UPDATE: Tourette's Syndrome and Sleep Apnea

[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

[Cum Passus]

David,

 

I will have my husband post tonight when he gets home from work. He just finished using a 24 hour heart monitor. He and his Dr. talked about him having sleep apnea. He can tell you more of what they talked about.

 

Is your Dr. in Baltimore? or is John Hopkins School of Medicine in another state?

 

We live about 70 miles from Baltimore. Just wondering, because My husband could make that drive for a study.

 

Thanks for the info,

C.P.

[Cum Passus]

Hi David,

 

 

My doctor had me wear a heart monitor for twenty four hour last month. During that period I had to note when I felt different heart rates. During that night my wife said I stopped breathing, so I noted it. She said some nights I stop breathing for 5 to 10 seconds and even longer.

 

When I spoke with my doctor this month to review the monitor results, he noted that I had over 3k skips in that 24hr period. He believes that I have sleep apnea do to the 3k skips.

 

I do have tourettes and have had them for over 30 years.

 

The information you spoke about is insteresting to me. I have an appointment next week for sleep apnea testing.

 

Thanks,

 

SP

[kim]

CP.... I just had to post this, after David's remark;

 

The brain, in turn, tells the body to breathe based on CO2 levels in the body

 

 

and your recent post about mosquitos not bothering your son this year, as opposed to last.

 

http://www.charlottecountyfl.com/Environme...s/buggs/FAQ.htm

 

Yes. The attraction to humans is very complex. Basically, mosquitoes are attracted to the carbon dioxide coming from the breath and pores of humans. In addition, some mosquito species are attracted to certain fragrances and colors.

[Alan]

David,

I know that this is an old post that I am replying to, but I am hoping you will still look here. I have Tourette's syndrome with frequent breathing tics. I also have what appears to be Central Sleep Apnea. There appears to be a link between the apnea and allergies because the apnea is worse in the spring. When I first became aware of the apnea my doctor prescribed allergy medicine (Allegra) and the apnea disappeared for a time. Over time the allergy medicine became ineffective. I had a sleep study done shortly after beginning the allergy medicine but it came back normal. I no longer take the allergy medicine because it was no longer effective and the last time I took it it caused my heart to race.

 

My wife has observed me sleeping and says that my breathing becomes shallower and shallower until I just stop breathing. I often wake up panting for breath with my heart racing. Last night I woke up that way at least six times.

 

I am very interested in anything you have learned about this. I also may be interested in contacting your doctor.

 

Thanks,

Alan