Forum · Apnea + Touch Sensitivity = CPAP alternative?

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[-] metageek +0 points · almost 3 years ago

Hi, I've just been diagnosed with obstructive sleep breathing (is apnea the same thing?). I have yet to have a follow-up with my doctor yet, but I'm greatly concerned that I'll be railroaded into using a CPAP. I know what the science says about their success, but I have a major confounding issue. I have autism and specifically have sensory overload issues with touch being a major issue. I cannot wear jewelry because of the distraction. I'm sensitive to different cotton-poly blends. I can't even pull my hair back into a ponytail at night because I constantly feel the elastic touching my scalp.

I'm just really worried that the doctor will just insist on me trying something that I know will make it super hard for me to be comfortable. I have enough ongoing anxiety that I do not need that at night or at the thought of going to bed. Heck, I'd be more likely to avoid sleeping at all costs. That's how much of an anxiety overload it is. That might actually be more reasonable given that I have other sleep issues such as circadian rhythm problems that make it super hard for my brain to turn off.

I'm beginning to feel that seeking out help with my sleep problems was a huge mistake from the start.

-- kate

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[-] MakeSleepAPriority +0 points · almost 3 years ago

Welcome Kate. Your autism makes your story unique but the challenge to find treatment is one the sleep community is prepared for. Don't give up. Seeking help for sleep apnea is NEVER a mistake. Your autism specialists can likely work with your sleep doctor to find a solution to treat your apnea.

Is there anyone out there who has autism, an anxiety disorder or other similar issues that made treatment especially challenging?

MyApnea and the forums provide a place to share stories, find similar challenges and solutions then study them to provide answers for everyone with sleep apnea to get individualized treatment. Keep posting your story as you progress with your treatment.

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[-] Donna +0 points · almost 3 years ago

Kate,

I am a registered sleep technician, and I work with a lot of special needs children (Down syndrome, autism, sensory processing disorders, etc.) and have found that it is possible to acclimate people with these issues to PAP therapy. It takes some time and patience, but it can be done.

Generally we instruct parents/patients to start by wearing the mask while awake. Put it on loosely, and just try to relax with it on. Don't force anything. If it really bothers you, take it off. Then try again the next day. Try to wear it a little longer than you did before. Even one minute more is an achievement. Hopefully, after a while, you will get used to the feeling of the mask being on your face. Then you connect it to the machine and turn it on. When the air starts to blow at first it can be a bit like the feeling of sticking your head out the window of a moving car. It can be startling, and the first few times, you may want to take the mask off right away. But try to relax and breathe with the machine. Again, don't force it. If you only make it a few minutes the first time, that's an accomplishment! Keep at it. Put the mask on, connect the hose and turn it on. Try to wear it a little longer every time. When you feel like you can handle it, try laying down while wearing the mask with the machine on. Put it on every night, and if you feel you must, take it off, but try to wear it a few minutes longer every night. Just remember, YOU are in control of how long you wear it. Sometimes just knowing that you are in control can help you keep from getting to the point of avoiding sleep to avoid the mask.

Your sensory issues do make wearing CPAP a lot more challenging for you, but it can be done. Untreated sleep apnea is extremely dangerous. Lack of oxygen affects every cell of your body from your brain to your pinkie toe.

There are also other options for treating sleep apnea. There is a surgery called a UPPP that basically removes all the extra tissue in your airway. Sometimes it is not 100% successful and CPAP therapy is still needed. There are dental devices that advance your jaw when you sleep, but given your sensory issues, that may also be a challenge for you.

I also have circadian rhythm disorder. I find it nearly impossible to turn off my brain to sleep, so I take a sleeping pill. I also found that I sleep better during the day than I do at night, so that's how I sleep. Luckily I have a night job, so I live like a vampire. :D

I realize that you have HUGE obstacles to overcome in treating your sleep issues, but I swear to you that it will be worth it in the end. If you want to talk, or have questions or anything, please don't hesitate to email me. I wish you all the luck in the world!

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[-] ExuberantBeigePigeon1612 +0 points · almost 3 years ago

I do not have autism, but wearing my mask while awake definitely helped me ease into therapy and is something I generally recommend to "newbies" who are struggling. I know your situation is complicated, and I feel for you. The improvement I've seen in my life after using CPAP makes me want to strongly encourage folks to try to persist.

