEDs: Which Work Best as Monotherapy in Epilepsy? | Neurology Times

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[WEB SITE] Should I tell my employer I have epilepsy?

This National Epilepsy Week, we discuss whether you should tell a prospective or current employer if you have epilepsy.

Job interviews are daunting, especially if you’ve really set your heart on a position.

When applying for certain jobs, you’re required to disclose information about yourself, but should it include your epilepsy?

One may think that it’s good for employers to know all your important medical information, but do you really have to – and when is a good time to tell them?

Should I or should I not disclose?

Marina Clarke, National Director for Epilepsy South Africa (ESA), told Health24 that it will always be your choice as to whether or not you want to disclose your condition, but, as always, there are pros and cons to disclosure.

“Employees who disclose may become victims of stigma and discrimination, often the result of insufficient knowledge about the condition.

“Disclosing epilepsy to your employer will positively impact on the BBBEE rating, as persons with epilepsy are considered disabled in terms of the definition in the Employment Equity Act.

“It’s risky not to disclose, as a seizure might occur at work and your employer or colleagues will not know how to deal with this,” said Clarke.

 

national epilepsy week disclose condition to emplo

 

Defeating discrimination

While employing people who have disabilities may improve a company’s BBBEE rating, many employers may shy away from hiring someone with a disability because they may think of them more as a liability than an asset.

Ingrid Daniels, Director of Cape Mental Health, told Health24 they recommend that an individual discloses any medical condition once the job offer has been made.

Daniels said, “This will ensure there is no discrimination against the applicant, but that the employer – once the offer is made – can consider reasonable accommodation measures within the workplace.

“A similar recommendation would be made in the case of epilepsy. It is, however, important that the applicant is given the opportunity to discuss their condition to ensure that protective measures and reasonable accommodation measures are in place.”

In certain cases there are positions, such as driving or operating hazardous machinery, which aren’t suitable for people with epilepsy due risks for the applicant and the company. This isn’t classified as discrimination.

When it isn’t discrimination

Justene Smith, a disability expert at equity solutions company, Progression, told Health24 that there are circumstances where prospective employers are within their rights to exclude someone from a role with legislated exclusion or clearly assessed risk.

Smith said: “If a person discloses epilepsy and has applied for a role, for example, as a scaffolder or someone that will need to work at heights, then it may be fair to decline this person based on assessed risk.

“It is important, however, to make sure that the assessor of the risk is a person qualified to do this and that the risk assessment has formally been documented to clearly stipulate the assessed risks.”

Daniels added that there should be no reason for a job offer to be withdrawn or the person be discriminated against, should they qualify and have the skills for the job.

“The only consideration would have to be safety and reasonable accommodation measures. There may be certain types of jobs that may not be suitable for someone with epilepsy, for example driving certain vehicles or working with certain types of dangerous machinery.

“In cases of this nature, you would need to find alternative employment as a job-seeker,” said Daniels.

What is epilepsy?

According to ESA, the condition is neurological and is more common than many realise. Approximately one in 100 South African has epilepsy, which can affect anyone at any age.

Seizures are caused by abnormal chemical activity in the brain, but with the help of medication, people with epilepsy can lead normal lives.

The condition is not infectious or contagious and the number of men with epilepsy is slightly higher than the number of women.

Many people have been able to live normal lives, regardless of the fact that they have epilepsy. Epilepsy Talk cites celebrities, such as Evanescence’s Amy Lee, rapper Lil Wayne, actor Danny Glover, singers Sir Elton John and Prince, who lived and continue to live full lives, despite having epilepsy.

Do you have epilepsy? How have you managed with the condition? Has it had an effect on job applications and do your superiors, colleagues or subordinates treat you differently? Share your opinions and experiences with us by emailing healthnews@health24.com and we may publish your story. Please let us know if you wish to remain anonymous.

via Should I tell my employer I have epilepsy? | Health24

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[WEB SITE] Is epilepsy curable?

D&C-epilepsy cure-THS

Epilepsy is a medical disorder in which a person suffers from a tendency to throw repeated fits or seizures. Seizures occur because of sudden, uncontrolled electrical activity in the brain. It is amongst the most common neurological conditions. The causes of epilepsy can be many, which include brain infections, birth injury, tumours, trauma, congenital malformations, genetic and many others. There are many treatment options available that help to deal with the condition in a better manner and help one lead a fruitful life.

