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Severe Worsening
#1
Severe Worsening
Hello. I've been on CPAP since 2015 and done fairly well. In the last six months or so I noticed that I was having what I thought were minor awakenings mostly based on mask fit or leakage. I adjusted things and they seemed fine. But since I was asleep, I wasn't exactly sure what was causing my awakenings. Then, about a month ago, my liver enzymes drastically went through the roof and now in the last week or two I've found myself with these very "hard" awakenings with my head thrown back; my mouth open, gasping for air, with all nasal passages dried out; totally clammy; often times very hot and have a rapid, pounding heart rate. When I get up, all of these symptoms go away. These hard awakenings are happening two or more times a night, typically after 3-3.5 hours of sleep; basically every time I sleep.

The earliest my doctor can get me in for a study is May 22nd. In the meantime, before the study, what I'd like to have is some idea of what in the heck happened and why did it happen so quickly? What seems possible? New mask fit? A BIPAP vs CPAP machine? Different pressure? The myair says everything is fine, no significant leakages or non-breathing episodes, etc., so I'm really perplexed.

I will say that slowly after 2018 my liver enzymes started a slow trend up, but nothing concerning. Since after starting CPAP in 2015 they fell to low-normal range and had lots of room to go up within normal. But then two months ago they jumped and then last month they jumped 40 points and well above normal. I'm just perplexed. I totally wasn't expecting any fast deteriorations, although I did figure that at some point the CPAP would need to be adjusted.

Also, I don't drink, smoke, etc. and there's no big variations in weight in the last five years.
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#2
RE: Severe Worsening
Sorry I can't provide any answers to your questions--others will. The symptoms you are having sound like cardiac events to me (I have congestive heart failure) and I will ask one question: Do you take Tylenol? Even a small amount amount send my liver enzymes up.
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#3
RE: Severe Worsening
Welcome crezzzman

Clearly you need a complete medical assessment but I am sure you are on to that. The 22nd May is not that far away and hopefully you will get some guidance then.

In my own case my own chest pain, palpitations, air hunger, air starvation, headaches, waking up warm and hot and sweaty have only cleared once I drastically reduced my PAP pressures, and accept some mask leakage. In short, my theory is that I was overtreated, with too high pressures. 

Why do I need less pressures than originally prescribed? 1. Soft neck collar 2. loss of weight 3. change of diet, less dairy, less wheat. 4. Pharyngeal exercises? hmmm maybe. Things change. Life changes. Cpap needs to change too.

Of course this is just anecdotal and may not apply to you at all.

You could ask the sleep clinic if you need to be re-titrated; or you could post some charts here using OSCAR see the link in the black bar at the top of the page.

I am sure you will get some good suggestions from the team here with similar experiences, or once they see your charts.

My own opinion: there is a lot that goes on with one's physiology when you are on CPAP that either (a) we don't know about (b) they don't know about, or (3) they aren't telling us about. There is stuff we and they cannot measure like CO2 levels, fluid shifts, circulatory changes, residual pulmonary pressures (internet search AutoPEEP), and cannot fully understand. With respect to those, we are on our own, changing our own settings to provide comfort first, charting things like AHI etc last.

Forget myAir, it does not provide you with any useful information.

How you feel in the morning or during the night is far more important than what myAir and your sleep charts can tell you.

Things change. Few people stay on the same dose of medication for the rest of their lives. Blood pressure, sugar levels, antidepressants, whatever. Not surprising that CPAP needs to be fine tuned either.

Hoping they can help you out, sounds like something is not quite right.
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#4
RE: Severe Worsening
Crezzzman, we rely on Oscar charts to help us interpret if there is a respiratory nexus to problems like this. Oscar can show us the respiratory evolution of your hard awakenings which may allow us to suggest settings or other tools to mitigate the distress. These are details MyAir cannot provide. Download the free OSCAR software and upload data from your machine using the SD card. Get an SD card if you don't have one. Your profile does not really give us any information on settings or even the model of Resmed machine you are using. That information would be available from an Oscar chart.
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#5
RE: Severe Worsening
(05-05-2022, 05:33 PM)crezzzman Wrote: Also, I don't drink, smoke, etc. and there's no big variations in weight in the last five years.

Any medications, prescribed or otherwise?
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#6
RE: Severe Worsening
Hi everyone, thanks for the responses. Regarding medications, yes, I started a new medication about nine months ago getting twice weekly allergy shots with the antihistamine Zyrtec. In February, all crapola hit the fan and I woke up early one morning both super hot, super cold, restless, with muscle aches and could not go back to sleep.

My old sleep doctor's website says that long term antihistamine use can block acetylcholine which can lead to insomnia. My research indicates that long term antihistamine use can also lead to a whole host of other problems that doctors deny but that I and others have had. 

I looked at my calendar and could track when the symptoms slowly began to when I started getting those allergy shots. I don't take any other Rx medications but was taking Advil 1-2 a week for headaches and noticed my use of Advil go up in this time period as well.

Then, I talked to a friend who last year had almost the exact same problem after using antihistamines for four months. But he doesn't have sleep apnea.

The mouth opening, gasping for air, and dry mouth, and pounding HR has stopped the last few days and I am sleeping more hours per night, still broken up, but not nearly as deeply as normal; but it is slowly getting better.

Also, I think it's a very real possibility (that besides the Zyrtec) there could be something not in alignment with me and my machine and it's possible that the pressure is too high or that I need a Bipap or something. It's the "something" else I came to this board to find out because sleep apnea is such a big field and I only know a tiny bit about OSA.

As I said in my earlier post, my liver enzymes did start going up in 2018 and have very slowly kept rising over the years on a slight upward trajectory; and THEN shot up 30 points in just the last month to month and a half.

For now on, I'm going to ask for my liver enzymes to be run annually or biannually. They correlate strongly with SA and then if I see them go up, I can ask for another sleep study. I never want this to happen again. In addition to the lack of sleep, I've also had over the last few months major muscle aches; joint pain; headaches; a tingly head during the day; and a bunch of other problems. And when I felt hot, I checked my temperature and it was 95.7. I was cold!
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#7
RE: Severe Worsening
I just want to be sure you and your doctor are discussing the increase in your liver enzymes. Could you confirm?

Also, I see this about Zyrtec on line:

Stop taking this medicine and call your doctor at once if you have:

fast, pounding, or uneven heartbeat;
weakness, tremors (uncontrolled shaking), or sleep problems (insomnia);
severe restless feeling, hyperactivity;
confusion;
problems with vision; or
little or no urination.

Common side effects may include:

drowsiness, tiredness;
dizziness, feeling light-headed;
feeling hot, sweating;
numbness, tingling, burning pain;
decreased sense of taste;
headache;
upset stomach, nausea, constipation; or
dry mouth, sore throat.
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#8
RE: Severe Worsening
Yes, I've talked to them. They specifically don't seem to think that the liver enzymes are that big of a deal. I do. Liver enzymes are correlated with uncontrolled SA.
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#9
RE: Severe Worsening
(05-07-2022, 01:24 PM)crezzzman Wrote:  My research indicates that long term antihistamine use can also lead to a whole host of other problems that doctors deny but that I and others have had. 

Did you research "Zyrtec" and "vivid dreams and nightmares"?
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#10
RE: Severe Worsening
Re liver enzymes:

https://my.clevelandclinic.org/health/sy...er-enzymes

If your doctor is not giving this the right attention, you might ask for a referral to a hepatologist.
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