[Diagnosis] Questions about OSCAR data/SpO2/heart rate/flow limitations

[phlamingo]

I'm sure you will all be glad to know that I will be finding a new sleep doctor/pulmonologist. I'm actually shaking up my whole care team because I've been looking (unsuccessfully) for a diagnosis after I started having extreme fatigue, spiking heart rate, and shortness of breath starting in October (two months after I started using the CPAP). I've been to the ER, had a hospital stay, seen a pulmonologist, and I have an appointment with a cardiologist on Jan 24th. Completed tests are several ECGs, chest x-ray, chemical stress test, echocardiogram, pulmonary function test, CT scan of lungs, and I just finished wearing a heart monitor for two weeks (don't have results yet). None of these tests have brought to light anything that would be causing my symptoms. This lack of information is what led me to start looking more in-depth at my sleep.

My PCP told me at the beginning of December that she doesn't know what's causing my symptoms and to see her again in three months. She also hasn't responded to my requests for referrals or updated me about completed tests. She's fired - I have an appointment on Tuesday at a different clinic for a new PCP.

I was referred to a pulmonologist for the shortness of breath. He ordered a lung function test which I had two weeks ago. He said I don't have lung disease and go back to my PCP for more info (in other words, stop asking him questions). His nurse told me that maybe I should try exercising. He's fired.

My afore-mentioned sleep "doctor" is an MA. She's obviously being fired. I could ask to be referred to the sleep doctor at that clinic, but she happens to be married to the pulmonologist who blew me off. I will ask my new PCP for a referral to the sleep center at the teaching hospital (UCHealth - Anschutz for those familiar with it) as there appears to be more multi-disciplinary support there and hopefully they will look deeper than just my average oxygen saturation for the night.

And then there's all you wonderful people. 

Should I go ahead and ask my new PCP to prescribe night-time oxygen until I figure out what's going on?

[SarcasticDave94]

Sincere best wishes you get the treatment you need. I'd outline all the medical concerns with new PCP with test results if available and names of the failed & fired medical people. Get all detailed test results in hand because once fired, these egotistical doctors may not be able to find these easily. Mention HIPAA. If things get real bad, pass on the bad experiences to your insurance so they can note the poor healthcare from these jokers. Do not pull punches, your health deserves better.

[Ratchick]

Good luck. For what it's worth, I have a somewhat different issue (central sleep apnea) but I spent ten freaking years with horrific oxygen stats at night. I'm on oxygen now with CPAP (and PLEASE GOD will get ASV in a few days) and it has helped bolster my sats so I now have an average of 91% or so instead of an average of 89-90%, and I have less precipitous drops so low that my pulse oximeter couldn't record it, sometimes lasting for upwards of a minute or a minute and a half for a single apnea. That said, I'm STILL spending way more time on average than you per night below 90% (usually between an hour or two, but sometimes 3+) even on oxygen supplementation, and yeah, it was enough that despite having no lung issues, I was suffering from chronic respiratory failure. I'm currently bedbound from what was initially diagnosed as a form of dysautonomia, but I suspect is at least seriously worsened by, if not completely related to the central sleep apnea, as they started at the same time. Oxygen is helping a little with the numbers, but I still feel like garbage, and I have no doubt you do too, if you are spending so much time hypoxic every night.

Someone's already mentioned obesity-related hypoventilation syndrome - and being diagnosed with OSA is NOT an exclusion for that, either. Sadly a lot of sleep doctors are... well, they don't know their ass from their elbow, as you've discovered. I hope that you can find someone to diagnose you properly.

[CorruptAlligator]

I would get periods of high FL during my sleep and it was during sleeping on the back. If you are obese, you need to try to sleep on the side. My FL was high when my body switched to supine.

Wear the collar, EPR of 3 (or even better, higher with Vauto), sleep on the side. This will maximize FL reduction.

I work on losing the weight since then because it's the extra fat that preventing me from sleeping on supine without breathing issues. It's no brainer to try to lose weight so i can sleep properly.

[Gideon]

From here forward post 3 sets of charts
1. Oximetry
2. Standard OSCAR charts as you have been
3. Advanced OSCAR charts which target respiratory function.
These include minute vent, tidal volume , respiration rates and ratios

My gut is saying you would benefit from an AVAPS BiLevel where you can set target volumes.