According to Dr Kaustubh Mahajan, Consultant Neurologist, Holy Family Hospital, Bandra, Mumbai, ‘Epilepsy is quite a serious problem in India. People should understand that it is a treatable disease.  In 30 percent of cases that we see is caused by infections in the brain like tuberculosis, which is completely curable and in another 60 percent cases the seizures can be completely controlled.’

As per the estimates, 1 out of every 100-200 person in India suffers from epilepsy, yet most of us have only a hazy idea of what it is. The major problem with epilepsy in our country is late detection. By the time the severity is gauged, the patient would have become an adult. Early detection is a must as it can lead to a complete cure.

Can people suffering from epilepsy prepare themselves to tackle a seizure or a fit?

‘Epileptic seizures often occur without a warning; however, some people may have an aura of the seizure before it occurs. The causes of epilepsy may vary from person to person. Seizures, anxiety, blank stares, headaches, sleepiness, staring spells, or temporary paralysis after a seizure is commonly seen in epilepsy,’ says Dr Kavita Barhate, Consultant Neurologist Dr Barhate’s Neurology clinic, Dombivali, Mumbai.A proper understanding of the causes and risk factor of epilepsy are essential for effective management of epilepsy in India, where the majority of patients are still untreated or inadequately treated.

Is epilepsy a life-threatening condition?

More than the condition it is the seizures that are dangerous. It can lead to accidents and other occupational hazards. It poses a huge risk, especially for those who work at high-rise buildings or near water which could lead to drowning.

What are the treatment options for epilepsy?

Here are few ways in which the condition can be treated:

Drug therapy: The first line of treatment that is offered is anti-epileptic drug or AED therapy. Drugs like phenytoin, oxcarbazepine, valproate, phenobarbitone and carbamazepine are conventional drugs are used. A combination of these drugs may be given if required. Complete withdrawal of drugs is considered only when the patient is seizure-free. Usually, the dosage of the drug is reduced gradually and over a period of 3–6 months (or longer) the patient may be free from seizures. In some cases, patients may need to be dependent on drug therapy for a lifetime.

Surgery: If a person doesn’t respond to drug therapy, then surgery is considered. Here are few ways in which the surgery is done:

  • Removal of seizure focus: It is the most common type of surgery where a small part of the brain where a disturbance in signals is observed is removed.
  • Multiple Subpial Transection: Sometimes, when the affected part cannot be removed, the surgeon may introduce series of incisions to prevent the signals from the affected part to reach other parts of the brain.
  • Lesionectomy: Epilepsy caused by the presence of a lesion can be treated by surgical removal of the legion.
  • Vagus nerve stimulation: This method is considered for people who are not fit for surgery. In this method, a device called vagus nerve stimulator is implanted under the skin of the patient in the chest. The device remains attached to the vagus nerve that delivers electrical signals to the brain thereby reducing seizures by 20 to 40 percent.

Image source: Shutterstock

Published: February 13, 2018 7:11 pm

via Is epilepsy curable? – Read Health Related Blogs, Articles & News on Health News at TheHealthSite.com

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[WEB SITE] Mechanisms of Ketogenic Diet Identify Novel Targets for AED Development

Diet restriction is an ancient method for control of epileptic seizures, though a precise understanding of how it mediates seizure suppression is still unknown. Development of the high-fat, low-carbohydrate, protein-adequate ketogenic diet (KD) was based on the hypothesis that ketone production induced by glucose deprivation is responsible for the historic seizure-suppressing effect of fasting. Recently, several key findings regarding how the ketogenic diet suppresses seizures in patients with refractory epilepsy have revealed new targets for anti-epileptic drug design as well as novel therapeutic approaches for epilepsy.

The traditional KD involves a strict 4:1 ratio by weight of fat to combined carbohydrate and protein. A more recently developed modified KD- the medium-chain triglyceride (MCT) diet- is more ketogenic, and thus allows greater intake of carbohydrates and proteins, easing compliance and improving nutrition. Despite this modification, adherence is so difficult that the KD is reserved for use in patients whose seizures do not respond to anti-epileptic drug (AED) treatment.1


While most epileptics become seizure free with AED treatment, roughly 30% of patients will continue to have seizures despite taking multiple AEDs.Uncontrolled seizures not only limit quality of life, but are also associated with risk of sudden unexpected death in epilepsy (SUDEP),highlighting the need for improved understanding of alternative interventions.

