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THE ROAD TO FAILURE, how I nearly stopped.
#1
THE ROAD TO FAILURE, how I nearly stopped.
Warning: Mega long post. Read at your own peril… 
 
I want to share this because recently quite a few members have recently posted similar symptoms.

I was encouraged to post this based on the link in this thread: PPFL, follow the link in #3 about Prolonged Periods of Flow Limitation. Thanks to Zackio for sharing this.
 
Caveat: This is not advice, just my own experience.

Background:
I started on PAP therapy in January 2020, for reasons in my signature below. Originally going well. Trying hard to make the P30i nasal pillows work, because there is no air leaking to the eyes. (I have blepharitis, two eyelid infections since PAP therapy, each needing 2 weeks antibiotics, one continued to drain pus and needed incision and drainage as an outpatient. Not to be repeated!).
 
I found my OSA could be controlled within a relatively small range of pressures, but low AHI does not equate to good sleep or being rested.

In an attempt to minimise leaks (especially to my eyes) I decided the best way forward was to stick with the P30i, whilst reducing pressures, and watching my OSA and p02 levels.

Troubles begin, Side Effects:
All went OK until about May/June when things started going pear shaped, for reasons that will become apparent….

Since May/June I experienced Chest Pain, both on PAP therapy at night, and during the day.
Most nights the chest discomfort would start shortly after masking up and hitting the start button. My heart felt like it went down a gear or two and was getting “ready” to work hard. Subjectively it felt like my stroke volumes were increasing. Weird.

At the same time, I felt pain/fullness in my leg veins and developed painful incompetent perforators, (precursor to varicose veins) really uncomfortable, even painful during the day.
I also experienced severe headaches on PAP therapy at night, slowly subsiding during the day.
Progressive shortness of breath, even during the day, over the last number of months.

Many nights I had the GT*MO experience (Get The * Mask Off) followed by heart pounding, shortness of breath, air hunger, having to recover for an hour so before continuing the night. 
The sensation of air hunger would often last all day, sucking in the big breaths for no apparent reason.
Reduced exercise tolerance to the point of being short of breath when going on short walks, even just going upstairs to shower. Stopped exercising altogether. 
 
I saw my Respiratory Physician in early June. (My lung functions had already been done at the beginning of therapy and were all normal. He immediately ordered cardiac workup.)

My spreadsheet of all my data showed some correlation of Headaches, Chest Pain and Air Hunger with higher pressures. The only significant correlation coefficient was of 0.14 for Min Press, 0.16 for Med Press, and 0.14 for 95% Pressure, so I erroneously thought the direction of causation was in the direction of higher pressures CAUSING my side effects. (How wrong I was.)
 
We made the decision to lower the pressures, after he suggested going back to basics, Min 7 Max 10 EPR=0.

Then early in July I had to see the Doc again for my cardiac results: CTCA results negative. Calcium score = 0. Stress Echocardiogram normal/negative. So: what on earth is going on?

Based on my spreadsheet findings, we felt we could lower pressures even more, accepting AHI of “up to 10.” He even suggested flat CPAP of 7 cm H20. (I have not dared to try this.)

We agreed I was more sensitive to “overthinking” my physiological responses, hinting at anxiety…

At the end of October I saw him again, frustrated with the continuing chest pain, air hunger, shortness of breath, reduced effort tolerance, general depression and fatigue. The suggested plan was to maintain xPAP until Nov 5th then give CPAP a break for a while(!). Strange suggestion since I am on xPAP for a valid medical reason (see signature).

He suggested lowering the pressure even more, Min 6 Max 8. Not much leeway to play with EPR at this stage, but I continued to feel worse and worse during the rest of October, with heart palpitations, dizziness, faintness, shortness of breath, reduced effort tolerance. Depressed and despondent.

To Hospital
Then one Sunday in early November, my wife had had enough and dragged me off to Emergency Department with chest pains. More of a sense of palpitations, heart strain, bounding heart, chest rawness, difficult to explain. ECG(EKG) normal. Troponins normal. Initial blood panel normal. Three days in hospital. Cardiac Holter monitoring overnight in ward normal. The nurses were repeatedly alarmed about my low BP: 110/60 even 90/60 at night. (My BP has always been low.)

Physician and cardiologist were not convinced PAP therapy had anything to do with this. They dismissed PAP therapy as a potential cause because my symptoms persisted during the day and were not restricted to the night time. They were reassured by all the negative test results, decided angiography was not needed, and suggested possible side effects of one of more of my medications.
 
(On a positive note I was able to continue to use my Resmed machine while in hospital. I was concerned about this initially, but this worked well, especially with the adjustable bed heights, and drip stands for conveniently hanging the hose!)
 
