Not all ADHD presents the same. Some women are hyperactive; others are sluggish. Some love having a lot of commotion and stimuli in their lives; others need to frequently retreat to a quiet space to recharge.
Consider the list of symptoms below that are not often listed in the ADD literature but which are commonly described by women with ADHD. Is it any wonder that your daily activities can be so overwhelming?
1. Hypersensitivity to noise, touch, smell. Women with small children are often overwhelmed by the constant interruptions, the noise level and commotion at home.
2. Feelings of low self-worth. Women may feel they should be able to “do it all” and feel defeated when they can’t keep up. Juggling parenting and work responsibilities can simply be overwhelming.
3. Hypersensitivity to criticism. Again, high expectations since childhood of being a “good girl” can make women with ADHD more vulnerable to these sensitivities.
4. Poor sense of time, often running late.
5. Being emotionally charged and easily upset. This is exacerbated during hormonal changes.
6. Starting projects but seeming unable to finish them. Do you have piles of empty photo books? Heaps of unfinished sewing projects?
7. Taking on too much. On top of work and parenting, there is often the need for women to take on even more, like volunteering, helping out with school-related functions, making meals from scratch, etc.
8. Difficulty remembering names. This often gets worse before, during, and after menopause.
9. Saying things without thinking, often hurting others’ feelings. Women often express themselves much more freely than men. Enter ADHD, and they can often say what first comes to mind, which can inadvertently hurt feelings.
10. Appearing self-absorbed. With ADHD, a person can be so involved in their inner world or dialogue, that it seems to others that she is not invested in the conversation or relationship.
11. Seeming to not want to hear what others are saying. This is especially difficult for women, who often want to connect socially, but have difficulty doing so. Their sensitivity to criticism sometimes indirectly builds a wall and makes intimacy more challenging.
12. Engaging in addictive behaviors. While addiction is associated with ADHD in general, women tend to struggle with addictions like shopping, too much TV (soaps!), and overeating.
13. Problems with word retrieval. This often worsens during menopause.
14. Poor handwriting. This can be an embarrassing issue, as society seems more accepting of poor penmanship in men.
15. Difficulty with boring, repetitive tasks. Examples include laundry and other housekeeping chores.
16. Spending time ruminating. Obsessing is common with ADHD, but women tend to spend even more time ruminating than men with the condition.
17. Difficulty making decisions. Anything that requires many choices, like grocery shopping, can be problematic.
18. Clumsiness and poor coordination.
19. Tiring easily, or conversely, difficulty sitting still.
20. Difficulty falling asleep and difficulty waking up the next morning. Again, made worse during menopause
Many adults with ADHD have found systems and coping mechanisms to manage the everyday symptoms of ADHD. However, others struggle daily with distraction, lack of organizational skills, and becoming easily overwhelmed. The strategies below can help adults with ADHD develop coping skills:
- Make time for exercise every day. Exercise helps increase focus and attention, decrease excess energy, and helps combat symptoms of depression. Including an exercise program in your daily routine will provide you with many benefits.
- Accept yourself and your limitations. Remember that ADHD is not a made-up diagnosis. A diagnosis of ADHD can help you to understand why you act in a certain way, but it is not an excuse for inappropriate behaviors.
- Find people that accept you. Adults with ADHD may feel that those around them do not understand them, and criticize or judge them for their behaviors. If the people you are spending time with make you feel uncomfortable or inadequate, find other people to be with. Look up local support groups in your area or create your own network of friends that accept you and you feel comfortable around.
- Look for time in your day to unwind. Use transitional time between activities to de-stress and unwind. Stop on your way home from work to sit at a park for 10 minutes or let your family know that when you arrive home you need a few minutes of downtime before entering family activities.
- Create a system for prioritizing your day. Look over what needs to be accomplished and complete the items that are most important first. Leave those that are less important for later. Should you become distracted, you will know that you still have accomplished the most important items for the day.
- Use your own internal clock to your benefit. If you are a morning person and are more productive early in the day, arrange your day for the most important items to be accomplished in the morning. If you find that you do best in afternoons, arrange your day this way. Look for jobs that will allow you to be flexible in your schedule to make the most of your own productive patterns.
- Create deadlines for projects. If you find that you constantly procrastinate, outline a project you are going to begin and set deadlines for each step of the project. Even if you are working around the house, give yourself a time limit to complete portions of the task.
- Break down all tasks into steps. Adults with ADHD are often overwhelmed with large projects and tasks. Many times, this causes the project to go unfinished and, in some cases, never even started. Instead of looking at the project as one complete task, look at it in steps. For example, if you are going to clean your house, make it a system: first, make the beds; second, straighten the living room; third, dust and vacuum. Don’t worry about any steps other than the one you are currently working on.