I have two parents who both do not use their CPAP. I'm very sad about it. It can't be forced on anyone but the benefits can be life-changing. Even life-saving for some. I know that untreated sleep apnea can lead to heart problems and a growing number of other risks that I often see as I read more about it. I want my parents to be around for as long as possible. At times I feel helpless and frustrated about their not using CPAP, but there is not much of anything I can do.

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[-] AffableBeigeTrout6057 +0 points · over 2 years ago

Just got a CPAP machine for my son, age 30, who has Down syndrome. We were originally investigating sleep issues because of growing behavioral issues during the day - very strange patterned behaviors. He has been a prince and very patient about trying it, but he has given up on it. Feels like the device keeps him awake more than anything else! We are ready to give up on this thing - feels like torture for someone who has great sensitivity issues and already has a problem with sleeping. Are there any big advantages that we should be looking for and might encourage him?

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[-] MakeSleepAPriority +0 points · over 2 years ago

Did you complete the surveys for your son? If not, please do. Many children and adults with Downs Syndrome have sleep apnea. Their challenges are great in many health arenas. Just remember that every cell in the body - heart, brain, kidneys, skin, eyes - needs the rest and restoration provided by sleep. Each cell has a sleep/wake cycle and does certain needed functions during sleep and others during wake. That is why this project is so important, so the individual needs of groups of patients can be discovered, explored and met. Keep up the good work with the CPAP and if you need help, keep looking, you'll find it. Encourage others in your Downs Syndrome group to join and complete the surveys so there are a lot of you to speak up and share information.

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[-] FearlessPeriwinkleMoose2666 +0 points · over 2 years ago

The cpap machines don't work fore me. Do we have a next best solution that has been verified?

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[-] MakeSleepAPriority +0 points · over 2 years ago

Welcome to MyApnea.org. There are many options including help with the CPAP so it works for you, surgical, oral appliances and others. It is very individual. One of the things this forum is intended to do is explore why some people don't tolerate the therapies they are offered. You could help a lot by telling your story in the forum. What is your apnea history? Why don't CPAP units work for you? What have you tried? Others with similar issues will comment. The solution to either go to another option or solve the reason CPAP doesn't work is very individual. Your doctor who knows all of your history is your best resource. This forum is not intended to give medical advice but you can bring information from the forum to help your doctor find your individual solution. Your journey to become treated can be compared with others that are similar, common successes identified and more individual treatment protocols created. Watch for future surveys, complete them and keep posting in the forums to make it all work. Welcome!

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[-] metageek +0 points · over 2 years ago

Been a bit since I last posted. Learned that my apnea is pretty mild (only qualifies on one of the two measurements). I do need treatment beyond just sleeping on my side.

In talking with my doctor, I made clear that the touch sensitivity is not an anxiety issue but literally a lack of becoming deadened to the sense of touch, especially on my face and head. I've experimented with wearing a head band for sleep, but I've barely managed to sleep when wearing one.

Because of this, my doctor has suggested I try out a dental appliance. I need to get a new one anyhow for some mild teeth grinding, and I have been able to adapt to wearing a mouth guard when sleeping. I know it's weird that something touching my face would bother me but a mouthpiece does not, but that's just how my sensory system is wonky. My tongue and palate just don't react as strongly to touch (which is good since it means I'm not overly bothered by different food textures).

I just need to arrange appointments to get started on getting the dental appliance. I'll need to see a specialty dentist but I also need to find a new regular dentist.

Metageek

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[-] MakeSleepAPriority +0 points · over 2 years ago

Great update, thank you! You are a great example of understanding that it is important to take the time to learn the WHYs of your barriers before you can deal with the WHAT is available to help. I'm thinking you have had to do that in other aspects of managing your health. Can you comment on the concept of having to compromise with treatment? For instance sleeping on your side may not treat your OSA as well throughout your sleep period as CPAP would but is some therapy is better than no therapy? Do you keep trying the recommended therapy? How important is coach (physician, therapist, family) in this process?

Are there others out there who can comment on these aspects of treating OSA?

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[-] ExuberantBeigePigeon1612 +0 points · over 2 years ago

My mother is apparently allergic to every mask they've tried on her. Full face masks make her feel claustrophobic and the nasal pillow masks have made her nose very raw. She's quite frustrated as she was given many masks and told they were "hypoallergenic" but she reacts to them all. Insurance won't pay for a dental device (which actually was a prospect she was excited about trying). She gets frustrated being told how important treatment is, when she's not offered any working solutions. Just yet another mask. She feels suppliers are just eager to bill her insurance.

