Posts Tagged Epilepsy

[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 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] 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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[WEB SITE] Stopping Epilepsy Before It Starts? CURE Researcher Identifies a Possible Biomarker

Early intervention, in response to rising biomarker levels, could delay the onset of epilepsy, block the progression of the disease, and eliminate impairments in memory.

/EIN News/ — Chicago, Feb. 06, 2018 (GLOBE NEWSWIRE) — New research, funded by Citizens United for Research in Epilepsy (CURE), has discovered a ‘smoking gun’ biomarker that could result in treatments that stop some epilepsies before they even start.

“Being able to identify that a person is likely to develop epilepsy following a brain injury is one of the most important focus areas in modern-day epilepsy research,” says Dr. Laura Lubbers, CURE’s Chief Scientific Officer. “With 3.4 million Americans suffering from epilepsy and seizures in the U.S., this discovery of a predictive biomarker for a certain form of epilepsy could prevent unpredictable seizures from taking over the lives of millions of Americans and their families.”
Using a rat model of brain injury and epilepsy, CURE-funded researcher Dr. Annamaria Vezzani and her team at the Mario Negri Institute for Pharmacological Research in Milan, Italy have identified that, prior to the development of epilepsy, high levels of the protein high-mobility group box 1 – also known as HMGB1 – have been found in both the brain and blood of rats. This means that high levels of the biomarker HMGB1 may predict the impending onset of epilepsy.

The CURE-funded research team also discovered that a combination of existing medications not only prevent an increase in HMGB1 levels, but delay the onset of epilepsy, halt the disease’s progression, and eliminate memory impairments associated with epilepsy.

“This discovery suggests that early intervention could slow, or potentially stop, the development of epilepsy in those at risk,” says Dr. Lubbers. “Epilepsy costs the United States approximately $15.5 billion each year, and prevention could result in ripple effects that go far beyond the millions who may receive early treatment.”

HMGB1 is normally released in the brain in response to neuroinflammation, the brain’s response to injury.  Targeting the neuroinflammation that leads to increased HMGB1 with drugs that are already in clinical use could create an entirely new therapeutic area to prevent epilepsy from developing or improve its outcomes.

“With this research, Dr. Vezzani and her team have provided hope that a treatment for preventing acquired epilepsy before it occurs is on the horizon,” says CURE CEO Kate Carr. “We thank both Dr. Vezzani as well as our supporters who have made such research possible through their generous donations.”

via Stopping Epilepsy Before It Starts? CURE Researcher Identifies a Possible Biomarker – EIN News

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[WEB SITE] A wearable using AI to identify severe seizures and warn caregivers gains FDA approval

Embrace by Empatica is a smart watch for epilepsy management to identify convulsive seizures and send alerts to caregivers.

Empatica, a Massachusetts Institute of Technology spinoff, received FDA clearance for a wristworn device that uses machine learning to alert people with epilepsy and their caregivers of a convulsive seizure and track their duration and frequency.

Epilepsy affects a least 2.2 million people, according to data from the Epilepsy Foundation.

Empatica’s Emrace device assesses multiple indicators of a seizure, including electrodermal activity, a signal associated with fight or flight response that’s used by stress researchers to quantify physiological changes related to sympathetic nervous system activity, the company statement noted.

In a clinical trial of the device, 135 patients across multiple sites resided at epilepsy monitoring units with continuous monitoring with video-EEG and simultaneously wore an Empatica device. Data collected over 272 days showed that the wearable’s algorithm detected 100 percent of the seizures, according to the company’s statement.

In addition to seizures, the device also tracks sleep and physical activity, according to the company’s website.

The company’s FDA clearance comes nearly one year since its device received regulatory approval in Europe.

Rosalind Picard, the Director of the Affective Computing Group at MIT Media Lab and Chief Scientist at Empatica said in a company statement that “it’s been very meaningful to see this technology move from the lab” into an easy-to-use sensor.

Other companies have developed seizure detection systems, particularly with the goal of sharing the collected data with clinicians so they have a better understanding of their patients’ health between appointments. SmartMonitor developed a smartwatch that detects “irregular shaking” akin to a convulsive seizure. Last month it rolled out a version of its technology in an app for the Apple smartwatch.