[Geer1]

Imo you are probably suffering from a combination of little things. Little things like the mild hypoxemia you have during sleep, extra respiratory effort during sleep, other physical effects of your weight, I assume some depression from dealing with these issues, and perhaps some other underlying medical issue (like food intolerances were for me, which medicine is useless at diagnosing). These little things can all add up to create a big issue but won't show up as any single obvious test/issue to explain all your symptoms.

There is actually a book meant for depression on this topic called The Slight Edge. Its premise is to make big improvements you need to make a bunch of little changes. I am not mentioning this because I think you have depression but because I believe the concept is the same for both mental and physical health issues. In my case I fought both and had nearly hit rock bottom before I started to figure things out. I started the journey with antidepressants and counselling. Then I added in exercise, a sleep study that indicated CPAP. Doctors appointments to figure out treatment for my nasal congestion and LPR (nasal rinses, sprays, surgery, PPIs and diet changes). Then I kept hitting road blocks and it was actually the beginning of covid cancelling my in clinic sleep study indefinitely that made me decide to try a series of food elimination diets (starting with low FODMAP although if doing again I would start with low allergen/Paleo type diet and then do low FODMAP) along with seeing a naturopath and getting tested for food sensitivities (mostly useless imo) and SIBO (was helpful for me). It was the food elimination diets and SIBO treatments that brought the most improvement but I had already made significant progress with the little things done before. It was all these little efforts to try to understand and treat each little symptom I had that helped me fight through the symptoms and make progress. If I had just looked for a home run medical diagnosis to explain everything I don't believe I would have found the improvement I did, it was the slow process of treating each symptom to the best I could that allowed me to improve. I still have some issues with fatigue that I am still trying to solve but these steps so far have taken me from a 3/10 to 8/10 and now I believe I just need to find the last couple things bothering my digestion and sleep.

My recommendation on how to proceed with medical team is to discuss with PCP or pulmonologist that you understand you don't have breathing issues when awake but that you know you have moments of hypoxemia during your sleep even though apnea is fully treated. Show them the oximetry data as well as on your original sleep study (circle the areas where SPO2 was below 90%) to back that up. State you have been researching this and getting some help online and that you believe this issue is called obesity hypoventilation syndrome and that it is caused by a combination of your weight and the bodies reduced breathing effort during sleep. State that you have been told that people have found benefit from using a bilevel and/or supplemental oxygen to treat this issue. You can also show them page 22 of the following Resmed titration protocol which states "Consider using bilevel when: ... • Patient has history of ventilatory insufficiency such as ... obesity hypoventilation syndrome (OHS)1".

https://document.resmed.com/en-us/docume...er_eng.pdf

I believe any basic bilevel (preference imo would be Resmed Vauto) will treat these desaturations and keep you adequately ventilated and oxygenated. I think your body will naturally control the ventilation by adjusting respiration rate making AVAPS unnecessary in this application (you would be less likely to get AVAPS if asking for it). Imo a bilevel would be the best start but if doctor is only willing to do oxygen take him up on it.

The key in these negotiations is to make the doctor realize and admit that these moments of hypoxemia are not ideal and that steps should be taken to improve them even if it doesn't necessarily explain all your symptoms (which it very well may not). Tell him you want to focus on treating any and all symptoms/issues you are aware of in the hopes that the cumulative effects will make an effect on what you have been dealing with.

[phlamingo]

Happy New Year all,

Here are today's charts. Don't have much energy today. Every little activity has just worn me down.

Luci

   
   
   

[pholynyk]

phlamingo - Your latest chart shows the pressure dropping to zero at the end of the session. This is an issue with OSCAR that I have been looking into. Because it doesn't always happen, it has been hard to track down the problem. It would be helpful to me if you would make a zip copy of your SD card for me. You can use OSCAR's menu: Help->Troubleshooting->Create zip of CPAP data card. Put your username in the file name and upload it to GuyScharf's Dropbox: https://www.dropbox.com/request/REp6AH7LCGyeOcXfOokH

Thanks, much appreciated

[phlamingo]

phlamingo - Your latest chart shows the pressure dropping to zero at the end of the session. This is an issue with OSCAR that I have been looking into. Because it doesn't always happen, it has been hard to track down the problem. It would be helpful to me if you would make a zip copy of your SD card for me. You can use OSCAR's menu: Help->Troubleshooting->Create zip of CPAP data card. Put your username in the file name and upload it to GuyScharf's Dropbox: https://www.dropbox.com/request/REp6AH7LCGyeOcXfOokH

Thanks, much appreciated

Done! Except I forgot to put my username in the file name.

[phlamingo]

Here's my charts today...