Cheynne Stokes Respiration

[Billymadison420]

I am calling my cardiologist this morning. Should I be concerned?

https://www.dropbox.com/s/iyojpj0hi5krt ... n.jpg?dl=0

During the time flagged in green I had just taken an Ambien. My sleep problems have become so severe that I am going on disability. I cannot function during the daytime.

[Billymadison420]

Here is a more zoomed-out view. It was after going to the bathroom. I often have sleep/wake/transitional Centrals. I called my pulmonologist's office. Waiting to hear back.

https://www.dropbox.com/s/nyr4i238g4iri ... M.png?dl=0

[Miss Emerita]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

For what it's worth, the flagged breathing looks to me like garden-variety periodic breathing, possibly set off by some arousal breathing. Two things to be aware of.

Cheynes-Stokes breathing is a subcategory of periodic breathing. I don't know why these stretches in the graphs are labelled as they are, but don't assume that something labelled "C-S" is actually C-S. The notable characteristic of C-S breathing is a sinusoid pattern to the waxing and waning in between CAs, which your snippet does not exhibit.

Also, it might be helpful to you to understand the mechanism behind ordinary periodic breathing. Some deeper breaths, especially when we're on PAP, can wash out enough CO2 to delay the "breathe-now" neurochemical signal from the brain. If the pause is 10 seconds or longer, you've got a CA flag. Then after the CA, you may breathe deeply to recover from the pause, which can start the whole cycle over again. Eventually your breathing settles down and the periodic breathing episode ends.

[Billymadison420]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

Thanks for the response. I appreciate it!

I have been to doctors at the University Of Pennsylvania. Jefferson Hospital. Their sleep centers. I have talked to a variety of NeuroPsychs as well. From my PSG/MSLT they cannot infer why I am this disabled by my exhaustion. The only other pulmonologist I've talked to still thinks I have N/IH. But with that, there is no solution. I've been on all the medications they use to treat it other than Xyrem/Xywav. Being exhausted and on amphetamines is no way to live life.

I've been to Psychs. I've been on a million meds.

I am screwed. I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING. It's a tortured existence and I an shocked that no amount of doctors have been able to help me.

I am 35 and my life is over.

[Julie]

Sure it's probably a silly question, but have you ever been to Africa... been bitten by a Tse-se fly? Been asked that before?

[lynninnj]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

Thanks for the response. I appreciate it!

I have been to doctors at the University Of Pennsylvania. Jefferson Hospital. Their sleep centers. I have talked to a variety of NeuroPsychs as well. From my PSG/MSLT they cannot infer why I am this disabled by my exhaustion. The only other pulmonologist I've talked to still thinks I have N/IH. But with that, there is no solution. I've been on all the medications they use to treat it other than Xyrem/Xywav. Being exhausted and on amphetamines is no way to live life.

I've been to Psychs. I've been on a million meds.

I am screwed. I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING.

I am 35 and my life is over.

Your life may be miserable at the moment but far from over.

Somebody somewhere has an answer for you.

Keep looking. Don’t give up.

[Billymadison420]

Sure it's probably a silly question, but have you ever been to Africa... been bitten by a Tse-se fly? Been asked that before?

Hi Julie <3

Never have been to Africa. I've had a litany of blood tests from my PCP. They can't seem to figure it out.

[Billymadison420]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

Thanks for the response. I appreciate it!

I have been to doctors at the University Of Pennsylvania. Jefferson Hospital. Their sleep centers. I have talked to a variety of NeuroPsychs as well. From my PSG/MSLT they cannot infer why I am this disabled by my exhaustion. The only other pulmonologist I've talked to still thinks I have N/IH. But with that, there is no solution. I've been on all the medications they use to treat it other than Xyrem/Xywav. Being exhausted and on amphetamines is no way to live life.

I've been to Psychs. I've been on a million meds.

I am screwed. I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING.

I am 35 and my life is over.

Your life may be miserable at the moment but far from over.

Somebody somewhere has an answer for you.

Keep looking. Don’t give up.

Hi Lynn <3

I wish I believed that. But when the best experts in the world can't figure out how to help, what hope is there?

