321世界睡眠日——原来说睡就睡也是一种病

2023-03-23 网络 网络 发表于上海

3月21日是世界睡眠日,提到睡眠,可能大家第一时间想到的是失眠导致不得不“早C晚A”的痛苦,纷纷实名羡慕可以“秒睡”的人。

3月21日是世界睡眠日,提到睡眠,可能大家第一时间想到的是失眠导致不得不“早C晚A”的痛苦,纷纷实名羡慕可以“秒睡”的人。羡慕的背后,是“秒睡”族面对无法遏制的睡意的痛苦与不被理解的抑郁。

我是在诊室里接待的小伟(化名)和他的妈妈。据小伟妈妈介绍,小伟正在上初一,平时学习成绩一直在班里名列前茅,但是最近成绩却急转直下,老师反应小伟频繁在课上打瞌睡,学习状态不好,便来医院就诊。

成绩下降是家长注意到小孩变化的指标,可变化却早有征兆。经过对小伟的询问,虽然一直在睡,但是睡的很不踏实,睡眠幻觉、鬼压床的感觉频频影响他的睡眠质量:“晚上睡觉有次感觉家里进了小偷,然后看到小偷偷完了家里的东西,我却动不了。”在小伟的描述时,我注意到他的手出现过一些不自觉重复性的动作,结合“课间打瞌睡”、“睡眠幻觉、鬼压床”、“手部小动作”这些症状,初步判断小伟可能得了一种罕见的神经疾病——发作性睡病。 

发作性睡病是什么?

发作性睡病是全球公认的罕见病1,发病率极低。在亚洲,我国台湾地区的患病率为0.0129%,韩国的患病率为0.015%。1我国经过多年的公众教育,目前在患者组织“觉主家”明确登记姓名的患者仅有1600人,在几大睡眠中心登记的病例不足6000人。

发作性睡病以日间过度思睡(EDS)、猝倒、入睡前幻觉、睡眠瘫痪、夜间睡眠紊乱为主要临床表现,其中,EDS、猝倒、入睡前幻觉和睡眠瘫痪合称为发作性睡病四联症。EDS是发作性睡病的主要临床表现,绝大多数患者都有EDS症状,虽然晚上的睡眠时间很充足,但患者在白天依然会突然睡着,甚至在走路、吃饭和说话时也能骤然入睡,还会出现一些无意识的动作。猝倒通常在EDS出现后1年内发生,患者在特别高兴或情绪变化时会出现眼皮下垂、吐舌头、抬不起头、膝盖弯曲等情况,甚至会突然瘫倒在地,发作时间通常不超过2分钟。入睡前幻觉是指患者在入睡时发生梦境样体验,有一种“灵魂出窍”的感觉,一般为恐怖或不愉快的内容。睡眠瘫痪则类似于“鬼压床”,患者在似睡非睡或将醒未醒的时候,突然全身不能动弹,也不能发声,一般持续数十秒到数分钟,在身体受到触碰时可立即恢复正常。

“经常打瞌睡”可能是发作性睡病

如何治疗发作性睡病?

经过夜间多导睡眠检测(nPSG)和日间多次睡眠潜伏期试验(MSLT),结合小伟的临床症状表现,我为小伟确诊了发作性睡病。作为一名神经内科医生,我争取通过正确的诊断和及早的治疗,来帮助患者改善生活状态。以发作性睡病为例,大部分儿童、青少年发作性睡病患者无法正常接受教育,成年后面临较无患病人群降低30%的低就业率2,严重影响患者和家庭的生活质量和身心健康。发作性睡病作为罕见病,缺乏治愈性药物,且对症治疗药物有限。目前我国上市的常用药物均没有发作性睡病适应症,仅能通过部分药物对症,帮助患者缓解症状,同时绝大部分治疗药物是精神管控药物,患者购药也非常困难。

希望在一步步靠近。日前,欧洲批准了针对发作性睡病的药物替洛利生应用于6岁以上发作性睡病患者,且由于该药物是非精神管控药物,对于像小伟这样的孩子来说,是一个“有药可用”的好消息。相信不久的将来,在中国,像小伟这样的孩子可以用上这样的药,重获正常的学习和生活。

与许许多多难以确诊的患者相比,小伟算幸运的。小伟的父母在网上找到了患者组织,向其他病友了解了更多疾病的情况,同时小伟的父母也表示理解。在父母、老师和同学们的帮助下,小伟学习状态也提升不少。我也希望更多的关注可以帮助罕见病患者获得更明确的诊断,通过早期的干预、及时有效的治疗与支持,患者可以早日走出困境,更好地生活。

1. 中华医学会神经病学分会睡眠障碍学组. 中国发作性睡病诊断与治疗指南(2022版)[J]. 中华神经科杂志, 2022, 55(5): 406-420. DOI: 10.3760/cma.j.cn113694-20211228-00934.

