Getting Best Treatment following Sleep Apnea Diagnosis

Posted by crookshank @crookshank, Sep 3, 2018

I was diagnosed with Sleep Apnea following a sleep study in April 2018. CPAP was recommended. The second night in the sleep lab , with CPAP, was not
just uncomfortable, it felt like torture. I got no sleep that night. In the following interview with the Sleep Doctor I indicated an unwillingness to order
a CPAP machine. She suggested that although surgery was no longer recommended for Sleep Apnea, I should consult a specialist regarding my nasal congestion, and then come back to her for CPAP. My reaction was to make an appointment with my primary doctor, who indicated he had found the
use of nighttime Oxygen helpful for sleep apnea. Meanwhile, I had made an appointment with a dentist who specialized in an oral device for the disorder. At the first appointment I was measured for the device, which required an order from my primary doctor. After several attempts to contact my doctor, his
assistant simply said he would not sign for such a device. There was no reply as to why his offer of oxygen had been delayed, now for over a month. Also
I reviewed all the resources I could find and was unable to find any expert who suggested oxygen as a first line of defense for sleep apnea; there was even
the suggestion it could be harmful.
My sleeping remains very troublesome. Waking several times during the night, not well rested. Headaches. I continue to wake with my O2 level declining at intervals, my heart rate racing, feeling hot and clammy, despite the room temperature, gasping for breath.
Realizing the need for help, I see four options:1. Go back to the sleep doctor and request a trial with BIPAP ( she had at one time suggested that but
at the time it felt too much like just another version of CPAP, a reminder of my previous terrible experience). 2. Go to my primary doctor and try to sort
out the confusion, and see if he will in fact order the night time oxygen. 3. As I am soon to move from this rural area to an urban area where options for
medical care are far more available, seek out another Sleep Doctor for a consult, and start fresh from that point. 4. Seek an appointment at Mayo Clinic,
despite the distance, expense, and inconvenience that would entail.

The search for treatment has become discouraging and the toll on my life has become pervasive in my otherwise healthy life, and I appreciate any helpful comments.

Interested in more discussions like this? Go to the Sleep Health Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 3, 2018

Hello @crookshank and welcome to Mayo Connect.

I can understand your wanting to get help with your sleep problems. We have many members who have experienced sleep apnea and have used the CPAP device. Almost everyone has had a difficult adjustment to the device at first, but many have found ways to make it more comfortable and useful.

I encourage you to read the following discussions about adaptations that people have found for the CPAP discomfort, please click on this link to see these conversations: https://connect.mayoclinic.org/discussion/cpap-and-sleep/?orderby=DESC#chv4-comment-stream-header. As you read these discussions you will see that there are many adaptations to the full face mask that you could try.

I would also like to tag a few members who have used CPAP and might be able to encourage you, @johnbishop, @thankful, @dawn_giacabazi, @oldkarl, @etaniguchi and @johnhans

Will you post again with an update of your progress?

crookshank | @crookshank | Sep 3, 2018

In reply to @hopeful33250 "Hello @crookshank and welcome to Mayo Connect. I can understand your wanting to get help with..." + (show)

Yes, I will reply with any progress I make. But my first decision is in what direction to go for help. thanks

John, Volunteer Mentor | @johnbishop | Sep 3, 2018

Hello @crookshank -- I would like to add my welcome to Mayo Connect to Teresa's @hopeful33250. I was recently diagnosed with obstructive sleep apnea and have been using a CPAP machine for a little over a month now so I can relate to what you are going through. My overnight study at the Mayo Clinic was to say the least not a good night sleeping. It was uncomfortable for me also and when meeting with the Sleep Medicine doctor one of his questions was what do you think might be causing the breathing problems at night. I told him the left side of my nose seems to be always stopped up. I have tried nasal flushes that sometimes work but last only a few minutes of relief. He examined my nose and told me I had a deviated septum but didn't think surgery would be much benefit for the sleep apnea problem. I'm still a little concerned about that one but have been living with it most of my life. When we went over the overnight study results it was pretty easy to see that I had an issue. On a scale of 0 to 55 for obstructive sleep apnea, my results came in at 52 so I felt I really need to do something about it.

