Narcolepsy Research – Reaching for a Cure

January 16, 2012 By Leave a Comment

Narcolepsy is a very serious, chronic sleep disorder that affects one in every two thousand people in the United States alone. Worldwide, the estimates of people living with the symptoms of narcolepsy reach over three million. Research on narcolepsy is among the top in all medical research fields, due to the seriousness of this condition. A better understanding of narcolepsy will ultimately lead to better understanding of other sleep disorders, which is why so much attention has been drawn towards narcolepsy research.

To research narcolepsy accurately, scientist not only do laboratory sleep studies, but they also depend on the information provided by the patients themselves. By keeping journals or recording episodes that occur, a patient can help researchers discover side effects of medications, episode time frames and so on. Unfortunately, this side of the research is needed, but since correct diagnosis is hard to determine, making it a truly priceless side of the research when it is attained.

Narcolepsy Basics

Narcolepsy is a chronic sleep disorder that has two different international classifications: narcolepsy without cataplexy and narcolepsy with cataplexy.

Narcolepsy has four major symptoms: Excessive Daytime Sleepiness (EDS), Sleep Paralysis, Hallucinations and cataplexy.  Although there are several secondary symptoms, these are the classic symptoms seen in most patients.

EDS is pretty straight forward.  Patients with narcolepsy experience a desire to sleep that is so strong it becomes an irresistible need.

Sleep Paralysis is occasionally experienced by a large number of people without narcolepsy.  Narcolepsy patients that have sleep paralysis as a symptom tend to experience it more often.  Sleep paralysis happens in the twilight between the sleep and wake cycles. The mind is not yet asleep but the body undergoes the paralysis that usually comes with REM sleep.  Often, the subject will also experience hallucinations.

Hallucinations are common for the narcoleptic. Hallucination research and narcolepsy research show that narcolepsy patients have a similar amount of hallucinations as patients suffering from schizophrenia but narcoleptic hallucinations tend to be more visual whereas schizophrenics have more auditory hallucinations.

Cataplexy is experienced by seventy percent of narcoleptics. Cataplexy is peculiar to narcolepsy and it is extremely rare to have cataplexy without narcolepsy.

Cataplexy is the sudden loss of control over muscle function. The affected muscles become lax and lose tone.  Cataplexy usually affects the face or neck, but can appear in any muscle group.  In an extreme instance, the entire body can collapse. The oddest and most frightening thing about a cataplexy attack is that the patient remains alert and awake the whole time. Cataplexy is triggered by strong emotions.

Data collected during research and narcolepsy patient information led scientists to give narcolepsy with cataplexy its own diagnosis.

Research on Narcolepsy

In the early 1970’s, Dr. William Dement founded the Stanford University Sleep Clinic, which was the first clinic in history to specialize in sleep disorder studies. This research center was the first to discover that narcolepsy-cataplexy was linked to a deficiency in hypocretin. This research has been proven in both animal subjects and in human subjects. The Stanford Center for Narcolepsy was created in the 1980’s as an extension of the Department of Psychiatry and Behavioral Sciences. Today, this facility treats hundreds of narcolepsy patients per year, with many patients freely participating in other sleep studies as well. There have been hundreds of articles written on narcolepsy that give credit to the name of this facility for its extensive research of narcolepsy.

Hypocretin Research and Narcolepsy-Cataplexy

The cause of narcolepsy-cataplexy, in ninety percent of cases, is accredited to a lack of hypocretin-1 and hypocretin-2. The cause of narcolepsy without cataplexy remains a mystery. These molecules that are created in the hypothalamus (hypo) have a resemblance to the gut hormone called secretin (cretin), thus named hypocretin. Of the many billions of cells in the brain, only ten to twenty thousand produce hypocretin. The hypothalamus is also responsible for a host of basic functions of the body. It controls hunger, sexual impulses, blood pressure and sleeping. Hypocretin-1 (not hypocretin-2) can be measured in the cerebrospinal fluid, but not by blood or tissue samples. To collect this cerebrospinal fluid, a spinal tap is necessary. Most patients (about 90%) with narcolepsy-cataplexy have a zero percent level of hypocretin-1.

When trying to control the symptoms of narcolepsy, many things need to be considered. First, the proper diagnosis of the condition is critical. Does this case have cataplexy? Hallucinations?  By asking these types of questions, a doctor can more accurately diagnose narcolepsy. Along with extensive questioning, there are tests and studies that can help in the diagnoses.

A nocturnal Polysomnogram is a test performed with electrodes placed on the patients scalp and measures the electrical activity in the brain and in the heart. This test takes place over night at a medical research facility designated by a physician.

A Multiple Sleep Latency Test (M.S.L.T.) is another test used to determine how long it takes a person to fall asleep during t day. The patient is asked to take five naps, each around two hours apart. Patients suffering with narcolepsy usually fall asleep very quickly and enter into R.E.M. sleep almost immediately.