- Provide your own structure. Develop systems to help you give your day routines such as a daily schedule. Use organizational helpers like to-do lists, PDAs, daily planners, and tape recorders.
- Learn about ADHD. The more you learn about your diagnosis, the more prepared you will be to handle the daily difficulties. Read books, ask your doctor questions, or join support groups.
Not all children with ADHD have hyperactivity, but for those that do, sitting still is an almost impossible feat. The constant physical activity can be frustrating for parents and a nightmare for teachers when hyperactivity causes a child to constantly disrupt the class. But for children with hyperactivity, physical activity is not the only aspect. Their minds often don’t shut down. Thoughts go a million miles an hour and in many different directions. To help a child learn to manage or reduce hyperactivity includes strategies to help lower physical activity levels and to calm thoughts.
The following are 10 ways parents can help reduce hyperactivity.
1. Provide a good breakfast.
If your child’s teacher complains that he is frequently disrupting the class by fidgeting or getting up from his seat, start your child off with a good, healthy breakfast. Hunger and blood-sugar peaks and valleys can make a child more hyperactive.
2. Teach deep breathing/yoga/tai chi/meditation.
While many of the strategies are things a parent can do to help their child, it is also important to teach your child methods for self-regulation. Deep breathing exercises, yoga, tai chi, or meditation all help a child learn to slow down their thoughts and their bodies. Work with a professional if you aren’t sure how to teach your child these different methods of relaxation.
3. Take a walk.
For moments of high activity at home, taking a walk outside can help your child calm down. Being outside and regular exercise have both been shown to reduce ADHD symptoms. If your child is still young, plan a daily walk around the block into your routine. If he is older, have him take a short walk outside before settling down to do homework or another quiet time activity.
4. Use a boredom box.
Hyperactivity zooms when boredom sets in. Create a box of activities geared toward your child’s interests. The box might contain dress-up clothes, art supplies, Legos, models, or whatever activity tends to hold your child’s interest. To keep the box interesting and novel, switch items once in awhile and once he has lost interest, put the box away until it is needed again.
5. Routine and structure.
Make sure your days, even weekends and vacations, follow a routine. Children with ADHD thrive in structured environments, when they know what to expect. Allow for transitional time in between activities to help your child move from one to another
6. Use music.
Soothing music, such as classical music, can help some children calm down. Experiment with different types of music to find out what works for your child. Use music in the background for times when activity levels should be low, such as homework time, dinner time, or before bedtime.
7. Create a quiet time area.
Create a space in your house for your child to retreat to during “quiet time.” You could use a bean bag chair and have plenty of books, puzzles, and coloring books to keep your child busy and quiet.
8. Exercise every day.
Add exercise to your child’s daily routine. Making sure your child gets at least 20 minutes of exercise each day can help reduce ADHD symptoms all day – and reduce depression and anxiety symptoms. Even during the cold winter months or on rainy days, try to find indoor exercises for your child. Many of the video games have an exercise game to help your child keep moving and entertained.
9. Stay calm yourself.
Children react to your reaction. If you get upset, frustrated, or angry, their hyperactivity levels may increase. Take a few deep breaths, go into the other room, and take a short break if you need one. Staying calm and reacting with a neutral voice will help your child remain calm.
10. Provide fidget alternatives.
For children who seem eternally restless or must fidget whenever they are trying to sit still, provide fidgeting alternatives to help them release energy and keep moving without disturbing others. Your child might sit still for longer periods of time if he has a stress ball or other object in his hand he can manipulate. Chewing gum may also help (but usually isn’t allowed in school.)
While hyperactivity can cause inappropriate behavior in some situations, remember, hyperactivity is also seen as a positive trait. Many adults with ADHD appreciate their endless energy and feel they are able to accomplish much more than those without hyperactivity. Help your children learn to harness the excessive energy and use it to help them accomplish their goals.
As educators and parents prepare for the upcoming school year, I thought it would be helpful to share the following list that has been compiled by teens with ADHD.
They have kindly shared with me what is important to them and what they find most frustrating in working with teachers and parents. (Editing has been done to improve clarity.) Throughout my son’s high school career, I have copied this list countless times, giving each of his teachers insight into his behaviors and feelings at the beginning of the school year.
Teachers, parents, and administrators around the country have asked numerous times for permission to reprint the list. Please feel free to share it with other parents and teachers that you think may benefit from it.
12 Things Teens with ADHD Would Like Their Teachers to Know
1) I forget things, even important things.
There is a myth that states, “If it is important enough, you will remember it.” Please understand that this is a myth. My memory may not work the same as yours. Just because I forget does not mean that it doesn’t matter. I am not trying to be a smart alec or arrogant when I say “I forgot.” I really do forget.
2) I am not stupid.
I may sometimes lose my place during your class or take a few minutes to get my thoughts together before speaking, but I am not stupid. ADHD does not have anything to do with intellect.
