Epilepsy Blog Relay: When does faith healing become medical neglect?

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Elaine on Faith Healing

Faith healing and demon possession are not medical terms but they are used to describe religious belief systems that give the believers in the system a sense of security when they experience uncertainty about a family member who has epilepsy. Sometimes in the network of family and friends around a person with epilepsy the question of “what does it mean?” is more compelling than “what is the best treatment?”

 

“Non-scientific thinking is often used to interpret the nature of epilepsy as a meaning experience not a medical condition.” Eadie, Mervyn J., and P. F. Bladin. A Disease Once Sacred: a History of the Medical Understanding of Epilepsy. John Libbey, 2001.

 

Existential or Physical

What does it mean? could be a question about a relationship with God: does God still love us? Are we being punished? Did someone sin? From a religious point of view, the real problem is existential, not physical. Existentially, as soon as the sin is resolved, the right person repents, God withdraws his punishment, then the physical problem will disappear. Existential questions like these are very subjective and the answers are likely to be very subjective also. While it is true that the emotional needs of the network of family and friends around a person with epilepsy are satisfied by the existential religious meaning and explanation about epilepsy, the actual outcome for the person with epilepsy is medical neglect. The real question to address is about the health needs of the person with the epilepsy, not the existential concerns of the family and friends in the network around the person with epilepsy.

Demons or Seizures?

Why say that a person with epilepsy is demon possessed? We are supposed to love, but at the same time, a person with epilepsy is often viewed as a threat because of being different. The difference and the sense of threat posed by the difference leads to the perceived need by Christian fundamentalists to “cast out demons.” The exorcism, then, can be perceived by Christian fundamentalists as healing, as an act of love, and shunning all in one action. The exorcism allows the Christian to meet the religious requirement to love while at the same time keeping enough distance to meet the human need for a sense of safety and security in the face of uncertainty and mystery and the perceived threat to safety. Identifying a person with epilepsy as being “possessed by demons” is a form of stigmatization in the guise of religious piety. Shunning and stigmatization are acts of fear, not love.

Self-care when it matters most

No matter how many other people fail to love us, we cannot fail to love ourselves. If we remain committed to ourselves, we are loved. People with epilepsy have fears. People around the person with epilepsy have fears. We can respond to our own fears and the fears of others by loving ourselves and taking care of ourselves. As we love ourselves, our fears begin to dissolve. If we let go of a little bit of our own fear the people around us might let go of a little bit of their fear also. We can be the people to start healing ourselves. I can be the person to start the healing freedom for myself and so can you.

Beloved Name

All day I inhale the healing fragrance of your name.
How many names does the Beloved have?
1, 2, 3, 4
A, B, C, D
Earth, wind, fire, water,
Winter, spring, summer, fall
North, south, east, west
Sun, moon, stars, sky
Wednesday, Thursday, Friday, Saturday
Mother, father, sister, brother
Birth, life, death, resurrection
How many names does the Beloved have?

All day I inhale the healing fragrance of your name.

Elaine M. Reeves


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Strategies for Improving Treatment Adherence in Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

For people with epilepsy, uncontrolled seizures (seizures that continue even while you’re on medication)1 can be a source of constant anxiety – wondering when and where one may happen.

Busy schedules, side effects and rigid medication schedules can make keeping seizures under control extremely challenging.2-4 Poor seizure control can lead to severe consequences, such as shortened lifespan, a higher risk of fractures and head injuries and ER visits, and the risk of emotional and cognitive difficulties in both adults and children.5-7, 8,9

Setting goals is a key step in taking charge of your epilepsy care.2,3 Susan Woolner, CPXP, is a Neuroscience Patient and Caregiver Support and Community Manager at Mercy Health Hauenstein Neurosciences based in Grand Rapids, Michigan. She works with adult patients in support groups for those living with epilepsy as well as other conditions. “Seizure freedom is more than just freedom from seizures,” she says. “It’s freedom from the stigma, shame and blame that come with epilepsy.”

The Quest for Seizure Freedom

Although seizures can occur for a number of reasons, a significant number of people reported experiencing seizures—including convulsive seizures—after missing a dose.10,11 According to one survey, nearly 50% of people with epilepsy report having a seizure following a missed dose.11

In one survey, two thirds of patients missed doses due to “forgetfulness,” and 37% of patients with epilepsy missed a dose once a month on average.2 For many, the goal of living seizure free can feel impossible. But it doesn’t have to be.

“It’s critical that patients take their medication exactly as directed, at the right times, and at the right doses, otherwise you increase the risk of having a seizure,” said Dr. James Wheless, Professor and Chief of Pediatric Neurology, University of Tennessee Health Science Center.2 “Though treatment lapses are a part of life with this disease, as physicians, we should be doing all we can to make treatment regimens as simple as possible, which could mean fewer daily doses, fewer pills, once-daily dosing and giving patients the tools they need to aim for seizure freedom.”12

Treatment Options and Reducing Missed Doses

When doses are missed or the medicine isn’t taken as prescribed, the level of medicine in the body decreases. Studies have shown that certain medications that are long acting may reduce the impact of missed doses.13 Different treatment options may help minimize the risk of seizures.

“Medications that are designed for sustained release can stay in the body longer, which may help patients better manage their treatment regimen,” said Dr. Wheless. 13

 

People with epilepsy and their caregivers who struggle with uncontrolled seizures and have a hard time taking treatment as prescribed should ask their healthcare provider about strategies for keeping their treatment on track. These may include10,14,15:

  • Devise a comprehensive, realistic plan of action for improving adherence
  • Develop reminders to help increase adherence
  • Adjust treatment regimen to your daily lifestyle
  • Consider medications that offer once-daily dosing in the form preferred and are effective at treating convulsive seizures.