Management of Narcolepsy

Narcolepsy and Research about its behavior has given doctors a few ideas into the treatment and prevention of its symptoms.  If a patient has mild enough symptoms, then a simple change in lifestyle may be all that is required.  More often, drug treatment in the form of stimulants and antidepressants becomes necessary.

Many times, the fact that there is no cure for this disease causes a feeling of helplessness, but with research awareness in narcolepsy, there is hope. With comprehensive management, a patient with narcolepsy can live a relatively normal life.

Narcolepsy Treatments

  • Lifestyle Changes
    • strict bedtimes
    • strategic daytime naps
    • avoid stimulants like coffee
    • make the people in your life aware of your disease
  • Drug Treatment for EDS
    • Stimulants
      • Amphetamines
      • Modafinil
      • Selegiline
  • Drugs for Cataplexy
    • Tricyclic Antidepressants
      • Imipramine
      • Protriptyline
    • Selective serotonin reuptake inhibitors
      • Prozac
      • Paxil
      • Zoloft
    • Sodium oxybate
      • Xyrem
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The Narcolepsy Disability Page

January 15, 2012 By Leave a Comment

The most common questions asked about Narcolepsy….

The disability narcolepsy is not a common disorder.  It isn’t often discussed by laymen or in public media.  There is little information about it that is presented in an easy to understand, non-technical format.  To give a diagnosis of narcolepsy, need to be considered.

What are the signs of Narcolepsy?

There are several signs of Narcolepsy.

  • Narcolepsy disability causes cataplexy. Cataplexy is a sudden loss of control while awake, which can be triggered by strong emotions such as laughing or crying. Attacks can happen at any time of the day.
  • Another sign of narcoleptic disability is hallucinations. Some individuals that have been diagnosed with disability sometimes experience vivid, sometimes frightening, visual sensations while falling asleep or while awakening.
  • Another sign of Narcolepsy is sleep paralysis. The side effect of sleep paralysis can cause some narcoleptic individuals to unable to move or talk during the beginning or the end of sleep.
  • A fourth sign of Narcolepsy is micro sleep.  Micro sleep is a very brief episode of sleep which you continue to function and then awake with no memories of the activity which you had pursued.
  •  Another sign of Narcolepsy is called nighttime wakefulness. Individuals who suffer with Narcolepsy may periodically suffer of wakefulness at night, and could have hot flashes, elevated heart rate, and sometime strong feelings of alertness.
  • The last sign of Narcolepsy, rapid entry into REM sleep. Narcoleptic individuals have unique sleep patterns. People who are diagnosed with this disability tend to enter the REM stage or dream phase of sleep right after falling asleep. Whereas, most people who do not have Narcolepsy tend to enter the REM stage after about an hour and a half of sleep.

Is Narcolepsy really a disability?

Yes, Narcolepsy is legally considered to be a disability. The reason that the Narcoleptic disorder is considered to be a disability is because it causes significant difficulty in maintaining a normal lifestyle, including school, work and relationships. There is currently no available cure Narcolepsy. From case to case the severity of the narcoleptic disorder varies. This disorder is treated with a number of medications, therapies, and changes of one’s lifestyle. Many who are diagnosed with Narcolepsy must take frequent naps throughout the day; therefore it is difficult to complete daily tasks.

Is the disability in narcolepsy curable?

No, Narcolepsy is not curable. Though there are several medications and therapies these unfortunately are not cure to the disorder of Narcolepsy.  A patient diagnosed with narcolepsy will have to come to terms that the disease will be a constant companion for the rest of his or her life.

Are there any sleep disorders that are mistaken as Narcoleptic Disability?

Yes, there are several sleep disorders that are mistaken to be Narcolepsy, but there are only a few that are most commonly mistaken for each other. The disorders that are mistaken as Narcolepsy are OSA also called Obstructive Sleep Apnea. Another sleep disorder that is mistaken to be Narcolepsy is called Periodic limb movement disorder (PLMD) instead of the limb paralysis most people experience during deep sleep; these patients have occasional, involuntary limb movements.

Both of these disorders can cause SOREM, or sleep onset rapid eye movement and EDS Excessive Daytime Sleepiness.  Which are decidedly traits found in the disability on narcolepsy.

What is the difference between Narcolepsy and other sleep disorders?

The difference between Narcolepsy and Obstructive Sleep Apnea is that Obstructive Sleep Apnea is the name for the condition that causes snoring, or holding your breath.  A patient diagnosed with sleep apnea stops breathing periodically throughout the night. The disorder commonly isn’t recognized until the age of forty, and symptoms usually occur five years before they are ever recognized.

