Forgetting to breathe sensation loss in CFS?

[dlap4]

Hi.

Was just wondering if anyone gets this symptom with CFS. It's common in all the subsets of POTS/OI I find. I will post a few excerpts from a POTS support group forum about it. If it rings a bell then I'd be interested in finding out how common it is in CFS and how frequently people get it. This is a specific breathing issue that seems nerve/brain related and not mechanical, so it may be hard to understand but maybe these excerpts will help.

http://forums.dinet.org/index.php?/...t-how-to-breathe-with-pots/page-3#entry203667

It is almost like the impulse to breath that one would usually feel is gone. I get no sensation when I breath in or out like I used to. There is no pleasure or drive or sensation there to tell me to breathe. So when I am consciously focused on my breathing its almost like I could "forget" to breathe. Is this what you guys experienced?

I have gotten this a few times before (I think) but nothing for this long and I never felt this weak and sick before. I feel very ill and this sensation (or lack of one) is proving very very disturbing when I try to get to sleep. I keep waking up after a few seconds of dreaming with a smothering/suffocating feeling. In the day I can try and distract myself from it a lot. The evenings I can't very well and then at night it is impossible to ignore and I get very little sleep. The few times I've gotten sleep the last few days were when I fell asleep due to exhaustion. I can't sleep normally anymore.

http://forums.dinet.org/index.php?/...-forget-how-to-breathe-with-pots/#entry194700

I know that I have read about people having breathing problems with POTS, I am just wondering what kind of breathing problems? Is it normal to feel like one has completely forgot how to breathe? Is it possible to stop breathing with POTS/due to POTS?
I keep feeling like I cannot remember how to breathe and have to manually inhale and exhale, which gets me all messed up because I either breathe too fast or too slow. My lungs feel like they don't know how to expand enough to get the air that I do inhale. It's such a strange, scary sensation. It's much worse when I am lying down, and I notice my hr drops to high 40's, low 50's, and my bp the other night when I checked while this was happening, was 93/55.
Is this a normal POTS thing? It has gotten worse over the past couple of weeks. I have felt like I should probably go to the ER, but then again, they would probably say it's anxiety and send me home with an outrageous bill!

http://forums.dinet.org/index.php?/topic/6949-forgetting-to-breath/#entry63859

I woke up with a jump at 4am today, and I felt like I had not been breathing. I had to sit up in bed and take very deep breaths for a long time. Then I was scared to fall back asleep. I can tell that this is not a structural problem with my lungs because I am capable of breathing. It just seems that my body isforgettingto breath or something!! I am going to TRY to get ahold of Dr. Low this week... hopefully he will have some tips.

If anyone has experienced this and can give me some pointers, please do. Thanks so much!!

http://forums.dinet.org/index.php?/topic/6949-forgetting-to-breath/#entry63867

I have nonstop problems with air hunger and also with "forgetting" tobreathe. I also have what I'd call restriction in my chest, which makes it feel like my lungs cannot expand. This all began when my POTS began. There is no test that picks up any abnormalities with my lungs or otherwise, so I have been dealing with it on my own for the last 2 years.

Sadly, nothing really helps, except sometimes if I lay down I feel my breathing is slower and more relaxed. But it still feels restricted. For you, this may be an episodic thing -- maybe it will come during times of stress or when you're having a flareup of symptoms.

http://forums.dinet.org/index.php?/topic/23531-weird-breathing-symptom/#entry219832

Hey everybody. I got so many responses on my eye problems I thought I would throw this out there too. Since last summer I have had a hard time breathing on and off. Some days it feels like my body is not breathing on its own. Other times I literally feel suffocated. This is unrelated to bp or heart rate.

http://forums.dinet.org/index.php?/topic/23137-trouble-breathing-anyone/#entry215946

Difficulty with breathing is my scariest symptom. This is not a problem with obstruction or heart/lung functioning (although early on I was convinced it hadto be heart/lung related.). I suspect this is a central nervous system issue with two specific symptoms:
1. I will forgettobreathe, realize it, then have to consciously breathe for a period of time (usually 1-30 minutes) where the majority of my thought process is focused on taking my next breath.
2. I feel I'm not getting enough oxygen when I breathe. Although my pulse odometer shows normal readings (as mentioned above) my body feels starved for oxygen. This feels like I'm dying and I have to keep telling myself, "this is just Dysautonomia. I'm not dying. I will be ok.