Two years ago THREAD Research developed a smartwatch application for tracking epileptic seizures for ResearchKit with Johns Hopkins University.

The holy grail for people who suffer from seizures would be a device that could warn them ahead of time so that people could avoid potentially putting themselves in harm’s way or take other appropriate action. That’s a longterm goal for Empatica.

Photo: Empatica

via A wearable using AI to identify severe seizures and warn caregivers gains FDA approval – MedCity News

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[WEB SITE] FDA Approves $249 Smartwatch That Detects Seizures

Empatica’s Embrace smartwatch isn’t like other wearable devices. Sure, it can tell you what time it is and analyze your sleep patterns, but it can also do something that almost every other smartwatch can’t. The Embrace is capable of sending the user an alert if it thinks that their body might be going into a seizure. The FDA has approved this $249 smartwatch which means it can now be sold to the public.

Embrace relies on artificial intelligence to detect for signals indicating the possibility of the user’s body going into a “grand mal” seizure. If it detects one is coming, it will send an alert to a designated family member or caregiver. Grand mal seizures are generally associated with epilepsy and are characterized by severe convulsions and a loss of consciousness, they can last up to three minutes.

This smartwatch actually went on sale in Europe back in April last year but it was held up for approval by the U.S. Food and Drug Administration which has finally given it the nod, allowing the company to sell this $249 smartwatch in the United States.

Those who are interested in buying one can now head over to Empatica’s website to purchase the Embrace smartwatch for $249. They should keep in mind that it requires a $9.90 subscription and in order to receive seizure alerts, customers in the United States also have to be enrolled in the company’s clinical trials.

via FDA Approves $249 Smartwatch That Detects Seizures | Ubergizmo

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[BLOG] 8 Things I’ve Learned From Having a Seizure Disorder

No one is able to prepare you for your first seizure and all that follows after it. Your whole life turns upside down on a dime and you have to quickly learn how to navigate this new condition. It’s frightening, but you’ll learn new things about yourself and the world around you. Here’s an abbreviated version of the things I’ve learned from having a seizure disorder:

1. Friendship

Some people don’t know how to handle being friends with someone who has a disability. They get embarrassed by you, they don’t understand when your body physically won’t allow you to go out or they just don’t want to bear your burden with you. These truths are hard to swallow until you find a group of people who are not ashamed of you, who don’t fault you for being sick and who are compassionate enough to sit with you all hours of the night. When you find this group of friends, hold on to them.

2. Finances

Holy crap, is it expensive. Between medication, doctor visits, etc., it adds up quickly and can swiftly put you in debt.

3. Medication

Can’t live with it, can’t live without it. The side effects can be debilitating – you may cease having seizures but you may feel like a shell of yourself. From lethargy to nauseousness to weight gain, it’s a slippery slope trying to navigate medicine and it’s not even guaranteed to be effective for you.

4. People will treat you differently

Enough said – this one sucks.

5. Modifications

You might have to alter your lifestyle to be seizure free. Diet changes, sleep schedules and monitoring stress becomes a part of your daily routine.

6. Fear

It’s the most frightening thing I’ve ever experienced and you don’t get used to it, you just learn how to better navigate. I have nightmares about having a seizure and I give myself panic attacks thinking about it. There are so many different variables that come into play and it’s easy to analyze each of them, resulting in mass chaos in your brain.

7. Family

They worry. Your mom loses sleep, your aunt prays for you, your sister listens to you cry. They love you and want answers just as badly as you do. Don’t shut them out when you get frustrated.

8. Faith

Your Heavenly Father hears the cries of your futile heart. He cares for you. I believe there is a purpose for your life and a reason why you have this condition. We may not understand what that reason is, but His word tells us that He works all things together for our good (Romans 8:28).

via 8 Things I’ve Learned From Having a Seizure Disorder – Alert News Today

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[WEB SITE] Tickling the brain with electrical stimulation improves memory, study shows

Tickling the brain with electrical stimulation improves memory, study shows
Credit: Mayo Clinic

Tickling the brain with low-intensity electrical stimulation in a specific area can improve verbal short-term memory. Mayo Clinic researchers report their findings in Brain.

