I cannot fall asleep with my bipap/home ventilator. Hypoglossal nerve stimulator?

[Jay51]

Thank you for the post Cronkster.  Sleeprider and other administrators/moderators/monitors provided me with links to all the threads on this forum concerning the hypoglossal nerve stimulator (inspire) so I could read all of them and make my own personal decision about the device.  Typing "hypoglossal nerve stimulator" (or even typing in each of the 3 words separately one at a time) and/or "inspire" in the search box at the top of the page does the same thing I think.

[cronkster]

Thank you.  And thanks for the reference to the facebook group.  Very helpful.  Continued good luck with the device.

[cronkster]

Just saw this little gizmo which might help?

[Jay51]

I remember finding and reading a few research studies on the effectiveness of the inspire when doing the internet search, too.  The inspire is fairly new, but they were able to find enough people to do a few clinical trials.

[Jay51]

Update:  I saw my Pulmonologist yesterday.  

COPD:  Good news.  He wants to retest me in 6 months and thinks I will pass my pulmonary function tests (will show no COPD).  I have been doing 4 deep breathing exercises daily to increase the volume of air I take in each inhale (my inhale was shallow on my last pulmonary function test).  Pulmonologist said he has not officially diagnosed me with COPD because I have no shortness of breath or any other symptoms.  He told me he has seen the progression of COPD in thousands of patients and, "COPD is not going to kill you,"  he said.  I am grateful about that.  

PR Trilogy Evo Ventilator:  It uses AVAPS-AE algorithm.  It is a volume assured ventilator (makes sure I get at lease "X" amount of tidal volume every minute). I started at 500 tidal volume (Vt); then decreased to 450; then to 400; then to 350; and currently at 300.  Average for an adult male is around 500.  Average for an adult female is around 400 or so.  300 is for a child.  I have had difficulty tolerating 400 or 500 at night (it seems like I am trying to fall asleep while taking a brisk walk or a very slow jog - that pace of breathing).  300 is much more tolerable for me, but I found out yesterday that it is too low to be therapeutic for me. 

When I first got the Evo back in January of this year, I got into the system and downloaded my data on a usb stick.  When I tried to open it though, it was encrypted.  Yesterday the Pulmonologist had all of the graphs from the Evo.  It was a treat to be able to see them.  They were crude, basic bar graphs just like the "myair" from Resmed. Pulmonologist saw that I got down to 6 breaths per minute on one chart and it bothered him.  He thought about it awhile and said, "at 6 breaths per minute, that is basically 6 apneas per minute (the maximum a person can have - every 10 seconds without breathing is a full apnea).  He said the only way I could do worse would be to breathe 5, or 4, or 3, or 2, or 1, or 0 breaths per minute.  That rang a bell with me and was a wake up call.  He said the Evo ventilator (at the appropriate settings) will prevent this from happening.  So he wants me to raise Vt by about 50 for the next few months and hopefully be at 500 when I see him again in 6 months.  He said if I both, 1.  Pass the pulmonary function tests; and 2.  can tolerate 500 Vt on the Evo, he will probably discharge me.  I am going to give it my best shot.  

Resmed S9 Adapt ASV:  I purchased a used one on Craigslist this year for a price I could not refuse.  I have not yet been able to sleep an entire night with it, but I am still trying (I will post the OSCAR charts here when I am able to do this).  I have the settings at the basic EPAP 5-8 and PS 3-12 (*this S9 only has one setting for EPAP though and I have been using 5).  I have been able to use it during brief naps of 20, 30, or 45 minutes or so.  And every time I have used it for a nap, my AHI has been 0.0  Every time.  I am not sure if it will keep my Vt high enough for a full 8 hours at night though when my breathing shallows and my rate drops, based on its algorithm that recalculates every minute or 3 minutes.  I will try to best to accomplish this in the future.  

Naps:  I have noticed a disturbing trend the past few months (when I nap without using either the Evo or S9 adapt).  Either just as I am about to fall asleep, or when I am asleep, I suddenly become alert and I am hyperventilating pretty strongly.  Obviously this is because I just hypoventilated pretty badly just prior to that.  It is becoming unnerving to me.  It is problably a good thing, because I plan on using either the S9 or Evo during my naps now.  

Miscellaneous:  A few other things I learned yesterday I would like to share also.  When I used the ST (A), at times when the pressure increased very high (I have 15-25 written down as what I used), I felt like my lungs were going to pop.  Pulmonologist said that when using a ventilator, pressure should not be so high that it causes chest pain after using it (chest pain goes away after stopping using the vent.).  He said overinflation of the aveoli can occur and cause slight tears in the sacs; and then subsequent edema and inflammation.  Simple fix though he said, just decrease the max pressure until the chest pain stops.  He called it ventilator associated lung injury or something like that.  