[lynninnj]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

Thanks for the response. I appreciate it!

I have been to doctors at the University Of Pennsylvania. Jefferson Hospital. Their sleep centers. I have talked to a variety of NeuroPsychs as well. From my PSG/MSLT they cannot infer why I am this disabled by my exhaustion. The only other pulmonologist I've talked to still thinks I have N/IH. But with that, there is no solution. I've been on all the medications they use to treat it other than Xyrem/Xywav. Being exhausted and on amphetamines is no way to live life.

I've been to Psychs. I've been on a million meds.

I am screwed. I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING.

I am 35 and my life is over.

Your life may be miserable at the moment but far from over.

Somebody somewhere has an answer for you.

Keep looking. Don’t give up.

Hi Lynn <3

I wish I believed that. But when the best experts in the world can't figure out how to help, what hope is there?

Some of our greatest discoveries were by an average person and not top of thier field.

I’m sorry I can’t be more helpful.

Do you have the same sleeping issues when away from home ( like in a hotel?)

[Billymadison420]

It's certainly a good idea to talk with your cardiologist and your pulmonologist. While you'll want to discuss the flagged breathing, I think the bigger issue is that your sleep problems are causing you to go onto disability. Please be clear with them that things are that bad. You need more help than you're getting.

Thanks for the response. I appreciate it!

I have been to doctors at the University Of Pennsylvania. Jefferson Hospital. Their sleep centers. I have talked to a variety of NeuroPsychs as well. From my PSG/MSLT they cannot infer why I am this disabled by my exhaustion. The only other pulmonologist I've talked to still thinks I have N/IH. But with that, there is no solution. I've been on all the medications they use to treat it other than Xyrem/Xywav. Being exhausted and on amphetamines is no way to live life.

I've been to Psychs. I've been on a million meds.

I am screwed. I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING.

I am 35 and my life is over.

Your life may be miserable at the moment but far from over.

Somebody somewhere has an answer for you.

Keep looking. Don’t give up.

Hi Lynn <3

I wish I believed that. But when the best experts in the world can't figure out how to help, what hope is there?

Some of our greatest discoveries were by an average person and not top of thier field.

I’m sorry I can’t be more helpful.

Do you have the same sleeping issues when away from home ( like in a hotel?)

I know you are trying to help lynn. I am very grateful for that. It's not lost on me even in my current state.

Yes even when I sleep somewhere else it's just as bad. Like I mentioned even before I had Tinnitus. I have plenty of long sleep times as a child. My normal sleep time is usually nine or 10 hours per night. And I would have many nights where I would be 13 to 14 hours of sleep a night. That's been that way for me since I was probably 15. I would often need multiple naps during the day to get through the day. It's just always been that way.

Now that I have the tinnitus, my sleep quality at night is extremely poor. And I'm unable to nap during the day. Sleep is never refreshing for me. So I fall asleep while I drive. I fell asleep during the day while I'm working. I fall asleep in the middle of conversations. I'm fighting sleep all day.

My tests for narcolepsy and idiopathic hypersomnia came up empty. Most of the doctors won't even entertain that diagnoses at this point. And the ones that do entertain it tell me that there isn't really much that they can do.

So right now I am facing in existence, where I am tired, sleep, deprived, irritable, angry, cognitively, confused, and listening to a loud piercing tone in my head 24 seven. There's no relief. There's no escape. All of this would be much easier to deal with if I had a good night of sleep, and could stay awake during the day like a normal person. The tinnitus would not be an issue for me anymore. It's not something that during the day is a major deal to me anymore. Its threat to me now is that it causes me not to sleep. Not because it makes me angry, scared of claustrophobic anymore.

There is nothing at the doctors can do about the tinnitus to give me my peace back. And there's nothing that the doctors can seem to do about my non-refreshing sleep either.

I'm losing my wonderful job. I can't help my wife around the house. I can barely walk my dogs down the street. I can't help my dining mother. It's horrible. I could never imagine at 35 I would become so severely disabled.

[palerider]

I am calling my cardiologist this morning. Should I be concerned?

https://www.dropbox.com/s/iyojpj0hi5krt ... n.jpg?dl=0

No.