The researchers found word recall was enhanced with stimulation of the brain’s lateral temporal cortex, the regions on the sides of the head by the temples and ears. Patients recalled more words from a previously viewed list when low-amplitude  was delivered to the brain. One patient reported that it was easier to picture the words in his mind for remembering.

“The most exciting finding of this research is that our  for language information can be improved by directly stimulating this underexplored brain area,” says Michal Kucewicz, Ph.D., a Mayo Clinic researcher in the Department of Neurology and co-first author. Dr. Kucewicz compares the stimulation to “tickling” the brain.

Memory impairments are a prevalent, costly problem in many brain diseases. Medication and behavioral therapies have limited effectiveness in many cases. “While electrical stimulation of the brain is emerging as potential therapy for a wide range of neurological and psychiatric diseases, little is known about its effect on memory,” says Gregory Worrell, M.D., Ph.D., a Mayo Clinic neurologist and senior author of the article.

The Mayo researchers are part of a multicenter collaboration led by Michael Kahana, Ph.D., University of Pennsylvania in Philadelphia. This collaboration includes seven academic medical centers.

“The next step for this project is to determine how to best apply electrical current in terms of the exact location within this area of the brain, timing and parameters of stimulation,” says Brent Berry, M.D., Ph.D., a Mayo Clinic researcher in the Department of Physiology and Biomedical Engineering and co-first author.

In this Brain paper, Drs. Kucewicz and Berry, and colleagues focused their study on four areas of the brain known to support memory for facts and events that can be consciously recalled.

The memory testing was done with patients undergoing evaluation for surgery to address seizures. These patients agreed to have their memory investigated using the electrodes implanted in their brains for surgical evaluation. It is common for people with epilepsy to have memory problems because the brain circuits that underlie memory function often are affected by epilepsy.In the study, patients were instructed to read a list of words—one at a time—from a computer screen. Electrical stimulation was applied some of this time. Patients then attempted to freely recall the words in any order.

Among 22 patients, the researchers found enhanced memory performance in the four patients with stimulation of the lateral temporal cortex but not among those with the other brain regions stimulated.

“These findings may lead to new stimulation devices that treat deficits in memory and cognition,” says Jamie Van Gompel, M.D., a Mayo Clinic neurosurgeon specializing in  stimulation and an author in the study.

The authors note study limitations include pain and seizure medications that may affect patient performance, the hospital setting that may disrupt ‘ sleep and wake cycles, and the fact that epilepsy affects memory.

 Explore further: Neuroscientists improve human memory by electrically stimulating brain

More information: Michal T Kucewicz et al. Evidence for verbal memory enhancement with electrical brain stimulation in the lateral temporal cortex, Brain (2017). DOI: 10.1093/brain/awx373

via Tickling the brain with electrical stimulation improves memory, study shows

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[WEB SITE] Epilepsy & Transportation: Air Travel Guidelines

Travelers with epilepsy may have special concerns about traveling by air. Generally speaking, a person with epilepsy does not pose any greater safety risk on a plane than a passenger without epilepsy. There is also no medical evidence that air travel increases the risk of seizures or adversely affects people with epilepsy. On occasion, however, airline and airport personnel may try to prevent an individual with epilepsy from traveling. Federal laws grant travelers with disabilities legal rights to prevent this from happening unless there is a legitimate safety risk.

Your Legal Rights

The Americans with Disabilities Act (ADA) requires that airports and related facilities, such as parking lots and restaurants be accessible to people with disabilities (see our factsheet on the ADA and Public Accommodations). Airplanes are not, however, required to comply with the ADA. Instead, a federal law known as the Air Carrier Access Act (ACAA) applies.

