New Member - Hello! [how long before considering adjustments?]

[Sleeprider]

It sounds like a good argument against using PAP treatment, and self-treatment. In the context of a titration study, all they normally do is to start you at a low pressure like 5.0, then make adjustments upwards to eliminate obstruction. In your case, they will simply conclude you are well-titrated at a pressure of 5.0, and call it a night. I don't know that they have protocols for rapid respiration rate and flow limitation, and that is the question you should ask before you event go. If they don't have the protocols or tools to identify and correct those issues, will the titration test give you any useful information?

[skiajl6297]

I will share all of this and see what they say - I have been fighting for a month for authorization just to take this next step. If this sounds like PAP treatment is contraindicated, what else is there? I'm so tired of being tired.

[Sleeprider]

Looking back through the history here, you began with the Philips Dreamstation Auto with poor results.  The Philips seemed to get  your respiration rate correctly at about 15, however you were at 7 to 12 AHI, mostly CA and H events.  After moving to the Airsense 10 Auto, you tried a number of permutations of pressure and EPR and never really hit good results. The Resmed mis-counted your respiration rate based on close evaluation of the flow rate, and there appears to be a great deal of sleep disruption and movement, which may account for much of the higher AHI.  

I think an observed sleep study with PAP pressure can be helpful to understand what is going on.  It may not yield a good titration, but it will be helpful for you to determine if the problem is positional, movement, mask fit or just general restlessness and poor sleep.  You clearly have very disrupted sleep, and the goal needs to be to come up with a plan to minimize that.  That plan may or may not include PAP therapy, drugs to help with sleep and anxiety control, behavioral modifications to improve sleep or other approaches.  You want a sleep test protocol that attempts to find optimum pressure and mask fit, but also observes what conditions contribute to arousals and movement.  You seem open to any plan of action that will provide relief for your fatigue and poor sleep, and that might be the best approach to take in discussing this with your therapist. A sleep test is normally a test with a simple protocol and objective. You clearly want more, than just pressure and AHI control, you want to understand the nature of your sleep disorder, and it may be complex, involving both PAP therapy and perhaps dealing with insomnia or physical movement.

Local to me, our Allegheny Health Network has a sleep disorder clinic that looks beyond just PAP therapy. Here are some thoughts from their website that might help you formulate a testing plan:

Sleep Disorders and How They Affect You

There are various types of sleep disorders. They include:

Sleep Apnea - It is the most common and serious sleep disorder that causes you to stop breathing during sleep. The airway repeatedly becomes blocked, limiting the amount of air that reaches your lungs. When this happens, you may snore loudly or make choking noises as you try to breathe. Your brain and body becomes oxygen-deprived, and you may wake up. This may happen a few times a night, or in more severe cases, several hundred times a night. The lack of oxygen your body receives can have negative long‐term consequences for your health, including high blood pressure, heart disease, stroke, diabetes, and depression.

Restless Leg Syndrome - This is a neurological sleep disorder where you have an overwhelming urge to move your legs. Restless leg syndrome makes it difficult to get comfortable enough to fall asleep. The symptoms are usually worse at night. You may lie down and begin to feel burning, throbbing, or itching inside your legs. If you move your legs or get up and walk around, these symptoms may go away. The discomfort may return when you try to return to sleep.

Insomnia - The most common sleep complaint, in which people have difficulty falling asleep or staying asleep, or waking up too early and being unable to go back to sleep. Short term insomnia lasts up to two months and affects between 15 and 20 percent of people. Chronic insomnia occurs at least three times per week, and lasts for at least three months. It affects 10 percent of the population.

Sleep studies at one of our facilities or at home

A variety of abnormal sleep patterns and their causes are identified by a sleep study which will be used to direct proper therapy.

Our compassionate staff members place an emphasis on comfort and convenience for each patient. Our state-of-the-art sleep centers are equipped with the latest technology to facilitate fast and accurate diagnosis and treatment of each patient’s sleep disorder. We also offer portable home sleep testing for eligible patients.

Respiration, oxygen levels, heart rhythm, limb movements, and brain wave activity are monitored during your sleep. Two studies may be required for complete evaluation.

Home Sleep Testing (HST) – It is used to diagnose obstructive sleep apnea in patients that are at high risk for sleep apnea and do not have other medical conditions such as heart disease, pulmonary disease, or neuromuscular disease. It allows you to sleep at home wearing equipment that collects information about how you breathe during sleep. You will be instructed on the equipment use, and will set up the equipment yourself at home. The HST will monitor your breathing patterns, oxygen level, and heart rate during sleep. A board-certified sleep physician will review the information collected during the sleep study, and a report will be provided to your physician who will discuss the results with you. If the HST results determine that you have sleep apnea, you will be scheduled for an in-lab PAP titration study.

