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Desperate Mum to son with UARS seeking advice
#11
RE: Desperate Mum to son with UARS seeking advice
I’ve had a lot happen from being exhausted from sleep apnea. Dosing off driving, welding, watching tv, standing in a meeting, while someone was talking to me. When it came to climbing stairs, I definitely didn’t want to climb them when I had to but not once was I out of breath from climbing them in the house. Something to think about on top of what sleeprider and Bonjour have said.
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#12
RE: Desperate Mum to son with UARS seeking advice
BunnyMummy, you have been using pressure at a range of 6-15 with EPR 3 which is very close to what Bonjour is suggesting. I think this discussion needs to move away from CPAP treatment and sleep disordered breathing for a moment. When an individual is experiencing severe physical distress, deteriorating physical ability, inability to catch his breath and using an asthma inhaler, we are dealing with a medical emergency. I would take him to an emergency room with an apparent pulmonary disorder. You can mention the use of CPAP in the context of what the graphs are showing us. That his sense of hyperventilation is real! This needs a diagnosis and it has nothing to do with your appointment with the sleep disordered breathing consultant. Please consider getting what information you can with the graphs together, and have his acute symptoms addressed as an emergency. This is unrelated to the use of CPAP.

Be assured he is stable, and move forward to schedule appropriate stress tests, cardiac and pulmonary workups. I suspect he is in Afib.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
RE: Desperate Mum to son with UARS seeking advice
It's been easy to overlook this because I didn't have a clue what tidal  volume was. He does get anxious sometimes which could cause hyperventilation, but it shouldn't be happening when he is asleep! As I said, I have seen him jolt awake from seemingly being asleep, and leg twitches, which have improved since cpap but the jolting awake is still happening, just not as often. He often lies there struggling to get to sleep, might be anxious and stressed then, and at the end of the sleep period as he is struggling to get up (doesn't take mask off until last second before getting out of bed so the last 30-45 mins of readings he would be awake. But that doesn't explain the rest of it. The out of breath thing has only happened once, but yes, it takes all his energy to get upstairs from the sofa and he has to lie down straight away. As UARS can cause people to be bedridden I thought that was what it was. Finger oxygen monitor at home test showed his pulse rate all over the place, very high at times. My guess is cpap hasn't resolved this, but no idea why he is a little better with it than without.
We did go to a and e last autumn and his blood pressure was fine but he didn't wait for an ecg as it was too long and he felt ill with fatigue. I will print out some charts and get him there as soon as I can. Thank you all for your help, so glad I posted!
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#14
RE: Desperate Mum to son with UARS seeking advice
An ECG is a good first step, and getting the input of a professional that can make sense of the variety of symptoms and put together an assessment plan is the best way to move forward. I do think CPAP is likely beneficial, however when someone starts using CPAP, there is a tendency to tie a broad spectrum of health problems, fatigue and sleep issues to the use of the machine. It happens all the time, and it's important to be aware when problems are likely external to the use of CPAP. In this case, we see effective control of apnea and hypopnea events and very low flow limitation. That puts me squarely in the same place as your consultant. However, I would hope a professional will look outside his "box" of expertise and make referrals for issues that cannot be explained, and may be important indicators of health problems.

I hope you will keep us informed of his progress and any developments. The identification of this problem seems somewhat urgent as it could be cardio or pulmonary in nature. Atrial Fibrulation has these symptoms, and my biggest concern is that he is in Afib and needs to be stabilized. Afib is very different in different individuals, but the symptoms you have shown us and the respiratory pattern in his sleep deserve to be treated urgently.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: Desperate Mum to son with UARS seeking advice
I am in the uk, I think you need to get a referral from your GP to your local Respiratory clinic. Who prescribed the cpap device ? Mine was prescribed by the dr at the local lung clinic. Has your son had a 30day follow up yet. I second what the others are saying your sons breathing is very erratic when asleep and may be indicative if something else going on
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#16
RE: Desperate Mum to son with UARS seeking advice
I'm going to quote some material from AliveCor article, "Can Afib Affect Your Breathing"?


Quote:How your heart can leave you breathless

AFib symptoms can differ from person to person, but whatever form they take, they can be frightening. That’s especially true when a quivering heart muscle allows blood to get struck in the heart, leaving you short of breath.

Not everyone with AFib will feel changes in their breathing. Respiratory problems often come when AFib has been left unattended for long enough to cause significant blood backup.

Atrial kick.
AFib leads to a loss of “atrial kick”, which results in a 30% loss of output from the heart. In turn, your organs tell the brain to send more oxygen, and the brain instructs the lungs to work harder. This manifests as heavier, faster breathing – it’s an involuntary response to oxygen-starved tissues.

Fluid buildup. A rapidly beating heart won’t be able to pump blood into the body as well as it should, causing blood to gather in the pulmonary veins (which lead from the lungs to the heart). When blood doesn’t move freely between the lungs and heart, fluid can build up in the lungs.

Fluid in the lungs is often a sign that AFib has advanced so much that it’s led to heart failure. At this point, breathing can become labored because your lungs can’t bring in or move out oxygen easily. And without a steady supply of oxygen, your muscles and organs will start to feel the fatiguing effects, too.

