Tourettes and Sleep Apnea?

[dweinst3]

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

[Cum Passus]

David,

 

Mark us down as a yes.

 

My husband has TS and also stops breathing during the night. My son has TS, and I do remember him doing that too, but I have not checked him in a long time. My husband does it alot. It sounds to me like he is holding his breath then lets it out real slow. Thanks for asking this question I will listen to my son to see it he still does it. My husbands TS is mostly gone if that is helpful.

 

C.P.

[tarabeara]

Yeah, you probably have what is know as Central Sleep Apnea (CSA). Overweight and old age are risk factors for Obstructive Sleep Apnea (OSA).

 

I discussed CSA in relation to TS and SIDS in the book I'm writing. CSA occurs when the brain fails to send the signal to breathe. Gasping and choking sounds are symptoms, unlike snoring in OSA. I'm not sure whether he still has it, but my 3.5 yo son definitely did have CSA. We used to frequently hear him give a long gasping. It was a bit scary...that was before I knew what it was. Apnea is found in 23 percent of people with TS, compared to 2 to 4 percent of the general population under 65.

 

I either breathe shallowly or cease breathing w/o realizing it during my waking hours. This results in my taking really deep breaths, usually when I'm eating or drinking, which is very annoying and potentially dangerous. I have to make sure I take a deep breath before I have food or drink where they can be inhaled.

[dweinst3]

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

[tarabeara]

 

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

 

The figure did come from the Jackovitch study. David E. Comings quoted the study in his book Search for the Tourette Syndrome and Human Behavior Genes.

 

Then, just seeing that my dad has it, I have the issue during the day, my son has it, and my other son is dead and probably had it....and we all have TS, including my husband, who has sleeping issues, but I'm not sure whether he has apnea--don't know whether I have it at night, either.

 

So, it definitely makes sense. It'd be nice if another study was done, wouldn't it?