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#NewConversationsDay About Epilepsy: Blog Post

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My name is Petrina Diamantakos. 

I’m 19 years old and am currently pursuing a Health Sciences degree at Western University. One year ago, I began working at Epilepsy Simcoe County (ESC) in Barrie as a way to learn more about healthcare charities, and how necessary they are for the communities they serve; and let me tell you, they are necessary.

 

Here at ESC, our mission is to help those in Simcoe County affected by epilepsy with advocacy, awareness, education, and support. 

I have learned that these things are easier said than done. Especially one in particular: awareness. 

The rest of our mission statement is directed more towards individual clients, whereas awareness is directed towards the entire Simcoe County population, which can make it a challenge. I’m writing this article to try to change that; so that people in Simcoe County can take away three key things; WHO needs to be talking about epilepsy, WHY it needs to be more than just people with epilepsy, and HOW to start the conversation.

 

I’ve already answered the WHO question – by directing this article at the population of Simcoe County – but it’s more than that. If you think your life hasn’t been affected by epilepsy, you’re most likely mistaken. With 1 in 100 people having epilepsy, there is a very high chance that you’ve encountered someone with the condition; that’s why everyone needs to be having a conversation about epilepsy, not just those directly affected. It’s not only a cause for people with epilepsy, it needs to be everyone’s cause.

 

As for the answer to the WHY, I’ve already hinted at that as well. Epilepsy is a very complex condition that has no cure, and can be very difficult to manage. For about 30% of people with epilepsy, medication will not be able to control their seizures. This is a huge reason why everyone needs to be having a conversation about epilepsy. At any time, whether you’re shopping, at school, at the gym, etc, there is a possibility that someone could have a seizure around you. When someone with epilepsy seizes, there are times when it may be necessary to call an ambulance (but not all seizures are a medical emergency). This means you – as a citizen – need to be informed about what to do to help that person during that time. Seizure first aid is an incredibly simple thing to learn, but not many people are aware of it unless they – or someone in their family – is directly affected by epilepsy. 

Setting safety aside for a moment, there are also many other issues surrounding epilepsy that need to be discussed including but not limited to; diagnosis, treatment, bullying, social life, transportation, and so on.

 

Finally, HOW can you start the conversation today:

  1. Educate yourself — Learning about epilepsy, seizure first aid, and reading articles like this one are all steps in the right direction for becoming more informed about. The more informed you are, the easier it’s going to be to discuss issues surrounding epilepsy and solutions to them.
  2. Be kind — Kindness is the best medicine, and it goes a long way. Kindness starts a butterfly effect, and the kinder you are, the more kind others will be. Currently, research shows kindness has amazing results on health – not only for the person receiving the kindness – but also to the person spreading it. It costs you nothing, but pays you back in spades.
  3. Be an advocate — Support those in your life affected by epilepsy, and try to help them in any way you can in your position. The healthcare system is not an easy ride, so stand by them in times when they need it. Being an advocate can also go beyond healthcare. You can also help by educating others, answering questions, or even supporting agencies like ESC, who advocate for you.
  4. Ask questions — If you are ever confused or curious about epilepsy, ask someone who has it or is educated on the topic. Most people with epilepsy want their stories heard, and told the right way; so what better way than to hear it come right from them.
  5. Listen to the answers — Too often people with epilepsy can be overlooked to stereotypes and stigma around the condition. When consulting someone about epilepsy, actively listen to what they are saying. They are a valuable source that should never be taken for granted.

 

To conclude this article, I want to mention that epilepsy is never a done deal; you can never be too educated or have too many conversations. New information about epilepsy comes to light every single day, and you can never learn to much. So I hope this article has given you a new perspective on how to approach talking about epilepsy. It’s not something that should be feared or disregarded; it’s something that needs to be embraced, learned, and taught. The conversation is never over, and I hope you won’t quit. 

I know I won’t.

(Leave your comments and questions below in how you will be starting – or continuing new conversations and awareness about epilepsy)

Teens with illnesses want role in decision-making

As seen in https://nationalpost.com

Teens with chronic illnesses would like to have a say in decisions such as switching to a new medicine, but they often feel left out of the conversation, a small study suggests.

Researchers in Wales who interviewed teens being treated for a range of chronic conditions, like epilepsy or diabetes, found these young patients want to be involved in decision-making about their treatment and want parents and doctors to see their contribution as important and positive, yet they often feel adult opinions carry more weight than theirs.

These findings “could help doctors understand that when they have teenagers who are becoming mature adults, they really need to talk to them as much, or maybe more, than they talk to their parents,” said Glyn Elwyn, a professor at the Dartmouth Institute for Health Policy and Clinical Practice in Hanover, New Hampshire, who wasn’t involved in the study.

Amber Jordan, a researcher at Cardiff University, and her colleagues recruited teenagers from clinics treating different types of long-term disorders.

