Is it a common symptom to stop breathing?

[Nic]

I've had CFS for 12 years, and recently an old symptom has come up again. So I'm just wondering if anyone else stops breathing? It happens while I'm awake, usually when I'm calm and zoning out.
My breathing will just stop and I'll have to work kind of hard to get it started again. If it's been stopped for a while it feels like I've been punched in the lungs when I do get my breath back. If I take too long my body will hit the panic button and launch me into a panic attack, but at least it fixes the breathing.
Most of the time I can catch it early and "manually" control my breathing until it goes back to normal.

Probably worth noting that I'm not talking about breathlessness or "air hunger" (though I do experience that too), but literally my breathing stops for no apparent reason.

Has anyone else experienced this or is this just me being weird? I can't find any other people talking about it. It doesn't happen to me too often so I tend to just deal with it as it comes.

 

[Paw]

My tendency is similar -- though not as severe. I'll get it zoning out, or focusing on something as well. Lots of shallow breathing too. I have no idea if it's linked to this disease, but it sure don't seem helpful!

Do you have any autonomic neuropathies? I have apneas while sleeping (and use a CPAP) but 90% are central (non-obstructive). I think they're connected to my neuropathy. It's like my brain forgets how to instruct the body how and when to breathe.

 

[Hip]

but literally my breathing stops for no apparent reason.

You may like to explore the stories of JenB and jeff_w on Phoenix Rising: they found that their breathing would stop, and they could only restart it by holding their heads and neck in a certain position.

To cut a long story short, it seems that some ME/CFS patients have spinal issues such as craniocervical instability (CCI), atlantoaxial instability (AAI), and/or Chiari malformation, which can cause brainstem compression, which in turn may inhibit the signals sent along the nerves which control the breathing muscles.

But not only that, it seems that in jeff_w's case, the CCI/AAI and brainstem compression was actually causing his ME/CFS, POTS and MCAS.

They have both had surgery to correct the CCI/AAI. After surgery, jeff_w is now completely cured of his ME/CFS, POTS and MCAS as well as breathing issues! So his entire illness was seemed to be caused by the CCI/AAI.

JenB is currently undergoing surgical treatment for CCI/AAI.

Because of jeff_w's remarkable recovery from ME/CFS, there is now a major interest on Phoenix Rising about the possibility that cases of ME/CFS may actually be caused by CCI/AAI. Thus a lot of patients have got themselves tested for CCI/AAI, and so far 90% were positive for CCI/AAI !!

See these threads:

https://forums.phoenixrising.me/index.php?threads/20-patients-now-found-positive-for-cci-aai-there-must-be-many-more.62893/

https://forums.phoenixrising.me/index.php?threads/jennifer-brea-i-have-craniocervical-and-atlantoaxial-instability.62164/

https://forums.phoenixrising.me/index.php?threads/tracking-cci-aai-mri-treatment-outcomes.62720/

https://forums.phoenixrising.me/index.php?threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/

 

[Nic]

Wow! Thanks! That's really helpful. This might be something I should introduce my doctor to. I'm really glad asking this led somewhere.

And I don't have any diagnosed autonomic neuropathies but who knows, my body does many weird things and I just go with it. Brain fog makes it hard to "fight for answers" so to speak.

 

[Hip]

Brain fog makes it hard to "fight for answers" so to speak.

Yes, tell me about it!

 

[dejurgen]

You may like to explore the stories of JenB and jeff_w on Phoenix Rising: they found that their breathing would stop, and they could only restart it by holding their heads and neck in a certain position.

When looking at wikipedia https://en.wikipedia.org/wiki/Spinal_stenosis:
"Spinal stenosis is an abnormal narrowing of the spinal canal or neural foramen that results in pressure on the spinal cord or nerve roots.[6] Symptoms may include pain, numbness, or weakness in the arms or legs.[1] Symptoms are typically gradual in onset and improve with bending forwards."

That does sound quite familiar too me.
Maybe of help: my first real flash of improvement came after I got increasing frequencies (several times a day) of short lived (seconds) leg paralysis (and on rare occasions arm paralysis). After that, a blocking and numbness traveled up along my back and spine. My legs experienced increased numbness already some time before. I also began to have troubles chewing food and swallowing it. The rate of progression made it darkening my future prospects.