3) Please be patient if I ask the same question many times or ask too many questions.
I am not trying to be arrogant. I am trying to understand. I am trying to comprehend, and I am trying to remember what you have said.
4) I really do want to do good.
For many years, I have struggled with schoolwork. It is frustrating for me. I want to pass your class, I want to do my best, and I want to feel good about the work I have done.
5) I do complete my homework.
I often lose papers, leave my homework at home or in my locker. I often don’t know where my homework is when it is time to hand it in. But I do complete it. Loose papers are the most difficult to keep track of. If it is possible to complete my homework in a notebook, I will be able to keep track of it better.
6) ADHD is not an excuse, I should not use it as one, and neither should you.
ADHD is a real disorder. It causes me to forget things, to be impulsive, to act without thinking, to lose track of my belongings, to be inattentive, and sometimes it causes me to process information a little more slowly. I do not like being different and would very much like to be “normal.” I do not like to be made fun of for being different.
7) I need help to succeed.
This is sometimes very hard for me to accept. I do not like having to ask for help. Sometimes asking for help makes me feel stupid. Please understand this and be patient. Please sometimes offer your help without my having to ask. Please understand that needing help makes me feel inadequate and that I may resent you asking. That doesn’t mean that I do not want or need your help.
8) If you notice me acting in inappropriate ways, please talk with me in private.
Please do not talk to me in front of the class. This is humiliating. Please do not insult me or call attention to my differences or weaknesses in front of other students.
9) I don’t like having “special accommodations” in the classroom.
Sometimes they are needed to help me succeed and do well. But that doesn’t mean that I like it. Please don’t call attention to any special treatment in front of other students. Please do not draw attention to my ADHD.
10) Detailed explanations of your expectations will help me.
I work best when I know exactly what you expect from me. I will do best if your expectations are in writing so that I can refer back to them if needed. The more detailed your classroom and class work plan is, the better I will do. Knowing what to study and how to study will help me when taking tests. Knowing how you expect projects to be completed will help me to do a good job.
11) Learning about ADHD is one of the best ways to help me.
Read about ADHD, how to teach children with ADHD, and talk with parents and other teachers to learn as much as you can. Understanding and learning about ADHD will help me to do better in your class.
12) Although I have ADHD, I am not ADHD.
I am a person. I have feelings, hopes, and expectations. I have needs. I want to be liked and accepted. I want to feel good about myself. All of this is important to me. Sometimes I act out to hide my embarrassment or shame. This does not mean that something is not important. On the contrary, it means that it is very important and I am hiding my disappointment that I failed.
The workplace can be a difficult place for adults with ADHD. Lack of focus, procrastination, lateness, and disorganization are common signs of ADHD in adults. All create problems on a day to day basis at work. According to a study completed in 2003, adults with ADHD were much more apt to have problems than their non-ADHD counterparts. The study showed:
- About 44 percent of adults with ADHD reported some behavioral problem at work as compared to less than 3 percent of those without ADHD
- Over 17 percent of adults with ADHD have been fired from a job at some point in their careers as opposed to less than 4 percent of non-ADHDers
- Approximately one-third of adults with ADHD have quit at least one job because of boredom as compared to 15 percent of those without ADHD
- A little over 17 percent of adults with ADHD felt compelled to quit a job because of hostility in the workplace, as compared to less than 5 percent of those without ADHD
- Around 11 percent of adults with ADHD have been disciplined by their boss as compared to less than 1 percent of non-ADHDers
What is an adult with ADHD to do? Many try to work harder, take more work on to prove themselves, or end up sacrificing other areas of their life to focus on their jobs. The following are five mistakes adults with ADHD often make when trying to improve work performance.
1. Trying to conform.
One of the positive traits of ADHD includes thinking outside the box. That means you often have a new or unique way of doing things. Trying to accomplish tasks according to a non-ADHDer’s instructions often doesn’t work. Whenever possible, adapt tasks to your way of learning and accomplishing. Revise procedures to work with your thinking and learning style. If you have a job where tasks must be completed in a certain way, use mnemonics, lists, or other reminder systems to help you follow along with the procedures.
2. Trying to work harder.
From the time you were in grade school, you might have heard things like, “not trying hard,” or “not living up to potential.” You have it ingrained in you that if you just try harder, you can do it. However, working harder isn’t usually the answer. It makes you exhausted and more prone to burn-out.
3. Trying to do it all.
You might believe that you must prove that you can do the work, that you must accomplish just as much, if not more, than your non-ADHD counterparts. You are afraid to ask for help because you think others will say, “See, he can’t do it.” You come in early, stay late, work through lunch, and frustrate yourself trying to keep up. This often makes the situation worse because of the added stress. Instead, talk to your boss, explain exactly what you need help with and why this help is beneficial to you and the company.
