Living and Coping with Epilepsy - Research Paper Example

?[The [The [The Traditional research: Living and coping with epilepsy. Introduction Epilepsy isone of the conditions that require close attention when managing. It affects anybody at any age and therefore presents varying challenges as far as its management is concerned. It was found that more than 30% of epileptic cases cannot respond to seizure control even with medication (Duncan et al, p 1087-100). It is quite refreshing to learn that some epileptic cases are confined to childhood and disappear later in life. As a child, I was told that epilepsy is ‘a curse just next to madness’. As children growing up, we were told to avoid people who had epilepsy since we would be infected in the event we came into contact with them. Out there live neglected people, who are; ignored, shunned, abused and find it hard to cope; these are epilepsy patients. A lot of other people hold such believes and look at epilepsy as mythical. To dispel some of the daunting myths about epilepsy and get accurate data about the condition, the researcher had to raise an investigative case on how patients cope with epilepsy amidst uninformed public. Significance of the inquiry The study was significant to my professional career objective as a means of exposure. This type of exposure enabled me gain insight on how the society considered patients that we treat and discharge in hospital. It has been a job shadowing experience that enabled me to learn more about my future career. Other medical practitioners and health officers may find the study vital when administering aftercare treatment. It is hoped that policy makes would also find aspects that influence policy on epilepsy and other conditions as highlighted in the study. Central Inquiry Questions Investigated. Following the nature of the disorder, primary and secondary research sources will seek to answer the following components in order to answer the investigative question: 1) What is epilepsy? 2) What is General Outlook for Patients with Epilepsy? 3) What are the health messages shared with the patient and the family of the patient? 4) How is epilepsy managed? 5) How do people cope with epilepsy? 6) What causes the Sudden death in epilepsy? To answer these questions, research was conducted primarily by way of peer reviewed research and publications, along with some reliable and authoritative online and web resources. Part 2: Reading Research Findings What is epilepsy? Fisher et al defined epilepsy as a condition in which there is an abnormal discharge of neurons to the brain causing a deviation from the normal function of the brain. According to him epilepsy should be understood as a syndrome with varying symptoms Fisher et al 470-2. Duncan et al stated that consequence of surgery of the brain has occurrence of epileptic seizure in patients who are recovering. In fact epileptic patient can lead a normal life despite the fact that epilepsy is controlled but not cured using medicine. It was found that more than 30% of epileptic cases cannot respond to seizure control even with medication. To dispel some of the daunting myths about epilepsy, the researcher had to look at the condition in general (Duncan et al 1087-100). Even though its prognosis in most cases is poor, the good news is that not all cases are life long. Some epileptic cases are confined to childhood and disappear later in life. However, Epilepsy develops in stages progressively from one stage to the other finally ending at death. Some epileptic cases end up as psychiatric cases. It is known that epilepsy is either congenital or acquired. The intelligent quotient of persons suffering from epilepsy is low compared to other persons who are normal. An epileptic patient with congenital (inborn) deteriorates in his brain function as it progresses. The characteristic of epileptic patients varies but in majority of the cases patients have the following signs as observed; seizure, loss of consciousness and staring before falling down then tongue biting, and groaning. The patient would then enter a sleep stage where the patient sleeps for almost 3-4hrs after falling then when he awakes the patient is confused and can easily be a victim of accident at this time. Management of this condition varies as some may prefer drug therapy while others may wish to make use of non drug therapy. Study by Arida emphasized on physical exercise as a management practice. Physical exercise is said to improve management of seizure (Arida 422-431). Patients with epileptic are given identification card medical alert bracelets and other documents to walk with all the time. The patients’ relatives are given health education about what to do in case a patient develops seizures. The first aid option of the seizure would include; positioning of the patient to allow airway and prevent suffocation. They are always advised to try every possible way to