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Third Try

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Neil -1 point · over 3 years ago Original Poster

I am about to make an appointment with a third doctor to try to resolve my sleeping issues. I have sleep apnea and insomnia. I am also developing arthritis problems related to sleeping on my side. Sleeping on my back is better for my back and neck, but breathing has priority.

The first try was in the 80's. I saw an ENT doctor who ordered a sleep study. He said that I would not benefit from a CPAP machine, but he trimmed my palate with a laser. I don't know if it did any good.

I saw another doctor in 2015. He is a cardiologist who treats sleep apnea. He did another sleep study. He said that I have severe OSA and needed a CPAP machine. This made it much harder to sleep. If I used it 2 or 3 days in a row, I would be barely be functional. I had a lot of fitting and leakage issues. I also had trouble falling asleep and staying asleep. The machine seemed to make this worse. Sometimes I would lay awake for 4 hours and then say that I've meet the goal of using it for 4 hours. The next night I would take it off after three hours. I would get frustrated and angry and not use it for six months and then try something else. I eventually found a nasal pillow mask that seems to fix the leakage issues, no thanks to my doctor. But it still seems to aggravate the insomnia problems.

Now I see that there is a group of neurologists in my area that treat insomnia and sleep apnea. I am going to try them.

Has anyone else had success by changing doctors?

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sophie +0 points · over 3 years ago

Hi Neil--Thank you for sharing your experience. You are not alone in this type of experience you describe. I also struggled with my sleep apnea diagnosis for the first two years. It wasn't until I met with my third physician, a board-certified sleep medicine physician, before I had peace of mind that my sleep apnea was being treated properly. There are many clinical disciplines in which sleep apnea is treated--ENT, dentist, pulmonologists, and neurologists. Your best bet is to seek out someone who is board certified in sleep medicine. They are in the best position to treat you successfully. I also laid awake for four hours of the night struggling with the machine. My sleep medicine physician changed my treatment from cpap to apap and finally finally the treatment worked.

Good luck in your appointment and please keep us posted on how things work out.

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wiredgeorge +0 points · over 3 years ago Sleep Enthusiast

I think it is interesting the in the field of sleep medicine there are heart docs, ENT docs, GPs and a zillion more who say they specialize in treating sleep disorders. This points to a medical profession that isn't able to characterize the skills needed to treat sleep disorders very specifically. It is likely best to find a practice like Sophie described (multiple specialties represented) but a patient new to the world of sleep apnea generally doesn't have the knowledge and their family doctor probably doesn't either to find the right practice; the patient might get lucky or may have to figure this out from trial (trying a specific doctor) and error (the specific doctor didn't work out).

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SleepDent +0 points · over 3 years ago Sleep Commentator

Actually, I don't think that making the choice is that hard. There is an established medical specialty of being board certified in sleep medicine by the AASM. At this point, even for some insurance coverage it is becoming mandatory to have a board certified specialist on board. So start with a certified sleep specialist for your initial diagnosis and testing and THEN consult with ENTs, sleep dentists, D.M.E.s, physical therapists, etc. as the need arises. Very organized, very effective. Arthur B. Luisi, Jr., D.M.D.

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sleeptech +0 points · over 3 years ago Sleep Enthusiast

Even after all of that certification and whatnot, a string of qualifications does not necessarily a good doctor make. Best of luck to you.

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wiredgeorge +0 points · over 3 years ago Sleep Enthusiast

My primary care physician readily admitted ignorance regarding sleep apnea. My wife had recorded me stop breathing and showed me and then my physician. She made an appointment sort of at random with a sleep specialty clinic. I went in and had a study done. Moderate sleep apnea. Never talked with the doctor nor saw the doctor. They were cranking out studies with a few techs in the building but the doc was never in sight. Then a titration study and just got a call telling me a prescription had been sent to my primary care doc. No sleep doc in sight and my requests to speak with this doctor who wrote the prescription never yielded either a phone call or visit scheduled. I had my insurance company call the clinic and DEMAND I receive the written results of the study and of course, I was not capable of even guessing what any of the jargon meant. I started doing google searches. I contend that the medical profession is full of gaps with regard to sleep medicine and while a sleep doc may be fully qualified, that same doctor may not be at all helpful from the standpoint of patient education... in the end the patient is behind the 8 ball right from the get go in many cases. This isn't the case for every patient but certainly given the type questions and problems seen on sites like this, it is far too common.

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SleepDent +0 points · over 3 years ago Sleep Commentator

No question about it. You were handled very poorly at the sleep center. It is a wonder that you are as positive as you are after that experience. In the area where I work, such treatment of a patient would be pretty unthinkable.(Well, not exactly. There was one clinic in my area that could have treated patients in that shoddy manner, but it has since closed down.) Painful to read it. Arthur B. Luisi, Jr., D.M.D.

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Marshastin +0 points · over 3 years ago

I started with a Pulmonologist that does sleep studies and treats sleep apnea, 3 years ago. Gave up on that and tried that clinic again, end of last year; more problems, diagnosed me wrong (i do not have asthma). So went to a sleep medicine clinic with a Dr. that has dealt wtih all sleep problems over 30 years. that clinic has done a great job for me, but now i have problem wtih (same as before) Durable Medical Equipment Clinic (the only one on my insurance) giving me correct info and helping me learn about the cpap. after 90 days of trying to get successful therapy i am ready to give up as i am not getting the help i need. Everyone is afraid to confront the med tech that apparently doesn't know his job. So the DME is important, too. i may have to go to different one 100 miles away, if there is one there. Good luck to you!