4. Giving up other parts of your life to make the job part work.
It might take you longer to complete a project or task than it does for those without ADHD. You want to do a good job and want to focus on your work. You give up other parts of your life, such as your social life or time for yourself. Unfortunately, “all work and no play” frequently ends up with you tired, irritable, and lonely. No matter how demanding your job is, schedule time each week to get together with friends and family, spend quality time with your partner and children, and do something you enjoy. Those with a balance of work and play are usually more satisfied with their lives.
5. Not writing down information.
Deficits in short-term memory are an ongoing problem for adults with ADHD. You think, “I will remember that,” only to forget it a few minutes later. You might worry that you will become distracted or lose your momentum if you stop what you are doing to write down information. But not writing down information often leads to problems later. Instead, keep your phone, tablet, or pen and paper handy at all times to jot down notes and miscellaneous information. You can take time later to put the information in the proper place, such as your calendar, but take the first step and get it written down.
Although narcolepsy without cataplexy happens often, Cataplexy almost never occurs without narcolepsy, except in the rare case that is the result of a major brain trauma.
Some drug therapy and lifestyle changes can take care of mild symptoms of narcolepsy and without cataplexy, it can be managed easily enough to maintain a normal life.
What is Cataplexy?
Cataplexy is exclusively a symptom of narcolepsy that is experienced by seventy percent of the 3 million people who suffer from narcolepsy worldwide.
Narcolepsy with cataplexy has its own biomarker. That is, there is a specific, measurable trait that is exhibited by most narcolepsy patients with the symptom of cataplexy. The peptide hypocretin-1, which is derived from the hypothalamus in patients with healthy sleep patterns and a narcoleptic without cataplexy, tends to be deficient in cataplectic. This unique feature has earned Narcolepsy with Cataplexy its own separate diagnosis from the narcolepsy without cataplexy.
Most Narcolepsy symptoms can be seen as a disassociated part of REM sleep. Cataplexy is no different. One of the things that happen during REM sleep is that the body’s muscles lose tone and go limp. Cataplexy is the same phenomenon, during wakefulness.
Hypocretin-1 plays a major role in the sleep/wake cycles of the brain. A deficiency manifests itself in the symptom of cataplexy. There is no correlation between hypocretin-1 deficiencies without cataplexy in narcolepsy, making it an unreliable test for narcolepsy without cataplexy.
Cataplexy is the uncontrollable loss of muscle tone. It can be a minor annoyance or a major event. Either way, it can be embarrassing to the person suffering from it. Cataplexy episodes are triggered by strong emotional response. Anger and robust laughter are at the top of the list.
A cataplectic episode can range from unnoticeable to a serious event.
- Mild Cataplexy
When cataplexy is mild, it can go unnoticed. Perhaps the patient experiences a little clumsiness or trips. It can manifest in a single tiny muscle group, usually in the face. A droopy eyelid or momentary slackening of the jaw can be from cataplexy. Cataplexy can last as little as a few seconds, hardly giving it enough time to register as ever having happened at all.
- Severe Cataplexy
Cataplexy can last for over an hour. It can affect the arms or legs. It commonly affects the neck, resulting in the head suddenly falling forward. In some cases, the entire body is affected. The result is a total collapse. The subject is awake and alert, but unable to move or communicate. It can be frightening to experience, especially when it is new.
Diagnosing narcolepsy without cataplexy and narcolepsy with cataplexy is done much the same way. There are no simple blood tests that reveal the disorder. Even testing for a hypocretin-1 deficiency is a difficult and painful process. It requires a spinal tap to test the spinal fluids. Because of the risk involved, this kind of test is not likely to become a mainstream diagnostic tool.
Without cataplexy, narcoleptic diagnosis involves a detailed history and the use of sleep studies.
Sleep studies include the nocturnal Polysomnogram and the multiple sleep latency test (MSLT). The MSLT is the currently accepted standard in testing and data collection for the diagnosis without cataplexy of narcolepsy.
The nocturnal Polysomnogram and the MSLT are usually done together, consecutively. This way, a physician can get a complete portrait of sleep habits and REM cycles of his or her patient.
The tests are performed in a sleep clinic. The subject has a continuous electroencephalogram (EEG) while they are settled into a room in which to sleep. The EEG and visual monitoring will be used to record everything the patient experiences during a restful state.
For the nocturnal Polysomnogram, they will spend the night. For the MSLT, the next day they will have 5 scheduled naps that are 2 hours apart and will last for 20 minutes.
With the presence of moderate to severe cataplexy, diagnosis is simple, since cataplexy is a narcolepsy specific symptom, if it is present, a diagnosis of narcolepsy with cataplexy is certain to follow. If the episodes are milder, a detailed history and probably the use of journaling the symptomatic episodes may be required as there is no other way to uncover the existence of cataplexy.