As reported in the Journal of Adolescent Health, the researchers did one-on-one interviews with 19 teens, ages 13 to 19. Then they identified the major themes emphasized by these young patients in describing their experiences with decisions about matters like beginning or discontinuing treatment, changing medications or dosages, undergoing surgery, making lifestyle changes or participating in a clinical trial.

Among the questions, researchers asked teens to describe their actual role in making decisions and their ideal role, as well as that of their parents and physician. Teens drew a pie chart to visualize proportionate roles in both cases.

One 18-year-old girl with epilepsy indicated in her drawing that her doctor had about 50% of the decision-making power while she and her parents each had about 25%. Ideally, she would have liked to play the major role in the decision, and would have liked the doctor and her parents to have equal but lesser roles.

Among the insights researchers gleaned from the interviews was that dynamics between patient, parents and physician strongly influence how involved the teen is in medical decisions.

When adults are seen as having more influence over the decision, teens can feel as though they are not allowed to be involved.

When faced with a loss of control, some teens could refuse to engage in discussion, Jordan noted in a phone interview. One patient reported that she decided to stop her medications altogether.

“She made that decision on her own. There were obviously repercussions afterwards. She described it as a result of feeling a lack of control – nobody was involving her in the conversation,” Jordan said.

Jordan said parents should be informed that it’s good for teens to get involved in medical decisions. Past studies show that a shared decision may increase adherence to self-management plans, for example.

Another theme in the interviews was that teens want to feel “ready” to participate in decisions. At first, being diagnosed with a long-term disease can disrupt a teen’s sense of identity, leading to their just accepting a decision, or disconnecting from the conversation altogether.

“You’re shocked cuz you’ve obviously just been diagnosed and then it’s hard to take in so much information because it just feels like it’s been like forced on you,” said one female patient suffering from an endocrinological disorder.

“Results of this study apply to everybody, because health professionals are not very good in general about helping people understand reasonable options and taking their views and preferences into consideration,” Elwyn said.

As seen in https://nationalpost.com

Why Do Some People Stop Breathing After Seizures?

As seen in https://www.technologynetworks.com

Could a chemical produced by the brain that regulates mood, sleep and breathing also be protective in people with epilepsy? New research has found that higher levels of serotonin in the blood after a seizure are linked to a lower incidence of seizure-related breathing problems called apneas, when a person temporarily stops breathing. The study is published in the September 4, 2019, online issue of Neurology®, the medical journal of the American Academy of Neurology.

“Serotonin, a hormone that transmits signals between nerve cells in the brain, is known to regulate breathing and waking from sleep, but what is unknown is how it may influence breathing before, during and after seizures,” said study author Samden D. Lhatoo, MD, FRCP, of McGovern Medical School at University of Texas Health Science Center in Houston, Texas, who conducted the research at Case Western Reserve University in Cleveland, Ohio. “Our findings show that higher levels of serotonin after a seizure are associated with less breathing dysfunction, and while we cannot make any links between serotonin levels and a risk of sudden unexplained death in epilepsy (SUDEP), our research may provide some important clues, since SUDEP has been linked in previous research to profound breathing dysfunction after generalized convulsive seizures.”

The study involved 49 people with difficult-to-treat epilepsy with an average age of 42. Participants, who had been diagnosed with epilepsy for an average of 17 years, spent time in an epilepsy monitoring unit, where researchers examined one seizure for each participant, evaluating the electrical activity in the brain and the heart, oxygen levels in the blood, as well as changes in blood flow. Blood samples were collected within about 10 minutes after the seizure and again at least 12 hours later to measure serotonin levels.

A total of 35 percent of the people had apnea during their seizures, and 30 percent had apnea after their seizures.

Researchers found that serotonin levels after a seizure were higher than before a seizure in people who did not temporarily stop breathing during a seizure. For 32 people who did not temporarily stop breathing during a seizure, serotonin levels were an average of 140 nanograms per milliliter (ng/ml) higher than an average of 110 ng/ml before seizure. For 17 people who did temporarily stop breathing, their serotonin levels were not significantly higher compared to before seizure.

In 19 people with generalized convulsive seizures who did not temporarily stop breathing after a seizure, serotonin levels were higher after seizure, an average of 190 ng/ml, than before the seizure, an average of 120 ng/ml. But serotonin levels were not significantly higher compared to before seizure in eight people with generalized convulsive seizures who temporarily stopped breathing after seizure.

Researchers also found that a higher heart rate was accompanied by higher serotonin levels after seizure in people who did not temporarily stop breathing after a seizure compared to those who did.

“Our results give new insight into a possible link between serotonin levels and breathing during and after seizure,” said Lhatoo. “This may give hope that perhaps someday new therapies could be developed that may help prevent SUDEP. However, our study was small and much more research is needed to confirm our findings in larger groups before any treatment decisions can be made. It is also important to note that excess serotonin can be harmful, so we strongly recommend against anyone trying to find ways to increase their serotonin levels in response to our study findings.”

