CPAP and Sensory Processing Disorder

Something I have been wondering about is whether Sensory Processing Disorder might be a factor for some individuals in getting used to CPAP. I'm thinking particularly of sensory defensiveness, where unfamiliar textures, pressures, smells and sounds provoke a defensive reaction to get away from the source of the stimulus. I wonder if it could it be an under-recognized factor for people who have extra difficulty in getting comfortable with the machine, or for those who struggle with pulling the mask off at night?

My son was diagnosed with Sensory Processing Disorder when he was little (it was called Sensory Integration Dysfunction back then). Fortunately a very observant preschool teacher recognized it, and a very good MD diagnosed and prescribed treatment for it. He couldn't stand the feel of synthetic fabrics, tags in clothing, complex sounds (even music), the touch of rain, or even a light wind. His knees would actually give out on him when he had to try on new shoes. In a noisy classroom he would simply withdraw into himself.

He spent years in PT, OT and speech therapy, and I got training because therapy needed to continue every evening at home. It all helped, and now as an adult, you would never know he had gone through all that. But if a person like that needed CPAP, either as a child or as an adult, I wonder how very difficult it might be for them - especially if no one had ever thought to consider this condition as a possible part of the situation.

Just musing, I guess, and wondering. I've met a fair number of people who say they recognize themselves in my description of my son. Most of them said that they never received any help - they were simply told not to be so sensitive, and left to fend for themselves.

Interesting idea.
It makes sense, though.
Another thought, the disorder might not even have to be severe to manifest itself;
but only require the stress of a new medical treatment to trigger.

I wonder if it (sensory overload/defensive reaction to physical stimuli) could be an under-recognized factor for people who have extra difficulty in getting comfortable with the machine, or for those who struggle with pulling the mask off at night?

I think you're on to something critical here. I do think many people may have trouble with the sensory stimuli coming from a CPAP and I do think this is NOT commonly recognized by the folks treating us for sleep apnea.

I've never been diagnosed with Sensory Processing Disorder, but I am someone who is pretty sensitive to lots of sensory stuff. And I remember that after some post talking about some sensation really bugging me night after night someone here mentioned a book called The Highly Sensitive Person by Elaine N. Aron. And boy did I identify with Aron's quick "quiz" for determining whether you are a highly sensitive person. My best guess is that Aron's "highly sensitive person" is someone who is much more sensitive to stuff than the average person, but is not as far out on the continuum as folks with Sensory Processing Disorder.

Certainly my reaction to the "sensory overload" triggered by the machine every single night was a major contributor to my very long and very difficult adjustment to PAP therapy. And "sensory overload" was the fundamental factor in how miserable I was during those first three months of PAP and "sensory overload" from the PAP was the real root of my truly horrible case of CPAP-induced insomnia. And at the time it seemed as though the sleep doc and his PA really didn't seem to get it. Although in retrospect, the PA must have actually understood part of what I was talking about because she did eventually suggest switching me to bi-level. And bi-level proved to be more comfortable right from the start, but I still had three or four more months of significant problems caused by the insomnia and "sensory overload"

And I'd have to say that I really didn't fully become adjusted to the bIPAP until a full year after starting therapy. And it is very clear to me that had I not found cpaptalk, I don't think I would have ever managed to learn how to consciously ignore all the sensory overload from the BiPAP.

RocketGirl wrote:Something I have been wondering about is whether Sensory Processing Disorder might be a factor for some individuals in getting used to CPAP. I'm thinking particularly of sensory defensiveness, where unfamiliar textures, pressures, smells and sounds provoke a defensive reaction to get away from the source of the stimulus. I wonder if it could it be an under-recognized factor for people who have extra difficulty in getting comfortable with the machine, or for those who struggle with pulling the mask off at night?

Very interesting. Makes sense to me too. I never knew there was such a syndrome. There is a certain type of plastic that when it touches my arm the feeling just about sends me up the wall. I'd forgotten about it until now. I used to encounter it on the arms of some office chairs at work but haven't come across it since I retired. I always thought, "This is crazy. How can this be? Must be something whacky in my head or nerves somewhere!" Now I have an explanation for it, correct or not!

This topic may be somewhat related to the excellent info -SWS has posted on Dr. Elaine Aron's HSP (Highly Sensitive Person) research in the past. (I believe she concentrates more on those considered to have the common trait moreso than on those considered to have a disorder.) One thread in which it came up was this one:

viewtopic/t74244/viewtopic.php?f=1&t=51 ... 55#p472355

As a speech path, I'd say that could be a very logical point of view and a good possibility. Definitely something to consider. It would also proably affirm that someone with that type of severe guarding would benefit from using their machine while awake to desensitize themselves to the feel of the machine and even for prescription Xanax or valium which are both short acting anti-anxiety meds.