When finally talking about it to my mother (I did not wanted to worry her but I knew my parents had experienced some of my symptoms in smaller amounts and learned to deal with it to some extend) she recognized one symptom of that list and said she did a certain type of neck mobilization / neck circulation exercise. She warned me to do it wright as doing it wrong can further block important nerves to the neck (so always ask advice to a physical therapist or doctor before trying this!).

When doing this exercise, I started to feel different in a hard to define way within a single day. It was faint and I have sensitive senses, but it was a weird and inexplicable change. So I continued doing this plus some small amount of body wide mobilization the following days. The results were amazing: within 2 weeks I managed to get from being able to walk 100 to 150 meters a day and that includes going from bed to bathroom to kitchen to being able to walk 900 or 1200 meters a day (don't recall out off my head, is written somewhere down) including going from bed to bathroom to kitchen. Also pain levels dropped dramatically such that I decided to stop taking pain drugs. My mind became clearer and feelings of happiness increased a lot such that it felt a dark cloud was lifted from my mind and I saw some sunshine again.

Unfortunately things after 2 weeks went slowly the other way again, even while keep doing this. Pain levels and mind fog increased a bit again, but remained a lot better then before. My mobility however slowly dropped to the original again. During the past three years I've been painstakingly trying to track what elements had to fall together to make this work again and with some success. I'm currently writing about this in my "Me current improvement" series on the forum. I'm still in the introduction phase that I deem needed for readers to get a better understanding but I hoped to add over 1 topic a week.

I long deemed this improvement to be due to better blood flow to the brain. Recently someone linked a publication that increased CBF pressure can be due to sines blocking blood flowing back adding to this idea. But both poor blood flow and sinus compression could be due to general brain compression too. And poor back flow of blood from the brain to the hart should increase CBF pressure IMO, so both problems could compound.

I also like to "hang" while sitting in a chair, banana shape style. It allows me to fend off brain fog and exhaustion longer while reading the internet. That's in line with "Symptoms are typically gradual in onset and improve with bending forwards."

Note: I have few mobility. Circulation and mobilization exercises may have quite a different effect on people with hyper-mobility. Hyper-mobility is one of the mentioned causes of CCI/AAI so further improving it may yield undesired effects. In such case consult even more a good PT.

 

[Hip]

Spinal stenosis is an abnormal narrowing of the spinal canal or neural foramen that results in pressure on the spinal cord or nerve roots

There are a set of conditions that affect the top of the spine, which can all cause ME/CFS-like conditions:

Cervical spinal stenosis — where the spinal canal becomes too narrow, which can put pressure on the nerves, leading to ME/CFS-like symptoms. Cervical spinal stenosis can be caused by a physical trauma to the spine (or just caused by general wear and tear). Surgical treatment of cervical spinal stenosis can lead to resolution of ME/CFS symptoms.1

Syringomyelia — a fluid-filled cyst which appears within the spinal cord, and compresses the spinal nerves, which may result in ME/CFS-like symptoms.1 A trauma to the spine can sometimes cause a syringomyelia to form some time later. Syringomyelia can be treated surgically.

Chiari malformation — where brain tissue is pushed into the spinal canal, due to a skull which is too small or misshapen and thus squeezes the brain and forces it downwards. This may cause ME/CFS-like symptoms, as well as multiple sclerosis-like or fibromyalgia-like symptom. Chiari is usually a congenital condition, but asymptomatic congenital Chiari can be worsened by a physical trauma such that symptoms may then appear.1Chiari malformation will not show up on a standard brain MRI. It requires an upright flexion-extension MRI to see it.1 Patients with Chiari malformation may also have craniocervical instability. Chiari malformation is sometimes found in Ehlers-Danlos syndrome. More info here.

Tethered cord — where spinal cord is "stuck" to a structure within the spine, such as dura, scar tissue from a previous operation, a bony spicule or even a tumor. This condition may cause ME/CFS-like symptoms. Tethered cord can be caused by physical trauma, or can be congenital. Tethered cord is often found in those with chiari malformation.

