猝睡症__勇士部落

由艾莉森戈撒德  (Google簡易直翻參考）

被診斷患有嗜睡既是一個可怕的和美好的事件。一方面，你剛才已經告訴你有一種罕見的疾病，你可能從來沒有聽說過，知道甚少。另一方面，這是一個極大的安慰，最終會告訴你是不是瘋了或懶惰或任何其他事情的人有標記你的一生。通常有一個時期的悲痛時，認識到這個問題是一個終身疾病，不會消失，但有一個很大的自由，接受疾病和學習如何使你生活中最內它的局限性對你的地方。

當我很小的時候，在一年級，我的老師打電話給我的母親，擔心，因為我在課堂上睡著了，幾乎每天都有。雖然它被認為是奇怪，它決定什麼應該做，因為我對此並沒有擾亂課堂，我的成績沒有受到從我的國家行動方案。它只是人們得知我將我的桌子上睡著醒來後，將與無妨。

在高中時，我總是非常困倦。老師會說我太安靜，不參與課堂。說實話，我沒有聽他們有一個良好的大塊的時間，因為我想我的書在預讀和獲得成功的類，以便我能有安靜的時間在我的書桌結束對階級。同樣，我是一個優秀的學生，沒有造成麻煩，所以我的大多數教師所接受這一點。不過，我經常看到看上去像一個殭屍，並感到十分憤怒，由教師和同學會告訴我“只是微笑”。他們不明白的重量的嗜睡我正在經歷。到最後的我被送到高中放學回家幾次，因為我會掉下眼淚的時候任何人會認為我不夠努力。我很沮喪和憤怒，沒有人能理解我是盡我所能，和我的嗜睡是我無法控制。

我高中畢業後，有幾個工作，他們都因為我的嗜睡結束。第一次持續了六個星期，另一持續了兩個星期，我的記錄按住工作4年。然而，4年的工作是地獄般的我，因為我是不斷被斥責為失誤，在我的辦公桌上睡著了，睡覺，通過業務會議。後來我開始做研究，並在互聯網上接觸一個睡眠專家，誰也說我的症狀聽起來像教科書嗜睡症。

我有一個名稱和一些科學問題進行備份，太精彩了。我想如果我發現我的雇主，這是真實的，並解釋它是如何工作，他們可能會接受它，容納我的國家行動方案和不同的工作時間，這樣我可以更好地履行我的職務。據我失望的是，他們不相信我。在他們的心中，因為他們從來沒有聽說過這種疾病，他們可以做出他們自己的規則應該如何處理。一要堅持，我只是整天喝咖啡。另外想給我一些藥片她是通過一個傳銷銷售計劃，因為她真的相信他們是能夠治愈任何疾病（包括癌症和艾滋病）。最後他們解僱了我從我工作，但我很高興離開這些人，只是把我下來，讓我生病，其無理要求，強迫性睡眠剝奪。

正如我告訴我的朋友們猝睡症，其中一些試圖提供一個神奇的治愈這種疾病。咖啡因，薄荷茶，例行的演習，維他命和草藥補充品，有機食品。它是人類的天性想要一個愛的人的治療他們的疾病與波魔術棒，但它是錯誤的人提供意見時，並不真正了解這種疾病的原因。如果你是朋友或家庭成員試圖提供支持，最好的方法來幫助只是聽，和你所愛的人會告訴你，如果有任何方法，他們想請你幫忙（開辦遊戲機時，不會開車，例如）。推動最新時尚對他們來說是唯一的補救辦法將會使他們退縮，因為他們不覺得你知道他們正在經歷什麼。

有時候，家庭和病人本身不舒服的想法只是為了興奮劑採取足夠長的時間保持清醒去上班或上學。當猝倒是抗抑鬱藥物治療，有心理疾病的恥辱添加到這個問題。有些人認為不必採取抗抑鬱意味著你必須是“瘋狂”，沒辦法，是遠離真理。無論是採取這樣的藥物治療抑鬱症或猝倒，它只是一種治療的大腦中的化學不平衡，就像胰島素是治療糖尿病的高血糖。這是生活的必需品。

一旦發作性睡眠病已經接受了，但仍然是一個神奇的療法不斷攻勢被強加給她。很多人都絕對相信，順勢療法能治愈嗜睡症。然而，這些善意的人們看不到嗜睡症是一種神經系統疾病，這種疾病目前無法治愈，唯一的治療以提高生活質量。有些事情可能與順勢療法可治愈或吃某些食物。然而，嗜睡症是一種神經不正常。您不能治愈阿爾茨海默氏症，帕金森氏症，多發性硬化症等疾病或其他與順勢療法。僅僅因為猝睡症似乎沒有被削弱並不意味著它有任何減少身體疾病。它發現於 2001年narcoleptics患者缺乏某種類型的細胞在大腦中。這些細胞能產生一種化學名為 orexin或丘腦分泌是白天讓你清醒。沒有大腦分泌這種化學品，發作性睡眠病的經驗和不可控制的極端渴望睡眠。醫生們正在研究這種化學品，希望，也許可以採取藥丸或注射的形式保持narcoleptics清醒，但目前科學是處於初級階段，還要經過很多年才能上市，作為一種治療或治愈嗜睡症。