Also, one reason he is not going to diagnose me with COPD is because of the technician who performed my pulmonary function test.  He said in his experience, the most important factor in getting a good, quality  medical test is the experience of the clinician administering the test.  He has his own private sleep lab that he sends his patients to also in order to try to get the most consistent results.  

My days of sleeping supine, flat on my back may be over for good (unless I elect to have surgery) because the pressure has to be so high that it causes lung injury to me.  I will continue to sleep on my 45 degree angle body wedge and use my high (4.5" and fairly rigid (thick) soft cervical collar.  The SSC has another big advantage I have found also besides keeping me from tucking my chin towards my chest.  When I position it correctly underneath my jaw, it keep my mouth closed at night (my jaw does not fall wide open). I can still breathe out of my mouth if necessary though, but it makes it easier then I use the pillows mask (just a small amount of light tape keeps it completely closed).  I am currently alternating between 2 full face masks and one nasal pillow mask.  

Comments welcome.

[Jay51]

Brief Update:  Saw my Cardiologist yesterday.  Completed all the tests that I took earlier this year in February.  Results this time were improved across the board on all tests.  The stress test was definitely easier this time.  

When Cardiologist pulled up 3D image of my heart rotating around 360 degrees, he placed it on a crosshairs grid.  The 2 small dark spaces on my heart (non-functioning places) had decreased in size compared to February.  He said, "Those areas are shrinking".  I was very grateful.  

He said to keep doing what I am doing (using the ventilator, and taking metoprolol [a beta blocker which he believes helps my heart to do less work overall] and propafenone [med for heart arrhythmias].  No arrythmias have been found.  He said, "heart disease or a heart attack is not going to kill you with clean coronary arteries, and a good heart rhythm, and completely normal LVEF (ejection fraction)."  My heart rate runs a little lower during the day (in 40's usually), and can dip to around 40 or upper 30's at night, but he is not concerned about that.  

I have got to believe using the ventilator has helped (and taking meds, etc.).  I used the Evo as much as I could this year; and definitely plan on continuing to use it as much as I can.    

I plan on posting my OSCAR soon on my S9 adapt ASV I have.  There could be something OSCAR finds that has been missed so far to make therapy even better.

[Sleeprider]

Glad to hear you received good news. Merry Christmas!

[Jay51]

Thank you very much Sleeprider and the same to you!  I very much appreciate your expertise and positive encouragement and patience in explaining everything (looking over my home sleep study and polysomnography and ST-A and Astral results) to me in helping me get from the wrong machine I was 1st prescribed when I 1st came to apneaboard to hopefully the correct one now.  Also appreciation to SarcasticDave for continuing to encourage me to see a Cardiologist when I did not want to see one.

[Jay51]

I saw this article that talks about the "comorbidities" caused by untreated OSA and wanted to post it here if anyone is interested in reading it (or skimming it like I did). Comorbidities are separtate health problems.

Obstructive sleep apnea and comorbidities: a dangerous liaison | Multidisciplinary Respiratory Medicine | Full Text (biomedcentral.com)

It is fairly lengthy article, and I only skimmed it.  Main points are given below:  

Is Obstructive Sleep Apnea a Comorbidity? 

[color=rgba(26, 27, 24, 0.75)]Because OSA is a comorbidity, untreated OSA makes a person more likely to have or develop other chronic health conditions. Based on a 2019 study published in Multidisciplinary Respiratory Medicine, here’s what we know about sleep apnea comorbidities:[/color]

• There is a high prevalence of comorbidities in people with OSA. 
  
  
• OSA is associated with metabolic and cardiovascular diseases, such as diabetes and heart disease.
  
  
• Prevalence of comorbidities in people with OSA increases with age.
  
  
• Comorbidities vary between men and women. For example, hypertension and depression are more common among women with OSA, while type 2 diabetes and heart disease are more common in men with OSA.
  