Medically refractory epileptics have few treatment options, including brain surgery, vagus nerve stimulation, and KD. While numerous clinical reports indicate the efficacy of KD for treatment of drug-resistant epilepsy, few high-quality controlled studies exist.The most recent Cochrane Review of KD for treatment of epilepsy states that seizure freedom rates after 3 months on a 4:1 classic KD can reach up to 55%, while rates of seizure reduction reach as high as 85%.However, compliance is difficult, emphasizing the need to better understand how the KD works to facilitate development of supplements that may provide the “ketogenic diet in a pill.”4

General mechanism of action of the ketogenic diet

The KD imparts its effect via multiple pathways. In general, it is believed that the KD works by decreasing neuronal excitability, decreasing inflammation, and improving mitochondrial function, either through the direct action of ketone bodies and fatty acids, or through downstream changes in metabolic and inflammatory pathways.

Several specific mechanisms have been suggested by studies performed in vitro or in animal models of epilepsy, including: 1) direct action of ketone bodies; 2) direct action of fatty acids; 3) glycolic restriction or diversion; 4) altered neurotransmitter systems involving GABA, glutamate, and adenosine; 5) changes in ion channel regulation; 6) improved mitochondrial function and cellular bioenergetics; 7) a reduction in oxidative stress; and 8) enhancement of the tricarboxylic acid (TCA) cycle.While data support a role for each of these pathways in seizure control, several recent studies have identified precise molecules that regulate specific pathways involved in seizure suppression. These molecules may thus serve as targets for drug development that could provide the same effects as the KD without the need for diet restriction.

 

Direct inhibition of AMPA receptors by decanoic acid controls seizures

Decanoic acid, a medium-chain fatty acid that penetrates the blood-brain barrier, has previously been shown to 1) improve mitochondrial biogenesis through a peroxisome proliferator-activated receptors (PPAR)y-mediated mechanism; 2) increase transcription of genes regulating fatty acid metabolism while downregulating genes involved in glucose metabolism; and 3) modulate astrocyte metabolism and affect the glial/neuronal shuttle system by supplying neurons with ketones and lactate for fuel.However, a recent seminal study by Chang et al has now delineated a specific protein target of decanoic acid- the ?-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid (AMPA) receptor and has shown decanoic acid to have anti-seizure effects at clinically relevant doses.Using rat hippocampal slices and whole cell patch-clamp measurements, Chang et al demonstrated that decanoic acid, but not ketone bodies, had an inhibitory effect on neurotransmission, and that this effect is mediated through postsynaptic excitatory AMPA receptors. Importantly, this inhibitory effect was found at physiological serum concentration (0.3mM; 52 µg/ml) of decanoic acid, similar to that measured in children on the MCT diet, and below serum and brain concentrations that suppress seizures in mouse models of epilepsy. Also of note was that decanoic acid selectively blocks excitatory synaptic activity while not affecting inhibitory synaptic currents.5

Furthermore, by expressing AMPA receptor subunits in Xenopus oocytes and testing neuronal excitability in the presence of decanoic acid ± glutamate, the authors were able to conclude that decanoic acid inhibits the AMPA receptor by binding to a site that does not compete with glutamate binding.5

This binding is unique to decanoic acid, while octanoic acid and valproic acid do not interact with AMPA receptors.“If it were possible to replace the diet with an AMPA receptor antagonist, this would enormously simplify therapy, avoid the poor palatability and gastrointestinal side effects of the diet, and therefore make treatment available to a broader group of patients,” wrote Dr. Michael Rogawski in a commentary on the findings of Chang et al.5,6 As such, a comparative trial between the MCT KD diet and parampanel warrants consideration.