Craniocervical instability (CCI) — is a structural instability of the connection between skull and neck. This instability occurs where the skull meets the top C1 vertebra of the spine. CCI may lead to deformation or compression of the brainstem, upper spinal cord and cerebellum, which can then lead to ME/CFS-like symptoms. CCI can be caused by physical trauma or can be congenital. ME/CFS patient Jeff with POTS and MCAS found he was cured after corrective surgery for craniocervical instability; see his story here and on his website www.mechanicalbasis.org. Patients with craniocervical instability may also have Chiari malformation. More info on CCI here.

Atlantoaxial instability (AAI) — is a structural instability occurs between the C1 and C2 vertebra of the spine. AAI and CCI may occur together.

Out of the 20 or so ME/CFS patients so far tested on Phoenix Rising , 90% turn out to have CCI/AAI, which is an astounding figure!

 

[dejurgen]

Out of the 20 or so ME/CFS patients so far tested on Phoenix Rising , 90% turn out to have CCI/AAI, which is an astounding figure!

When thinking it over, that shouldn't be that surprising. I had got a gut feeling increased CBF has something to do with it. Then it popped up in my mind: a (National geographic?) documentary on the German WWII invention of the shaped charge and how they used it to bust bunkers.

They were according to the documentary the first to develop and successfully use a shaped charge to focus the blasting power of explosives towards a single point in order to dramatically increase the explosive power towards a single focal point, enabling to destroy fortified concrete structures thought to be impenetrable at that time. They used it to surprise there opponents and it helped enable them to wager their "Blitzkrieg" or lightning fast war, a new and unseen concept taking their enemies by surprise and speed allowing them to defeat far bigger armies.

Now such early shaped charge looked a bit like a hollow half sphere filled with explosives and focused most of its blasting power towards a point close to the center of what would be the full sphere. Similar shaped charges were later used by the Americans and Russians to develop the Bazooka and took the Germans by surprise destroying their previously near invulnerable tanks by focusing the blasting power of the explosion of a grenade towards a single point. A single soldier with a Bazooka now could yield a carry-able weapon that wouldn't have scratched the surface of the Germans armors if it had the same amount of explosive power in a conventional grenade.

I'll write all of this to demonstrate what focusing power such shaped charge can have. I first thought increased CBF pressure by x% just increased overall brain pressure by x%, resulting in an evenly spread compression of brain tissue by y%. Yet that somehow conflicted with the repeated attention to the brain stem seen in other ME/FM research and seen in these reports. I made the mistake to see the brain as a "near fluid" like structure, where compressive forces traverse equally throughout the fluid. Maybe a bit to much physic talks, but it helps in forming insight here!

Now looking at https://en.wikipedia.org/wiki/Brain-stem the brain does kinda look like something fitting in a (a bit more then) half dome shaped skull. CBF exerts forces upon both the skull and the brain. As the brain is (with some imagination) a sphere-ish objects that fits into a sphere-ish skull, and because Newtons (a very important physics law) law says that both forces must compensate each other, the forces on the brain must be compensated by the forces on the skull. As the brain fits inside the skull and is a bit smaller due to cavities filled with CBF, the forces on the brain must be compensated by a smaller surface area then the same forces are divided over the large skull area. Result: The brain sees a little bit higher compressive forces then the skull.

Now do the same over with the brain-stem. With quite a bit of abstraction it can be seen as a small sphere fitting in the bigger sphere of the brain. Result: quite a large concentration of forces, resulting in a multiplication of the compressive forces at the brain-stem.
=> Focal concentration of increased CBF pressure at some points of the brain IMO!!!!!

My 3D-visualisation would place the focal point of compressive forces somewhere around the brown-white and green-blue interface on the picture in the link. I see that that is near but clearly above the brain-stem, consisting of green-blue (midbrain), red (pons) and purple (medulla) part of the brain.
Wikipedia: "In the human brain the brainstem includes the midbrain, and the pons and medulla oblongata of the hindbrain."