Another difference between the two of these disorders is naps. Individuals diagnosed with Narcolepsy have reported that with a fifteen to twenty minute nap they feel refreshed. Whereas, an individual diagnosed with Obstructive Sleep Apnea has not reported feeling refreshed after a fifteen to twenty minute nap as a matter of fact in some cases have reported to feel worse.

Insomnia can cause many similar symptoms to narcolepsy but it is easily treated with the help night time tranquilizers. When a person does not sleep for several days, they will experience: hallucinations, EDS and sleep attacks.

What causes this sleep disability and narcolepsy symptoms?

No one is sure what causes narcolepsy.  There are plenty of theories.  Some specialists believe that it is inherited, but there are rarely instances of narcolepsy within a family.  The theory that narcolepsy is caused by a past disease or infection has more credence, but insufficient supporting evidence.

The current theory being entertained is that narcolepsy is an autoimmune disease.  Scientists are tracing the origins of the disease in the body and developing a portrait of the actions, this will hopefully lead not only a cause but to a cure.

What Are the Treatment options for Narcolepsy?

Narcolepsy and disability from its symptoms are usually attacked on several fronts.  There are both lifestyle changes and drug therapies that are effective in treating this disorder.

Lifestyle changes include:

  • Stringent bedtime routine
  • Strategic day time naps
  • Careful food choices
  • Avoid  OTC stimulants and depressants

Drug therapies include:

  • Drugs for EDS and insomnia treatments
    • Methylphenidate
    • Amphetamine
    • Modafinil
    • Selegiline (also anti-cataplectic)
  • Drugs for cataplexy
    • Sodium oxybate (gamma-hydroxybutyric acid)
    • Protriptyline
    • Desipramine
    • Imipramine
    • Clomipramine
    • Venlafaxine
    • Duloxetine
    • Selective serotonin reuptake inhibitors

Carefully following these guidelines on management of narcolepsy, a patient can often live a pretty normal lifestyle and control its symptoms. To get extra help, there are internet message board and live people at support groups.

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Narcolepsy Awareness and Management: Help Yourself In Everyday Life

December 4, 2011 By Leave a Comment

There are around three million men and women around the world that are living with narcolepsy. Narcolepsy is a sleep disorder that causes people to uncontrollably sleep when they need to be awake. For those living with narcolepsy and those directly involved with them, managing narcolepsy is not always easy. Narcolepsy awareness could serve to help those not directly affected by narcolepsy to better understand those who are.

The management of narcolepsy comes in many forms that must be added together to be truly effective. Awareness of these medications and treatment plans is imperative for those who have narcolepsy to control the symptoms and achieve a more meaningful life. For those without narcolepsy, all information on these treatments needs to be considered when dealing with a person with this ailment.

Awareness on Narcolepsy Symptoms

Medications are used to clinically treat the symptoms of narcolepsy, although medical experts have yet to find a cure. The types of medications used to manage narcolepsy symptoms are based on which symptoms the patient has. The primary symptoms associated with narcolepsy are:

  • E.D.S. (excessive daytime sleepiness) – The feeling of extreme tiredness during the daytime which culminates in lack of awareness and sudden sleep attacks. This is the most common symptom of narcolepsy.

  • Cataplexy – The sudden and unexpected loss of muscle control, which can result in falls and injury. This symptom is also very common in narcolepsy patients.

  • Sleep Paralysis – This is when a person’s brain disconnects itself from the body, leaving the person in a state of awareness, but without the ability to move or speak. Usually hallucinations of an extremely intense nature occur when the person is having an episode of sleep paralysis.

  • Hallucinations – The hearing and/or seeing of things that are not there. A common symptom found in patients with sleep paralysis, but not completely unheard of in patients without sleep paralysis.

A secondary list of narcolepsy symptoms is necessary to give people a full understanding of what people living with this chronic ailment goes through on a daily basis.

  • Insomnia
  • Forgetfulness
  • Clumsiness
  • Irritability
  • Untidiness
  • Depression

Narcolepsy medications come in several forms and types. These medications types include:

  • Sodium Oxybate is commonly used as insomnia treatments and to treat cataplexy and sleep paralysis.
  • Stimulants are used to promote alertness and are commonly prescribed to treat E.D.S.
  • Antidepressants are used to treat patients suffering from hallucinations and cataplexy.

As with all medications, each of these types has several different brands including generic names. Medications should be taken as directed and combined with other therapies such as daily routine changes and a support group. Narcolepsy management is not an easy undertaking, but with the support of friends, family and colleagues a narcoleptic patient will have an easier time coping with the issues that arise in their daily lives.

