Autism and new to CPAP

[LaASD]

I just got my CPAP 2 weeks ago and despite compliance I am feeling worse while using it. Per my sleep study I had 62 events/ hour mostly of hypopneas with minimal apneas. Per my machine/ app I'm now down to below 1/ hr when using the CPAP with a good seal and minimal leak (per the resp. therapist). My pressure range starts at 6 and my machine shows pressure of 10.8 for last night with 6.8 hrs of use.

There area handful of things that may be contributing to this in addition to the normal adjustment period and was hoping I could hear from others that have faced similar things or suggestions on things I may do to help the situation. I have already reached out to the DME/ respiratory therapists that helped me get fitted and they have reported that there's nothing else they can do on their end as numbers wise looks good. (I don't have an SD card for my machine yet so unfortunately I don't have a ton of numerical data to provide). The nurse at the doctor's office also had no suggestions.

1) I am on the autism spectrum and deal with sensory difficulties on a normal basis. The idea of having the CPAP on my face is enough to make me cringe, but I went through with the fitting anyway. I was able to best tolerate the N20 mask as I couldn't stand the pillows in my nose or that the alternative covered my entire top lip. That said, for a few hours after wearing the mask for about 15 min in the appointment I could feel every place the straps had hit my face and it resulted in sensory overload that impaired the rest of my day. That night was met with the same issue and resulted in needing 2 hours without it on in order to fall asleep. The second night I was able to tolerate it better after creating a cover for the headgear out of fabric I had at home. That helped with the itching and longer lasting effects. I am now to the point where I am able to fall asleep with it on if I am completely exhausted or take anxiety/ sleep meds as prescribed by my psychiatrist to help me adjust to the CPAP. I'm finding though that despite the fact that I'm asleep with it all night, I awake every day with less of a tolerance for other sensory things. I am routinely on edge and can feel everything worse than usual. Wearing the mask during the day is NOT an option due to the sensory issues and the fact that I don't have the ability to restrict other sensory input enough during the day to tolerate it at all.

2) I have had insomnia for most of my life. I frequently will rotate between not being able to fall asleep or not being able to stay asleep. Since starting the CPAP I have not been able to stay asleep at all and most of the times I am only falling asleep due to medication. Most nights I wake up 2-5 times throughout the night and if I awaken after 4:30am cannot fall back asleep. That said, if I just get up early then I am falling asleep on my feet an hour later.

3) I also have long covid and allergies that impact my breathing and cause coughing. Since covid, my O2 levels have always been on the low end of normal so I'm unsure how accurate the sleep study I took was regarding my hypopneas anyway because my O2 was inconsistent well before I fell asleep (it took me 2.5 hrs to fall asleep in the lab) and they used 99% as my baseline when in reality it's probably closer to 95-96%. My coughing due to allergies has increased and my throat is routinely irritated since trying to use the CPAP. While I've considered trying to manually change and increase the humidity I already find that the heated hose is making me uncomfortably hot when I'm sleeping causing me to toss and turn much more often (once even flipping over the machine). My headaches which increased with the long covid are also worse on the days that I used the CPAP.

I appreciate any suggestions or insights. Thank you

[ChicagoGranny]

You have a lot of issues to address.

It might not help, but it would be a good idea to get an SD card, create a free account at SleepHq.com, upload your data, and then post the link to your SleepHQ reports in this thread. Members could then look at your reports and rule out any CPAP-related issues.

Welcome to the forum!

[Julie]

Good for you for trying hard to overcome or at least accommodate the autism... would not want to have to manage that, let alone so well.

If it matters, or helps, many do start out not feeling good with the mask, etc, but it supposedly does improve over time... Good luck!

[Janknitz]

The sensory stuff is hard.

We have a member who runs www.padacheek.com, and she sells very soft, kind of satin-like covers for masks. So instead of bare silicone, plastic and velcro straps, you have something like the edge of a soft baby blanket against your face. That might help your sensory issues.

Another strategy is to take a dry washcloth and rub the areas of your face where the mask touches, not hard but vigorously and somewhat firmly for a few minutes before putting on the mask. This helps "attenuate" the sensory input and may improve your tolerance.

Finally, although we recommend the mask not be too tight (that causes leaking!)., it should likewise not be too loose. Light touch stimulates the parasympathetic nervous system that causes a "flight or fight" response. A firm, steady pressure (not too hard) reduces and calms the nervous system (think of a swaddled infant as an analogy). You can also lightly put your hand on the mask (not over the vent though) because that will help your nervous system recognize the pressure more easily and not trigger that flight or fight response--think how hard it is to tickle yourself. That also has a calming effect.