Without cataplexy narcoleptic symptoms can often be managed with careful lifestyle changes such as dietary guidelines, strict adherence of bedtimes and scheduled daytime naps. Often, drug therapies that include the use of stimulants and antidepressants are required.
Narcolepsy patients with cataplexy almost always need to be treated with drugs.
Behavioral and Pharmacological Treatments
avoid sleep deprivation
involve the people you associate with regularly
Selective serotonin reuptake inhibitors
The most effective drug treatment for cataplexy and EDS is gammahydroxybutyric acid (GHB). It is the only drug approved by the FDA for the treatment of cataplexy. It is sold in the USA as sodium oxybate and is produces as the drug Xyrem.
Xyrem works on the part of the brain that controls sleep cycles. At higher levels, as a very effective sedative. Promoting deep restful sleep at lower levels it is a stimulant that keeps EDS at bay.
GHB is a highly regulated substance as it is associated with illegal abuse. IT has a high rate of dependence and serious withdrawal symptoms. It induces a euphoric effect that is similar to the street drug ecstasy and it has been used to facilitate date rape. It has the ability to stimulate the human growth hormone and so it has also been abused by body builders. Overdoses of GHB can result in respiratory depression, bradycardia, seizures and death.
The most common side effects of Xyrem are:
- nausea and vomiting
- urinary incontinence
Sodium Oxybate needs careful consideration with patients that have heart concerns as it raises sodium levels in the blood.
Narcolepsy is an intrusive sleeping disorder that is currently affecting around 200,000 American people. Narcolepsy is one of medical science’s most unique sleeping disorders. Not only is Narcolepsy itself an odd and interesting disorder, it comes as a package deal with various other unique medical problems like Cataplexy, hallucinations, Automatic Behavior, and even Sleep Paralysis. Patients who have been diagnosed with the disorder should learn about all types of Narcolepsy, and undiagnosed patients who may be suffering should study Narcolepsy and its different types.
The Different Types of Narcolepsy
Technically, there are not different types of Narcolepsy. Unlike other sleep disorders like Sleep Apnea, there is not a central and an obstructive classification. Narcolepsy is the same in all patients who suffer from its symptoms. The disorder is defined as the uncontrollable urge to sleep at inappropriate times during the day; this is absolutely true in all patients with Narcolepsy, so technically, there is one medically recognized type of the disorder.
More often than not, however, most Narcolepsy patients experience at least one or more complicated disorders in addition to their Narcolepsy. The majority of narcoleptics also suffer from one of the following four complications: Cataplexy, Hypnagogic Hallucinations, Automatic Behavior, and Sleep Paralysis.
Narcolepsy with Cataplexy
Only three million people in the entire world suffer from some type/degree of Narcolepsy. Out of those three million people, only two percent also suffer from Cataplexy. Cataplexy is thought to be unique to Narcolepsy patients, and is often one of the disorder’s primary identifiers; it is often associated with other Narcolepsy symptoms like Sleep Paralysis and hallucinations.
Cataplexy is defined as the sudden loss of muscle tone and strength coupled with severe daytime sleepiness. The sudden loss of muscle strength can be mild or severe. In mild Cataplexy episodes, there may only be a small portion of muscle on the body that becomes paralyzed. In opposition, severe episodes of Cataplexy can leave the entire body unable to move or speak for several minutes at a time. These sudden changes in muscle tone are often triggered by the patient’s witnessing of a strong emotional response.
Laughter, crying, and shouting are some of the most common triggers in people with this type of Narcolepsy.
Cataplexy is extremely dangerous, and is one the leading causes for accidents, especially automobile accidents. Because Narcolepsy patients are unable to determine when an episode of Cataplexy will occur, there Cataplexy victims often live in constant fear of witnessing a trigger and embarrassing themselves in public.
Narcolepsy with Hallucinations
Unlike the rare Cataplexy, this type of Narcolepsy is extremely common. Patients who suffer from Narcolepsy are at a high risk for experiencing Hypnagogic Hallucinations; in fact, hallucinations are one of the disorder’s most commonly recognizable symptoms. Where Cataplexy is only present in two percent of all Narcolepsy patients across the world, as many as fifty percent of all narcoleptics are thought to suffer from Hypnagogic Hallucinations.
There are two main types of hallucinations: Hypnagogic Hallucinations and Hypnopompic Hallucinations. Hypnagogic Hallucinations occur during the transitional period that takes place when the brain is shifting from a place of wakefulness to one of sleep. Hypnopompic Hallucinations, on the other hand, are the opposite; these hallucinations occur when the body is shifting from a place of sleep to one of wakefulness. Hypnagogic Hallucinations are seen in this type of Narcolepsy, and can be extremely vivid.