If my physical intuition of the focal point (in fact zone as the shape is not perfect) is correct enough, there is a zone with very high compressive forces just on top of the brain-stem. One can say that "misses" the brain stem itself. But the many possible causes Hip nicely summed up in the big blue cadre point all to forces acting on the brain stem just from below the brain-stem. Combine both and we have strong forces just on top acting downward and strong forces just below acting upwards on the brainstem, effectively squeezing the brain-stem a whole lot.

=> IF my physical intuition is wright, both the mentioned CCI/AAI problems and increased CBF pressure (as most ME/FM seem to have to a large degree according to recent research) seem to combine to a sum quite a big bigger then their individual parts. This would be in line with:

"I initially thought that I had developed CCI/AAI after developing ME/CFS. Reason being, my overt CCI/AAI symptoms (bobblehead, neck pain) didn't emerge until years into my severe ME... ...that would be consistent with my own timeline as to the appearance of neck-related symptoms. But Dr. Gilete's observation has no bearing on whether or not CCI/AAI is the cause of ME. "

Written by Jeff_w, one of the original people discovering this remarkable recovery Hip mentions and is told in https://forums.phoenixrising.me/index.php?threads/20-patients-now-found-positive-for-cci-aai-there-must-be-many-more.62893/page-2

An initial malformation of this cranial structure could be exposed by an increase in CBF pressure leading to the "shaped charge focal zone". In other posts I wrote about the possibility that IMO poor blood re-flow from the brain to the hart could cause increased CBF pressure. And such (temporary) worsening of blood re-flow could be caused by a strong infectious disease or a situation strongly increasing oxidative stress. These can increase trombocites, kill NO needed for vassodilation, making RBC less flexible decreasing blood flow... depending on the exact cause.

Also https://www.healthrising.org/forums/threads/the-link-between-idiopathic-intracranial-hypertension-fibromyalgia-and-chronic-fatigue-syndrome.6101/#post-34642 and probably https://www.healthrising.org/forums/threads/fms-and-spinal-fluid-pressure-dysregulation.5831/ (@Cort: is it the same link, merge posts?)
point to big sines potentially blocking blood re-flow from brain to the hart as a cause of increased CBF. That is a likewise other blood-flow related mechanism to increase CBF.

Whiplash dislocating some of the bony stuff in the skull could trigger ME/FM if pre-existing increased oxidative stress or obstructive sines were present. And the damage of the mechanical shock of the spine on the brain may temporary increase local brain inflammation as well.

It would also help explain the overlap between vulnerability towards ME/FM and migraines.

This whole "focal compressive force" hypothesis could be (relatively) easy verified or denounced by a joint team of doctors with some good idea on brain tissue mechanical properties and engineers with good 3D finite element modeling skills. The latter should not be hard to find. Would be a nice NIH funding proposal . Having any relations Cort?

 

[Paw]

This whole "focal compressive force" hypothesis could be (relatively) easy verified or denounced

You make sense -- and it seems to me, really, the question isn't whether there's a focused force, but the extent of it.

Hip and you have pointed me toward a lot of reading, which I'll get started on. Thanks. I have many reasons to suspect this syndrome might apply to me, including long-term base-of-skull symptoms, and the fact that I'm likely in the EDS camp (testing positive on Beighton). Do you happen to know of any good diaries tracking the best ways to present this stuff to doctors, so that they might take it seriously enough to order tests? My PCP already agreed I might have some EDS, but said there was no good reason to chase down a diagnosis, since it wouldn't impact my existing treatment or management.

I paid for my own brain MRI a few years back -- suspecting MS -- but now I'm super curious what a stem MRI would reveal. Would be super nice if insurance covered it.

 

[dejurgen]

the question isn't whether there's a focused force, but the extent of it.

I would make a *very* rough guess that the spot on top of the brainstem could see about 2 to 3 times higher pressure due to increased CBF pressure than the top side of the brain. The brainstem might be worse IF this pressure shifts this zone a bit to the front, causing - edit shear - like forces and complex pressure and tension distributions that could spike higher.

Strong differences in local pressure and tension should also be able to fold (like in largely blocking) many blood vessels in that region while puting a lot of strain pulling on other sections of blood vessels.

But it would require a mechanical engineer and one that has experience in modeling soft tissue like materials to make a far better guess than mine. Yet, when material properties were known and when was known what type of tissue is where in the brain then it should be not that hard to do the 3D finite element modeling.