I find this happens when either I'm having a bad reaction to a medicine or chemical exposure or when I'm having a particularly bad sympathetic nervous system crash.

http://forums.dinet.org/index.php?/topic/24242-change-in-bodily-sensation/#entry227098

Yep. Every day/week brings fun new groups of odd bodily sensations for me to deal with: difficulty swallowing and breathing (both 'forgetting' to breathe & a constricted feeling), heart palpitations, adrenaline surges, numbness, electrical vibrations, the air touching my skin burns, I can't tell hot from cold ... and one of the weirdest: feeling like my cell's on vibrate and I'm sitting on it. I can assure you it's not as enjoyable as it sounds.

 

[lansbergen]

I would not call it forgeting to breath. One does not have to think to breath. It is an automatic process and yes that process was severely disturb when I was at my worst. I had to think hard to keep breathing. My lower lung lobs did not work anymore and the upper lobs barely worked. It is not just brain related. The intercostal muscles and the nerves that control them were inflamed and did not work well enough.

 

[Martial]

I had the sensations of being too exhausted to breathe before, one time even my heart beat felt too tiring and I had this urge to tell it to stop beating.. I know that last part sounds bizarre but it is what it felt like lol.

 

[alex3619]

I forget to breath sometimes. Only once was it a serious problem. I did not answer the poll as I don't know the answer. Sometimes. I usually don't really notice and then pretty well always forget about it. The only time it was ongoing and serious was during a severe respiratory infection in the late 90s.

 

[xchocoholic]

I actually had to force air in and out of my lungs ONCE when I had a 2 hour seizure. Otherwise sob always happens when I've been been standing too long. I have OH and POTS. I get petite mals too with pots so the connection for me could be in the brain.

These symptoms always resolves after laying down. But it typically takes an hour for my lungs to relax enough so that breathing feels effortless.

Fwiw. Medical personnel couldn't understand what I was doing so I was told to stop. They kept saying that I was hyperventilating despite the fact that it resolved on it's own within seconds of forced breathing. I couldn't think or speak clearly enough to explain it at the time.

Sob may be a better description / dx for the poll.

Tc .. x

 

[Tired of being sick]

It is more like losing your breathing rhythm
when your bpm is all over the place so will your breathing

Best way I can describe it is your breath stutters as if you were thrown into an ice cold swimming pool

or when when you were child and lost your breathing rhythm from crying out loud

And yes my CNS forgets to send signal to breath while asleep (central sleep apnea)56 episodes per hour

 

[misskatniss]

Didn´t know that others too were suffering from this, it is so scary!

 

[acouchy]

My experience is more like my breathing stops being automatic. I consciously have to tell myself when to breathe. Definitely makes me feel a little panicky. I have had an attack before bed at least once before and I was so scared about falling asleep. I eventually did and I woke up alright. Now I try not to panick and drink a big glass of water and get some rest.

 

[misskatniss]

exacly like mine @acouchy and it was before going to sleep too and I also panicked about it. Do not know what was the cause, but glad it happens not too often...

 

[acouchy]

exacly like mine @acouchy and it was before going to sleep too and I also panicked about it. Do not know what was the cause, but glad it happens not too often...

I am glad too. Mine seem to occur once a month or less. I feel like it must be some sort of autonomic nervous system issue. Just another freaky symptom on my long list of mysterious things.

 

[misskatniss]

Yes, @acouchy same for me. Unfortunately I did not manage to get why it occured, I only got the same idea like you after that must be some of that autonomic nervous system stuff. And I had other rare symptoms too, then. If I get a clue about what it causes in me, I will keep you posted, just in case...

 

[Forbin]

In the first few months of illness, I experienced this feeling. Basically, I wouldn't inhale until the point at which I had to gasp. It wasn't constant and my GP attributed it to "anxiety."