prevent the patient from securing injuries during an acute seizure. What is General Outlook for Patients with Epilepsy-prognosis? Study by Baker et al reported that that many people among the general population all over the word have epilepsy in millions but just a few numbers are free to talk about it but just a little number is free to talk about it. The research established that there are several myths and misconception about this condition as it is life threatening (Baker, et al 352-361). People tend to develop stigma against people with epilepsy. This indicates how ignorant the larger population is about epilepsy. Case in point is my cousin who was of good health from childhood but suddenly developed convulsions at the age 20 years. We considered him intelligent since he did well in school until one day when he joined college and was referred back home on account of concussions. My parents warned us against associating with him because he had developed epilepsy. Most people with epilepsy are usually children between ages 1-16 years. Parents to these patients feel some level of embarrassment Baker, et al (352-361). They go to such extremes of hiding the children from the general population. This frustrates patients with this condition making them feel lonely and some even opt to drop out of school. Their exist a negative attitude toward epilepsy fuelled by believes and ignorance about the condition. For this reason there is stigma in places of work and schools. What are the health messages shared with the patient and the family of the patient? Ramaratnam et al advise patients to see a doctor for medical prescription together with the family members. Prescribed medication should be used throughout the period of sickness. Following prescribed instruction is important in avoiding being resistant to medication or reduces the episodes of seizure. The patient should also be well versed with the side effects of medicine and to report any incase it occurs for medical attention (Ramaratnam website). The patient is advised against smoking in case of a smoker and to cease excessive alcohol intake as these triggers seizures. Patients are advised to prevent seizures through supplementing the drug therapy by use of other nondrug therapies that include relaxation therapy and biofeedback training. They should also identify the triggering factors to there seizures and avoid them to include light for those who encounter seizures as a result of photo sensitivity. Further, patients should also have a need to wear a medic alert bracelet or medic necklace or always have a caution card. This will be vital incase a patient encounters a seizure away and other people didn’t know about the condition. Studies show that avoiding all sources of stress, fatigue or anything leads to loss of sleep will control seizure. Health education and cancelling should be done to the entire family about the condition to help reduce stigma to the patient and that they should help take care of the patient thought. The family members should undergo training on how to handle and help the patient during a seizure and how to prevent frequent numerous attack to the patient they should always try to protect the patient from sustain injuries especially during an attack as this usually poses danger to the life and existence of the patient. How is epilepsy managed? Birbeck said that Epilepsy is a condition with poor prognosis and therefore has no cure but control of seizures is necessary. Management can be done after diagnosis by a physician through ways such as the use of drugs, nursing intervention patient and family involvement. Medically antiepileptic drugs are used to control seizures (Birbeck 535-38). But in case a seizure occurs, first aid is done to prevent a patient from suffocation and this includes ensuring that patient’s airway is open, assisting in ventilation if the patient does not breathe spontaneously after a seizure protection from sharp objects that cat cause injuries during a seizure. Positioning the patient in a recovery position is vital during dribbling (Arida 607-15). Usually the patient gets disoriented during and after a seizure and is hostile therefore one should stay with the patient until the seizures have passed then orientate the patient. Wiebe et al included the use of antiepileptic in their study on surgery and control of epilepsy hydantoin (phenytoin) is a drug that blocks the synaptic potential and propagation of electrical discharges in the mortar cortex which blocks the transport of sodium and therefore stabilizing the membrane sensitivity. Barbiturates (phonobabitol) are also used. It depresses the post synaptic excitatory discharge hence controls the level of neurons discharge to the brains (311-18). Family and friends should be involved in managing the patient and health messages given to them to include first aid management, never to restrain the patient during a