How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Julie
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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by Julie » Sun Jan 29, 2023 5:45 am

See if you can re-rig the Lorazepam better... either taken at a diff. time of day or switched for something else entirely if you believe you still need it - it may be causing more trouble than it's worth.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Sun Jan 29, 2023 8:30 am

Hi Julia,

I take CALMS and this does help me sleep but I only get 3 hours a night. Worse, I think the Propranalol (taken for a "flutter" never diagnosed) is contraindicated for sleep apes. It has been almost a month and I am still getting 2-3 hours a night, and i AM DESPERATE to find the machine settings that will stop long pauses etc. Last night, I had three long Aeneas thtavwned? # (this is an example of what is happening to me! I am falling asleep typing) of almost 45 seconds each. How can a CPAP control this?

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Julie
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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by Julie » Sun Jan 29, 2023 11:43 am

Chance you can DL Oscar (Stickie on main pg) here and experts can see what's what? If it doesn't take, do it on Imgur.com and post a link here instead.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Mon Feb 06, 2023 2:32 pm

I was taking CALM but have been using Seroquel (25 mg) for the past week because I was only getting about two-three hours of sleep on the CALM. On the Seroquel I get more sleep; but i am concerned that it is making me stop breathing for as long as a minute(!).

Could you or anyone else on the board help me interpret the latest data? It seems I have quite low volume several times:

https://imgur.com/a/ANzH81r

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Tue Feb 07, 2023 8:59 pm

I'm not sure what you mean. I have Oscar. But posting screenshots in Imagur is not interactive; is there a way to post something from Oscar which is interactive (instead of posting partial pages showing SOME of the data from the night's sleep)?

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by Pugsy » Tue Feb 07, 2023 9:08 pm

You can use the trial version of SleepHq and I think it is somewhat interactive.
What is it that you want us to be able to do?

Sorry I don't have a link for SleepHQ handy.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Tue Feb 07, 2023 9:14 pm

Hi Pugsy,

I finally saw the Cardiologist today and he said my heart is normal. I thank God for this.

I don't have any "arrhythmia".

However, i still cannot set my machine with optimal therapy (Respironics System One Bipap Auto and/or Remstar Aire10 For Her) because my sleep study clinic is holding on to the report I had done last week to "score" it. Not even my family doctor will get the report when i see her in two days -- we have to wait almost a month to get it.

This is my difficulty. Do you think AutoSet on the Aire10 will be adequate?

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by robysue1 » Tue Feb 07, 2023 10:30 pm

ewriter wrote:
Tue Feb 07, 2023 9:14 pm
However, i still cannot set my machine with optimal therapy (Respironics System One Bipap Auto and/or Remstar Aire10 For Her) because my sleep study clinic is holding on to the report I had done last week to "score" it. Not even my family doctor will get the report when i see her in two days -- we have to wait almost a month to get it.

This is my difficulty. Do you think AutoSet on the Aire10 will be adequate?
What were your settings on the Respironics System One BiPAP Auto? In particular, what were your min PS and max PS settings? And did you use Bi-Flex or not?

The answers to those questions will go a long way to answering your big question of whether the AirSense 10 AutoSet mode will be able to be set to something close to what you have been using and what is probably a reasonable starting point for optimizing the settings on a new machine.

Out of curiosity, why were you set up with an AirSense 10 AutoSet for Her instead of an AirCurve 10 VAuto? The AirCurve 10 VAuto is the Resmed machine that most closely resembles your System One BiPAP Auto machine.
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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Wed Feb 08, 2023 8:23 am

Hi Robysue,

Note: i don't have an arrythmia according to my Cardiologist (and many before him) but I get "something" that "vibrates/flutters" somewhere inside, just as I am dropping off to sleep. I don't focus on it when i am sleeping; but

Thanks so much for replying. I was originally assigned Auto Bipap 4 and 10on the prescription but I either could not get used to the therapy or my numbers were not very good; so eventually, I switched it to CPAP at Ramp 4 and 12.5 fixed. My most recent setting on this machine is 13 but I am unable to sleep more than a few hours on that setting. I was using Bi-Flex. When i switched to CPAP mode I switched to C-Flex and did well on these settings for maybe nine years.

My current settings on the Aire10 are APAP 4 and 14.8. Two nights ago I was at 99.5% of the 14.6 pressure; but last night I was only at 13.37 (99.5%) and 12.30% (95%).

These are some of the best results I have had recently and I only took 1 Seroquel to get these; I normally take 2.

My original BiPAP Auto settings were:(from 2012):

Statistics
Channel
Min Med 95% 99.5%
EPAP Set 4.00 4.50 4.50 4.50
IPAP Set 6.00 6.50 8.00 8.50
PS 2.00 2.00 3.50 4.00
Minute
Vent.
1.13 6.50 8.75 14.38

My Respironics machine started saying "Call Support" and the ramp button would blink and the machine wouldn't start up. But, after awhile, it would start OK. I believe it is working fine (at least the data seems to be correct) but I replaced the machine in 2020 with the AirSense10 by going to a local vendor. They suggested this machine, even though I am a male. For most of last year, I was using this machine with settings Auto For Her Min 9 Max 13 and I slept well on it with no medication except 20 mg of Propranalol (for my "flutter" which is not a "flutter").