I had similar difficulties, and I made it my goal to just be able to put the mask on and go to sleep, without being constantly aware of the mask and the air flow. It took a few months, but I kept working at it, and eventually got there. I also had terrible insomnia, but my other goal was to gradually increase my sleep time, because with apnea treated I wasn't bathing my body in stress hormones all night. Keep your eye on that. As your treatment for apnea increase, your anxiety and insomnia should see improvement. But only if you use it.

[chunkyfrog]

I wonder if a touch of aromatherapy might help.
During the first year or two, I put a Yankee Candle plastic car jar behind my cpap.
Pick your favorite scent, and move it away if needed.
Cpap.com has Pur-Sleep products, but I prefer to shop with my nose (and spend less).

[Riverside]

I'm autistic. Diagnosed in 2017 with severe obstructive sleep apnea most likely dating back to late teens in the seventies. SA is no joke. While it may not kill you quickly it can and does cause permanent damage if left untreated. I had all the same issues you are experiencing now. For several weeks I struggled, thinking I'd never get use to the masks. I went through at least five different ones before finding thd and that worked for me.

I'd throw them across the room and swear never to wear them again. Thought I'd never sleep normally.

I was wrong. The best advice is four words:

DO NOT GIVE UP!

I was diagnosed 8/2017 and was regularly wearing my CPAP by the following spring. Forget about all the tips and tricks. By that dont mean dont try any. I mean they don't work without the keys to success.

The keys are:

1) find the right mask for you. It doesnt have to feel perfect, just not so annoying stay up all night for days.

2) don't quit. Just keep trying until you start to get used to it even a little.

Stick with it and before you realize it (I just did) you'll be able you look back and seven years have gone by and you can't even take a nap without it.

Sometimes I can't fall asleep now and end up realizing it's because I forgot to put it on. Then, I put it on and I'm out like a light in minutes.

JUST

DON'T

GIVE

UP!

Persistence pays off in the end.

[LaASD]

Thank you all for the suggestions and encouragement.

I'm autistic. Diagnosed in 2017 with severe obstructive sleep apnea most likely dating back to late teens in the seventies. SA is no joke. While it may not kill you quickly it can and does cause permanent damage if left untreated. I had all the same issues you are experiencing now. For several weeks I struggled, thinking I'd never get use to the masks. I went through at least five different ones before finding thd and that worked for me.

This is very reassuring to hear from someone who had to deal with the same struggles. I think I have the right mask as I am able to eventually fall asleep with it anyway. At this point, I'm not even taking it off in the middle of the night. As annoying as it is, I'm not sure how much longer it is than my normal insomnia struggle to fall asleep anyway.

Do you have any tips on how to survive the transition point in the meantime? I'm at the point where I have fallen asleep during working hours due to the exhaustion I feel after using it. Obviously that can't continue so I need to find something I can change. I'm also so sensory overloaded that it's increasing my depression (already treatment resistant) and irritability. TLDR - Compliance currently equals no quality of life

Thanks again!

[Julie]

One thing - how comfortable do you feel talking about all this with your family MD? Do you get satisfactory answers? Have you thought about talking to another MD who might have more immediate and/or specific answers?

[Riverside]

Do you have any tips on how to survive the transition point in the meantime? I'm at the point where I have fallen asleep during working hours due to the exhaustion I feel after using it. Obviously that can't continue so I need to find something I can change. I'm also so sensory overloaded that it's increasing my depression (already treatment resistant) and irritability. TLDR - Compliance currently equals no quality of life

My autism replies, "It's not a point, it's a period of time"

See the four words.

It a transitional period of time. While tips or tricks my help a little, you've got to be determined to win in the end. On that note from what your saying, you're already way ahead of where I was this early in the game.

On the other hand, if your managing to keep it on and sleep all night with it AND your numbers are good when you wake, but you're falling asleep at work, that sounds to me like something else is going on and you should take it up with your sleep therapist.

Are you fiddling so much with the mask that you're not getting to full REM anc staying there long enough? Your mask my not be a good fit. It would be number of other things too. A sleep therapist or coach can help you get to the bottom of why your so tired even though your numbers are good. [Many of] those guys have heard almost everything because of how many stories they've heard.

I'm lucky enough to have a sleep study center very near me, and insurance that covers machine rental and supplies with reps that come directly to my town if I want to schedule mask fittings or try a different mask. It too me about eight months to find the right one. The one I'm using now for over six years was recommended by the rental company's coach, who is also a client/user.