Patients who also suffer from Hypnagogic Hallucinations experience intense dream-like visions when they are falling asleep. Many Hypnagogic Hallucinations incorporate various images that actually present in the sleeper’s environment into vivid hallucinations. These hallucinations can involve the manipulation of the patient’s vision, hearing, sense of touch, sense of balance, and even their ability to move. Many Narcolepsy patients who suffer from the hallucinations describe them as bizarre, and even frightening. Because the hallucinations are so realistic, patients become afraid of them; many patients even fear the hallucinations as a sign of mental instability.
Narcolepsy with Automatic Behavior
One of the most interesting, and consequently dangerous, types of Narcolepsy includes symptoms of Automatic Behavior. Often confused with sleep walking, Automatic Behavior refers to the continuation of an activity that was taking place while before falling asleep after falling asleep. In many cases, Automatic Behavior occurs when patients with this type of Narcolepsy attempt to fight off sleepiness in an effort to complete an activity. For example, patients who suffer from this type of Narcolepsy may suddenly fall asleep while washing the dishes. Instead of dropping the plate they were holding when they suddenly fell asleep, patients with Automatic behavior continue washing the plate as if they remained awake.
Although Narcolepsy patients with Automatic Behavior continue performing the activity while unconscious, they have absolutely no memory of the even upon wakening; the event is out of conscious control. Unconscious periods of continued behavior can last anywhere from a few short seconds to as long as half an hour. Patients who experience this unique disorder often wake up in strange places disoriented and frightened. Automatic Behavior becomes a serious and dangerous problem when it occurs during dangerous activities like driving or cooking.
Automatic Behavior, also called automatism, is not unique to Narcolepsy types. It is a common symptom of many different psychiatric and neurological disorders. Schizophrenia and Fugue are common psychiatric disorders that are associated with Automatic behavior.
Narcolepsy with Sleep Paralysis
Although it is possible to see symptoms of Sleep Paralysis in patients plagued with disorders other than Narcolepsy, Sleep Paralysis is most commonly associated with this form of Narcolepsy. In addition to Cataplexy and hallucinations, Sleep Paralysis, which can also be called Isolated Sleep Paralysis, completes the trio of famous Narcolepsy identifiers (in addition to daytime sleepiness, of course).
Narcoleptics who suffer from Sleep Paralysis experience periods on paralysis, either when going to sleep or upon wakening. During an attack of Sleep Paralysis, the victim is completely unable to move voluntarily, and must wait for the attack to pass. Although Sleep Paralysis is passing, and not physically harmful, it can still be terrifying and stressful to try and deal with on top of Narcolepsy’s other problems and complications.
Narcolepsy without cataplexy and narcolepsy with cataplexy are two different classifications in international diagnosis.
While there is little known about the cause of narcolepsy, over the past few decades scientists have made huge leaps in the understanding of cataplexy.
Evidence of a Deficiency in Hypocretin-1 in patients with cataplexy has given Narcolepsy with cataplexy its very own biomarker. During clinical testing of the cerebrospinal fluid (CSF), nearly all narcolepsy patients with cataplexy had a severe deficiency of the protein hypocretin-1which is normally located in the hypothalamus. The reason for this deficiency is unknown, but there is speculation that it may be an autoimmune dysfunction. Cataplexy is also sometimes referred to as a hypocretin deficiency syndrome.
Narcolepsy without Cataplexy
The diagnosis of narcolepsy sleep disorder can be a difficult one to confirm. There are no physical tests. No genetic testing, no blood tests.
Doctors will take a complete history and use clinical testing like the multiple sleep latency test or MSLT, and perform a nocturnal Polysomnogram to determine the existence of narcolepsy or its symptoms.
During the nocturnal Polysomnogram, the patient is placed in a comfortable room and monitored all night to determine the cause of symptoms like insomnia and EDS. An electroencephalogram or EEG is used as well as video monitoring to record body functions and sleep patterns and activity. Some pertinent data that is recorded would be breathing, including the existence of apnea. Pulse and blood pressure, Snoring, sleep talking and restlessness. The onset and duration of REM sleep is carefully recorded.
The MSLT is done the day after the nocturnal Polysomnogram. The patient will stay at the clinic the rest of the day and have 5 naps during their stay. The naps are done in the same relaxing setting as the nocturnal Polysomnogram. An EEG is used again, as well as video surveillance to monitor and record the time it takes the subject to fall asleep, or if the onset of REM sleep is accomplished. These factors are standard to diagnose narcolepsy.
Narcolepsy alone can be difficult to live with. Falling asleep at inappropriate times wreaks havoc on patients’ lives. School, work and relationships become impossible to maintain and patients sometimes then succumb to depression and reduced sense of self-worth.