Management of Narcolepsy

The changing of daily living routines is an important aspect in the treatment of narcolepsy. These changes, which help to serve as an advisory guideline, can help a person suffering with the symptoms of narcolepsy to eliminate some, if not all, of the stress that accompanies this ailment. These lifestyle changes include:

  • Health awareness/improved eating habits
  • Schedule changes
  • Informing everyone about the condition
  • Saying no to illegal drug use and alcohol consumption
  • Avoiding activities that may cause accidents
  • Wearing medical dog tags or an alert bracelet
  • Attend counseling
  • Read info on a self-help sleep aid, an advisory board/message board and live support, and/or the criteria of narcolepsy management

Awareness on narcolepsy is a responsibility of the patient as well as everyone involved in the life of a person who has this disease. These guidelines on management and any update of the guidelines can help to increase the awareness and management of narcolepsy. Anyone can become involved by joining the A.S.A. (American Sleep Association).

Narcolepsy Awareness Week

Every year the first week of December is dedicated to narcolepsy and awareness of sleep disorders, and is sponsored by the American Sleep Association. This week long, nationwide event promotes narcolepsy awareness and informs the general public about everything that people with narcolepsy go through in daily living.

Living Hell: A Woman’s Fight with Narcolepsy

When she was twenty years old, Mary started to have trouble concentrating at work, as well as in her college classes. Her boss at the time, Bob, began to notice a decreased overall performance, which led him to believe that Mary was either lazy or involved in illegal drug use. Showing his concern, he decided to question her about her life outside of work.

Mary explained that she didn’t know what was going on, and she took an oath on the Bible that she was not on drugs. She told Bob that her grades were suffering alongside her work performance. Her main complaints were that she couldn’t seem to stay focused and that she was always extremely tired. Bob suggested that she see a doctor immediately, and that her remaining employed there depended on it. He did this not to be rude, but out of concern for her health.

After the doctor visit and many more tests, Mary was diagnosed with narcolepsy and nighttime insomnia. She was horrified to hear this news, because up until then she had thought narcolepsy was just a funny joke. The physician at the sleep clinic prescribed antidepressants to treat Mary’s depression and sodium oxybate to help her sleep at night.

She reported to Bob after the diagnosis just as they had agreed upon. Bob suggested that she also seek counseling or a support group to help her cope with her condition. To show his concern and friendship, Bob agreed to attend these groups with her. It took little to show Bob how important narcolepsy awareness is. After at least one convincing class, Mary decided to involve everyone she knew in her struggle against narcolepsy.

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Narcolepsy: Sleep Study Expectations

December 3, 2011 By Leave a Comment

Narcolepsy is a sleep disorder that affects three million people worldwide. Narcolepsy is divided into two international classifications: Narcolepsy with and without cataplexy. Narcolepsy without cataplexy is the parent disease. Narcolepsy with cataplexy has all the same symptoms as narcolepsy without cataplexy, except the patient also experiences cataplectic episodes.

Narcolepsy Symptoms

Classic symptoms of narcolepsy include Excessive Daytime Sleepiness (EDS), sleep paralysis, hallucinations and cataplexy.  These are the symptoms that doctors look for a diagnosis of narcolepsy.

EDS is exactly what it says. A person who is suffering from EDS experiences a desire to sleep so strong that it becomes a need.  People with narcolepsy do not sleep more than people with healthy sleep habits, but their nighttime REM cycles are interrupted, creating the demand for sleep during the day.

EDS is the defining symptom of narcolepsy.  It can, however have several other causes.  Any sleeping disorder can cause tiredness, especially when insomnia is a factor.

Sleep Paralysis is also not exclusively a narcolepsy symptom.  In fact, anyone can experience sleep paralysis once or twice throughout their lives.  Narcoleptic who suffer sleep paralysis, experience it more often.

The phenomenon happens during the twilight between wake and sleep, where the body enters REM paralysis before the mind falls a.  The episode can be terrifying, especially when coupled with hallucinations.

Hallucinations are a common symptom of narcolepsy.  They can affect the lives of the patient to serious levels when they cease to be able to tell the difference between real and unreal. This sometimes causes a misdiagnosis and a case of narcolepsy gets filed as schizophrenia, bipolar disorder or several other physiological disorders that share similar symptoms.

Hallucinations that accompany sleep paralysis can be vague, but can also seem menacing.  Historically, sleep paralysis with hallucinations has been misdiagnosed as a possession.  In European history, it is referred to as the “Hag Effect” and was believed that when a witches body died, she would borrow someone else’s that evening before moving on to her new one.

In Hispanic cultures, the term “dead man on top of me” is used to describe the sensation. The inability to move is sometimes offset by a floating feeling and an out of body experience is reported.

Cataplexy is experienced by seventy percent of narcolepsy patients.  It is a bazaar and frightening phenomenon. When REM sleep becomes disassociated, the different factors that define it can be experienced separate and apart from actual sleep.  During cataplexy, the patient has a sudden and uncontrollable loss of muscle tone.  The triggers for these attacks are extreme emotions.  Anger and robust laughter are the most commonly reported triggers.