To learn more about the importance and possibility of preventing breakthrough seizures, visit https://www.epilapsey.com/patient.

REFERENCES

  1. Bonnett LJ, Powell GA, Smith CT, Marson AG. Breakthrough seizures—further analysis of the standard versus new antiepileptic drugs (SANAD) study. PLoS ONE. 2017;(12): e0190035. https://doi.org/10.1371/journal.pone.0190035
  2. Paschal AM, et al. Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. Epilepsy Behav. 2014;31:346-350.
  3. O’Rourke G, O’Brien JJ. Identifying the barriers to antiepileptic drug adherence among adults with epilepsy. Seizure. 2017;45:160-168.
  4. Epilepsy Foundation. Noncompliance. https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/noncompliance. Accessed May 28, 2019.
  5. Devinsky O, Hesdorffer DC, Thurman DJ, et al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol. 2016;15(10):1075-1088.
  6. Friedman DE, et al. Recurrent seizure-related injuries in people with epilepsy at a tertiary epilepsy center: A 2-year longitudinal study. Epilepsy Behav. 2010;19(3):400-404.
  1. Divino V, Petrilla AA, Bollu V, et al. Clinical and economic burden of breakthrough seizures. Epilepsy Behav. 2015;51:40-47.
  2. Manjunath R, Paradis PE, Parise H, et al. Burden of uncontrolled epilepsy in patients requiring an emergency room visit or hospitalization. Neurology. 2012;79:1908-1916.
  3. Thompson PJ, Duncan JS. Cognitive decline in severe epilepsy. Epilepsia. 2005;46(11):1780-1787.
  1. Hovinga CA, Asato MR, Manjunath R, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. Epilepsy Behav. 2008;13(2):316-322.
  2. Cramer JA, et al. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338-342.
  3. Eatock J, Baker GA. Managing patient adherence and quality of life in epilepsy. Neuropsychiatr Dis Treat. 2007;3(1):117-131.
  4. Wheless JW, Phelps SJ. A clinician’s guide to oral extended-release drug delivery systems in epilepsy. J Pediatr Pharmacol Ther. 2018;23(4):227-292.
  5. Osterberg L, Blaschke T. Adherence to medication. N Engl J Med. 2005;353(5):487-497.
  6. Medic G, et al. Dosing frequency and adherence in chronic psychiatric disease: systematic review and meta-analysis. Neuropsychiatr Dis Treat. 2013;9:119-131.

NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Patient-Provider Disconnects In Epilepsy: National Survey Evaluates Perceptions

The “Seize the Truth About Epilepsy Perceptions” (STEP) Survey, conducted online by Kantar Health on behalf of SK Life Science, Inc., was focused on adult patients with epilepsy to understand the current state of epilepsy in the U.S., with the ultimate goal of fostering better communication between patients and their care teams.[1]

The survey results revealed important disconnects that must be addressed in order for open, honest discussions to take place between patients, caregivers and healthcare providers (HCPs). The survey showed that epilepsy affects many aspects of daily life such as living independently, driving, holding a steady job, and maintaining solid/close relationships.

Although there are several areas that comprise the epilepsy journey, epilepsy also has an emotional effect on patients and caregivers. Approximately 80% of patient and caregiver respondents said they feel some form of isolation due to epilepsy. After all, epilepsy has a much greater impact on a person than the physical symptoms alone.

In fact, half of patients and caregivers surveyed feel that epilepsy is “a burden that will never go away.” More than 3 out of 4 patients and caregivers struggle to feel “normal,” with a constant fear of not knowing when the next seizure will come.

 In highlighting significant disconnects that occur in conversations among these groups, the STEP Survey has helped draw attention to key areas we can address to ensure patients receive the best possible care. Take a look at the infographic below to learn more about the insights. For more information about the STEP Survey, please visit www.WebMD.com/EpilepsySurvey.

[1] SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019.

Epilepsy Blog Relay: The Complicated Goal of Seizure Freedom

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Jamie’s Story

In 2011, I started a blog about my running evolution, life as a single mom, and my journey with epilepsy. At the time, I was off medicine since it had been a substantial amount of time between seizures. My epilepsy reared its ugly head again with cluster seizures. As a result, my neurologist prescribed medication again. My doc told me I was to not give myself permission to take myself off it unless I had a doctor’s approval.

Fast forward to 2014, I had another seizure when I was pregnant with my second child. This was after arguing with my doctor about not needing to proactively take a Class D medicine that could potentially harm my unborn child.

I thought I had it all under control.

Excerpt

Honestly, I know I am blessed and fortunate.  I have been seizure free for 5 and a half years, and rarely have any complaints.  I do have memory issues, and currently am working through those with a LOT of reminders, sticky notes, and alerts from Siri (ha- thanks iPhone).  At the same time, I realize that it could be so much worse- and that is why I am an advocate for people living with Epilepsy.

The majority of my life I have lived seizure free.  Yes I was a premie, and had seizures in the NICU- however my next one wasn’t until I was 5 years old.  Then, the following one was when I was 21.  16 years of freedom, and at that point doctors believed I had outgrew it.

After that I had cluster seizures from age 21 to 30… however with years in between each one.  We arent’ too sure of why I have them-  I personally believe it was my lifestyle.  Extremely stressed, in an unhealthy relationship for the first half of those 9 years, too much partying/alcohol, and two of those seizures were when I was pregnant.

I have learned my lessons- and have some suggestions on ways you can improve your lifestyle with the hopes of becoming or staying seizure free.

READ MORE


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