I'm still struggling with finding what CPAP mask works best for me. I do like the Dreamstation CPAP machine with humidifier that the doctor recommended and prescribed for me. My brother-in-law uses an oxygen generator at night for his COPD but I don't have any knowledge or expertise to know about how good it is for sleep apnea. Here's a link I found that may provide some more information for you:

CPAP versus Oxygen in Obstructive Sleep Apnea
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172401/

I highly recommend that you read the following two part series on sleep apnea:

The Importance of Treating Sleeping Apnea in MCI: Getting Started
-- https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed/the-importance-of-treating-sleeping-apnea-in-mci-getting-started/

Behavioral Strategies for Adjusting to a CPAP After a Diagnosis of Sleep Apnea
-- https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed/behavioral-strategies-for-adjusting-to-a-cpap-after-a-diagnosis-of-sleep-apnea/

You obviously are concerned and understand the benefit of a good nights sleep. You are also taking a big step of advocating for your health. Change is often hard but with so much at stake, if it takes talking to another doctor or second opinion or even just giving it a try...I would recommend taking a step of faith and give it a try.

@crookshank what is your biggest concern about trying a CPAP machine?

John

johnhans | @johnhans | Sep 3, 2018

You talked about getting a mouth device; however that is used only for cases of mild sleep apnea. You never mentioned how bad your apnea was rated as being. John Bishop gave great points for you to think about.
Oxygen can be used with a CPAP. If your apnea is bad, it can be life-threatening and needs be be taken care of. For some Bi-PAP is better, but apnea is usually better-treated with the CPAP. Have you taken the advice of seeing your doctor for your congestion? If this could be taken care of, then you might be able to use a nasal pillow with your machine and not have to have near as big an adjustment.
You never mentioned why it was so terrible an experience with your initial use of the machine. What kept you awake the whole night? Did you use a full-face mask and did that make you uncomfortable? Was it the use of pressure? Was it the noise?
The decision not to use a CPAP is yours, but as stated it is a problem that can have bad consequences if left untreated. Stoke and/or heart attacks are some of them. Please keep us informed as you try to make this decision.

oldkarl | @oldkarl | Sep 3, 2018

In reply to @crookshank "Yes, I will reply with any progress I make. But my first decision is in what..." + (show)

@crookshank Almost every moderate to large clinic system has a sleep lab. Even our local system with a few small hospitals scattered around has a few. Just as for their sleep lab.

Lisa Lucier, Moderator | @lisalucier | Nov 3, 2018

In reply to @crookshank "Yes, I will reply with any progress I make. But my first decision is in what..." + (show)

Hi, @crookshank - wondering how your sleep is going these days? What did you decide to do to address your sleep apnea?

jacko | @jacko | Nov 4, 2018

There should be LESS obstructive devices that are lighter and easier to clean .... people that need snacks or go to the bathroom after a few hours of sleep find such heavy-laden devices difficult to deal with?

bernese53 | @bernese53 | Nov 4, 2018

My CPAP mask has an easy-to-release clip that lets me detach it from the hose in order to get to the bathroom. I am also a type II diabetic who uses insulin at night. I eat a small snack before I put on the CPAP mask. Using the CPAP is cumbersome but I do sleep better.

John, Volunteer Mentor | @johnbishop | Nov 4, 2018

Hi @jacko, I have a mask similar to @bernese53 with easy to release magnetic clips to take the mask off and put it back on. I can also easily disconnect the hose from the mask with a clip if I don't want to take the mask off.

pomah | @pomah | Nov 6, 2018

I have been using a CPAP machine for 16 years and it was a struggle at first to use it. It took some time (about 1 year) before l found a mask that worked.l had a nose plug type, one that just covered my nose and 3 that were full face. My peak waking rate was 60/hr. This has dropped to 2-6/hr. I hope you persist as it will take time for you to learn to accommodate to the machine and adjust to it's limitations as it can help and be a life saver
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