seizure. It is advisable to remove or loosen tight clothes and never to force an airway between drenched teeth of the patient. Surgery is an option for people who remain resistant to treatment. The treatment goal of surgery in case of epilepsy is total control of seizures. However, we have some case in which medical treatment might still be handy. To begin the procedure, the physician will have to confirm the condition and determine whether recitative surgery will affect normal brain functioning by evaluating for epilepsy surgery, epileptic focus is located. Wiebe et al looked some cases that use WEDA test or magneto encephalography (MEG) as supplementary tests for epilepsy. Common surgeries call for the resection of lesions like tumors that result in treatment of seizure caused by these lesions. The removal of front potion of the temporal lobe is the most common surgery (Wiebe et al 311-18). Despite its efficiency, most patients choose not to undergo surgery for fear of uncertainty after brain operation. Some believe that this procedure may lead to insanity. Wiebe et al said “Palliative surgery can be administered to reduce the severity or intensity of seizures” (311-18). Such procedure in important as it prevents injury related to falling down as a result of lost consciousness. This surgery is performed when there is no other means of controlling seizures since the side effects of the surgery may be adverse. Patients may have paralysis effects on the area opposite to the part of the brain that was removed during seizure. For this reason, surgery is a reserve for patients who have exhausted other treatment options. Safety and side effects of the treatment option. Study by Birbeck show that a majority of the side effects are “mild and dose related” (537) these can be managed by using small and effective quantity of dosage. Examples may include unsteadiness in gait, mood changes and sleepiness. We have anticonvulsant medications that have idiosyncratic side effects which will not be predicted by dosage. And these include; aplastic anemia, liver toxicity (hepatitis), or drug rashes. For surgery, it is already noted that Patients may have paralysis effects on the area opposite to the part of the brain that was removed during seizure. Lastly, Safety should be taken when we look at the effects of medication in cases of pregnancies. How do people cope with epilepsy? Legal and judicial considerations prescribe that persons suffering form epilepsy are forbidden from certain activities. For instance they are prohibited from activities involving continuous vigilance such as; vehicle and machinery operation. Some cases of exemptions are also provided for those who can prove that there condition is stable. But my question and worry is whether there is anybody to bare sole responsibility in case an epilepsy patient sustains injuries while working or driving. It is said that in USA, people with epilepsy can only drive if their condition meet driving and licensing requirements. United States Code of Federal Regulations, Title 14, sections 67.109(a) (1), places the burden on the patient to report the condition in places of work and to Driver and Licensing Board. It’s then decided whether to restrict or allow a patient drive. In UK, patients have the responsibility to inform the Driver and Vehicle Licensing Agency DVLA if they are epileptic (epileptic, action 2009). DVLA rules prescribe that those who have had seizure within six months of medication change have there license revoked. A duty of care is on the doctor who becomes aware of a patient with uncontrolled epilepsy driving to break a duty of confidentiality in order to inform the DVLA. The doctor will inform the patient of disclosure and explain why their failure to notify the authority would be a breach of duty. Regulations in USA prescribe that epilepsy patients are automatically disqualified for certification required for any class of pilot license. The final decision to this end is made by FAA headquarters in USA. We have rare exemption in cases of people who had epilepsy during childhood and have remained seizure free in adulthood without need of medication (Thomas, website). In my opinion such people should be allowed to have a driving license and pilot license. In addition it is my submission that cases of epilepsies in places of work should be closely monitored and supported when need arise. Managers and employer with such employees should ensure education of the worker in an attempt to help during moments of seizures. Special consideration should be taken in institutions of learning and leisure places in regard to identification of these case and offering help. What causes the Sudden death in epilepsy? Epilepsy normally ends in sudden death but for a few cases. The causes may be unexplained cardiac arrest or respiratory failure (Tomson, 1021-31). Sudden Unexplained Death in Epilepsy (SUDEP) is used to