Many years later, I thought that my un-refreshing sleep might be being caused by sleep apnea. I decided to videotape myself while sleeping to see if I could detect anything.

The result was interesting. The force of my inhalation and exhalation rose and fell periodically. At its peak, my breathing was extremely forceful - but, at its ebb, I stopped breathing altogether for between 30 and 60 seconds.

The cycle repeated every few minutes, occurring in "spells" throughout the night, but it was not ever-present.

I reported this to my cardiologist the next time I saw him. He said it sounded like Cheyne-Stokes respiration, but he did not seem particularly concerned since I clearly did not have heart failure (one serious cause of Cheyne-Stokes respiration).

But there are other causes of this type of breathing, such as damage to the respiratory centers of the brain, possibly due to brain tumors, strokes, traumatic brain injury and toxic encephalopathy caused by exposure to solvents. Otherwise healthy people can also experience this type of breathing while sleeping at high altitude.

I then had a sleep study done (where I was only able to sleep for a couple of hours) and the report indicated a couple of minor episodes of "central sleep apnea." Unfortunately, my sleep doctor moved away (without telling me) between the time I first saw him and when I returned to hear the results. His replacement didn't seem too concerned with the findings and asserted that there wasn't much to be done for central sleep apnea (I think this may have changed since then).

Turns out that "central sleep apnea syndrome" is also the term used when Cheyne-Stokes respiration occurs when you are asleep. Cheyne-Stokes can also occur when you are awake - which may be what I initially experienced (or maybe not).

All this does make me suspicious of a possible connection between ME/CFS, central sleep apnea and Cheyne-Stokes respiration. I would not be surprised if, among its other effects on the brain, ME/CFS impacts the respiration centers in some patients.


Breathing amplitude over time in Cheyne-Stokes respiration:

http://en.wikipedia.org/wiki/Cheyne–Stokes_respiration

 

[Gingergrrl]

Interesting thread and I have not experienced a feeling of forgetting to breath but when my CFS symptoms all started, I had extreme tachycardia during REM sleep that would wake me up with a HR anywhere from the 120's to the 170's with the highest at 177 (recorded on HR monitor.) When it would occur, I would have significant trouble breathing, feel confused, and my hands would be numb.

Has this happened to anyone else? I was diagnosed at that time with IST (inappropriate sinus tachycardia.) Once I started a beta blocker, this did not occur again. At present, I am off of the beta blocker and it is not happening (and I hate to even write this b/c I may jinx myself!) I later wondered about Central Sleep Apnea but had a sleep study at that time and was never told that it occurred. I asked doctors about it later and they said that the sleep study would have picked it up. I have weird autonomic instability as part of my CFS and the way it presents itself keeps changing.

 

[dlap4]

I am glad too. Mine seem to occur once a month or less. I feel like it must be some sort of autonomic nervous system issue. Just another freaky symptom on my long list of mysterious things.

Yeah it seems to be related to autonomic issues. I had POTS and other autonomic problems and got this breathing issue as well the last 2 years. Whatever brain dysfunction causes the autonomic issues seems to cause other strange issues with things that should be "automatic". I had issues with even basic things like awareness of body position (where your body parts are in space should be a basic "automatic" sensation.) This is all among many other issues with things that should be "automatic" disappearing the last few years.

If anyone else feels like sharing in this thread anything else related to loss of "automatic" sensation/impulse then I'd like to hear it. It's not just breathing it effects. I've heard from those on DINET forums and in my own experience that you can lose far more.

 

[Keela Too]

Interesting thought. I find I breath more slowly now than I used to.... and can sometimes have long gaps before taking another breath... but it's not something distressing.

Interestingly, the thing that finally brought ME to a crunch point for me was a gynae operation. I remember the nurses coming over to me often and reminding me to take deep breaths - or indeed reminding me to breathe! I also remember hearing that they wouldn't let me go back up to the ward until my breathing had stabilised. I slept way more than expected once back on ward too - I knew because I could hear the nurses talking about it.

Just interesting.... but don't know what it means! The incident was never mentioned to me afterwards.

 

[misskatniss]

Great post @Forbin thank you!