A lesser attack of cataplexy can go unnoticed.  It can be as simple as an overly clumsy feeling or a slight drooping of an eyelid.  It can last for no more than a second or two and be gone before it even registers.

A more serious episode can end in complete collapse.  And can last for over an hour.  During the total paralysis, the subject is not asleep.  They are awake and alert.  They just cannot communicate.  They have lost all control.

Diagnostic Narcolepsy Sleep Studies

When a patient experiences EDS, insomnia or any other sleep related symptom, they can expect to be put through a sleep study and narcolepsy is a genuine possibility.

There are two sleep studies narcolepsy experts use to diagnose the disease, the nocturnal Polysomnogram and the multiple sleep latency test (MSLT).  They are usually preformed one right after the other with the combined testing taking one whole day. These are the current accepted standards for collecting data and diagnosing sleep disorders.

Sleep Narcoleptic Study- The Nocturnal Polysomnogram

The nocturnal Polysomnogram is set up to test and record sleep cycles and stages that the patient experiences at night.

The two states of sleep are NREM or non-rapid eye movement and REM, or Rapid Eye Movement.  NREM is a lighter sleep.  The beginning of sleep is usually NREM. Although there are four distinct stages of NREM, the next stage of sleep is the state that is most interesting during the test.

REM indicates a much deeper sleep stage.  It is the time of dreaming and paralysis of body muscles. The two stages alternate.  They take approximately ninety minutes each cycle and a patient with healthy sleep cycles usually has four or five each night.

The first test, the nocturnal Polysomnogram, takes place at night.  The patient goes to the sleep center in the evening and settles into a room for the night.

The rooms at the center are made as comfortable and sleep friendly as possible under the circumstances.  The temperature and lighting are carefully controlled. The distractions are minimal. As much as possible the room is prepared to evoke a good, restful sleep.

An electroencephalogram (EEG) and video surveillance are used to monitor the patient and gather data on breathing, blood oxygen level, movement, time in bed, time asleep, heart rate and rhythm. Visual observations are also made about the patient.

Important information that is recorded is the time it takes to fall asleep, how often he or she wakes up, and every bit of information about the sleep stages achieved, including time and duration. Also noted are night time sleep behaviors like sleep talking, snoring, apnea and any other possibility that could explain the EDS.

Sleep Narcolepsy Study- The Multiple Sleep Latency Test (MSLT)

The MLST is less common than the nocturnal Polysomnogram, but it is the best diagnostic tool currently available for narcolepsy as it gives an accurate portrait of daytime sleep and the sleep cycles experienced during naps.

The MLST is preformed the day after the nocturnal Polysomnogram.  The patient gets five, twenty minute naps that are spread out two hours apart throughout the day. The patient naps in the same peaceful environment they slept in the night before.  Again, they are monitored using EEG and visual observation.

The purpose of the MSLT is to gather data about sleep patterns, the absence or presence of REM sleep, when it occurs and the time it takes to fall asleep.

When REM sleep happens quickly, like within the first fifteen minutes of sleep, it is referred to as SOREM or Sleep Onset REM. This phenomenon is very rare, except in narcolepsy patients, where it is common and it can happen frequently.

The current criteria for a diagnosis of narcolepsy and sleep study results of falling asleep in an average of eight minutes over the course of all five tests, having two SOREMS or even one occurrence of REM sleep during any of the twenty minute naps.

There are several circumstances that may affect the results of the sleep study in narcolepsy. The presence of sleep apnea, shift work sleep disorder, and periodic limb movement disorder can also cause EDS and the resulting multiple SOREMs. For this reason, some experts criticize the use of MSLT and using a sleep study narcolepsy diagnosis becomes too common.

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Narcolepsy Support Groups: Help is Here for You

September 11, 2011 By Leave a Comment

Introduction:

Before jumping into a discussion of the various groups assisting Narcolepsy patients, it is important to mention the disease itself briefly. Narcolepsy is a neurological disease, which leads to various physical as well as psychological disorders. The symptoms range from acute sleeping disorder (with patients falling asleep during the day irrespective of the time and place) in spite of a sound sleep at night to acute concoctions and emotional outbursts. Various social feelings such as humor, excitement and even emotional moments with the dearest and nearest one can trigger off cataplectic attacks. As a result of this, the patients face psychological disorders and gradually withdraw themselves from the social life. They are often regarded as blunt, indiscipline and unmotivated. At times, this can be life-threatening as well. Various support groups have emerged all over the world to provide patients of Narcolepsy all the necessary medical assistance. They are helping victims to overcome the disease and lead a normal life once again.