describe people who die suddenly as a result of epilepsy. It’s worrying that the average age of those dying from SUDEP are estimated to be between the ages of 25-30 year old. I can attribute this to stress and depression which is common at this age and because such cases are rare in children. It’s also worth noting that in addition to seizure attack during sleep; poor seizure control plays a part in SUDEP. According to research by World Health Organization, (2009), 50,000 people in USA die yearly on account of SUDEP and other seizure related causes. Hanna et al, “The National Senital Audit Of Epilepsy-Related Death” addressed the problem and reported that “more than 1,000 deaths do occur in UK every year as a result of epilepsy" (website). Therefore, the risk associated with epilepsy is always ignored yet most deaths are avoidable. It’s indicated that some patient may succumb because of poor intervention strategies. Stress, I believe, has a role in this. This maybe stigma related or any other stressing factor. Lathers, et al pointed out that epileptic reaction in the brain has psychological origins that may lead to fatal end of a patient (website). Part 3: Primary Research Interview Findings The researcher designed and conducted two interviews to benchmark the literature presented in reading research. One of the people chosen for interview was Lindsey and was chosen because he had had epilepsy since his childhood, while the other (Kewell) had acquired it during adulthood. The two are close friends and I met them in their support group. The first interview, as documented in Appendix A, was with Lindsey while the second interview, as documented in Appendix B, was with Kewell. The goals of the primary research were to: a) To relate with reading research. b) To establish management options for epilepsy. c) Examine how patients with epilepsy cope with other diseases. d) Inquire about the effectiveness of the government and social intervention. e) Assess challenges of epilepsy such as; lack of social support, stigma and attitudes towards life. From the interviews, it was obvious that stigma was prevalent. Lindsey and Kewell reported that the public still look at them as public nuisance. Kewell in particular pointed out that such rejection is heartbreaking. Indeed it is dehumanizing since such patients feel isolated and unwanted. In view of this, the public avoids them for fear of the results that come with seizures. In our reading literature, we said that an epileptic patient is hostile after the seizure (Holmes, et al. (2008). I think this could explain the stigma. To over come seizure, an epilepsy patient may need help from the public that shun them. The public must be educated to improve its knowledge about this condition. Concerning challenges faced by people with epilepsy, the researcher found out that stigma and finance are very prevalent. Kewell indicated that treatment of epilepsy is costly and described as burden to the patient. This is because one has to be on medication throughout life. Even though we have government intervention, it’s hardly able to relieve the burden from consumers. In addition, the market value of an epileptic patient is low. They have job restrictions that impact on their income. Lindsey indicated that her family is shy and sometimes embarrassed because of her condition. The two interviewees confirmed that family support was the background to management of epilepsy. Lindsey described her family as great and indeed this will give one a reason to live. Both Lindsey and Kewell indicated that their families are instrumental when it comes to management of this condition. They also reported that public knowledge on epilepsy was wanting. Part 4: Analysis and Conclusions Through intensive reading and the interviews carried out, the researcher was able to answer the intriguing questions of this research. It stood out clear that coping with epilepsy presented new challenges. To begin with, the society has not accepted people living with epilepsy. It’s heartbreaking to note with concern that epilepsy patients are considered a nuisance to the public. The researcher also noted that the general public is not well informed about epilepsy. Epileptic patients are given medic alert bracelet or medic necklace or a caution card. This will be vital incase a patient encounters a seizure away and other people who are unaware that the patient has the condition. This way, they could get assisted in case the condition setup away from their family members who are trained to handle seizures. Myths and misconception was a common factor. Believes surrounding epilepsy has left patients stigmatized by the general public. Through the interviews attached in appendix section of this paper, the researcher leant that some people see epilepsy as death penalty. Government support was also found to be minimal. In order to cope, epilepsy patients need a stress free