目前的標準治療嗜睡症嗜睡是興奮劑的打擊和抗抑鬱藥對猝倒。苯丙胺類興奮劑，可還是一個新的非藥物安非他明所謂 Modfinil（Alertec）。抗抑鬱藥往往在服用SSRI類，但究竟如何防止猝倒仍是未知之數。即使藥物，重要的是讓自己預定小睡如果你覺得他們是必要的。當你的身體是在你停止尖叫和躺下，你要聽！家人和朋友要顧及這一點，不要試圖告訴發作性睡眠病的人就忽視它。我看過一篇由睡眠專家估計，該嗜睡的睡眠病的人，相當於一個正常的人誰沒有睡在40個小時。於這種狀態，是不可能發揮作用，你必須休息或受傷的風險和錯誤的任何任務，您試圖執行。駕駛是特別危險的這種狀態，所以我經常在拉在一旁的道路或進入停車場，睡一個小時，然後再繼續。這是您的安全，不值得冒著被某個地方在特定時間。對我來說，在入睡了車輪擊中另一輛車明白。

飲食中也扮演一個角色覺醒，雖然它不是最要緊的，和高端的本領。每發作性睡眠是不同的，有不同的觸發嗜睡。但是，也有許多常見的食物，讓人們昏昏欲睡，他們可避免在夜間或吃時，恰當的困倦。牛奶和麵包可能是最常見的睡眠誘導食物。麵食使我在幾分鐘內睡覺。我也聽到報告花生醬和香蕉引起嗜睡。一般來說，吃富含蛋白質的食物，如肉類和雞蛋的早餐和午餐，避免了很多乳製品和澱粉在白天可以幫助你保持高度的警覺，減少需要小睡。就個人而言，我避免咖啡因和精製糖，因為它們可能導致電湧在短期內能量的時間，但減弱的影響時，我感到非常困倦，必須睡覺。如果我要駕駛長途電話，我會駕駛，直到我開始感到累了，然後拉了一個國家行動方案和/或1杯咖啡，然後再繼續。我特別避免咖啡因後，下午三時，除非絕對必要的駕駛，因為咖啡因晚了一天擾亂我的睡眠，結果我輸了大部分的第二天睡覺。

談起其他narcoleptics是一個偉大的方式來學習的技巧和竅門，以保持清醒和應付日常審判的疾病。如果有一個支持小組在您的地區是值得努力去開會。也有許多資源和研究員 narcoleptics網上聊天，願意提供支持。有關信息和一個列表的鏈接，幫助您在您的研究，請訪問睡眠喚醒障礙協會在多倫多的網站 http://swda.cjb.net。

原文:

Accepting Narcolepsy: Advice for Patients and Their Families
by Alison Gothard

To be diagnosed with narcolepsy is both a terrible and a wonderful event. On one hand, you have just been told you have a rare illness that you have likely never heard of before and know very little about. On the other hand, it is a great relief to finally be told you're not crazy or lazy or any of the other things people have labelled you your whole life. There is usually a period of grief when realising that this problem is a life-long illness that won't be going away, but there is a great freedom in accepting the illness and learning how to make the most of your life within the limitations it places on you.

When I was very young, in grade one, my teacher called my mother, concerned because I fell asleep in class almost every day. Although it was considered strange, it was decided that nothing should be done about it as I was not disrupting the class and my grades did not suffer from my naps. It just became known that I would fall asleep on my desk and would wake up later with no harm done.

In high school, I was always very sleepy. Teachers would comment that I was too quiet and didn't participate in class. Truthfully, I was not listening to them for a good chunk of the time, because I was trying to read ahead in my book and get ahead of class so I could have some quiet time at my desk toward the end of class. Again, I was an excellent student that did not cause trouble, so most of my teachers accepted this. However, I was often seen looking like a zombie and was very frustrated by teachers and fellow students that told me to "just smile". They couldn't understand the weight of the sleepiness I was experiencing. Toward the end of high school I was sent home from school several times because I would burst into tears when anyone would suggest I wasn't trying hard enough. I was frustrated and angry that nobody could understand that I was doing my best, and that my sleepiness was beyond my control.

After high school I had several jobs, all of them ending due to my sleepiness. The first lasted six weeks, another lasted two weeks, and my record for holding down a job is four years. However, the four-year job was hellish for me, as I was constantly being berated for making errors, falling asleep at my desk, and sleeping through business meetings. Eventually I started doing research on the internet and contacted a sleep specialist, who said it my symptoms sounded like textbook narcolepsy.