In-lab Diagnostic Sleep Study – You will be required to stay overnight at one of our sleep centers. It provides a complete evaluation of your sleep patterns, including brain wave recording, heart rhythm, eye movements, leg movements, respiratory effort, snoring, and oxygen levels. If the results determine that you have sleep apnea, you will be scheduled for an in-lab PAP Titration study. If the results determine that you have another type of sleep disorder, the board-certified sleep physician will work with you to develop a specific treatment plan.

In–lab PAP titration study – This is used to determine the level of positive airway pressure needed to minimize episodes of sleep apnea. This study is identical to the in-lab diagnostic study in terms of preparation and set up, with the addition of positive airway pressure. The technologist will work with you to choose a mask, provide instruction, and work with you to make you comfortable. During the night, the technologist will adjust the level of airflow to the specific amount needed for you. Continuous positive airway pressure (CPAP) therapy is the frontline treatment for obstructive sleep apnea.

What to Expect from a Sleep Study

On the day of your sleep study, you should follow your regular routine, avoid napping, and eliminate caffeine after lunch.

Prior to arriving for your sleep study, you should shower and avoid using lotions, hairspray, gel, and remove nail polish. Bring comfortable pajamas, your favorite pillow, toiletries, and reading material.

When you arrive, the sleep technologist will get you comfortable in your room, and a sleep questionnaire will be completed. The sleep technologist will then prepare for the study by placing sensors on your body to measure brain waves, snoring, breathing, heart rate and rhythm, leg movement, and oxygen levels. Once you are set up, you are free to read or watch TV. When it is time for you to try to go to sleep, the test will begin. In the morning, the technologist will remove the sensors and complete a morning sleep questionnaire.

Results – A board-certified physician will review the information collected during the sleep study and a report will be provided to your physician who will discuss the results with you

Treatment Options for Sleep Disorders

Most sleep disorders can be successfully treated after an accurate diagnosis is made. Depending on a patient’s condition and particular needs, treatment options may include:

Continuous Positive Airway Pressure Therapy (CPAP) – A nasal or oral mask that fits comfortably over the nose and mouth, CPAP infuses a constant, steady supply of air pressure through the nose to the lungs. It keeps the upper airway open which eliminates the breathing pauses caused by sleep apnea so you will no longer snore or make choking noises in your sleep. You will be able to sleep through the night without your body waking up from a lack of oxygen. This device is used to treat most individuals with sleep apnea.

Medication – Often used in conjunction with other therapies, short- and long-term medications that are always prescribed under the close supervision of a doctor are highly effective in treating some sleep disorders.

Dental oral appliances – Devices such as splints and mandibular advancement devices, similar in appearance to mouth guards used by athletes, open the jaw and allow air to move freely in and out of the windpipe.

Behavioral therapy – Techniques such as deep breathing, progressive muscle relaxation, guided imagery, self-hypnosis, and light exercise often help to reduce stress and promote relaxation for a natural sleep.

Diet modification – Changes in a diet, such as reducing or eliminating stimulants like caffeine, alcohol, nicotine, and avoiding heavy or spicy meals late in the day, make it easier to sleep.

Surgery – When other treatment options fail, surgery may be needed to correct a sleep disorder. Surgical choices include removal of the tonsils and/or adenoids, removal of excessive tissue in the throat to make it wider, repair of bone and tissue abnormalities in the mouth and throat, and bariatric surgery to facilitate weight loss.

Respiratory muscle stimulation – This consists of a breathing sensor and a stimulation lead, powered by a small battery. Implanted during a short, outpatient procedure, this stimulation continuously monitors your breathing while you sleep. The system mildly stimulates key airway muscles, and gently moves the tongue and other soft tissues out of the airway so you can breathe during sleep.
Sleep Therapy Follow-Up

Once you have started a treatment, we will work closely together to remotely monitor the effectiveness of the therapy. This will consist of our respiratory therapist monitoring your hours of use and the number of sleep apnea events, follow-up phone calls, and follow-up physician visits. We will need to communicate with each other to achieve the best results for you.

[Dormeo]

I've been following your thread and just want to wish you the best of luck with the study.

[skiajl6297]

Thank you for the support and helpful advice! More to come.