In addition to the small study size, a limitation of the study was that the timing of blood draws was not consistent.

The study was supported by the National Institutes of Health and the National Institute of Neurological Disorders and Stroke.

Reference: Qu, N., He, Y., Wang, C., Xu, P., Yang, Y., Cai, X., … Xu, Y. (2019). A POMC-originated circuit regulates stress-induced hypophagia, depression, and anhedonia. Molecular Psychiatry, 1–16. https://doi.org/10.1038/s41380-019-0506-1

As seen in https://www.technologynetworks.com

New device brings relief to people suffering from seizures

As seen in http://www.whas11.com

‘We take away their seizures’ | Local patients suffering from fewer seizures thanks to new brain implant

The NeuroPace device has been used on 14 people locally thanks to Norton. The device is helping reduce seizure frequency by 30 to 50%.

LOUISVILLE, Ky. — More than three million people struggle with epilepsy every day in America. That amounts to more than 119,000 across Kentuckiana.

The brain disorder, known to cause seizures, made news recently after a young Disney star died in his sleep. For some, medicine works to prevent these seizures. For others who don’t respond, there isn’t much relief, but that’s changing.

“Ninety-nine percent of the time, I had no memory of the seizure,” Tina Sizemore, a Louisville resident said. Sizemore says the seizures began her senior year of high school and haven’t stopped since.

“Most of my seizures are what they call ‘absent seizures,’ where I space out. It looks like I’m daydreaming and it’s only for a few seconds,” she said.

While seizures look different for each person, they can be equally damaging to the brain, especially for those who experience them on a regular basis.

“I was having probably two a week, which was quite a bit for a month,” she said.

So how do you stop them?

“Up until now, you had medications, anti-seizure medications. They will help out the majority of people, but there’s a small percentage of people they don’t help out,” Dr. William Dotson, the epilepsy director with Norton NeuroScience Institute said.

He says a new device, similar to a pacemaker, is making waves in this field, cutting down the number of seizures and their side effects. It’s called the NeuroPace.

“We’re getting very positive results. On average, we’re seeing a 30 to 50 percent reduction in seizure frequency. We’re also seeing a reduction in severity of the seizures as well. Some of our patients have had no seizures since they’ve had the device,” Dotson said.

The device is placed right under your scalp, programmed by a doctor to stimulate the brain when needed. It’s designed to prevent seizures at their source, often before symptoms start.

“It’s constantly reading your brainwaves. When it sees that seizure about to start, it applies a low voltage stimulus the patient doesn’t feel and it puts out that fire, puts out that seizure before it spreads to other parts of the brain,” Dotson said.

Sizemore received her implant a year ago. Each night, she downloads her brain activity onto a laptop, giving her doctors full access to her progress: from two seizures a week now to just two a month.

“I feel like I’m normal now. I’m a new person. I’m happy. I’m not depressed anymore. I’m a completely different person,” Sizemore said.

It’s a joy felt by everyone involved.

“They come to us and we change their lives. We take away their seizures. That’s what gives me joy,” Dr. Dotson said. “We want them to be able to work if they can, to have a regular life, to do the things they did before epilepsy.”

For Sizemore, there’s still one thing she longs to do. She hasn’t driven a car since the 80’s.

“It’s been so many years. It would be freedom again,” she said.

The NeuroPace has only been used on 14 patients here locally in the last year. You can find more information on the implant here.

As seen in http://www.whas11.com

Epilepsy patients may live longer with specialist care: U of C study

As seen in http://www.cbc.ca

People with the neurological disorder have mortality rates up to three times as high as those without

People with epilepsy who receive care from specialists may be less likely to die prematurely than their counterparts who don’t, a University of Calgary study suggests.

For the study, researchers followed more than 23,000 adults with epilepsy for an average of 7.5 years. Overall, the mortality rate during the study was 7.2 per cent — but it ranged from a low of 2.8 per cent for patients seen by neurologists specializing in epilepsy, to 5.6 per cent for patients who saw general neurologists, to a high of 9.4 per cent for people who didn’t see neurologists all.

“Adequate access to specialized care is increasingly recognized as associated with improved outcomes, not only in terms of seizure control and quality of life, but as we have demonstrated in this paper because of the association with decreased mortality,” said Mark Lowerison, lead author of the study and a researcher at the Cumming School of Medicine at the University of Calgary.

Deeper knowledge helps care: researcher

“When compared to non-neurologist, or general neurologist care, epilepsy specialists would tend to have deeper knowledge of epilepsy, common epilepsy comorbidities, and epilepsy management practices,” Lowerison said by email.