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Neil +0 points · over 3 years ago Original Poster

I had my appointment yesterday. I talked to the doctor and he prescribed 5-10 mg Ambien. I took 10 mg last night. It definitely helped. I woke up a couple of times last night, but got back to sleep with no problem. I slept from 10 to 7. The humidifier was one quarter full in the morning, the lowest I had ever seen. I have been awake for two hours. I am a little tired, but less than I was yesterday. I think I will try 5 mg tonight. I did not bring the old sleep study with me. I will have it sent before my appointment next month.

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Neil +0 points · over 3 years ago Original Poster

I slept with the CPAP 3 nights in a row, but not the fourth because I was too tired. I then used the machine for about a week and thought I was making progress, but then the insomnia came back in spite of the Ambien. I would lay awake for 2-4 hours and then take the mask off. I am going out west for a bus tour in a couple of days and I'm thinking of leaving the machine at home.

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Sierra +0 points · over 3 years ago Sleep Patron

I suffer from not being able to go to sleep as fast as I want at times. And, I also know what it is like to become agitated when fighting with the mask to get comfortable and stop the leaks. After trying 4 different masks I have found the AirFit P10 to be the best for comfort. It is not perfect, but I have made peace with it, and generally find it comfortable. Another issue that I was a bit slow to pick up on, and my initial provider did not help me much, was the start pressure. This is the pressure your mask initially starts at. Mine was set too low, and I was not getting enough air during the going to sleep period of the night. It was initially set at 4 cm. I now have it set at 8.4 cm with an EPR setting of 3. However, I only use the EPR during this initial time before going to sleep.

A while back I stumbled onto the website at the link below. It was started by a pharmacist in Canada, that is also a professor at the univeristy. I suspect it is probably a grad student project of some kind. It is a little disorganized, but I still have found it helpful. The website was inspired by the belief that too many people use sleeping pills and it may cause more harm than good. I don't find anything for sale at the site, and apparently he is not concerned about selling fewer sleeping pills at his pharmacy either. He promotes the use of Cognitive Behavioural Therapy for Insomnia or CBTi. The link takes you to a page where there is a series of points worth opening and reading. There are also 4 tools to access your sleep in the right sidebar. They are helpful in checking your beliefs about insomnia vs current research. A few of my conclusions was that I was trying to sleep too long (9-10 hours a night). 7-8 hours is the recommended total sleep in the day. I also was in the habit of taking naps during the day, and that is not helpful either, even if you had a poor sleep the night before. In any case here is the link. Hope it helps some,

MySleepWell.ca

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snuzyQ +0 points · over 3 years ago Sleep Commentator

Hi Neil,

In addition to the link suggested above, you might want to talk to your Doc about ditching the Ambien and switching off to melatonin. Even though the melatonin is available over the counter. it's best to have a doctor prescribe it so it goes into your medical record. Melatonin helps to guide your circadian rhythm, which can help you both get to sleep and stay asleep. My Doc has me taking 2, 3 mg. capsules just as the sun goes down. A few hours later, I get to feeling real sleepy. If I heed the "call", I'll start right then to get ready for bed, mask up and I'm off to dream-land for a solid 8 hours. If I put off getting to bed, I lose my window of opportunity and it's back to struggling to get to sleep. It's all in the timing.

It takes time and persistence to adapt to CPAP. This is a whole new way of sleeping and, for most of us, our brains holler out a huge complaint about it. The neat thing is, our brains are able to adjust to any repeated stimuli, even if it is initially unpleasant. But we have to keep on repeating the experience (stimuli) until our brains learn that this is the new norm. At that point, masking up for the night becomes second nature and we can't even fathom sleeping without our machines humming along beside us.

Everyone is different. Some adapt to CPAP almost right from the start, others take a few weeks, and still others may take up to 6 months. A large part of adjusting seems to depend on our consistency with our treatment. For a fortunate few, they feel so much better after the first night that they're sold and never want to part with it. They never look back. That wasn't me. It took me 3 weeks to figure out that my machine was not going to breathe for me. Until then, it was an all out fight. I came awful close to ripping off my mask and tossing it across the room. I had to "talk" my brain down and convince it that CPAP was my very best friend and then, just breathe.

So, if you ditch the CPAP for your trip, you'll be starting all over again when you get back. If your case of sleep apnea is moderate to severe, there are risks involved with sleeping without your machine - even just for the duration of your trip. You probably won't die (although you could), but the affects of your apnea on your health are serious and complex. Fear is a great motivator. Let it work for you.

CPAP is the most effective and least invasive of all the treatments for obstructive sleep apnea. It's a gift to get diagnosed with OSA and have CPAP available to treat it. It's worth every ounce of energy we put into making this effective treatment part of our lives. We have too much to gain if we use it and too much to lose if we don't.

Take care friend. I'm rooting for you!

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