[SarcasticDave94]

You're about to get a study on sleep where sleep will be slightly hindered by wires and a foreign location. Despite that, best wishes to ya for success on hitting the bullseye to get a real resolution on needed treatment. Post it when you got that info.

[skiajl6297]

Here we go!  I had my study, and my sleep technician was great.  I explained my situation to her, and she had already read up on my chart and the doctors notes, and was engaging.  I provided her with my typed up summary of how I got here, and she read it.  She indicated that she would move me to bipap as soon as she started seeing centrals in order to progress through the titration protocol as quickly as possible.  I was connected up (full PSG, nasal cannula, blood ox, movement sensors, the whole 9 yards.)  

I started the night without any pap.  It took forever to fall asleep even though I was exhausted, unfortunately.  I was quickly moved onto cpap once I began to show central apneas.  I was then quickly moved onto bipap when I showed a significant number of centrals and central hypopneas.  I was titrated on bipap, but we ran out of time to be titrated on ASV.  She said that I did well on bipap once titrated, but we ran out of time to try ASV, and then I was sent on my way.

I haven't yet spoken with my doctor, and unfortunately have my follow up with him scheduled for two weeks out, as he is out of the country.  I asked the office for details on how to proceed given the timing.  I'll see what they say, but I hope I don't have to wait two weeks to start the insurance approval clock.

I feel so validated.  Obviously I need to see the raw data, and need his assessment of it, but this should surely qualify me for advanced pap, right?  Someone with a history of UARS and mild OSA, with significant central apnea would be complex apnea, no?  Is bipap the right treatment for complex apnea?

Thank you all for the support and frequent feedback - it really does mean a lot to me.  More to come.

[SarcasticDave94]

Here we go!  I had my study, and my sleep technician was great.  I explained my situation to her, and she had already read up on my chart and the doctors notes, and was engaging.  I provided her with my typed up summary of how I got here, and she read it.  She indicated that she would move me to bipap as soon as she started seeing centrals in order to progress through the titration protocol as quickly as possible.  I was connected up (full PSG, nasal cannula, blood ox, movement sensors, the whole 9 yards.)  

I started the night without any pap.  It took forever to fall asleep even though I was exhausted, unfortunately.  I was quickly moved onto cpap once I began to show central apneas.  I was then quickly moved onto bipap when I showed a significant number of centrals and central hypopneas.  I was titrated on bipap, but we ran out of time to be titrated on ASV.  She said that I did well on bipap once titrated, but we ran out of time to try ASV, and then I was sent on my way.

I haven't yet spoken with my doctor, and unfortunately have my follow up with him scheduled for two weeks out, as he is out of the country.  I asked the office for details on how to proceed given the timing.  I'll see what they say, but I hope I don't have to wait two weeks to start the insurance approval clock.

I feel so validated.  Obviously I need to see the raw data, and need his assessment of it, but this should surely qualify me for advanced pap, right?  Someone with a history of UARS and mild OSA, with significant central apnea would be complex apnea, no?  Is bipap the right treatment for complex apnea?

Thank you all for the support and frequent feedback - it really does mean a lot to me.  More to come.

Congrats on getting through it. Ask the doc or the sleep lab for a full detailed report copy and you can post the redacted version here...all pages. It helps us see data and you have a backup copy so you might not need another sleeps study again. They may tell you to wait on seeing the doc. The report is legally yours BTW.

If you're dealing with complex apnea, not just any BPAP can help. That would be an ASV or possibly an ST. My understanding on complex apnea is that a patient would have Central and Obstructive Apnea events. I have it so I'm on ASV, which is a BPAP but a bit more in the program to act on central events. I don't know if UARS falls into the CA category.

PS typically CA needs to comprise 50% or more of events to qualify for ASV.

[Sleeprider]

BiPAP can provide pressure support to make breathing easier, overcome obstructive apnea and restriction from upper airway and COPD, but it is not the solution for complex or central apnea, which requires a backup rate to stabilize breathing when spontaneous effort is not present. I think your study was a success and your doctor has a lot more to consider than before the study.The study finally confirms a need for PAP beyond CPAP. I think you still need to schedule ASV titration. If you are prescribed bilevel, you will most likely continue to see central events. If you can rent a machine instead of buy, that will give you a chance to try bilevel, and perhaps fail, with minimal financial impact.

Hopefully you will obtain a record of this sleep study so you can look at the details, and learn what pressures worked and how long they were tested.

[Dormeo]

I'm so glad you're on the path to help.