dweinst3

Hi everyone, I posted a message on this board in January regarding a potential link between Tourette's Syndrome and sleep apnea ("Tourettes and Sleep Apnea?" 01/03/07). To recap, I had been diagnosed with Obstructive Sleep Apnea (OSA) despite failing to match the typical profile for people with this disorder. (Sleep apnea is loosely defined as stoppage of normal breathing for short periods of time during sleep.) The usual remedies for OSA were not working, and I believed that my Tourette's tics (which I've had since about age six; I'm now 20 and in college) were somehow causing the condition. My doctor seemed baffled. Since then, I've had another two sleep studies done; I've also switched doctors. The latest sleep study seems to have shed some light on the cause of my problem. It turns out that the OSA diagnosis was incorrect; I actually have something much rarer called Central Sleep Apnea (CSA). With CSA, the brain does not properly signal the body to breathe during sleep; as a result, the patient does not make any EFFORT to breathe (in contrast to OSA, where there is some sort of blockage that blocks the airway). The sleep study indicated that I had abnormally low levels of carbon dioxide in my system during the night. According to my new doctor (a highly qualified sleep neurologist), this is indicative of hyperventilation either before or during sleep (or both). The brain, in turn, tells the body to breathe based on CO2 levels in the body. Basically, the cause of my apnea appears to be irregular breathing. I strongly believe that Tourette's tics have been affecting my breathing for at least the past several years - possibly my entire life. (I should also note that I have been diagnosed with OCD and exhibit symptoms of anxiety disorder, one or both of which may affect my breathing as well.) Breathing problems are well documented in people with TS; several posters with TS on this and other forums also responded to me saying that they either have been diagnosed with or suspect they have sleep apnea. This is why I am posting here. There is VERY little research on links between TS and sleep apnea. My doctor, a Johns Hopkins neurologist who has worked in the field of sleep medicine for many years, has never seen a case like mine in which Tourette's may actually be CAUSING sleep apnea; it appears as though this may be unprecedented in recorded medical history. He is interested in hearing from other people who have Tourette's and have experienced similar symptoms to mine, and he may try to put together some sort of research study based on what he learns. (He's also a professor at the Johns Hopkins School of Medicine.) If you have Tourette's and have been diagnosed with sleep apnea (either central OR obstructive - my doc believes that many people with this may have been mistakenly diagnosed with OSA) or suspect you have it (based on consistent sleep disturbance, breathing problems at night, etc.), please respond to this post. I can put up contact information for my neurologist at a later date. Thanks, David

Thanks to both of you for replying... I, too, have experienced breathing abnormalities during the day! I may stop breathing without being aware of it or take small, shallow breaths for long intervals, and then inhale deeply through my mouth. For some reason, I seem unable to breathe exclusively through my nose; when I try, it feels as though I'm suffocating. I've been to both a pulmonologist and an ear/nose/throat specialist...they've said that my lungs and upper airway passages seem normal, with little or no sign of obstruction. Thus, I suspect that Tourettes (or a comorbid disorder like OCD) is responsible for the breathing problems in the daytime. I know I sometimes get tics during the day that disrupt breathing until they are completed. I've read that breathing problems during the day (that are caused by some underlying neurological disorder, such as Tourettes) often correspond to central sleep apnea at night. The sleep specialist I'm seeing diagnosed obstructive sleep apnea based on the polysomnogram results, and he's sticking to the OSA diagnosis for now...I'm going to have another overnight sleep study done soon that will include a videotape recording, so perhaps the type and cause of apnea will become more clear. However, what I currently suspect is that I may be experiencing some kind of mixed apnea, with both central and obstructive components. These are not uncommon, and can be misdiagnosed initially. Based on my research, some of my symptoms seem to be more typical of CSA, rather than OSA, such as the daytime breathing difficulties, apneas occurring immediately following the onset of sleep, and a feeling upon awakening that I have been holding my breath and am short of air...as well as the almost complete lack of the usual OSA risk factors such as obesity, age, smoking, or snoring. Tarabeara - where did you get the 23 percent figure for sleep apnea in people with TS? I've managed to find just four studies over the last 20 years addressing possible links between Tourettes and sleep apnea, and only one of those four (a study conducted in 1987 by J. Jankovic and H. Rohaidy at the Baylor College of Medicine in Houston, Texas) attempted to estimate the prevalence of sleep apnea among the general population of those with TS. Though the results of this study have been widely quoted, it used a relatively small sample size (only 112 subjects) and has never been repeated. Aside from these four studies, it seems as though there has been no research whatsoever in the last several decades on possible connections between the two disorders. I'd appreciate any advice those on this board can give me pertaining to this issue! Thanks, David

Hi everyone, I'm a 20 year-old male college student who was diagnosed with TS at age six. I have never taken any medication due to fear of side effects and the relatively benign nature of the tics. Over the last four years, my tics have gradually become more severe, probably a result of the increased stress from high school and college. About 18 months ago, I began to have a complex tic consisting of simultaneous movements of the eyes, nose, mouth, and right hand. I also started having tics in the throat that affected my normal breathing pattern. Around the same time, I started experiencing significant sleep disruption, including excessive sleepiness during the day and periods during the night at which I would wake up gasping for air and feeling short of breath. After several months of this, I went to a sleep specialist and was diagnosed with mild obstructive sleep apnea - approximately 8 apnea incidents per hour. (Despite the "mild" label, my blood oxygen level went down to 78, which is fairly low and cause for concern.) The usual treatment for sleep apnea (the Continuous Positive Airway Pressure mask) completely failed to work in my case (in fact, it worsened the condition). I think this was because I was having tics that were interfering with the CPAP mask. I've felt throughout that my TS is either causing or contributing to the sleep problem - possibly by changing my normal breathing or by causing nasal irritation and congestion. The technicians who monitored my overnight sleep test noted that I was having constant tics in my sleep. I do not fall into most of the usual risk categories for apnea - I'm normal weight, under 65, and do not snore or smoke. My doctors seem baffled, and most of them are sleep specialists who know very little about Tourettes. My symptoms seem to be worsening over time. I found one study done 14 years ago indicating a possible link between TS, sleep apnea, and Sudden Infant Death Syndrome in babies of TS sufferers who stopped breathing during their sleep. However, no research on this topic seems to have been done since then. Can anyone help me out with advice or stories of similar experiences, etc.? Has anyone heard of tics in sleep that can cause one to stop breathing? Thanks, David