Inhibition of lactate dehydrogenase results in seizure suppression

While it is well known that the KD affects energy metabolism, metabolic enzymes that control epilepsy have not yet been identified. Similarly, no AEDs are known to directly impact metabolic pathways, though the mechanism of action of many AEDs remains unclear.In a landmark study published in Science, Sada et al investigated the mechanism by which glucose deprivation leads to neuronal hyperpolarization and subsequent seizure suppression. By simply switching the energy source from glucose to ketone bodies (as occurs on the KD), neurons from the subthalmic nucleus of the basal ganglia were dramatically hyperpolarized. However, addition of ketone bodies alone did not hyperpolarize the neurons; instead, Sada et al were able to show that glucose deprivation resulted in inhibition of lactate dehydrogenase (LDH), an enzyme that converts glucose to lactate in astrocytes, and that this inhibition alone is responsible for neuron hyperpolarization. Therefore, this study suggests it is the inhibition of LDH, and not activation of the tricarboxylic acid (TCA) cycle by ketone bodies, that mediates anti-seizure effects. Sada et al demonstrated that direct inhibition of LDH could suppress seizures both in vitro and in vivo (mouse), confirming LDH as a valid target for development of AEDs.

Taking their study one step further, the authors determined that a clinically used AED, stiripentol, binds to LDH and inhibits its activity. Sada et al were able to modify stiripentol into a derivative that more potently inhibited LDH and could suppress seizures in mice, suggesting that LDH inhibitors should be further explored as drugs that can mimic effects of the ketogenic diet.7

Epigenetic changes induced by the KD confer long-term seizure protection

While acute prevention of drug-refractory seizures is the primary goal of the KD, study of children following the diet suggests that KD may confer protection against seizures even after its discontinuation.8 A proposed mechanism has been recently outlined by Lusardi et al, who demonstrated that the KD reduced hippocampal DNA methylation to levels found in non-epileptic controls, resulting in delayed onset of severe seizures and slower disease progression.9 Importantly, this reduction was maintained over at least 8 weeks after diet reversal, suggesting a “recalibration” of brain chemistry. Similarly, another study found that the KD delayed disease progression and increased longevity by 47% and in mouse models of SUDEP.3 Since hypermethylation of hippocampal DNA is a hallmark of the epileptic brain, the finding that long-lasting epigenetic changes can be maintained in animals predisposed to severe epilepsy suggests that “recalibration” of the epileptic brain is possible. Drugs that increase hippocampal adenosine concentration to that achieved by the KD may prove effective at decreasing DNA methylation status in the epileptic brain,10 and should be pursued for treatment of drug-resistant epilepsy.

Ketogenic diet modification of gut microbiota

A new, recently identified physiologic change induced by the KD is alteration of the gut microbiome. Using a mouse model of Autism Spectrum Disorder (ASD), in which the KD has been shown to limit symptoms,11 Newell et al demonstrated remodeling of the gut microbiota, leading to lower bacterial load and altered composition.12 Interestingly, the authors point out a 2- to 3- fold increase in bacterial species that generate short-chain fatty acids (SCFAs) that actively communicate with the brain. Given the increasing evidence of a “gut-brain axis” and the knowledge that fatty acids play an active role in the epileptic brain, it will be important to determine what role this change in gut microbial composition may play in regulation of seizures.

 

Published: April 28, 2017

 

References

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[WEB SITE] Medication Adherence Key to Epilepsy Treatment

Medication Adherence Key to Epilepsy Treatment

In assessing the effectiveness of prescribed medication there is a strong emphasis on the ability of the patient to adhere to the regime recommended by the clinician. For individuals with epilepsy, adherence to medication is crucial in preventing or minimizing seizures and their cumulative impact on everyday life. Non-adherence to antiepileptic drugs (AEDs) can result in breakthrough seizures many months or years after a previous episode and can have serious repercussions on an individual’s perceived quality of life. Reasons for non-adherence are complex and multilayered. Patients can accidentally fail to adhere through forgetfulness, misunderstanding, or uncertainty about clinician’s recommendations, or intentionally due to their own expectations of treatment, side-effects, and lifestyle choice.

Adherence in epilepsy

Adherence is acting in accordance with advice, recommendations or instruction. Ways that adherence can be optimized;
1.  Educating individuals and their families and caregivers in understanding of their condition and the rationale of treatment, reducing the stigma associated with the conditions.

2.  Using simple medication regimes.

3.  Positive relationships between healthcare professionals, the individual with epilepsy and their family and /or caregivers.

4.  Other measures are; manual telephones follow up, home visits, special reminders, regular appointments/ refill reminders.

While failing to adhere to treatment plans can adversely affect individuals with any general medical condition, Non- adherence to anti-epileptic drugs results to increased risk of status epilepticus (prolonged seizures) resulting into brain damage, SUDEP, risk of injuries, increase rates of admission to hospital due prolonged seizures. The consequences of not taking medication can be more immediate with epilepsy.