With carefully planned lifestyle changes such as tight bedtime routine, strict diet and scheduled daytime naps, patients with mild narcolepsy symptoms can sometimes beat the disease. However, when symptoms are more severe, the lifestyle changes are still utilized, but drug therapy is added to round out the treatment.
Drug treatment for narcolepsy includes stimulants such as Provigil or Nuvigil are used to combat Excessive Daytime Sleepiness or EDS. These drugs help the narcoleptic stay awake during the day. Many people with narcolepsy need stimulants to function at an acceptable level in their daily lives and to live successful and prosperous lives.
|>Carefully controlled night time sleep
|sodium oxybate, GHB
|Scheduled daytime naps
|smaller, lighter, more frequent meals
|Involvement of friends, family and associates
|Selegiline (also anti-cataplectic)
Narcolepsy with Cataplexy
Patients who have the condition: narcolepsy with cataplexy, also suffer the same EDS symptoms as narcolepsy without cataplexy. However, they have the added stress of the symptom of cataplexy.
Cataplexy is a bizarre and rare phenomenon that affects over two million patients with narcolepsy. When a patient experiences cataplexy, they lose muscle tone and function, suddenly and without warning.
These episodes can be so slight they go unnoticed. Perhaps the patient will feel clumsy for a moment. Or an eyelid may droop or the cheek may go slack. It may last for as little as a few seconds. Hardly enough time to register the change.
A cataplexy episode can also be more severe. In the event of a severe episode, a person can lose all muscle control in his or her body and a total collapse is experienced.
Cataplexy can cause psychological trauma, particularly after the first episode or when it strikes in children because the collapse is experienced while completely awake and alert. The inability to move or respond to their environment is particularly terrifying for many patients.
What Causes Narcolepsy?
No one knows what causes narcolepsy without cataplexy. There is some speculation that it is genetic, but there is insufficient evidence as it rarely runs in families. Recently, some evidence has come to light that it may be an autoimmune function, like cataplexy. There must be much more research done to confirm this and even longer before a suitable diagnosis and treatment can be formulated on the autoimmune basis.
Sodium Oxybate- Xyrem
Xyrem is the brand name for the drug sodium oxybate. The chemical is gammahydroxybutyric acid or GHB. GHB is the most effective treatment of cataplexy. It has the disorder covered on both ends of the spectrum. GHB is paradoxical in its behavior in the body. It is both an extremely effective sedative and a potent stimulant. In high doses, it interacts with the GAGA system; it has a sedative effect and inhibits the release of dopamine in the brain. At a lower dose, it works as a stimulant. It stimulates the brain to produce dopamine and glutamate.
GHB has been successfully used to treat several disorders, such as depression and insomnia for years in other countries. In the US, however, it is only approved by the FDA for the treatment of Cataplexy. It does not affect the deficiency of hypocretin, but the symptoms of cataplexy are greatly improved.
GHB is associated with tremendous amounts of negativity. In high doses, it is a highly effective sedative. It has been called the “date rape drug” for its most infamous criminal use. It is sometimes abused as a street drug, as in moderate amounts, it causes euphoria. On the street, it’s referred to by several names, including as “liquid ecstasy.” It has been abused by body builders as well. In small amounts it stimulates the production of the human growth hormone. It is addictive and abrupt cessation can cause terrible withdrawal symptoms.
Antidepressants for Cataplexy
Even though the FDA has not approved them for this use, several antidepressants are being used to manage the symptoms of cataplexy. There needs to be a lot more research done into the effectiveness of antidepressants for cataplexy.
Tricyclic antidepressants have shown a lot of promise in the treatment of narcolepsy and its symptoms. Unfortunately, there are a whole host of frightening side effects that are common to tricyclic antidepressants. Although they were a popular treatment in the past, they are not used very often anymore.
Although less proven, the selective serotonin reuptake inhibitors, or SSRIs, like Prozac, Paxil and Zoloft are commonly used to treat these symptoms. Their effectiveness is the subject for debate among doctors and scientists until proven one way or another.
Getting the right narcolepsy medication can be a complicated, trial and error type of ordeal for patients that suffer from the symptoms of narcolepsy. Some medications for narcolepsy are not suitable for everyone, and for this reason it sometimes takes years for some people to receive the correct combination of medical treatments and drugs.
Who Needs Medication for Narcolepsy?
People suffering with the symptoms of narcolepsy can sometimes get through every day by simply making lifestyle changes. These changes include better sleep schedules, routine naps at set times throughout the day and a well-balanced diet. These are the lucky few who do not need medication. Narcolepsy has some complications that are worse than a mere inconvenience. Those experiencing cataplexy are in real danger of becoming seriously injured at any time during the day. Patients with narcolepsy and cataplexy must have the medication of narcolepsy symptoms.