The ACAA specifically prohibits the airline from refusing to allow someone to board because of his disability, or even asking whether an individual has a disability. Under the ACAA, a person is disabled if he or she has a physical or mental impairment that permanently or temporarily substantially limits one or more major life activities, has a record of such impairment, or is regarded as having such impairment. Under the law, the only time an airline can refuse to provide transportation is if the pilot reasonably believes, based on all the information known at the time, that the person’s seizure disorder or other disability poses a real safety risk to himself or the other passengers and this risk cannot be eliminated by providing a reasonable accommodation. Nor can a pilot require the passenger to present a medical certificate from his physician certifying that it is medically safe for the individual to travel merely because of the individual’s disability.

Such a certificate can be required only if the passenger:

  • is on a stretcher or in an incubator (where such service is offered);
  • needs medical oxygen during flight (where such service is offered);
  • has a medical condition which causes the carrier to have reasonable doubt that the individual can complete the flight safely, without requiring extraordinary medical assistance during the flight; or
  • has a communicable disease or infection that has been determined by federal public health authorities to be generally transmittable during flight.

Notably, all commercial airlines that fly planes with more than 19 passengers to or from a destination within United States or its territories must comply with the ACAA.

Travel Tips

The ACAA also requires airlines to train their personnel how to appropriately treat people with disabilities and how to handle any kinds of emergencies that may arise, such as a seizure. There may, however, be times when airline personnel are unable to provide proper assistance either because they do not recognize that an individual is having a seizure or have not been properly trained in how to respond to a seizure. For this reason, it is helpful to wear a medical identification bracelet that indicates you have epilepsy.

If you are traveling with a companion, you should be sure he can recognize a seizure and administer proper first aid if the need arises. A companion can also explain your situation to the flight crew, which could prevent the pilot from landing the plane, as is the usual procedure in medical emergencies if there is no medical doctor on board that can certify that the flight can continue. You must carry your medication with you in its original container and in a separate clear plastic bag, rather than packing it, as well as a snack so that you can access it easily in case there is a long flight delay or your luggage is lost.

Some people with epilepsy have suggested that they find it helpful to sit in an aisle or a bulkhead seat since these seats have more space to move around in the event one has a seizure while on the plane. There is no medical evidence that a bulkhead or aisle seat is necessary just because one has a tendency to seizures, and you would need to show a need for that because of the specifics of your personal medical situation. Bulkhead seats would, however, be more convenient if you are traveling with a service animal.

If you think you need to request special seating because of your epilepsy or another medical condition, you should notify the airline at the time of reservation or at least 24 hours in advance of your flight. The ACAA requires that airlines grant these requests unless the person cannot comply with the FAA requirements for sitting in the exit row (that is, you must be physically and mentally able to open the door and get through the exit on your own) or the seat has already been assigned to another individual requiring special seating. If you give less than 24 hours notice, an airline is only required to comply with the request if it reasonably possible to do so.

People whose seizures typically include unusual behavior, such as walking, grabbing, or running while consciousness is impaired, and whose seizures are not well controlled, may wish to travel with a companion who could speak for them during a seizure to reassure others in the event of a seizure on the plane. Some people with epilepsy choose to describe their seizures in advance to airline personnel to prevent misunderstanding of possible behavior, although experience has also shown that sometimes airline personnel may refuse to allow the traveler on the plane. The added security now present at airports and aboard airplanes, including the presence of armed pilots and/or air marshals on planes, may create a need for a companion or an advance explanation to airline personnel for these individuals.

For more information about your rights as an air traveler with a disability, or to lodge a complaint, call 1-800-778-4838 (voice) or 1-800-455-9880 (TTY). For a question or complaint related to the airport security screening process, call the Transportation Security Administration’s (TSA) Consumer Response Center at 1-877-336-4872.

via EFNW » Epilepsy & Transportation: Air Travel Guidelines

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[BLOG POST] Top tips to keep you safe when you’re travelling with epilepsy

Living with epilepsy should not stop you from travelling and exploring the world.

Ensuring that you are well-prepared and taking extra precautions means that you can still have an amazing time travelling.

In this post, we offer some tips and advice to ensure that you can still have an incredible time travelling…


Tell the security staff at the airport about your epilepsy medication

Going through security at the airport can be a pain at the best of times but it can be even worse when you need to bring lots of medication with you.

To ensure that there are no problems at security, the medication should be kept in its original package and accompanied with a copy of the prescription.