RocketGirl wrote:Something I have been wondering about is whether Sensory Processing Disorder might be a factor for some individuals in getting used to CPAP. I'm thinking particularly of sensory defensiveness, where unfamiliar textures, pressures, smells and sounds provoke a defensive reaction to get away from the source of the stimulus. I wonder if it could it be an under-recognized factor for people who have extra difficulty in getting comfortable with the machine, or for those who struggle with pulling the mask off at night?

My son was diagnosed with Sensory Processing Disorder when he was little (it was called Sensory Integration Dysfunction back then). Fortunately a very observant preschool teacher recognized it, and a very good MD diagnosed and prescribed treatment for it. He couldn't stand the feel of synthetic fabrics, tags in clothing, complex sounds (even music), the touch of rain, or even a light wind. His knees would actually give out on him when he had to try on new shoes. In a noisy classroom he would simply withdraw into himself.

He spent years in PT, OT and speech therapy, and I got training because therapy needed to continue every evening at home. It all helped, and now as an adult, you would never know he had gone through all that. But if a person like that needed CPAP, either as a child or as an adult, I wonder how very difficult it might be for them - especially if no one had ever thought to consider this condition as a possible part of the situation.

Just musing, I guess, and wondering. I've met a fair number of people who say they recognize themselves in my description of my son. Most of them said that they never received any help - they were simply told not to be so sensitive, and left to fend for themselves.

A press release about some relatively recent work Dr. Aron participated in that may relate:

http://commcgi.cc.stonybrook.edu/am2/pu ... Them.shtml

Stony Brook researchers Elaine and Arthur Aron had already found that those with a highly sensitive temperament are, compared to others, more bothered by noise and crowds, more affected by caffeine, and more easily startled. That is, the trait is about sensitivity. Further, they proposed that this is all part of a “sensory processing sensitivity.” In other words, the simple sensory sensitivity to noise, pain, or caffeine is a side effect of an inborn preference to pay more attention to experiences.

I realize that this is an old thread but I'm new to CPAP and was looking for anyone talking about it and sensory processing disorder. I have SPD, mostly in relation to touch, and have been seriously struggling with getting used to CPAP and even making myself try to do it consistently. I am very sensitive to how things feel, textures, tightness, etc. having the mask on and the air blowing nearly makes me want to jump out of my skin. I get claustrophobic, feel like I'm drowning, and am constantly adjusting the mask because I can't stand how it feels on my face. After 6 weeks of attempting to use it, first with a full face mask and then just a nose mask, I still have to force myself to put it on at night, and only manage to keep it on for a few hours at most. I haven't gone through any SPD treatment as I was only diagnosed recently, though I've had it as long as I can remember. I don't know if I'm going to be able to get used to the CPAP, I seriously doubt it. I guess it's lucky my apnea is mild. Has anyone with SPD managed to become a regular CPAP user? Would love any advice or encouragement you could give if you have!

I am a self-identified HSP and was diagnosed with moderate sleep apnea and started on cpap last fall. I went through weeks of pure hell with different masks, pillows, ear plugs, sleeping pills, strict sleep hygiene, and a lot of wakenings, irritations and plenty of frustrated tears. After failing cpap for 3 months i tried an oral device that i tolerated a bit better but found out 2 weeks ago my apneas were worse with it! I was sleeping worse despite meds and have had many stress and fatigue related physical issues since. I still have muffled hearing with ear fullness from the first cpap trial. So my doc wants me back on cpap and prescribed me Xyrem (ghb) to take with it. I am scared to start the process of getting used to it all over again as well as afraid to take xyrem. My doc just does not seem to get the HSP with cpap tolerance. He seems young and not open minded.
I just wanted to share my story and let you know you are not alone. If you find a trick let me know!

peachbrand@aol.com wrote: So my doc wants me back on cpap and prescribed me Xyrem (ghb) to take with it.

Have you tried anything more benign than Xyrem, like Ambien, Lunesta, even Melatonin? Xyrem is a big gun and I'm not sure if it's appropriate as a treatment for desensitization to CPAP. Check out section 5.4 in this:

http://dailymed.nlm.nih.gov/dailymed/lo ... 1f0aa4f3ca