Narcolepsy is a disorder characterized by sudden, yet brief, periods when sleep is uncontrollable. When seeking medications narcolepsy patients should be prepared to give a complete history to their physician. Patients must report a detailed history of personal medical and health information and keep a journal of sleep disturbances, insomnia, hallucinations and sleep attacks for their doctor when seeking treatment and medications of narcolepsy symptoms.
Symptoms of Narcolepsy
Narcolepsy has a wide range of symptoms that can drastically impact the lives of the people suffering from them. Many of the symptoms are shared among several other sleep disorders such as insomnia and sleep apnea. This fact alone makes it very hard to diagnose the disease.
The following is a list of some of these symptoms.
- E.D.S. or excessive daytime sleepiness is the most common of all narcolepsy symptoms, in fact, in many ways; E.D.S. is narcolepsy when you think about it.
- Cataplexy is when a person suddenly loses his or her muscle control. This is sometimes mistaken for epilepsy due to the falls it commonly produces. A narcolepsy patient who suffers with cataplexy is at a higher risk for personal injury, than people who don’t.
- Sleep paralysis is a frightening ordeal that is linked to narcolepsy. Sleep paralysis occurs when a person is falling asleep or just when they’re beginning to wake up. The brain disconnects from the body leaving the person aware, but unable to speak or move. However, it should be stated that many people who occasionally experience sleep paralysis are not always diagnosed with narcolepsy.
- Hallucinations are when a person hears and/or sees things that are not really there. This is a very common factor found in patients who are suffering from sleep paralysis, as well as a symptom of sleep deprivation.
- Insomnia is a symptom of narcolepsy. People with narcolepsy do not actually sleep more hours per day than people without narcolepsy. Their night time sleep is usually interrupted and irregular, causing the strong need to sleep during the day.
Types of Medication and Narcolepsy Treatments
Most medications that are used for the treatment of narcolepsy but are not for E.D.S. are stimulants. Stimulants help the patients get through the day feeling energized and help regulate their sleep cycles. Among these is a wide array of Amphetamines including:
- Dextroamphetamine (Dexedrine)
- Methamphetamine (Desoxin)
- Amphetamine Salts (Adderall)
- Methyphendiate (Ritalin)
- Armodafinil (Nuvigil)
- Modafinil (Provigil)
There have been many successes and a few failures over the years in the quest to find successful treatments of narcolepsy. One medication, Pemoline (Cylert) was removed from the market due to the risk of liver failure and even death. People taking the listed medications to treat narcolepsy may find some that work and others that don’t. Many neurological disorders share symptoms and treatments with narcolepsy and are often treated with the same drugs. Like these, trial and error is the key to finding the correct combination of medication for each patient. Some of these medications take several weeks to become truly effective. Sometimes the secret is in a very tight combination. Care should be taken as stimulants should not be taken by people with a history of psychiatric issues or heart complications.
Antidepressants help with mood, but they are also useful in the treatment of R.E.M. or rapid eye movement disruptions, hallucinations, and cataplexy.
Some of the more common antidepressant medications include:
- Venlafaxine (Effexor SR)
- Atomoxetine (Strattera)
- Fluoxetine (Prozac)
- Sertraline (Zoloft)
- Protriptyline (Triptil and Vivactil)
- Imipramine (Janamine and Trofanil)
- Desipramine (Norpramine and Petrofran)
- Clomipramine (Anafranil)
A newer drug that is used to treat these same narcoleptic symptoms is Sodium Oxybate (Xyrem). Sodium Oxybate is completely different than the other antidepressants listed, because it has to be taken in separated doses, it is a liquid and it promotes stages three and four of sleep. When taken as directed, Sodium Oxybate can actually eliminate the need for other antidepressants. There are several side effects associated with sodium oxybate. These side effects include: headache, nausea, dizziness, vomiting, and urinary incontinence. A caution to consider are that it is sodium and therefore people with a history of heart disease should not take it.
Other Narcolepsy Treatments
As well as a large number of prescription medications, narcolepsy symptoms can also be treated with lifestyle changes. In most cases these lifestyle changes are an absolute necessity for the person to get the most out of the medication being taken. A “more bang for your buck” mentality should be used when using medications for the treatment of narcolepsy. The following is a list of the changes that people with narcolepsy should make to get the most from their treatment.
- Proper diet
- Avoid caffeine, alcohol, nicotine and over the counter cold medications
- Schedule naps throughout the day, 10 to 15 minutes each, especially after meals
- Improve night time sleeping habits, a regular hour for bedtime and arising helps
- Avoid night time work
- Keep a sleep journal handy at all times to record sleep disturbances and daytime sleep deep breathing exercises and stretching
- Involve all people that you see on a daily basis
Contact your local clinic to request more information about these treatments as well as listing for support groups for narcolepsy and other hypersomnias.