If you are needing to bring large amounts of medication because you’re travelling for a long period of time, you will need to contact the airline you are flying with beforehand to receive a letter of permission for security.

Some people may also carry a vagus nerve stimulation device, which could possibly set off the metal detectors – make sure that you inform the staff at security about this.

Inform the cabin staff about your seizuresman walking through the airport

If you’ve recently experienced a seizure or are going on a long haul flight, you may want to consider telling the cabin staff about your seizures.

The majority of cabin staff will be trained in first aid and this will help reduce stress when travelling.

Pack backup medication and put it in a different bag

This is crucial just in case any of your bags go missing or get stolen.

Make sure that you have all of your medication in your hand luggage and put extra in your hold luggage too.

Consider the time difference

If you are travelling to a different time zone, you may need to gradually adjust the times you take your medication. Your GP should be able to help you plan for this.

Also adjust your body clock to prevent jet lag. Lack of sleep can be a cause of seizures so plan when you will need to sleep to match the destination you are visiting.

Check if you need vaccinations and anti-malaria medication

Depending on what country you are visiting and what time of year you are travelling, you may need vaccinations and anti-malaria medication.

The majority of vaccinations are safe for those with epilepsy but always double check with your GP or take your medical history to a travel clinic.

More caution needs to be taken when it comes to anti-malaria tablets. Make sure that you consult your GP before taking any anti-malaria tablets and find out which ones are safe for you to take.

Anti-malaria medication is not 100% effective so it is important to take extra precautions. Wear lights clothes that cover your legs & arms, use mosquito nets and use insect repellent. Mosquito sprays from the country you are visiting are often more effective than those you can buy in the UK.

Never travel without travel insurance or the European Health Insurance Card

This is perhaps one of the most important things to do for travelling whether you have epilepsy or not.

In the UK, we are very lucky to have the NHS but medical care and treatment costs abroad can be very expensive. It’s important to make sure you are covered in case the worst does happen.

Make sure that your insurance policy covers epilepsy-related incidents and ensure that it will not be made exempt from activities or sports.

If you are travelling in Europe, the European Health Insurance Card (EHIC) will cover you in many European countries.woman wearing empatica embrace watch

Use seizure detection watches

Innovative wearable devices are now available that can detect seizures. Devices such as the Empatica Embrace Watch will detect a seizure when it is happening and alert loved ones.

This means that whoever you are travelling with can be alerted about your seizure if you are separated and it also measures the seizures so you can be aware of what scenarios might trigger the seizure.

The Embrace can also be used as an activity tracker and it monitors sleep so this can also help with jet lag!

Wear identification jewellery or carry an epilepsy ID card

Wearing identity jewellery or carrying an epilepsy ID card will let people know what is happening if you have a seizure while you are away.

You can order an epilepsy ID card free of charge from the Epilepsy Action online shop or by contacting Epilepsy Action.

Set reminders to take medication

When you are travelling and having fun, taking medication can be the last thing on your mind.

Make sure that you set reminders to take the medication on your phone or on a travel alarm clock.

Research safe activities and sportssomeone snowboarding

As tempting as it may be to immediately do the next activity available, you may need to double check if it is safe to do with epilepsy.

Many activities such as scuba diving, winter sports and skydiving are safe as long as you have been seizure-free for a certain amount of years.

Epilepsy Action has a useful page about which activities and sports are safe to do.

Don’t feel pressured to drink alcohol

When travelling, especially as a young adult, it can feel like everyone around you is drinking alcohol. However, alcohol can make epilepsy medication less effective and possibly trigger a seizure.

To prevent this, make sure that you stay well-hydrated with water and don’t give into the peer pressure to drink. You can still have lots of fun without alcohol.

Do not dismiss hostels

Many living with epilepsy may assume that they can only stay at hotels and this is a safer option but in fact staying at a hostel could be a safer option.

At a hostel, there will always be someone around to help instead of being enclosed in a hotel room and hostel staff are typically more aware of basic first aid.

Driving abroad

The rules for driving with epilepsy vary from country to country. However, if you hold a UK driving licence, the DVLA regulations about epilepsy still apply to you when driving abroad, rather than the regulations of the country you are visiting.