Now, if your entire night looked like THIS:



Then yes, call your cardiologist IMMEDIATELY. (That was from my late brother, who after I saw that, he went to his cardiologist, and was diagnosed with severe heart failure with LVEF of 17%)

[Billymadison420]

I am calling my cardiologist this morning. Should I be concerned?

https://www.dropbox.com/s/iyojpj0hi5krt ... n.jpg?dl=0

No.

Now, if your entire night looked like THIS:



Then yes, call your cardiologist IMMEDIATELY. (That was from my late brother, who after I saw that, he went to his cardiologist, and was diagnosed with severe heart failure with LVEF of 17%)

Thank you pale rider. I’m so sorry to hear about your brother. Condolences.

[palerider]

Thank you pale rider. I’m so sorry to hear about your brother. Condolences.

He got better after that and was around for a few more years, so finding that pattern of continuous, TRUE CSR, led directly to his diagnosis and improvement.

[ozij]

I am housebound. Disabled. Unable to drive short distances. Sleep is never refreshing. Naps aren't refreshing. It's awful. I do not know where else to turn. It's awful. Getting Tinnitus 18 months was the tipping point for all of this. Can't sleep with it. It's not a little ringing that can be covered my a fan. I can hear it over EVERYTHING. It's a tortured existence and I an shocked that no amount of doctors have been able to help me.

Almost as shocked at what's happening to your mother who is dying of ALS? A disease that is diabling her, keeping her from doing things she loved, a disease that no amount of doctors can cure?

I could be very very wrong, but I'm thinking that nights plagued by tinitus - horrible as they are - may be preferable to you than nights plagued by thoughts of what is happening, and what is going to happen to your mom as her disease progresses.

You're in a panic Billy, really jumping around doctors and diagnoses and therapists without sticking to any one of them. It's as though whenever there's a reasonable diagnosis or therapeutic plan for whatever ails you something in you pops up and say "no, that's not the issue".

If I were you, Billy, I would ask my mom's doctors if they know of a support group for people whose beloved ones were diagnosed with ALS. And I would stay in that group till after my mom's funeral. If you can't drive to group meetings, find a group that works in zoom. And stick to it religously, not letting anything, and I mean absolutely anything distract you from it. And promise yourself that you will bring nothing to that group but your feeling about your mom's illness. Promise yourself you will not use that group to discuss any of your many physical problems. Because you need that help as desperately as you need help with all your other issues.

[Billymadison420]

I could be very very wrong, but I'm thinking that nights plagued by tinitus - horrible as they are - may be preferable to you than nights plagued by thoughts of what is happening, and what is going to happen to your mom as her disease progresses.

You're in a panic Billy, really jumping around doctors and diagnoses and therapists without sticking to any one of them. It's as though whenever there's a reasonable diagnosis or therapeutic plan for whatever ails you something in you pops up and say "no, that's not the issue".

Hey Ozij, thanks for writing. You could be very right. You would not be the first person in my life to suggest this as an exact possibility. I absolutely could be having some sort of traumatic response to it. The question is, how do I stop the traumatic response. I've been going to one therapist to deal with the specific loss of my mother (only 2 sessions). And then I've gone to other psychologists that think I'm bipolar, manic depressive, extremely depressed. You name it. I get on the medications that they suggest, and for me, the net benefit is very little. I just end up feeling more tired, and more sleepy. Which is more disabling to me. So I get off of them quickly.

I've developed this major fear of being disabled. I do think it is somewhat related to my mom, although the fear pre-dated her illness as well. I do have existing hypersomnia and long sleep times. But I also do think that this even with my mom dying has kicked both into high gear. I guess you, as well as my family, is suggesting if process that more than perhaps my other issues may relent some.

Right now I am in between going on disability and trying my best to keep this job. I work from home, although somewhat soon I will need to drive some. Not much. But some. so I have to make it work somehow. I am, of course, driving my poor family nuts. I don't know if the recent development of my sleepiness issues becoming almost disabling is a natural progression of an underlying disorder or a traumatic response. I really don't know. You and my family think the latter.