Should I purchase an AirCurve 10 VAuto or a new Respironics machine? Should I try BiPAP Auto again?

I am going to see the vendor again today but they are not a Sleep Specialist and I don't know how much they can help.

I really need this question answered: I really, really, really don't want to sleep using medication. I am doing it until I have recovered my sleep deficit for most of last month.

My Resp.Rate is going up and I don't know why but I suspect the AutoSet mode may not be the best for me; or I have set it too high or too low a pressure.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by ewriter » Thu Jul 13, 2023 2:50 pm

Hi everyone. Thanks for all your support and replies. I continue to have "flutter" while reating awake or sleeping. I have had three Holters, two echoes (different Cardiologists), one treadmill, four Allopath doctor visits, one visit to Emerg (BP 180/110 three nights in a row), three psychiatric visits (no real help and, in fact, made me much worse after agreeing to prescribe Seroquel 25 mg, which I ignorantly asked for); two visits to a Naturopath and a visit to a Functional Medicine Specialist. I also went to three different dentists, wanting to remove a large upper molar black with mercury, the only one left in my mouth (I used to have 16) which is cracked and the mercury fillin goes up into my jawbone; the last dentist wants to put me to sleep to do the extraction, which I'm concerned about. My sleep has improved tremendously since January; but I want to come off Clonazepam (cut it from 3 mg to 1 at night) and it's not easy. I have had four consults or more (one in person for the sleep test in March; the others by video) with the Sleep doctor and several visits to my DME and have prayed more on the past 6 months than in the last ten years. My DME supplier (both of them) don't appear to know much about the importance of reducing and eliminating ALL apneas and hypopmeas in semsitive people; and the need for different therapies such as BiPAP or APAP for complex sleep apnea or apnea which causes other symptoms. They are strident with me when I suggest changing my settings at all (even the EPR) and refuse to treat me beyond what the Sleep Doctor prescribed (he has now "lost my records"). I am currently back on a pressure of 9 and CPAP only; but I was using APAP for three years and a pressure of 13 or 14 prior. When I tried that setting again (range of 9 - 17 and EPR 2) I felt that I was really getting rest as opposed to medicated, interrupted, "jetlag" sleep. It seems that what could be going on with me is a combination of inadequate pressure for some time, together with a constantly leaking mask and switching between. APAP and CPAP (because I had a Resporonics System One in one location; and an Aire10 Autoset for Her 100 km away) for at least a month or two. I believe so many who should be on PAP never get it; they get crippled or killed because the DMEs and doctors are so careless and incompetent. And, those who DO get "discovered" are not listened to, especially by family doctors and even specialists such as Cardiologists. I know, for a fact, that I get the 'flutter" when a hypopnea or apnea occurs. But, my family doctor says "we can't be sure about that." Does anyone have suggestions as to what I can say to my DME, Cardio or family doctor (the latter two have already signed me off) at my next visit? I'm discouraged that they just don't seem to want to listen and do not care if you have issues, even if your AHI is good. I still take 1 mg Clonazepam and 5 mg Zopiclone to sleep, plus 10 mg Melatonin/Mg which cannot be good for increasing sympathetic or autonomous tone, while allowing me to sleep (my heart rate drops to 40-45 overnight and is 50s during the day, on average). The Cardio prescribed 10 mg Bystolic, which I am concerned might actually be causing or exacerbating the "flutter" (which has not been identified).

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by Julie » Thu Jul 13, 2023 3:04 pm

Hi again... a bit concerned that you've seen various docs including cardios, but then go off and see holistic ones, rig your meds on your own, expect docs to only see things your way and then wonder why you're still not feeling good, whatever your AHI might be at a given time.

You need to commit to one GP, one cardiologist, one pharmacist who keeps track of your meds, and then listen to them, follow-up on what they suggest and not go off on new tangents, possibly leaving important ones behind or again rigging prescriptions to your own thinking. If you can't give yourself a chance to proceed and stick with docs who you trust, and/or lighten up e.g. on the melatonin (10 mg is a lot!) etc etc. you'll just keep going around in circles and not ever feel good.