[color=rgba(26, 27, 24, 0.75)]While sleep apnea is more often linked to specific medical conditions, researchers have yet to establish how these conditions are linked. Therefore, comorbidities continue to be important, ongoing topics in OSA research.[/color]
What are The Comorbidities of Sleep Apnea?
[color=rgba(26, 27, 24, 0.75)]Common comorbidities of Obstructive Sleep Apnea are diabetes, obesity, heart disease, stroke, hypertension, and depression. For more details describing the connection between sleep apnea and a specific comorbidity, click on the link in each section below. [/color]
Diabetes and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]OSA is highly prevalent among people with diabetes. People with severe OSA are more likely to develop diabetes; and people with diabetes, especially those who are obese, are more likely to have OSA. In fact, the majority (54.5%) of patients with diabetes also have OSA, while 86% of obese patients with type 2 diabetes have OSA. [/color]

[color=rgba(26, 27, 24, 0.75)]The effects of disrupted at-sleep breathing patterns, plus the resulting daytime sleepiness and fatigue, could impact glucose metabolism and the body’s sensitivity to insulin — which could increase risk for development or progression of diabetes.[/color]
Obesity and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]Weight, measured specifically via Body Mass Index, is an indicator of sleep apnea risk. While increased body weight is linked to higher risk of OSA, people with OSA also have a higher risk of weight gain or obesity. [/color]

[color=rgba(26, 27, 24, 0.75)]Plus, obesity may worsen the effects of OSA and its comorbidities. Increases in body weight are associated with more severe OSA and increased risk for other medical conditions, such as type 2 diabetes, hypertension, stroke, and heart disease. [/color]
Heart Disease and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]Untreated OSA, particularly more severe OSA, is connected to greater risk of cardiovascular disease. The cycle of apneas, in which the body stops breathing for at least 10 seconds, reduces blood oxygen levels and causes a spike in heart rate and blood pressure. Over time, the body’s stress response to disrupted breathing can contribute to heart problems, including arrhythmia (especially atrial fibrillation), heart disease, heart attack, heart failure, and sudden cardiac death.[/color]
Stroke and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]OSA can be an after-effect of stroke; it’s also a significant risk factor for first-time or recurrent stroke. The more severe the OSA, the higher the risk of stroke and more severe the prognosis. Stroke patients with OSA typically experience more severe initial symptoms, prolonged hospitalization, and more time in rehabilitation. [/color]

[color=rgba(26, 27, 24, 0.75)]The regular, nightly pauses in breathing (apneas) reduce blood oxygen levels and elevate blood pressure within the brain. These changes may impair the brain’s ability to regulate blood flow to the brain — which makes people with untreated OSA more likely to experience stroke.[/color]
Hypertension and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]Patients with OSA experience elevated blood pressure during sleep, and often during wakefulness. This blood pressure variability makes hypertension a recognized cause of secondary hypertension, and it exposes OSA patients to risk of stroke and cardiovascular diseases.[/color]
Depression and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]People with OSA have a higher prevalence of depression than those without OSA. While the relationship between the conditions remains unclear, both share symptoms — fatigue, sleep problems, anxiety — that may cause under-diagnosis of OSA among depressed patients.[/color]
Renal Disease and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]Renal disease shares common risk factors with OSA: hypertension, diabetes, obesity, and older age. These shared risk factors may contribute to the onset and development of multiple comorbidities in a person. [/color]
Cancer and Sleep Apnea
[color=rgba(26, 27, 24, 0.75)]Further research needs to be conducted on the association between OSA and cancer. While a 2012 study in the American Journal of Respiratory and Critical Care Medicine linked sleep-disordered breathing with an increased cancer risk, there is no definitive evidence to make the claim that cancer and OSA are comorbidities. [/color]
Is Sleep Apnea a Comorbidity for COVID-19?

[color=rgba(26, 27, 24, 0.75)]According to a 2021 study by researchers at Kaiser Permanente Southern California, people with untreated sleep apnea — particularly people with severe OSA — have a greater risk of catching COVID-19. While OSA has not been established as a risk factor for patients with COVID-19, higher rate of infection may connect to the overlap of comorbidities for both OSA and COVID-19, such as diabetes, obesity, hypertension, and cardiovascular disease. [/color]
Are There Other Sleep Apnea Comorbidities?
[color=rgba(26, 27, 24, 0.75)]Additional OSA comorbidities include .. [/color]

• Fatigue
  
  
• Anxiety
  
  
• Fibromyalgia
  
  
• Post-Traumatic Stress Disorder (PTSD)
  
  
• Asthma
  
  
• Chronic Obstructive Pulmonary Disease (COPD)
  
  
• Gastroesophageal Reflux Disease (GERD)
  
  
• Hyperlipidemia (high cholesterol)
  

[Jay51]

https://www.cnn.com/2023/05/31/health/sl...index.html   

I saw this article yesterday.  Basically, it says that severe sleep apnea can contribute to dementia and brain shrinkage because the arousals and disturbances can keep a person from reaching deep sleep.  In deep sleep, waste products like amyloid plaques are cleared out of the brain.