The point is, make sure, especially in this early stage that you're in regular contact with the sleep center that prescribed the treatment AND any resources at the company you got your CPAP from.

On a side note:

I no longer use a CPAP due to keeping in constant contact. I have IBS and was waking up extremely sick to my stomach. Tur ed out it was from gas caused by CPAP constant pressure forcing air into my gut (I also have GERD) so my gut was filling up with gas all night. I'm now using a BiPAP, which alternates the pressure, lowering it significantly during exhaling, then bumping it up when it detects your not inhaling to encourage breathing rather than forcing it.

Only your sleep therapist (doctor) can determine whether you need a BiPAP, which also requires another overnight study. If they determine your sleeping better with a BiPAP, they'll switch you over to that. It is possible you only THINK you're sleeping all night, but it may be terrible sleep. Very likely since you're falling asleep at work.

The more you know...

[LaASD]

One thing - how comfortable do you feel talking about all this with your family MD? Do you get satisfactory answers? Have you thought about talking to another MD who might have more immediate and/or specific answers?

I have not talked to my family MD about this yet, my family MD has minimal knowledge of Autism unfortunately and in general has taken the "you're a mystery" approach to my care. I should probably look for a new PCP, but have not had the energy to do so. I have talked to both the MD and NP at my psychiatrists office. The NP suggested possibly adding a stimulant to eliminate the drowsiness in the morning, but neither the MD nor I were comfortable with that option as it would result in me using meds for both falling asleep and waking up. The MD opted to change my trazodone to Ambien so we will what that does when I pick it up today. I have also talked to my therapist who's current theory is that my Autistic brain doesn't like sleep (sounds weird, but my last psych said the same thing as a possibility). I've continued to reach out to the sleep MD's office, but they are short staffed and haven't gotten any clear direction or even the option to talk to someone beyond the reception desk.

Unfortunately, finding providers well versed in Autism in adult women is very difficult. I'm continuing to work with my therapist to find someone, but as of now the closest we have found is 2+ hrs from where I live. I'm also late diagnosed (finally diagnosed at 27) so learning from those that have had more time with the knowledge is super helpful to me.

[Janknitz]

I wonder if a touch of aromatherapy might help.
During the first year or two, I put a Yankee Candle plastic car jar behind my cpap.
Pick your favorite scent, and move it away if needed.
Cpap.com has Pur-Sleep products, but I prefer to shop with my nose (and spend less).

For people with true sensory processing disorders, scents, especially artificial scents, are hard to tolerate, they are not helpful. They are also asthma triggers.

[LaASD]

Are you fiddling so much with the mask that you're not getting to full REM anc staying there long enough? Your mask my not be a good fit. It would be number of other things too. A sleep therapist or coach can help you get to the bottom of why your so tired even though your numbers are good. [Many of] those guys have heard almost everything because of how many stories they've heard.

You are 100% that it is a duration of time for the transition and not a "point".

The question of if I'm fiddling with the mask while I'm asleep is a possibility so I'll have to figure out a way to try and identify if this is the case. Unfortunately from the place I got my CPAP from has told me that they are unable to advise any further because my numbers all look good and any other changes would need to come from the MD or through and NP. I'll keep trying to get ahold of someone at the sleep MD's office. I think you are likely correct that there's something else going on. Hoping I don't get stuck in the circle of sleep blaming depression and psych blaming sleep.

[Julie]

Stop trying to get 'doctors' answers from the office staff. Make a new appt to see the MD and bring your Q's written down to ask him/her what you want to know. If he/she doesn't have satisfactory answers get a new MD.

[LaASD]

Stop trying to get 'doctors' answers from the office staff. Make a new appt to see the MD and bring your Q's written down to ask him/her what you want to know. If he/she doesn't have satisfactory answers get a new MD.

Unfortunately, my doctor is the only provider in the office currently. I was talking to the office staff trying to make an appointment with my sleep MD and they were giving me the run around. It took 3 phone calls before they would eventually schedule me and my appointment isn't until July 11th. It was the respiratory therapist's idea to try talking to the nurse at the MD's office, but the front office staff wouldn't transfer me or have her call me back so that wasn't a feasible solution unfortunately. I've got my list of questions for when I go in next month because unfortunately I'm still miserable every time I try to use my CPAP.

[Miss Emerita]

You've probably done a lot of googling about autism and sleep. I thought this was a good general overview:

https://www.medicalnewstoday.com/articl ... ia#Summary