From someone who spent their life working in teaching hospitals and watching pts who thought they knew better. Sorry.
Last edited by Julie on Thu Jul 13, 2023 7:03 pm, edited 1 time in total.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by colomom » Thu Jul 13, 2023 5:54 pm

ewriter wrote:
Thu Jul 13, 2023 2:50 pm
I had not been able to find the cause as it was apparently not a true cardiac murmur (29 doctors and specialists in 4 countries couldn't find a reason)...
I finally saw the Cardiologist today and he said my heart is normal. I thank God for this.
I don't have any "arrhythmia"…I continue to have "flutter" while reating awake or sleeping. I have had three Holters, two echoes (different Cardiologists), one treadmill, four Allopath doctor visits, one visit to Emerg (BP 180/110 three nights in a row), three psychiatric visits (no real help and, in fact, made me much worse after agreeing to prescribe Seroquel 25 mg, which I ignorantly asked for); two visits to a Naturopath and a visit to a Functional Medicine Specialist…
Does anyone have suggestions as to what I can say to my DME, Cardio or family doctor (the latter two have already signed me off) at my next visit? I'm discouraged that they just don't seem to want to listen and do not care if you have issues, even if your AHI is good…The Cardio prescribed 10 mg Bystolic, which I am concerned might actually be causing or exacerbating the "flutter”
After all those tests, 29 doctors and specialists in 4 countries plus the new cardiologist have told you your heart flutters are not concerning, maybe it’s time to listen.

Sleep breathing events can certainly cause our hearts to feel like they “flutter”, it’s a normal cardiac response to stress and most often is completely benign. Anxiety can also cause our hearts to feel like they “flutter”, once again a normal response.

I’m sorry you don’t feel listened to by your docs and hope you can find someone to help you out. You mentioned 3 appointments with a psych doc, perhaps it would be helpful to find a good mental health professional who you trust to see more than 3 times. I’m not saying it’s all in your head, but since anxiety can cause heart symptoms and you only mention 3 psych appointments it might be worthwhile to try. You might want to find someone who does cognitive behavioral therapy and/ or biofeedback.

Lastly I caution you on changing the meds on your own (especially the heart or psych meds). I hope you can find the help you need!

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by jsavinmedicine » Sun Jul 16, 2023 5:18 pm

I used to have flutters like these. Before my sleep apnea diagnosis and treatment, and for the first three years of CPAP treatment. I also had a small heart attack before, which is what started my sleep apnea diagnosis, and after much testing, they found that my heart attack was caused by vascular spasms, which is more rare. Usually it’s blocked arteries that cause a heart attack. I’m a vegetarian, and my cholesterol level is low, and so when the doctor did the test where they go in through your thigh, and look with the mini camera, he said my arteries were good with very little blockages. Then they did some other tests and by giving me this medication during a test found out that I had something called vascular spasms.

This is something that causes your arteries or veins to kink up. He told me sort of like twisting a hose and the water stops then you and untwist the hose and the water flows again. He told me it wasn’t well understood why it happened yet, usually it happened to heavy, smokers or longtime cocaine users, and I never smoked or used cocaine so he said I was just one of those mystery cases that they didn’t know why. I was prescribed metoprolol as he said that was his favorite for vascular spasms and preventing them but then they stopped making metoprolol and so he switched me to propanolol 40 mg twice a day and the propanolol worked really well.

I had about five vascular spasm incidents between when I was diagnosed and the next 2 to 3 years none of them caused a heart attack or made me need to go to a hospital, but I would get the flutters and then I could tell they were ramping up, because I would get this pain and this Horrible weird tightness in my chest and it would be like everything was freezing for a minute or two and then I guess it would unkink its self and you could just feel it release like a button was pushed and then I will go back to feeling normal, although with a ton of adrenaline going through my system, because I knew I almost had a heart attack again.

Those flutters that I would feel would come when I was resting or right before I fell asleep, or right after falling asleep. This is one of the key signs that your cardiac issue might be vascular spasms. Vascular spasms tend to come randomly, and usually always when people are resting, whereas heart, pain or chest pain from blocked arteries comes after exertion like after walking up the stairs, or after doing some exercise. I never had the flutter after exertion or exercise. the doctor said they weren’t dangerous on their own, but they might be a sign that a spasm was brewing -this was about 10 years ago. I don’t know if they’ve learned anymore about vascular spasm since then, but also anxiety medicine, and the benzodiazepines help with vascular spasms, too, and help prevent them.

Sense several years of good CPAP therapy, consistent beta blockers, and anxiety meds, the flutters have stopped, and I have not had a vascular spasm incident either.

If you’re still having them, you might look for a cardiologist who specializes in vascular spasms and go talk with them. It sounds like you’re on similar medicines to me with the 40 mg of propanolol and Klonopin - the amount of Clonopin you’re on is pretty low and is safe as far as slowing your breathing at night.

It’s so frustrating when you have a medical problem that the doctors can’t pin down, I understand the sort of internal panic associated with it.

One thing I did that helped me when I was adjusting doses - I had a daily log, and I wrote down like everything for that day that I thought was different. If there was anything different and I would write down exactly what medicines I took and what doses I took and then I would keep track of how I felt in the morning or at night or if I had a flutter I wrote down when the flutter happened and how I felt, and then I just took the logbook with me to my doctors appointments, and I gave the doctor a lot of info to help me work it all out. I hope your flutters are going, but if you’re still having them, maybe this info will help.

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Re: How to deal with extreme anxiety over a "flutter" that is intermittent or always there but occulted

Post by Rubicon » Mon Jul 17, 2023 1:37 am

Put your data on SleepHQ as was previously requested.
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.