Epilepsy as a chronic condition relies heavily on adherence to medical advice in order to maximize an individual’s quality of life by controlling seizures more effectively while avoiding unwanted side-effects. Treatment of those diagnosed with epilepsy the vast majorities are treated with AEDs and approximately 70% can become seizure-free once the most effective regime is followed.
Monotherapy is viewed as the initial and preferential option for treating epilepsy, the choice of drug depending on seizure type and effectiveness of the drug balanced against possible side-effects. It is difficult to find estimates of how many people are on monotherapy or polytherapy at any one point in time.
However, in one of the cases I encountered that of Sarafina Muthoni from Banana, Kiambu County, she was diagnosed with Epilepsy at a very young age in her primary school days. With no history of such a condition in her family, it got everybody thinking what could have gone wrong with their lovely daughter. After days of trying to figure out, the family had to adapt to reality of their daughter living with Epilepsy. She was lucky to have very supportive parents ready to see her through the long journey of treating the condition. The motivation and support from her loved ones to access medication improved her status by far as she continued to adhere to the prescribed treatment. Unfortunately, the support didn’t last long and the burden of continuing with treatment squarely relied on her. This adversely contributed to the beginning of non-adherence to medication for lack of funds to buy drugs. Not only were finances a challenge but also finding a good hospital to comply was a problem.
Muthoni had to live with the sad reality of pain every time she experienced a seizure. Pain which she clearly knew with access to medication the situation could by far be controlled. At the very worse of her situation she found help. Cheshire Disability Services Kenya (CDSK) a Non-Governmental Organization in Kenya whose objective is to empower an inclusive society of persons with disability and develop their full potential to lead a quality life, in partnership with Kenya Association of People with Epilepsy (KAWE) came for Muthonis’ rescue.
Under CDSK’s program to help Epilepsy patients’ access medication and ensure compliance, Muthoni benefited and today she leads a life full of potential and energy as she explores her skills as a beauty and hair stylist.
As we celebrate International Epilepsy Day on Feb 12th 2018, themed on “Life is beautiful”, Muthoni’s story is a highlight of what beauty is all about. Hers’ is just but one of the many inspiring stories to celebrate during this season of Epilepsy Awareness.

Managing Adherence

Adherence to medication regardless of medical condition remains an important problem in treatment. Factors that have been discussed here – side-effects, drug regime, family support, impact on everyday life, relationship with the clinician – are unlikely to be the only predictors of adherence. While adherence to treatment within the context of epilepsy has been the focus of this review, these factors can equally be applied to various chronic conditions.
Assessment of adherence should be a routine part of management of epilepsy. Further recognition and support should be given to patients who have poor seizure control since they are more likely to be more anxious and have unhelpful illness and treatment beliefs.
Finally, patients may be fully aware of the importance of taking AED medication and the benefits gained by altering their lifestyle choices in order to prevent seizures, but will make a decision about the degree to which they follow advice. Patients only have a small amount of time in contact with the clinician in their “patient role”, after which they return to the practicalities of their everyday routine where their adherence fluctuates based on how they feel their medication affects their quality of life.
Strategies to manage adherence originate from different perspectives. While the medical model may advocate less complex drug regimes, the use of measured pill containers, and minimization of side-effects, the psychosocial model analyzes non-adherence in terms of patient attitudes to medication, stigma, family and peer influences, and ability to manage self care. Neither model can adequately improve adherence independently. Perhaps the best approach is to offer a “menu” of adherence-enhancing strategies. However, what is increasingly clear from both models is that total adherence is an unrealistic goal. The emphasis has shifted away from total adherence towards a compromise with both patient and clinician involved in a joint process of treatment negotiation and decision-making in order to achieve the best outcome for the individual.

Source: Evewoman

via Medication Adherence Key to Epilepsy Treatment – EpilepsyU

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[ARTICLE] Eslicarbazepine acetate as a replacement for levetiracetam in people with epilepsy developing behavioral adverse events – Full Text

Abstract

Background

Psychiatric and behavioral side effects (PBSEs) are a major cause of antiepileptic drug (AED) withdrawal. Levetiracetam (LEV) is a recognized first-line AED with good seizure outcomes but recognized with PBSEs. Eslicarbazepine (ESL) is considered to function similarly to an active metabolite of the commonly used carbamazepine (CBZ). Carbamazepine is used as psychotropic medication to assist in various psychiatric illnesses such as mood disorders, aggression, and anxiety.