However, do not dismiss public transport as a option when travelling. This is a cheaper option and may also be safer.

Use travel guides or google maps to print or take a screenshot of where you need to go – this will ease any stress or anxiety about getting around.

Avoid areas with flashing lightsflashing lights

This is especially applicable for those living with photosensitive epilepsy.

Many countries may not comply with flashing lights regulations and they may flash at a rate which causes seizures.

Evening shows in other countries may trigger seizures and also beware of camera flashes in tourist locations.

If the flashing starts to bother you, cover one eye till the feeling passes.

Learn the local language

It may be useful to learn a few basic sentences to explain to someone that you have epilepsy and phrases that you and who you are travelling with can learn in case of an emergency.

The International Bureau of Epilepsy has a really useful travel handbook that covers first aid seizures and available in many different languages.


via Top tips to keep you safe when you’re travelling with epilepsy |

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[WEB SITE] Engineer locates brain’s seizure onset zone in record time: Discovery breakthrough for epilepsy patients

A University of Houston biomedical engineer is reporting a dramatic decrease in the time it takes to detect the seizure onset zone (SOZ), the actual part of the brain that causes seizures, in patients with epilepsy.

Nearly 30 percent of epilepsy patients are resistant to drug therapy, so they have the option of surgery to remove their seizure onset zones. Most of them opt in, according to assistant professor Nuri Ince, noting the improved quality of life for sufferers.

Using oscillating brain waves, rather than observing seizures as they happen, Ince locates the seizure onset zone in one hour. Current treatment protocols for detecting the zone require prolonged monitoring in the hospital for up to 10 days. Ince’s new method to locate the seizure onset zone, reported in BrainA Journal of Neurology, could save patients weeks of hospitalization, reduce complications and costs associated with what has traditionally been an arduous, and often painful, procedure.

“We observed that the high frequency oscillations in the SOZ form random, repetitive waveform patterns that identify their location,” said Ince, who compares the process to a broken bike or car which makes the same sound randomly, yet repetitively. “In a car it’s a sound, in a brain it’s the oscillatory patterns that are almost screaming ‘I am here!'”

Exploring the brain

Ince and his former graduate student, Su Liu, studied pediatric and adult brain patterns provided by collaborators at Texas Children’s Hospital, Baylor College of Medicine, University of Texas MD Anderson Cancer Center, Istanbul University and University of Minnesota.

Ince developed a pipeline of machine learning algorithms to interpret the brain waves, and after two years his algorithm identified the pattern.

“We got goosebumps when we saw it,” said Ince, recalling the moment he realized that the patterns could not only be found quickly, but also could add to the medical community’s understanding and knowledge of how seizures start.

Critical to Ince’s discovery is delineating between the high-frequency oscillations that signify the SOZ from the ones ignited by normal functioning, like movements or talking. The regions can be located very close together, and the overlap between physiological and pathological oscillations are seemingly indistinguishable. That, along with difficulties associated with visual inspection of prolonged invasive recordings, is why current detection protocol ignores the oscillations, tracking only the seizures themselves. The current method, requiring prolonged patient hospitalization, requires a patient and medical team to wait for seizures to occur to identify their onset location.

“Can you imagine monitoring a patient for just one hour, as compared to before when it takes days or weeks?” Ince said, still marveling at the saving of both time and money this translational project will bring to the patient and their families.

Story Source:

Materials provided by University of Houston. Original written by Laurie Fickman. Note: Content may be edited for style and length.

Journal Reference:

  1. Su Liu, Candan Gurses, Zhiyi Sha, Michael M Quach, Altay Sencer, Nerses Bebek, Daniel J Curry, Sujit Prabhu, Sudhakar Tummala, Thomas R Henry, Nuri F Ince. Stereotyped high-frequency oscillations discriminate seizure onset zones and critical functional cortex in focal epilepsyBrain, 2018; DOI: 10.1093/brain/awx374

via Engineer locates brain’s seizure onset zone in record time: Discovery breakthrough for epilepsy patients — ScienceDaily

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