2. Cremaschi RC, Hirotsu C, Tufik S, et al.Arq Neuropsiquiatr. 2020 Jun29;78(8):488-493.;

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    2023-03-23 董海鹏 来自广东省

    睡眠是一个永恒话题,谁都讲不清

    0

  2. [GetPortalCommentsPageByObjectIdResponse(id=2121300, encodeId=05ef21213000f, content=睡眠是一个永恒话题,谁都讲不清, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=http://thirdwx.qlogo.cn/mmopen/vi_32/30yrQPYKndeHChDiaiaxia9cGlrfibfht87aw13tZ9Uibdql4ibxeovoZJDoBWhQpwsuO2tL8MHicYAbI5Gsa5ic97eBGA/132, createdBy=0ddc2188194, createdName=董海鹏, createdTime=Thu Mar 23 10:36:13 CST 2023, time=2023-03-23, status=1, ipAttribution=广东省), GetPortalCommentsPageByObjectIdResponse(id=2121448, encodeId=2f0521214483b, content=睡病, beContent=null, objectType=article, channel=null, level=null, likeNumber=42, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=, createdBy=c3c31528806, createdName=2809, createdTime=Thu Mar 23 22:22:57 CST 2023, time=2023-03-23, status=1, ipAttribution=山西省), GetPortalCommentsPageByObjectIdResponse(id=2120693, encodeId=9d54212069395, content=哈哈哈, beContent=null, objectType=article, channel=null, level=null, likeNumber=49, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=8be18142500, createdName=ms5000001468014743, createdTime=Tue Mar 21 07:10:15 CST 2023, time=2023-03-21, status=1, ipAttribution=北京), GetPortalCommentsPageByObjectIdResponse(id=2120686, encodeId=bf71212068638, content=睡眠不好的人越来越多, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2d3d3015017, createdName=jshbyywk2008, createdTime=Tue Mar 21 06:27:56 CST 2023, time=2023-03-21, status=1, ipAttribution=河北省), GetPortalCommentsPageByObjectIdResponse(id=2120675, encodeId=84c221206e5ae, content=打鼾打得厉害的,晨起嗜睡的,肥胖的都要警惕, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=940a5479132, createdName=ms2000000702445417, createdTime=Tue Mar 21 00:44:40 CST 2023, time=2023-03-21, status=1, ipAttribution=湖南省)]
    2023-03-23 2809 来自山西省

    睡病

    0

  3. [GetPortalCommentsPageByObjectIdResponse(id=2121300, encodeId=05ef21213000f, content=睡眠是一个永恒话题,谁都讲不清, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=http://thirdwx.qlogo.cn/mmopen/vi_32/30yrQPYKndeHChDiaiaxia9cGlrfibfht87aw13tZ9Uibdql4ibxeovoZJDoBWhQpwsuO2tL8MHicYAbI5Gsa5ic97eBGA/132, createdBy=0ddc2188194, createdName=董海鹏, createdTime=Thu Mar 23 10:36:13 CST 2023, time=2023-03-23, status=1, ipAttribution=广东省), GetPortalCommentsPageByObjectIdResponse(id=2121448, encodeId=2f0521214483b, content=睡病, beContent=null, objectType=article, channel=null, level=null, likeNumber=42, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=, createdBy=c3c31528806, createdName=2809, createdTime=Thu Mar 23 22:22:57 CST 2023, time=2023-03-23, status=1, ipAttribution=山西省), GetPortalCommentsPageByObjectIdResponse(id=2120693, encodeId=9d54212069395, content=哈哈哈, beContent=null, objectType=article, channel=null, level=null, likeNumber=49, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=8be18142500, createdName=ms5000001468014743, createdTime=Tue Mar 21 07:10:15 CST 2023, time=2023-03-21, status=1, ipAttribution=北京), GetPortalCommentsPageByObjectIdResponse(id=2120686, encodeId=bf71212068638, content=睡眠不好的人越来越多, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2d3d3015017, createdName=jshbyywk2008, createdTime=Tue Mar 21 06:27:56 CST 2023, time=2023-03-21, status=1, ipAttribution=河北省), GetPortalCommentsPageByObjectIdResponse(id=2120675, encodeId=84c221206e5ae, content=打鼾打得厉害的,晨起嗜睡的,肥胖的都要警惕, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=940a5479132, createdName=ms2000000702445417, createdTime=Tue Mar 21 00:44:40 CST 2023, time=2023-03-21, status=1, ipAttribution=湖南省)]
    2023-03-21 ms5000001468014743 来自北京