Yesterday I also thought about the prefrontal cortex, another zone that is implicated a lot in ME if I recall correct. It is not only encapsulated in the top and front dome, but also in the skull plate between brain and nose/airways. So it sits in it's own dome that looks a bit like a C shape and hence has it's own focal pressure zone. That would make sense too. I would estimate it to be a bit less intense then the zone on top of the brainstem.

This "prefrontal dome" could also help explain why migraine sufferers and we often get headache in that zone.

I also wonder if there would be a difference in mechanical properties between grey and white brain matter. If so, changes seen in ME and FM might be adaptations to better support increased mechanical forces and would allign with these focal zones.

Does anyone known if the biggest changes happen to be on top of the brainstem, in the brainstem and near the "center" of the C-shaped frontal dome?

I'll pass on any question regarding to EDS.

 

[Farmgirl]

I've had CFS for 12 years, and recently an old symptom has come up again. So I'm just wondering if anyone else stops breathing? It happens while I'm awake, usually when I'm calm and zoning out.
My breathing will just stop and I'll have to work kind of hard to get it started again. If it's been stopped for a while it feels like I've been punched in the lungs when I do get my breath back. If I take too long my body will hit the panic button and launch me into a panic attack, but at least it fixes the breathing.
Most of the time I can catch it early and "manually" control my breathing until it goes back to normal.

Probably worth noting that I'm not talking about breathlessness or "air hunger" (though I do experience that too), but literally my breathing stops for no apparent reason.

Has anyone else experienced this or is this just me being weird? I can't find any other people talking about it. It doesn't happen to me too often so I tend to just deal with it as it comes.

@Nic
Hi, have you gotten help, Nic?

Have you read Dr. Vanelzakker's new study on ME/CFS & brainstem
issues? It recently came out.

January 10, 2019 Frontiers in Neurology

This is why we need more medical research and guidance. I am so proud of all the souls who advocate for us!

 

[Nic]

@Farmgirl
I see my Dr next week. I think I'm going to print something out for him and ask him to look over it. It's a lot of information to process! But I see him every 3 weeks for B12 injections anyway so I can chip away at the issue with him. He tends to be hesitant with new info and doesn't like doing things that he thinks aren't necessary so we'll see.

I'll definitely have to read through that in sections later, it's huge! But skimming it, it seems like a good step forward. Making sure research stays on track

 

[Farmgirl]

@Farmgirl
I see my Dr next week. I think I'm going to print something out for him and ask him to look over it. It's a lot of information to process! But I see him every 3 weeks for B12 injections anyway so I can chip away at the issue with him. He tends to be hesitant with new info and doesn't like doing things that he thinks aren't necessary so we'll see.

I'll definitely have to read through that in sections later, it's huge! But skimming it, it seems like a good step forward. Making sure research stays on track

@Nic Great move, Nic!
Not being able to breath, even if it is temporary, is not normal.

Problem for me has been being able to "catch" the symptoms so a doctor can see. When I am in PEM I am not likely to go anywhere.

You might think about some sort of way to record your vitals...there are so many devices out there now, if you can afford them. I have a new BP cuff and it keeps a record of my BP issues so there is no "proving" I have to do when I tell my doctor about it. Something to consider.

Nic, (and others) remember, you are paying physicians to help you.

I do have some breathing issues when I allow myself to end up in a bad PEM(just can't seem to get enough air) and did have times when I stopped breathing at night, but going off gluten fixed that. Weird, huh?

You might also look into Jen Brea's recent posts on her issues with her breathing stopping. She just had surgery for it.

Hoping for a good report!!

Be strong and we will try to be strong with you!

 

[dejurgen]

I do have some breathing issues when I allow myself to end up in a bad PEM(just can't seem to get enough air) and did have times when I stopped breathing at night, but going off gluten fixed that. Weird, huh?

Not that weird. Food intollerances are known to be able to mess with both blood flow and breathing.You might have gluten intollerance.

