Tourette's and central apnea?

[Apneanderthal]

Hi all,

New guy here [waves hi]. I had a diagnostic sleep study done last week and a titration study completed last night. I have mostly central apneas with just a few obstructive apneas thrown in for flavor. I have a AHI of 25, and when the tech last night tried me on ASV, I had good luck. She said it stopped the apneas completely. I hadn't responded at all to CPAP or BiPAP. So it looks like I'll be back in the office next week to get my hands on a ASV machine.

Anyway, that's not really the question I have. I saw some very thin mentions of a link between Tourette Syndrome and central apnea. So I thought I'd throw this out to you all. Anyone with central apnea have Tourette's? I was diagnosed with TS when I was just a little guy, before anyone had ever heard of it. And I've always had sleep issues, but never any thought that it might be more than just restlessness. Until now.

Cheers!
Tim

[STL Mark]

I have nothing to contribute to the topic of your thread. I saw it was your first post and wanted to welcome you to the forum. You have found a good resource. I have found the support here vary valuable.

[JohnBFisher]

Greetings & Welcome to the forum. There are several of us that use ASV units. As you start to adjust, we should be able to help.

I did some research on sleep issues and Tourette's. There's no clear connection. However, that being said, something that can create such tics (vocal or physical) MUST have the possibility of interrupting the normal breathing process. So, I suspect if you talk with your neurologist about it, he might say "Well, it MIGHT be connected, but we can't know for certain". It's a logical, but not testable leap from one to the other. It's not a consistent and predictable symptom of Tourette's. It's just a likely result of something that's effectively an electrical storm.

Anyway, while I can not help with that, I certainly can help you as you adjust to ASV therapy. And here's hoping better sleep will reduce some of those symptoms.

[Apneanderthal]

Thanks for the welcomes guys. This looks like a great resource, and I'm sure I'll be here lots, especially in the beginning as I adapt to the ASV machine. I was pretty comfortable using the machine during my titration study, but I'm sure that it will take quite a bit of getting used to. I'm sure I'll be especially interested in retrieving and interpreting my data, and making the necessary adjustments. I like to tinker, so perhaps I can hack the thing and turn it into an air conditioning unit or perhaps a Mars rover. Maybe I can get it to home brew beer for me.

I should be clear that I'm not really looking for a solution, but just indulging my curiosity. My post was really more of a poor man's experiment rather than a request for help. If there is a connection to Tourette's, then the solution would be medication, and I am decidedly not interested in that. I've been down that road. I'm just curious if there are others here in the same boat.

Thanks again!

[Julie]

Correct me if I'm wrong, but I doubt if Tourette's symptoms manifest when you're asleep....?

[Goofproof]

RULE # 1. Everything causes Sleep apnea.

RULE # 2. Sleep Apnea cause everything.

The good thing Sleep Apnea can be treated, most other things can't. But sometimes they can be made better by proper sleep and O2 levels. Jim

[JohnBFisher]

Correct me if I'm wrong, but I doubt if Tourette's symptoms manifest when you're asleep....?

Julie, from my reading, it appears the tics tend to occur even during sleep. That tends to be more of the sleep issues that the scientific papers addressed than central apnea.

[SleepingUgly]

Could any medications you are on predispose you to central sleep apnea?

[Jeannh]

Correct me if I'm wrong, but I doubt if Tourette's symptoms manifest when you're asleep....?

Tics absolutely can happen in your sleep. I'd give a call to Stanford, who has both a Movement Disorders and a Behavioral Sleep Medicine program. Interesting if there is a connection.

[spotteddog]

Welcome to the forum there is a wealth of information and very knowledgeable people here. I can't help with Tourette's and I only have 1 or 2 centrals a week so not much help there either but welcome just the same.

[Mekasee]

Hello OP. I am a 26 yo female with tourette syndrome who is experiencing what I think is the same thing you are. At first I just thought it was breathing tics happening at night but im at the point now where Ive barely slept the past two nights and everytime I'm almost asleep I just stop breathing then I wake up gasping trying to catch my breath again. I have anxiety too with my ts so once I'm awake I start hyper fixating on my breathing and then it just makes me Tic more. A lovely endless cycle. Wondering how you made out with your machine and if you've found any other info on the potential connection between central apnea and TS or if you have any tips that could help me in the mean time until I can get into a sleep clinic.

[Apneanderthal]

Hello OP. I am a 26 yo female with tourette syndrome who is experiencing what I think is the same thing you are. At first I just thought it was breathing tics happening at night but im at the point now where Ive barely slept the past two nights and everytime I'm almost asleep I just stop breathing then I wake up gasping trying to catch my breath again. I have anxiety too with my ts so once I'm awake I start hyper fixating on my breathing and then it just makes me Tic more. A lovely endless cycle. Wondering how you made out with your machine and if you've found any other info on the potential connection between central apnea and TS or if you have any tips that could help me in the mean time until I can get into a sleep clinic.

Hi there! Wow didn't expect to see a response 9 years later. Your case sounds to me like a classic case of central sleep apnea. One way central apnea was explained to me is that you have two breathing mechanisms in your brain. The one that regulates breathing while awake, and another for while asleep. Central apnea often happens when the waking system "hands off control" to the sleep system and there is a hiccup or miscommunication. I find central apneas to be worst during this period of transition.

So yeah, sounds like you have central apnea. If they find this on your sleep study the solution is to use a ASV machine rather than a standard CPAP. It tracks your breathing and steps in when it detects apneas and controls your breathing during this period until your breathing resumes normally. It is much harder to adjust to than a standard CPAP due to high pressures involved but if you stick with it you will be rewarded. 9 years later I'm still using my machine every night. I've actually found a link between altitude and central apnea and so moved away from Colorado to sea level and things improved dramatically. Any time I go back to Colorado to visit family I have a really hard time sleeping and my cognitive state degrades rapidly.

I never did find any real links between TS and apnea.

Good luck with your treatment and I hope you can nail it down and get to a better state. Waking up gasping for air is the worst! Especially when your TS exacerbates the problem. I feel your pain for sure.