    哈哈哈

    0

  4. [GetPortalCommentsPageByObjectIdResponse(id=2121300, encodeId=05ef21213000f, content=睡眠是一个永恒话题,谁都讲不清, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=http://thirdwx.qlogo.cn/mmopen/vi_32/30yrQPYKndeHChDiaiaxia9cGlrfibfht87aw13tZ9Uibdql4ibxeovoZJDoBWhQpwsuO2tL8MHicYAbI5Gsa5ic97eBGA/132, createdBy=0ddc2188194, createdName=董海鹏, createdTime=Thu Mar 23 10:36:13 CST 2023, time=2023-03-23, status=1, ipAttribution=广东省), GetPortalCommentsPageByObjectIdResponse(id=2121448, encodeId=2f0521214483b, content=睡病, beContent=null, objectType=article, channel=null, level=null, likeNumber=42, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=, createdBy=c3c31528806, createdName=2809, createdTime=Thu Mar 23 22:22:57 CST 2023, time=2023-03-23, status=1, ipAttribution=山西省), GetPortalCommentsPageByObjectIdResponse(id=2120693, encodeId=9d54212069395, content=哈哈哈, beContent=null, objectType=article, channel=null, level=null, likeNumber=49, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=8be18142500, createdName=ms5000001468014743, createdTime=Tue Mar 21 07:10:15 CST 2023, time=2023-03-21, status=1, ipAttribution=北京), GetPortalCommentsPageByObjectIdResponse(id=2120686, encodeId=bf71212068638, content=睡眠不好的人越来越多, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2d3d3015017, createdName=jshbyywk2008, createdTime=Tue Mar 21 06:27:56 CST 2023, time=2023-03-21, status=1, ipAttribution=河北省), GetPortalCommentsPageByObjectIdResponse(id=2120675, encodeId=84c221206e5ae, content=打鼾打得厉害的,晨起嗜睡的,肥胖的都要警惕, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=940a5479132, createdName=ms2000000702445417, createdTime=Tue Mar 21 00:44:40 CST 2023, time=2023-03-21, status=1, ipAttribution=湖南省)]
    2023-03-21 jshbyywk2008 来自河北省

    睡眠不好的人越来越多

    0

  5. [GetPortalCommentsPageByObjectIdResponse(id=2121300, encodeId=05ef21213000f, content=睡眠是一个永恒话题,谁都讲不清, beContent=null, objectType=article, channel=null, level=null, likeNumber=41, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=http://thirdwx.qlogo.cn/mmopen/vi_32/30yrQPYKndeHChDiaiaxia9cGlrfibfht87aw13tZ9Uibdql4ibxeovoZJDoBWhQpwsuO2tL8MHicYAbI5Gsa5ic97eBGA/132, createdBy=0ddc2188194, createdName=董海鹏, createdTime=Thu Mar 23 10:36:13 CST 2023, time=2023-03-23, status=1, ipAttribution=广东省), GetPortalCommentsPageByObjectIdResponse(id=2121448, encodeId=2f0521214483b, content=睡病, beContent=null, objectType=article, channel=null, level=null, likeNumber=42, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=, createdBy=c3c31528806, createdName=2809, createdTime=Thu Mar 23 22:22:57 CST 2023, time=2023-03-23, status=1, ipAttribution=山西省), GetPortalCommentsPageByObjectIdResponse(id=2120693, encodeId=9d54212069395, content=哈哈哈, beContent=null, objectType=article, channel=null, level=null, likeNumber=49, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=8be18142500, createdName=ms5000001468014743, createdTime=Tue Mar 21 07:10:15 CST 2023, time=2023-03-21, status=1, ipAttribution=北京), GetPortalCommentsPageByObjectIdResponse(id=2120686, encodeId=bf71212068638, content=睡眠不好的人越来越多, beContent=null, objectType=article, channel=null, level=null, likeNumber=50, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=2d3d3015017, createdName=jshbyywk2008, createdTime=Tue Mar 21 06:27:56 CST 2023, time=2023-03-21, status=1, ipAttribution=河北省), GetPortalCommentsPageByObjectIdResponse(id=2120675, encodeId=84c221206e5ae, content=打鼾打得厉害的,晨起嗜睡的,肥胖的都要警惕, beContent=null, objectType=article, channel=null, level=null, likeNumber=57, replyNumber=0, topicName=null, topicId=null, topicList=[], attachment=null, authenticateStatus=null, createdAvatar=null, createdBy=940a5479132, createdName=ms2000000702445417, createdTime=Tue Mar 21 00:44:40 CST 2023, time=2023-03-21, status=1, ipAttribution=湖南省)]
    2023-03-21 ms2000000702445417 来自湖南省

    打鼾打得厉害的,晨起嗜睡的,肥胖的都要警惕

    0