environment since stress triggers seizure. On treatment options, it was found that medical therapy coupled with other therapies like bio-feedback training can assist. It was with difficulty that the researcher learnt that most epileptic cases ended in death despite sufficient management practices of epileptic seizures. Studies by Arida et al reported that physical activities would be of great importance to patients with epilepsy (Arida et al 607-16) As confirmed from the interviews, most patients choose not to undergo surgery for fear of uncertainty after brain operation despite its efficiency. Some believe that this procedure may lead to insanity. Wiebe, et al said that Palliative surgery can be administered to reduce the severity or intensity of seizures. This surgery is performed when there is no other means of controlling seizures. Reading research shows that the side effects of surgery may be adverse. Patients may have paralysis effects on the area opposite to the part of the brain that was removed during seizure (Wiebe et al 311-18). For this reason, surgery is a reserve for patients who have exhausted other treatment options. Part 5: Projections As this research led to answers for the initial central questions as listed on page two of this report, new questions emerged. One of the questions I would like to further explore is whether there is a mechanism of controlling seizure during sleep. It was noted that most epileptic meet there end during sleep. In addition, I am curious to know why postmortem results of patients who succumb to epilepsy usually reveal lack of abnormality. It was revealed in the reading literature that epilepsy normally ends in sudden death but for a few cases. The causes may be unexplained cardiac arrest or respiratory failure (Tomson 1021-31). Sudden Unexplained Death in Epilepsy (SUDEP) is used to describe people who die suddenly as a result of epilepsy Further, I am interested in inquiring into my interview question about patients’ relationship with the public (with a different title of course) by undertaking a survey to investigate myths and believe about epilepsy. It was shocking to learn that some people believe that epileptics are possessed by demons; to this end, public education on epilepsy is very minimal it may be a realistic solution to educate the public, though even I thought it was ridiculous initially but after this research I see the need. It goes without saying that most of epilepsy patient die because of poor management of seizure. Public education on diseases is an area of interest. At the beginning of this inquiry, I set out to examine how patients with epilepsy cope but the data I researched instead contradicted my original hypotheses and expectations. I knew, for example, that patients with epilepsy led normal life apart from that moment of seizure. I didn’t know that deaths resulting from epilepsy were widely prevalent in the US, with 35% of epileptic cases dying within ten years after being diagnosed with epilepsy. Studies by Arida et al reported that physical activities would be of great importance to patients with epilepsy (Arida et al 607-615). However, to combat such negative health outcomes, it is in question of how management practices are put in place. Appendix A Interview 1 Name: Lindsey Ben Date: April 20, 2012 Time: 2:30pm- 315pm Age: fifteen years Reason Chosen: Was born epileptic his is either genetic or acquired during birth congenital 1. What challenges do you face especially when dealing with your peers? The most annoying is rejection especially at school. Most kids will make fun of my condition. I think they are ignorant. 2. How do your parents treat you? My parents are great they are caring and loving however, I think sometimes they are embarrassed and find it difficult to accept this condition. 3. Can you manage the condition on your own? I can avoid risk factors as explained to me by my parents and doctor. But for seizure I would need help. 4. Are there any special programs designed for people with epilepsy that you know of? Yes, their is a CDC (Center For Disease Control And Prevention.) its aim as explained to me is to educate the general public on epilepsy in order to alleviate stigma. They work for the better of us. 5. Are you on any treatment? If any; a) What type of treatment? b) What other intervention strategies are you undertaking? Yes, I use antiepileptic as advised by the doctor. I don’t use herbal medicine as an intervention I also use relaxation therapy and bio-feedback training as intervention strategies. 6. Why did you choose this method of treatment or intervention? I was advised by the doctor. It subdues my condition. 7. Is there any alteration in your eating habit? Yes, am restricted on some diets 8. Given a chance would you go for surgery? Absolutely No, I think my condition may worsen. Appendix B Interview 2 Name: Kewell James Date: April 20, 2012 Time: 11:30 AM-12:30 PM Age: 27 years old Reason Chosen: acquired case- was not born epileptic.. 