I long thought my ME was dominated by blood flow and breathing problems. Last year I discovered I was intollerant to about half of what I ate. It were so much sorts of food that I never noticed an improvement by leaving a single or even two foods out. I just ate "sufficient" other stuff I was intollerant too to keep the bad flow going. Breathing and blood flow related problems are a common side effect of food intollerances, so it makes total sense. And they are reduced since adapting my diet. I've still got some way to go however...

In my experience getting of food I am intollerant too is not sufficient for a quick fix. Yes, it gives a quick improvement but over time my gut seems to "clear up" and help improvement. I guess that eating all that stuff I'm intollerant too since my childhood did mess up my gut pretty bad and it needs time recovering.

 

[Farmgirl]

@dejurgen Hi, that is good information! Food intolerances can really limit one's diet and lifestyle. 10 years ago I went gluten free and that really reduced some of my ME symptoms. I felt the changes almost immediately! Then, I began having joint issues that would travel from one joint to the next and found it was a dairy allergy, which I have probably had since my 20's, and I am in my 50's.

I thought, well, now that we have discovered what is causing me all these issues: Gluten and Dairy- I will get better!
Then, I became more and more sensitive to foods I was eating. I had a very long list and ended up eating only organic produce and a few other things like rice, etc. We cleaned out the foods with preservatives and that seemed to help.....also took out preprepared food with their long list of ingredients, most of which I had no idea what they were. That helped.

Then, in 2016, after the death of my parents and many other things, my health nose-dived to the point that my systems were shutting down. I finally got with a great set of doctors and it was explained to me that my immune system was turning on me. After almost 2 years of treatment, I can eat some gluten and dairy, very sparingly, but don't have reactions to them unless I eat it repeatedly. I don't even really miss the stuff now, and have found many other things that fill me, even though I was not much for veggies, I have learned to cook with them and make them enjoyable. I was allergic to peanuts and can eat them now, too.

The breathing problems were much worse when I was on gluten, for sure.

What food intolerances did you have? Are you seeing your reactions improve? Do you take probiotics??
Have a great day, as best you can considering the circumstances we all find ourselves in. :-D FG

 

[dejurgen]

Then, I became more and more sensitive to foods I was eating.

Since adjusting my diet I am getting more sensitive then before too. A small mistake gets a quicker response. But that increased sensitivity, while annoying, is kind of a good thing too me. For decades I was sensitive to nothing, but intolerant too many things.

Let me explain: with sensitive to nothing I mean I didn't get an immediate and clear reaction to eating the offending food. With intolerant too many things I mean that while I was not sensitive too it, eating it for a long time did definitely help ruin my health. It just happened without obvious connection. That's kind of the definition of an intolerance.

What food intolerances did you have?

The strongest one is to fructose. Fortunately I don't live in the States as fructose use their is getting through the roof as corn can be grown cheaply as source of fructose. The cheap sugar over here is sucrose. I believe it's sort of fructose malabsorption as the ratio between fructose and glucose (also starch based) is an important factor in it. Maybe if I'd lived their I would have discovered this intolerance in time. If not, my health would be totally ruined even compared to now.

Next to it, I'm intolerant to about the whole FODMAP list. And to some types of cabbage, to black salsify, root celery, turnips, moderate intolerant to beetroot.

Also larger quantities of mashed potatoes ain't helping me. I start to believe more then a bit my intolerance is bacterial growth related. Due to eating plenty of fruit and probably having fructose malabsorption all of my life the large bowel received plenty of fructose. That isn't supposed to end up their in large quantities year round. This gave some nasty bacterias a chance to take over the large bowel and cut tiny holes in it. Now whenever I eat something that ends up as "fast bacterial fuel" in the large bowel it gives kinda of an explosive reaction with a massive immune activation and a strong flare in mind fog, exhaustion and pain.

Are you seeing your reactions improve?

In the beginning it only got worse. Now it *seems* to slowly get better. That is the instant reaction to eating something wrong. Overall health is slowly getting better from the start on, but not in a perfect straight line.

Do you take probiotics

I tried. Best thing ever to provoke my intolerances so far, at least after fructose. Problem is that many of them contain FOS (fructose oligo sacharide) and that is bacterial rocket fuel just as well. Learned this from someone on the forum. Haven't bought and tried new ones without it yet. Will probably try in the future to find such ones and try them very carefully.