Frankly, I'm disenchanted with my suppliers who seem quite eager to get me replacement parts (hoses, mask cushions, etc)... I dread talking with them at all, because I feel pushed. "Your insurance will pay for it!" I get angry and let them know, "No, my insurance only pays HALF!" I do hate ordering supplies because you can never get a price quote on anything. "Insurance will pay for it" seems to be the attitude. It's a sick sign of the disregard for outrageous pricing when it's just assumed that "insurance will pay" (so the price doesn't matter). That's why people like me don't get supplies as often -- I have no idea if I can even afford them or not because I can't get a price quote.

If you're diagnosed with diabetes, there's lots of support. If you get diagnosed with sleep apnea, then you become reliant on a medical supply company that is basically a bunch of salespeople ready to pounce. They said they'd be monitoring my usage/compliance, but it's not out of care for me as a patient. It's to make sure the insurance company will pay for my machine. Which, mind you, they wanted to continue to RENT to me into the period where my deductible would become due again. Almost a full year, if I recall. The people I talked to on the phone misquoted what I'd pay out of pocket for the machine. I've gone deeper into debt and was getting these yellow pages with red writing that my account was "overdue" when I was on a payment plan.

I'm very soured, as you can tell.

My sleep doctor and I were at odds. I was complaining of daytime fatigue despite using my machine every night, all night long. I had a MSLT (Multiple Sleep Latency Test). The lab was a hole-in-the-wall. It's not that I want hotel accommodations, but I told them I couldn't sleep in the room that was offered to me. Why not? "Do you see the leak in the ceiling? There's a big wet spot on the bed!" So, I was taken to the children's room to sleep on an uncomfortable twin mattress. I don't mind the twin mattress, but I have arthritis in my hips and I dunno... I guess the "feature" of this particular bed was to protect the mattress from bed-wetting. It wasn't meant necessarily for comfort. I was told I had to keep the door open to use the restroom because the light wasn't working in the restroom (nevermind I know there are cameras in the room). During the MSLT, the room being on an outside wall was problematic. I heard street traffic, people on cigarette breaks.

The technician was less than friendly. Not like the night people. I guess they didn't communicate her schedule well to her or something... she wasn't happy to be there and said she normally doesn't work that day. It seemed to frustrate her right off the bat when I didn't fall asleep on the first or second try. The whole experience just had me feeling rather rattled and conditions were less than ideal.

So, my sleep doctor sent me a letter that poo-poo'd my daytime fatigue. I COULDN'T be tired if I didn't fall asleep within 15 minutes (in a strange place, with a good amount of noise, after a rather bumpy night with a cranky daytime tech).

I solved my own problem. Why couldn't she look at my data and tell that my machine was powering itself off while I was asleep? There was an issue with the power cord. Bump the cord ever so slightly, and it turns itself off. Must have been a known issue because the replacement machine had a really robust-looking power cord.

I am not normally a complainer, believe it or not. For my asthma, I've always been treated well. For my chronic pain, once I got the right doctors, I've been handled well. For sleep apnea, you're given a machine and then you're on your own with glorified salespeople ready to pounce on you. Where's the support system? Why can't I get a price on supplies? I dread the day I have to get a new machine. Every 5 years? I don't think so.

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[-] ExuberantBeigePigeon1612 +0 points · over 2 years ago

I'm tech-savvy and I've got the guts to stand up for myself when I think I'm being wronged.

But you give the machine to an elderly person who is overwhelmed with having a machine and who might not question what's going on with the supply company (they had me on an auto-ship program and I had to return the supplies within a number of days and for some reason I wasn't supposed to ship it from Harrisburg where I was visiting my family for the holidays which would have put me past their return date limit -- I had to ship it from home).

Half the time, my head was spinning. What's it like for an elderly person?

Oh, and I called my doctor to have them switch me to another supplier (of my choice). I get this phone call from a company saying they have my supplies ready to ship to me. Something makes me hesitate... "Wait, what did you say your company name is?" Whatever the name is, I don't recognize it. I say, "I don't know who you are. Never heard of you! Are you related to (preferred supplier's name)?" The rep says, "I don't know, we might be." Alarm bells go off. Finally, the rep tells me, "We're (large hospital system)'s preferred provider." I told her that they're not my preferred provider and I have no idea how they got my information. The rep says the doctor's office sent it over.