Support Groups:

The Narcolepsy Support Group is a community that is primarily comprised of people with a history of Narcolepsy and family members and friends of Narcolepsy patients dedicated to dealing with Narcolepsy, together. The first and foremost thing that a patient of Narcolepsy needs is empathy instead of sympathy. While unnecessary sympathy may become frustrating, empathizing with a patient will make them mentally stronger and provide the strength needed to fight the disease. Here is where the Narcolepsy Support Groups play a very handy role. The patients or their family members can always come in contact with any of these support groups and share their problems without any hesitation. Apart from that, when contacted, these groups can provide the patient the necessary information about the nature of treatment they will need and the places where they can get themselves treated.

The Way they Work:

Generally, the Narcolepsy Support Groups gather the email addresses, phone number, age, sex, how the disease was diagnosed, for how long he or she has been suffering, what exactly are the symptoms and other information about the patients and maintain a database. They  then contact the doctors and psychologists and take their guidance in setting up their operations. With advice from the doctors they arrange interactive sessions of funs, slide shows of various types of colorful photographs, pictures and paintings etc. They have the option of inviting the patients to write on various Narcolepsy-related topics. They also ask them to share various interesting food recipe, games, and indulge in discussing different current events in the websites.

The main idea is to make the patients feel at ease and happy and also helping them to have an open mind to adopt different opinions, points of views and thereby remove the mental blockage that has developed in the back of their minds.

It’s common for people working in shifts (especially in factories, call centers, hospitals) in a 24×7 work profile to be more prone to this disease. For the Narcolepsy patients, medicines are not the only way out. While the medicines, to some extent, decrease the severity of the disease, in maximum number of instances, it’s seen that the medicines tend to have certain side effects which cannot be ignored. Hence, there is ardent need of a very strict dieting habit and some basic physical as well as mental exercises. The Narcolepsy Support Groups provide the guidance in dieting and even run a course on various physical and mental exercises in accordance to the age and sex of the patient and on the severity of the disease.

Apart from all these already mentioned activities, other objectives of the Narcolepsy Support Groups can be jotted down in the following fashion:

  • Since there are a number of support groups operating virtually all over the world, they serve as a centre of excellence for a particular place, thereby assisting the patients. This is particularly helpful for patients staying in the rural areas who do not have access to world-class medical treatment very quickly.
  • Like many social organizations taking care of other diseases like AIDS and Leprosy, these groups also contribute extensively in educating the families and healthcare professionals about Narcolepsy
  • Constantly maintain and develop themselves so as to fulfill the need of the patients at any given point in time
  • Make Narcolepsy patients aware of their rights and privileges they are entitled to enjoy
  • Serve the patient in the hour of their need by providing the best possible treatment

There are innumerable support groups working tirelessly all over the world and they are easily available in the net. Hence, it is advisable, whenever someone develops symptoms of Narcolepsy or is diagnosed with the disease, the patient or any of their family members should contact any of these groups and take a friendly advice from them. May be, it will help the patient to overcome this disease quickly. Remember, medication is not the only way out. There are various methods of alternative treatments the patient can be guided through by these support groups. Hence, be frank and free to contact them and disclose your problem without any hesitation before it is all too late.

Conclusion:

With human life getting more and more hectic, every day, people or better to say their body clock and metabolic system is finding it harder and harder to come in terms with them resulting various diseases like Narcolepsy. However, with the tremendous development of medical science over the last few decades or so, new avenues of diagnoses are being explored. For example, the development of genetic map has indeed been a shot in the arm so far as the treatment of neurological diseases is concerned. Who knows, those days are not far away, when the evil of this highly embarrassing and dangerous disease will be eradicated form the face of this world for ever. Whatever happens, the contribution of these support groups can never be ignored and they will be regarded as one of the pioneers in eradicating the disease.

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Narcolepsy Support Groups: What you Need to Know about the Help that is available

September 11, 2011 By Leave a Comment

Narcolepsy patients all over the world are struggling with a negative self-image because of their sleeping disorder. Narcolepsy symptoms, Cataplexy especially, are not commonly viewed in positive or educational lights. Most patients who struggle with the signs and symptoms of the disorder are embarrassed by their unique medical situation, and they often remain isolated because of this self-consciousness. More and more narcoleptics are seeking out the structure and comfort of Narcolepsy support groups to help them cope with their emotional and personal troubles. In fact, some might say that Narcolepsy and support groups were made for each other.

What is a Support Group?

In the simplest terms, a support group is a gathering of people who have a common interest. While the personalities and lifestyles of all group members may be completely different, one cause brings them together. Most support groups focus on one clear topic: breast cancer, aids, and addiction to name a few examples.

Support groups make it possible for people who are dealing with similar problems in their lives are able to come together, and form a relationship with one another to help them cope with their struggle (receive Narcolepsy help). Most support groups offer a forum for people with a connection to come and openly share their feelings as well as gain information. Medical, emotional, and physical issues can have extremely negative effects on your quality of life; it may be helpful to seek support and empathy from other people who understand your issues. Support groups are also a good opportunity for patients to learn what supporting people with Narcolepsy really means.