Epilepsy is a seizure disorder that is commonly caused by genetics, brain injuries or a stroke. About two-thirds of patients with epilepsy can control seizures with medicine, and about two-thirds of people who don’t get relief from drugs respond to surgical treatment, researchers note in JAMA Neurology.

Despite these treatment options, people with epilepsy have mortality rates up to three times as high as individuals without the neurological disorder, the study team writes.

In the study, people who saw neurologists or neurologists specializing in epilepsy were younger than patients who didn’t, and they were also healthier and had less severe symptoms. Patients who saw epilepsy specialists were 43-years-old on average, compared to 48 for people who saw general neurologists and 54 for people who saw non-neurologists.

Patients who saw specialists 51% less likely to die

After accounting for factors that can impact longevity like age, sex, and symptom severity, people who saw epilepsy specialists were 51 per cent less likely to die during the study than patients who saw non-neurologists. And people who saw general neurologists were 15 per cent less likely to die.

“Adequate access to specialized care is increasingly recognized as associated with improved outcomes, not only in terms of seizure control and quality of life, but as we have demonstrated in this paper because of the association with decreased mortality,” said Mark Lowerison, lead author of the study and a researcher at the Cumming School of Medicine at the University of Calgary.

Deeper knowledge helps care: researcher

“When compared to non-neurologist, or general neurologist care, epilepsy specialists would tend to have deeper knowledge of epilepsy, common epilepsy comorbidities, and epilepsy management practices,” Lowerison said by email.

Epilepsy is a seizure disorder that is commonly caused by genetics, brain injuries or a stroke. About two-thirds of patients with epilepsy can control seizures with medicine, and about two-thirds of people who don’t get relief from drugs respond to surgical treatment, researchers note in JAMA Neurology.

Despite these treatment options, people with epilepsy have mortality rates up to three times as high as individuals without the neurological disorder, the study team writes.

In the study, people who saw neurologists or neurologists specializing in epilepsy were younger than patients who didn’t, and they were also healthier and had less severe symptoms. Patients who saw epilepsy specialists were 43-years-old on average, compared to 48 for people who saw general neurologists and 54 for people who saw non-neurologists.

Patients who saw specialists 51% less likely to die

After accounting for factors that can impact longevity like age, sex, and symptom severity, people who saw epilepsy specialists were 51 per cent less likely to die during the study than patients who saw non-neurologists. And people who saw general neurologists were 15 per cent less likely to die.

Epilepsy Blog Relay: Caregiver Fatigue

As seen in livingwellwithepilepsy.com

We all have someone who cares for us a great deal. For those of us with Epilepsy, or any chronic condition, there’s always a person or two who have extra responsibilities. Even if we are independent and can manage our epilepsy, there are those family and friends who look out for us daily and notice any changes. I certainly do this for my family and friends. Sometimes it is very tiring.

I never really thought much about the concept of caregiver fatigue until I became a therapist. I enjoy what I do and love caring for others. If I’m honest, though, it can be exhausting. For me, that took a long time to admit. In my caregiver role, I always want to seem strong in my mind, body, and emotions. That’s not realistic. We all have times where we’re strong and times when we need extra support. I was almost 2 years into my job before I finally could admit to myself that I wasn’t well. I gave so much of myself to everyone else (professionally and personally) and I was running on empty. I wanted to keep pushing through–I’m pretty stubborn like that. I was exhausted (more so than usual). I had no energy or desire to do anything other than lay on the couch or sleep. I cried a lot and my headaches increased. I knew I was neglecting myself but I felt extreme anxiety about taking any time away from the care I gave to others. Ultimately, my entire life suffered and I had to take a step back.

How I use self-care

For me, it meant giving myself permission to take Saturday mornings and watch a little more TV than normal. It meant extra long, hot showers to relax. I spent less time on social media and left my phone at home more often. I spent more time writing with a nice smelling candle right next to me. I started doing yoga and let myself be comfortable with letting a dish or two go unwashed for an evening. It took some support from others to get into a routine of relaxing…weird, right? I needed people reminding me to slow down. I learned that it is okay to take that step back. It doesn’t mean I care any less or I don’t have the same drive to help others. I wasn’t ignoring others and I wasn’t undermining anyone else’s needs. I was giving myself rest and using self-care, something caregivers don’t typically think about.

Signs of caregiver fatigue

Don’t be afraid to admit you have some caregiver fatigue. It just means you have to take some time for self-care. It will be okay. The world will not fall apart when you take a nap or spend a couple extra minutes in the shower.  As hard as it might be, loosen some of your control and delegate tasks to others. Ask someone else to fold the laundry and sweep the floor. Remember, there are people who want to support you! Make yourself aware of signs of caregiver fatigue and take a moment each day to notice what you’re feeling. Once you care for yourself, you are able to care more for others.

As seen in livingwellwithepilepsy.com