I get ready to hang up and I tell her they're not authorized to send me anything at all, that I'm going to talk to the doctor's office.

She smugly says, "Well, we'll keep your information because I have a feeling you'll be using us."

So, (Big Hospital Organization) has its own provider... and when I ask for my information to go to MY preferred provider, it ends up going to someone I've never heard of who just so happens to be owned by the (Big Hospital Organization) that my doctor's office belongs to. Hrm... want to keep the money in the system, do we? It kills me that the rep was so arrogant.

Patient"care." (No, it's $$$$) :(

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[-] metageek +0 points · over 2 years ago

I mentioned the sleeping on my side because of what happened at my sleep study. I pretty much sleep on my side 99% of the time. Always have. At the sleep study, though, the wires and everything had me on my back for a significant part of the time. I had way more breathing stoppages (almost an order of magnitude more) when on my back.

metageek

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[-] MakeSleepAPriority +0 points · over 2 years ago

Welcome to MyApnea 159710. Thank you for telling your story. Please make sure you have completed all of the surveys. If there are similar issues reported, researchers may want to delve into the reasons why and find solutions. For instance follow-up treatment is paid for with some disease states but not others. Are outcomes better in ones where there is paid follow-up? That what patient centered outcomes networks are for. Regarding your mother, search on CPAP liners, you may find an option to help her. Encourage her to sign up and complete the surveys too. That will help to find out just how prevalent allergies to the masks are. That could spur research into other more suitable materials for masks.

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[-] redheadedlass +0 points · over 2 years ago

I used a CPAP with no problems for 8 years. However, the next 2 of 10 years the CPAP contributed heavily to non-stop to intermittent bouts of coughing for at least 1 1/2 hours. My sleep apnea people never told me that a CPAP can have side effects - one of them being respiratory problems.-despite my increasing chronic bronchitis and the coughing. I assumed they would have - but found out and quickly - online - with a simple search on my own - when I realized I had to be my own doctor first. The daily, morning radical coughing stopped right away - once I quit using the CPAP. Needless to say, I was angry it cost me 2 years --- I was told when I reported my anger and disappointment - that my claim wasn't "proven" by medical research! I switched doctors to one open to what works best for each paitent, not insistent on the most effective method, the C-PAP machine.

Unfortunately, the dental device hasn't been very effective. However, I am soon going to a dentist locally whose practice is over 60% in sleep-apnea oral devices - and who provides machinery to use at home. The machinery won't be as true as an overnight study but at least indicate improvement or not.

I would love to hear from other users of "TAP" (devices) aka a dental sleep apnea device aka an oral sleep apnea device. Anyone out there?

P.S. My new sleep apnea doctor did suggest a trial with a 2-stage device but he and his nurse agreed that I would likely resume the coughing. NOTE: I was so ill with chronic bronchitis for 4 years that I had to retire early. I sought out docs who treat with nutrition (not in my state) - and haven't had that for 2 years now. However, I still have chemical asthma and the only symptom I have is a cough, rather infrequent now - and no coughing bouts..

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[-] MakeSleepAPriority +0 points · over 2 years ago

Thanks for that post. Sounds like the ideal would be a pulmonologist well trained and actively practicing in sleep medicine who is willing to team up with others in sleep like dentists and allergists. Healthcare is moving toward a more team based, patient centered approach. Do you think that would be helpful to you and others like you?

Have you completed your surveys so your struggles are documented in the network pool? That's important so researchers see if this is a problem for many in the network and decide to investigate. That's how new treatment protocols can get developed.

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[-] redheadedlass +0 points · over 2 years ago

My new and current sleep doctor is also a pulmonologist!!! I also have a pulmonologist and they are in the same practice.

In MI integrated, team-based medicine is just starting with some family doctors (like my regular doc) and a few hospital--based groups but on a very limited basis. Specialists are far from the model. And I haven't found any teamed up in the configuration you mentioned.

I recommend T.R Reid's book about healthcare systems worldwide. American medicine offers some of the best for surgery but is a far cry from how most countries provide and deliver preventative and general care medicine.

Thanks for your reply.

No time to participate right now. The surveys and participation require quite a bit of time and dedication.

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