The Two Main Types of Narcolepsy Support Groups

There are two main categories in which support groups are placed.

Self-Help Support Groups

Self-help groups are also commonly referred to as peer support groups, fellowships, mutual aid self-help groups, lay organizations, and mutual help groups. Self-help groups are run entirely by the members of the group; the members organize and execute all decisions affecting the group. Most self-help groups consist of numerous volunteers that all express a passion or experience in the cause. Members of self-help groups are free to explore discussion and other therapies at their own pace, in their own way; the members are helping themselves cope with Narcolepsy.

Professionally Operated Support Groups

When support groups are managed by people who do not share the same problem as the members of the group, the support group is called a professionally operated support group. Professionally operated support groups delegate a facilitator that will be in charge of all group discussions and activities. Unlike the free-form, emotional exploration that is offered through self-help groups, professionally operated groups provide a strict structure and regiment for patients who struggle with commitment. Social workers, clergy members, and therapists are all facilitators for professionally operated support groups. The most commonly recognizable forms of professionally operated support groups are hospitals, jails, prisons, and rehabilitation facilities for drug-treatment; professionally operated support systems are commonly located in institutional places.

What are the Benefits of Attending a Narcolepsy Support Group?

  • Finding a place to fit in: Many narcoleptic patients find their disorder much easier to handle, physically as well as emotionally, after finding a home with a support group. Narcoleptics often feel isolated and alone; a very small percentage of Americans suffer from the disorder. Finding a Narcolepsy support group that feels safe and comfortable is a great way to assist you, and even those closest to you, with becoming accustomed to living with the problematic disorder.
  • Gain confidence and self-empowerment: Narcolepsy patients, especially in their adolescent teenage years, often experience embarrassment and shame because of their disorder. Patients with Cataplexy tend to be especially reserved or introverted. Participating in a support group will you see that there are many other people in the world you understand what you’re going through, even if that number seems really small sometimes. Accepting the commonality of the problem will help educate others on the truth behind Narcolepsy; it is an unfortunate, but manageable sleeping disorder.
  • Gaining a forum in which to speak openly:
  • Giving and receiving advice: Freshly diagnosed Narcolepsy patients usually experience a period of confusion and stress following the diagnosis. Support groups offer the option of seeking interpersonal contact. New Narcolepsy patients and old Narcolepsy patients are able to come together and swap stories and advice about their disorder; yet another forum for Narcolepsy education.
  • Reviewing treatments, doctors, etc.: At a Narcolepsy support group, the patients are able to come together and share their own personal reviews and opinions of all-things Narcolepsy. Meeting with your support group gives you all the opportunity to talk about any new treatments, facilities, doctors, etc. that could be helpful. Personal reviews are one of the most reliable, consistent ways to chose a trusted medical professional or treatment
  • Developing new skills: Support groups, especially professionally operated support groups, help members develop new skills for dealing with their Narcolepsy symptoms and complications. Members are able to hone the skills that will help them successfully manage Narcolepsy in the presence of trained professionals that are always ready to lend a hand.
  • Strengthening relationship skills: Because support groups bring together various strangers for intimate conversation, a certain level of respect and integrity is required while conversing as a group. Narcoleptics are often moody or easily irritated, and may benefit from the structured behavioral requirements. Improving listening and empathizing skills in support groups will help improve relationship skills outside of the group.

How Can I Find an Appropriate Support Group for Narcolepsy?

If you decide you would like to explore the possibilities of joining a Narcolepsy support group, there are many avenues to travel when making your decision. Before you make a hasty decision, do plenty of research. Just like internet chat rooms, not all support groups can be trusted.

  • Talk to your doctor: More often than not, your doctor will be able to suggest a support group that fits your needs.
  • Visit a sleep center: If your doctor is unable to refer you to an acceptable group, take a trip to the closest sleep center in your area.
  • Contact medical facilities in your community: All towns are not created equal, and you won’t find a respectable sleep clinic twenty miles. If you are having trouble finding a sleep center close-by, ask specialists at your local medical facilities.
  • Look in the phone book: In the technological age, many people forget about phone books, but they still contain useful information.

Other Ways to Find the Right Narcolepsy Support Group

  • Visit local universities
  • Talk to other Narcolepsy victims
  • Search the internet
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Narcolepsy Awareness and Management an Overview

September 11, 2011 By 1 Comment

Narcolepsy isn’t your run-of-the-mill sleeping disorder; in fact, it’s really rather rare. Whereas Insomnia and Sleep Apnea are quite common, Narcolepsy occurs in less than one percent of the population. It is estimated that around 50,000 citizens of the United States suffer from the disorder. Congruently, there may be as many as two and a half million Americans that are living with the signs and symptoms of the disorder and have no idea.