Aim

The aim was to evaluate the psychiatric profile of ESL in people who had LEV withdrawn due to PBSEs in routine clinical practice to see if ESL can be used as a possible alternative to LEV.

Methods

A retrospective observational review was conducted in two UK epilepsy centers looking at all cases exposed to ESL since its licensing in 2010. The ESL group was all patients with treatment-resistant epilepsy who developed intolerable PBSEs to LEV, subsequently trialed on ESL. The ESL group was matched to a group who tolerated LEV without intolerable PBSEs. Psychiatric disorders were identified from case notes. The Hamilton Depression Scale (HAM-D) was used to outcome change in mood. Clinical diagnoses of a mental disorder were compared between groups using the Fisher’s exact test. Group differences in HAM-D scores were assessed using the independent samples t-test (alpha = 0.05).

Results

The total number of people with active epilepsy in the two centers was 2142 of whom 46 had been exposed to ESL. Twenty-six had previous exposure to LEV and had intolerable PBSEs who were matched to a person tolerating LEV. There was no statistical differences in the two groups for mental disorders including mood as measured by HAM-D (Chi-square test: p = 0.28).

Conclusion

The ESL was well tolerated and did not produce significant PBSEs in those who had PBSEs with LEV leading to withdrawal of the drug. Though numbers were small, the findings suggest that ESL could be a treatment option in those who develop PBSEs with LEV and possibly other AEDs.


1. Background

Epilepsy is a neurological condition with an enduring predisposition to generate seizures and is associated with cognitive, psychological, and social issues [1]. Neuropsychiatric disorders are also more prevalent in people with epilepsy than in the general population [2] ;  [3]. There is, however, still ambiguity as to whether these comorbidities are the result of a direct link such as a genetic predisposition or structural cause leading to seizures and psychiatric problems or if seizures over time lead to psychiatric symptoms [4].

Treatment strategies in epilepsy need to be tailored to the individual and in particular, clinicians when choosing the appropriate antiepileptic drug (AED) medication need to pay attention not only to seizure patterns but also to a number of different parameters such as age, gender, comorbidities, and cognitive state.

Up to 75% of people with epilepsy may at some point have mental health issues. Antiepileptic drugs also have the potential to impact on mental health and cognition [5] ;  [6], and treatment with some AEDs is associated with the occurrence of psychiatric and behavioral side effects (PBSEs) while other may have beneficial psychotropic effects [7][8][9] ;  [10]. The PBSEs are often overlooked in epilepsy management and, withdrawal of an AED occurs only if the impact of these symptoms is significant and usually a risk to self or others.

Understanding psychotropic effects of (AEDs) is crucial but knowledge is limited. Carbamazepine (CBZ)-purported mode of action is via the modulation of voltage-sensitive sodium channels. Apart from antiepileptic action, CBZ is also used as a mood stabilizer and has proven efficacy in affective disorders. Oxcarbazepine (OXB) is structurally related to CBZ and is a prodrug that is converted into licarbazepine. The active form licarbazepine is the S enantiomer, known as eslicarbazepine (ESL). The presumed mechanism of action is as for CBZ. Conversely, OXB has never been proven to work as a mood stabilizer. In view of similarities of the postulated mechanism of action but a better tolerability profile, OXB has been used “off label” in mood management.

Levetiracetam (LEV), a commonly prescribed AED in the UK, is associated with PBSEs including irritability, depression, and anxiety [9] ;  [11]. A study suggested that PBSEs occurred in around 17% of people exposed to commonly used AEDs. Nearly 1 in 5 study participants on LEV reported PBSEs to LEV. However for CBZ the reported PBSEs were significantly lower [11]. The ESL did not figure in this study. Another study suggested that PBSEs with ESL were < 2.5%. While side effects such as irritability, anxiety, and aggressive behavior have been associated with other AEDs, rates of aggression and agitation were comparable between ESL and placebo [12]. […]

Continue —> Eslicarbazepine acetate as a replacement for levetiracetam in people with epilepsy developing behavioral adverse events

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