Is sleep apnea making things worse?

If you have obstructive sleep apnea, your risk of developing AFib is two to four times greater than average. There are different kinds of sleep apnea – obstructive or central – that are brought on by different deficiencies. But whether your upper airway collapses during sleep (obstructive) or your central nervous system doesn’t control your breathing while you’re asleep (central), you’re at risk for a range of medical problems.

When sleep apnea goes untreated for a long time, it can cause cognitive impairments and increase your chances of developing several cardiovascular conditions. The relationship between sleep apnea and AFib is still not entirely understood, but it does seem to be reciprocal: not only is your risk of developing AFib greater when you’ve been diagnosed with sleep apnea, but experts estimate that half of all AFib patients also have sleep apnea.

If you have both conditions, treating one could help to control the other. Sleep apnea usually calls for treatment with a CPAP machine and some lifestyle changes. Your doctor will outline your best course of action.

Anxiety attacks, hyperventilation, and AFib

If you feel anxious about your AFib symptoms, you’re not alone. For many people, the symptoms of an irregular heartbeat are frightening and worrisome enough to bring on a panic attack, and all of the discomforts that come with it. In some cases, the racing heartbeat, muscle tension, adrenaline rush, and lightheadedness can trigger an AFib episode.
Whether anxiety feeds your AFib or it’s the other way around, the panic could interfere with your breathing. When you begin to breathe too fast, exhaling more than you inhale, your body doesn’t receive an adequate amount of oxygen. This is known as hyperventilation, and there are some ways to help overcome it.

Breathe more slowly, not more deeply. Though it may seem helpful, deep breathing can make things worse. Instead, you want to balance out the length of your inhalations and exhalations by slowing down the breathing reflex. Some techniques to help you slow your breath include:
  • Holding your breath for 10 to 15 seconds
  • Breathing in and out of a paper bag
  • Breathing through pursed lips

Use the CART technique.
Experts have designed some simple breathing exercises that can help overcome panic attacks and hyperventilation when used daily. Compared to other behavioural therapies, like cognitive therapy, CART is more effective at changing the breathing physiology in panic attacks.

Breathing retraining may not cure your anxiety or your AFib, but it can be a good way to cope with symptoms. And if you’re looking for more ways to cope, start by examining the stress in your life: it’s often at the root of medical conditions, and uncontrolled stress can make it difficult to control anything else.

Know when to see a doctor

Dealing with breathing discomforts at home is important, but it’s also important to know when your breathlessness requires medical attention. If you feel chest pain or a heaviness that’s preventing you from taking in a full breath, don’t wait for it to pass: breathing problems can be a medical emergency, so speak with your doctor now about warning signs to watch for, and when to call an ambulance.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#17
RE: Desperate Mum to son with UARS seeking advice
(01-27-2020, 03:50 PM)jaswilliams Wrote: I am in the uk, I think you need to get a referral from your GP to your local Respiratory clinic. Who prescribed the cpap device ? Mine was prescribed by the dr at the local lung clinic. Has your son had a 30day follow up yet. I second what the others are saying your sons breathing is very erratic when asleep and may be indicative if something else going on

Jas, I don't know how things work in the UK, but I think her son may bein AFib and should be evaluated and treated on an emergency basis.  I just can't get any other conclusion from what I've seen and am very concerned. I have no expertise in AFib and have never been pressed to interpret charts like we are seeing in this thread, but the pieces of the puzzle seem to fit.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#18
RE: Desperate Mum to son with UARS seeking advice
I confess to not reading the original post in detail, but I went back and had another look and still don't know why he has been on PAP therapy for two months.  Was there a polysomnography or something else that made PAP an essential part of his recovery?  Has he ever had an echo cardiogram AND an ECG?  Does he have any auto-immune disorders?

I think Sleep Rider might be onto something with the AFib.  Just because there was no apparent instance of AFib during any formal monitoring doesn't mean it hasn't developed in the meantime.  One usually follows the other; they never present concomitantly (okay, virtually never).  It's likely that, barring a congenital condition/defect that is just manifesting now, he had apnea first and the stress has caused several other disorders and conditions.

I also think that a psychologist/life coach and a pulmonologist might be next steps.

Finally, I can sense the fatigue, the terror, and the anxiety you suffer in your posts.  Your own batteries are good for so long, and then they'll need some 'help'.  For both your sakes, please do aggressively seek the assessments of at least two other experts if for not other reason than to keep dealing with this constructively and to help you to feel that you're doing something positive and, hopefully, curative.
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#19
RE: Desperate Mum to son with UARS seeking advice
BunnyMummy, In a past life I was an EMT, the tenants of emergency care are

1. A for Airway. There are likely issues here, just re-read the thread
2. B for Breathing, the charts say things are not going well here
3. C is for circulation, your son's symptoms and SleepRiders suspicion of AFIB

With the above 3 covered, then, and only then do you look for other things.

You are hitting 3 out of 3 here. If I were to pick you up, (ambulance) I would be taking you to the ER, the Emergency Room, in a hospital know for its cardio pulmonary care.
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#20
RE: Desperate Mum to son with UARS seeking advice
I missed the AFIB I agree with sleeprider back to your emergency care team and ensure you get the ecg done this time
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