For many patients suffering from the disabling sleep disorder, they are often too embarrassed to talk about it. Television and cartoons have been known to poke fun at Narcoleptics; characters with Narcolepsy are often falling asleep in their food, or breaking things. A lack of narcolepsy awareness and management has given the sleeping disorder a poor connotation.

Narcolepsy and Awareness

Narcoleptics are tired almost all of the time, and sometimes very dangerously so. It is not uncommon for a narcoleptic patient to collapse suddenly into sleep in the middle of an activity. Patient’s who experience extreme symptoms like this, especially those with Cataplexy or Sleep Paralysis, know that sudden slips into the REM stage of sleep can be dangerous for you, and the people around you. Narcoleptics are completely unable to control when they fall asleep. In unfortunate cases, narcoleptics have been known to fall asleep while standing, eating, and even driving. It is also very common for Narcoleptics to experience hallucinations; the hallucinations associated with Narcolepsy cases are often extremely vivid, and many times frighteningly overwhelming.

Narcolepsy Management

Living with Narcolepsy can be frustrating. To protect your safety during activities that last a significant amount of time, like driving or operating any other dangerous machinery, try to nap before the activity. During long car rides, stop often and move around. If you are unable to nap before a demanding activity, or don’t have the option to be too physically active, try to keep people around that will engage in conversation with you.

It is important to try and stay alert and stimulated as much as possible, especially at work. Try and find a job with a flexible schedule; you will be more likely to be granted to the opportunity to nap when need be. If you’re suffering from Narcolepsy, or any other medical problem that causes you to struggle with excessive levels of daytime sleepiness, don’t get a job where you drive a lot. In addition, finding a workplace with a short commute will help decrease your risk of getting in an automobile accident on your way to and from work everyday. Take the bus to work if your neighborhood accommodates the action.

Narcolepsy Awareness Patient Education

Patients who suffer from Narcolepsy, and have yet to be diagnosed with the sleeping disorder, are at a much higher risk for developing serious complications because of the ailment. On the other hand, there’s only so much protection a diagnosis can offer you. When you have Narcolepsy, you fall asleep when you feel the need to fall asleep; you can’t stop it. The best way to protect yourself and the people closest to you from the dangers of your Narcolepsy case is to be well-educated on the disorder, its symptoms, its risks, its treatments, and all of the options associated with the sleeping disorder.

Narcolepsy Support Awareness

If you know someone close to you who suffers from the potentially dangerous disorder, make sure that you are there to lend the help and support needed by you narcoleptic friend. Knowing what to expect and how to react during a narcoleptic episode will help make you feel safer, and help keep your falling friend safer.

Narcolepsy can be really stressful to handle, and some people are not comfortable with the fact that they have the disorder. Letting narcoleptic patients know that they can be comfortable with their disorder, and that friends and family are there to help is the best way to ensure a level of comfort in the daily lives of Narcoleptic patients. Too many patients who suffer from the disorder are too afraid to seek help, or talk about their problems because they fear being poorly judged. There is a common fear among narcoleptic patients that they will be viewed as lazy, undisciplined, or lacking in intelligence. Showing your support for Narcolepsy and its victims will help encourage sufferers to seek the treatment needed to manage their symptoms and complications.

National Narcolepsy Awareness Week

During the last month of every year, the American Sleep Association sponsors a week-long campaign for promoting the awareness of Narcolepsy, the week has been dubbed Narcolepsy Awareness week. The American Sleep Association and their respected affiliates have dedicated the week spanning December 1-7 to promoting national awareness of one of the most disregarded sleep disorders, Narcolepsy. The goals of the week are to educate the general population on the on the signs, symptoms, facts, risks, complications, diagnostic options, and treatment options for Narcolepsy.

Narcolepsy, Awareness, Management, and Support Groups

Modern American society is social, to say the least. This is an outstanding truth for people suffering from rare disorders like Narcolepsy. The medical community is home to thousands of different support groups for people suffering from an array of illnesses and diseases. Patients who feel isolated in their disorder are able to find other people suffering from the same problems.

In addition to helping heal the emotional damages caused by Narcolepsy, support groups give narcoleptic patients an opportunity to communicate and network with people that may be able to provide help and assistance in other ways. Patients are able to speak with other patients and review treatment methods, doctors, and even lifestyle tips for coping with Narcolepsy.

Most doctors, especially sleep specialists will be able to point you in the direction of a reliable support group. Your doctor is a very valuable resource, and will also be able to help you find ways to help manage the signs, symptoms, and risks of your Narcolepsy case. More often than not, if a medical professional feels to unequipped or ignorant in a specific field, like sleep study, they will more than happy to refer to a qualified professional that is able to meet your needs.

If you are having trouble finding a Narcolepsy support group that meets your needs, don’t forget to check online. The internet is a useful resource for support, communication, and gathering information.

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