Having a name for my problem and some science to back it up was wonderful. I thought if I showed my employers that this is real and explained how it works, that they might accept it and accommodate me with naps and different work hours so I could perform my job better. To my dismay, they didn't believe me. In their minds, since they had never heard of this disease, they could make up their own rules about how it should be handled. One insisted that I should just drink coffee all day. The other tried to give me some pills she was selling through an MLM scheme, because she truly believed they were capable of curing any ailment (including cancer and HIV). Eventually they fired me from my job, but I was happy to leave these people that were only putting me down and making me ill with their unreasonable demands and forced sleep deprivation.

As I told my friends about narcolepsy, some of them tried to offer a magic cure for the disease. Caffeine, peppermint tea, an exercise routine, vitamins and herbal supplements, organic foods. It is human nature to want to cure a loved one of their disease with a wave of a magic wand, but it is misguided when the person giving advice does not actually understand the cause of the disease. If you are a friend or family member trying to provide support, the best way to help is just to listen, and your loved one will tell you if there is any way they would like you to help out (offering rides when they cannot drive, for example). Pushing the latest fad remedy on them is only going to make them shy away because they don't feel that you understand what they are going through.

Sometimes families and the patients themselves are uncomfortable with the idea of taking stimulants just to stay awake long enough to go to work or school. When cataplexy is treated with antidepressants, there is the stigma of mental illness added to the problem. Some people think having to take an antidepressant means you must be "crazy", and nothing could be farther from the truth. Whether such a drug is taken for depression or for cataplexy, it is merely a treatment for a chemical imbalance in the brain, just like insulin is a treatment for high blood sugar in diabetics. It is a necessity for living.

Once the narcoleptic has accepted the illness, there is still a constant barrage of magic cures being thrust upon her. Many people are absolutely convinced that homeopathy can cure narcolepsy. However, these well-meaning people do not see that narcolepsy is a neurological disease that currently cannot be cured, only treated to improve the quality of life. Some things may be curable with homeopathic remedies or eating specific foods. However, narcolepsy is a neurological abnormality. You can't cure Alzheimer's, Parkinson's, multiple sclerosis or other such diseases with homeopathy. Just because narcolepsy doesn't appear to be as debilitating does not mean it is any less a physical ailment. It was discovered in 2001 that narcoleptics patients lack a certain type of cells in the brain. These cells produce a chemical called orexin or hypocretin that are secreted during the day to keep you awake. Without the brain secreting this chemical, the narcoleptic experiences the extreme and uncontrollable urge to sleep. Doctors are examining this chemical in hopes that maybe it can be taken in pill or injection form to keep narcoleptics awake, but currently that science is in its infancy and is years away from being available as a treatment or cure for narcolepsy.

The current standard treatment for narcolepsy is stimulants to combat sleepiness, and antidepressants for cataplexy. Stimulants may be amphetamines or a new non-amphetamine drug called Modfinil (Alertec). Antidepressants tend to be in the SSRI class, although exactly how they prevent cataplexy is still unknown. Even with drugs, it is important to allow yourself scheduled naps if you feel they are necessary. When your body is screaming at you to stop and lie down, you need to listen! Family and friends need to be sensitive to this and not try to tell the narcoleptic person to just ignore it. I have read an estimate by a sleep specialist that the sleepiness of a narcoleptic person is equivalent to a normal person who has not slept in 40 hours. In this state, it is impossible to function and you MUST rest or risk injury and errors in whatever task you are trying to perform. Driving is especially dangerous in this state, so I frequently pull over to the side of the road or into a parking lot and sleep for an hour before continuing. It is not worth risking your safety to be somewhere at a specific time. For me, it took falling asleep at the wheel and hitting another car to understand that.

Diet also plays a role in wakefulness, although it is not the be-all-and-end-all. Every narcoleptic is different and has different triggers for sleepiness. However, there are many foods that commonly make people sleepy and they can be avoided or eaten at night when it is appropriate to be sleepy. Milk and bread are probably the most commonly sleep-inducing foods. Pasta puts me to sleep in minutes. I have also heard reports of peanut butter and bananas causing sleepiness. Generally, eating protein-rich foods such as meat and eggs for breakfast and lunch and avoiding dairy and a lot of starch during the day helps you stay more alert and reduces the need for naps. Personally, I avoid caffeine and refined sugar, as they may cause a surge in energy for a short period of time, but when the effects wear off I feel extremely drowsy and have to sleep. If I need to drive a long distance, I will drive until I start to feel tired, then pull over for a nap and/or a cup of coffee before continuing. I especially avoid caffeine after 3PM unless absolutely necessary for driving, as caffeine late in the day disrupts my sleep and results in me losing most of the following day to sleep.

Talking to other narcoleptics is a great way to learn tips and tricks to stay awake and cope with the daily trials of the illness. If there is a support group in your area it is worth the effort to go to a meeting. There are also many resources online and fellow narcoleptics willing to chat and offer support. For information and a list of links to help you in your research, visit the Sleep Wake Disorders Association of Toronto web site at http://swda.cjb.net.

http://www.sleepwaketoronto.org/Accepting.htm

轉載自CANADA
Sleep Wake Disorders Association Toronto
Website: http://www.sleepwaketoronto.org/
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