Went back to Sleep Therapist, who was a bit surprised because:
1. My doc suggested I stop therapy for a while, to “reset” things. Not an option, considering why I am on therapy in the first place.
2. My ResScan charts showed I was “doing well”: good AHI’s. “You were doing so well initially, something else has changed.” Correct, but what? She asked about diet? (I had joined my wife in vegetarian/vegan diet for 6 months, just to make things easier in the kitchen). Therefore, she suggested full bloods, iron, Vit D, Ferritin, Ca, TSH, male hormones, Magnesium etc. All came back normal.

Nearly stopped:
At that stage I was close to abandoning PAP therapy: P30i nasal mask, cervical collar, partial mouth taping, Alice bands over the mouth (to reduce the sound of mouth leaks) and eye mask to protect the eyes, were all too much. Getting a bit frazzled! I had built up a level of anxiety and dreaded even going to bed and masking up.
 
Improvement:
Then, encouraged by a post on this forum I decided to start over from scratch: this time trying a FFM. (see post http://www.apneaboard.com/forums/Thread-...lem-solved for very valuable leak tips.)

I started at higher pressures because I thought FFM needed higher pressures than nasal masks. 
Started with Min 9 – Max 13 EPR=1 and again had the same symptoms.  Desperate, one night, I looked back over my previous note and decided to increase EPR to 3 and immediately felt relief and being able to breathe better. At Min Press of 9 I developed aerophagia over a few nights, resolved by reducing Min Press 8 to Max Press 13. I am keeping the Max higher than needed: I found that bouncing up against the Max for long parts of the night led to arousals and RERAs = undertreatment/ineffective therapy, for me anyway.
 
With a hybrid/FFM and 8.4-13 EPR = 3, all the above symptoms cleared immediately: No more chest pain, no more palpitations, no more shortness of breath, no more sighing all day long, energy is returning, leg veins no longer hurt, no more headache or GT*MO moments at night. Starting to exercise again. Once again, I look forward to going to bed at night!

Now just need to fine tune things, but that is another story and the subject of a future post.
 
Lessons:
 
1. Stick with it, if you need PAP therapy, you need it.
2. Listen to your body and instincts.
3. Even though it does not seem logical, try something opposite to what makes sense, a lot of these physiological responses are paradoxical, difficult to explain, even for the medical profession.
4. My interpretation of my spreadsheet results was wrong. I assumed the correlation of high pressures with side effects was causative, but in the wrong direction. I now understand my pressures were too low and the machine was trying to fix the FL, but the pressure was limited by my settings and I was chronically under-treated, as in the link above about PPFL. Bumping up against max pressure settings resulted in all sorts of changes in cardiac preload/afterload, hypercapnia, RERAs, hypopneas, I can’t explain the physiology, but know that when it feels bad, it is bad.
5. Don’t chase the numbers… as the regular contributors on this forum say over and over again: “How do you Feel?”
6. Making slow changes in pressures/EPR and sticking with them for 5 – 10 days makes sense, to allow the body to adapt, UNLESS…
7. …it feels REALLY bad. Then don’t wait, make changes or get help straight away.
8. Take notes, keep records, review them regularly.
9. I now suspect that both side effects and beneficial effects from xPAP are cumulative over time, hence my slowly feeling worse and worse over weeks and months, and hopefully now that I am on track, feeling better and better in future!
9. In-lab titration doesn’t stop when obstructions have been eliminated, perhaps that is only where it starts…
10. Read everything on this forum: what an amazing resource! Huge thanks to all contributors, advisory members and Moderators.

Phew! Feels like I am starting all over again, but at least I have a handle on where I am going.

My goals now are:
1. AHI less than 2 is good enough.
2. Avoid the above side effects!
3. Get to the point where I no longer need to/want to look at my charts daily.
4. Control Flow limitations: that is the next step forward for me.

Apologies for the long post, (inspired by Zackio and a need to share): if you managed to read this far, congrats: let me shout you a virtual coffee!

Coffee
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#2
RE: THE ROAD TO FAILURE, how I nearly stopped.
Thank you for posting, I found it interesting to read in light of my own experience. I have ended up in A&E due to similar symptoms, the only thing that came back was signs of hypoxia in my blood work.

I have been reading about how flow limitations can effect you in the day time, including imbalances of  CO2 and O2 levels.

It can cause systemic inflammation which that article mentions, I have asthma and it can make it much worse.

100% on listening to your instinct, and listen to science and unfortunately that doesn't always come from whom it should.

You've inspired me to post more about my own journey as well!
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#3
RE: THE ROAD TO FAILURE, how I nearly stopped.
About 3 years ago, I was having problems with the higher pressures about 13 and mask leaks and mask noises (farts). These noises would wake me up. The Full Face Mask (FFM) had problems above pressures of 13 according to the DME provider. 

I read some posts on this forum about EPR. I set EPR from 1 to 3 and immediately these mask issues were resolved. What also happen was that my min and max actual pressures were also reduced by about 2 and I was sleeping better.
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