1. How do you manage the condition (do we have instances of stress)? I strictly use prescribed medicine. In addition I have shared information about my condition with my workmates and friends, they are free with me. 2. Were you prepared to handle this condition? No, you can never plan to be epileptic 3. Were you inducted after learning about the condition? Yes, I under went vigorous guidance procedure on acceptance and management of my condition. 4. What are some of the challenges you are facing, how do you handle them? Finances, especially considering the cost of treatment therapy. In addition, some people keep distance in fear of the fact that I have seizure. I work on a strict budget. I try to be stress free. 5. Do you give any special attention to health effects associated with epileptic? Yes, am advised against smoking and excessive alcohol consumption. 6. How did you become epileptic? I was involved in a road traffic accident that led to brain trauma. 7. How did you cope on learning about your condition? I had to accept and adjust after attending guiding and counseling clinics. 8. What is your take on social and government support of people with epilepsy? I am less concerned about social support but the government supply medication at subsidized fee. 9. Are you restricted from any normal routine? Yes, quite a couple. For instance, I can’t drive, can’t work in some factories. 10. How do you rate public knowledge about epilepsy? Poor. People still have stigma. 11. How do you rate your family involvement in helping you cope? a) Provision; they are supportive b) learning about your condition; were very cooperative c) Emotional support; I get it in excess. 12. Are you restricted on some drug, budgets, and activities? Yes, before I take any drugs, I have to consult the doctor. 13. Are you connected to any people with epilepsy? That is social group, an organization… Yes, though we try to keep it a secret to avoid stigma. 14. Lastly what are the pressing concerns raised by people with epilepsy? Dismissal from work because epilepsy, stigma and diverting our income to medication. Thank you very much for your time. God bless you. Work cited Birbeck, Gretchen, Ron Hays, Xinping Cui, & Barbara G. Vickrey "Seizure reduction and quality of life improvements in people with epilepsy". Epilepsia 43 (5) (2002): 535–538. Web. 19 April, 2012. Baker, Gus, Jacoby Ann, Buck Deborah, Stalgis Carlos, Dominique Monnet et al. "Quality in life in people with epilepsy: a European study". Epilepsy 38 (3): (1997): 353–362. Web. 19 April, 2012. Fisher, Robert, Walter van Emde Boas, Warren Blume, Christian Elger, Pierre Genton, Phillip Lee, & Jerome Engel J. "Epileptic seizures and epilepsy: definitions proposed by the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE)". Epilepsia 46 (4): (2005): 470– 2. Print. Thomas, Browne & Gregory Holmes. Handbook of epilepsy (4th ed.). Philadelphia: Lippincott Williams & Wilkins. (2008). Print. Lathers, Chire et al. Epilepsy and Sudden Death. Dekker, NY, NY. (1990). Web. 19 April, 2012. Wiebe, Samuel, Warren Blume, & Girvin John. "A randomized, controlled trial of surgery for temporal-lobe epilepsy". N Engl J Med 345 (5) (2001): 311–318. Print Ramaratnam, Sridharan, Gus Baker, & Goldstein Laura. "Psychological treatments for epilepsy". Cochrane Database Syst Rev (3): (2008). CD Hanna, Jane, et al, The National Sentinel Audit of Epilepsy Related Death. London. The Stationary Office, (2002). Print Tomson, Torbjorn, Nashef Lina, & Ryvlin Philippe. The Lancet Neurology 1 ... "Sudden unexpected death in epilepsy: current knowledge and future directions". Lancet Neurology 7 (11) (2008): 1021–31. Duncan, JS; Sander, JW, Sisodiya, SM, & Walker, MC. "Adult epilepsy". Lancet 367 (9516): (2006 Apr 1) 1087– 100. Print. Arida RM, Scorza FA, Scorza CA, Cavalheiro EA. "Is physical activity beneficial for recovery in temporal lobe epilepsy? Evidences from animal studies". Neurosci Biobehav Rev (33) (2009): 422–431. Print.  Arida RM, Cavalheiro EA, da Silva AC, Scorza FA. "Physical activity and epilepsy: proven and predicted benefits". Sports Med. 38(7) (2008): 607–615. Print.  UK Driver and Vehicle Licensing Agency Guide to the Current Medical Standards of Fitness to Drive. Information for drivers can be found in Medical Rules - Group 1 License Holders. Web. 19th April, 2012. Epilepsy Action (2009), Driving law relating to seizures. Web. April 20, 2012. United States Code of Federal Regulations, Title 14, sections 67.109(a)(1), 67.209(a)(1), 67.309(a)(1). Web. 21st April 24, 2012 "Epilepsy". World Health Organization. January 5, 2012. Web. April 20th, 2012 1. Thomas R. Browne (Author) 2. › Visit Amazon's Thomas R. Browne Page 3. Find all the books, read about the author, and more. 4. See search results for this author 5. Are you an author? Learn about Author Central Read More