oxygen hunger/shortness of breath question

[xrayspex]

Hey for 22 years I have had the problem of feeling like I lose oxygen the longer I am upright. Most of the time lying down intermittently throughout the day has been my way to be able to go back upright and carry on.
last summer I got a kind of air hunger that wasnt alleviated by lying down, it sometimes felt like I couldnt breathe too, and that lying down brought it on.When I tried to sleep on my left side for example it felt like my air got cut off so I always sleep on my right side since then. It went away in the winter and then came back a bit in the heat this year but hasnt been nearly as bad as last year. Recently though I have been feeling depleted of oxygen that lying down again doesnt alleivate. Its very uncomfortable, feels like I am being suffocated a little bit half the time, like someone has the pillow over your face but letting in just enough to keep you alive. I can act "normal" in public sometimes when its happening, but it makes me internally very uncomfortable and irritable. I am used to lying down being the panacea, lying down didnt always make me feel better right away sometimes, if i had stayed upright for too long but after 20, 40, 60 or 90 mins I usually felt better in the past, like I would relax and fill back up with oxygen. That doesnt always happen lately. This is after 22 years of lying down working most of the time.

Cheney had that theory that we actually had too much oxygen and that was causing the air hunger feeling. Something he said or i read onetime was something to the effect that sometimes the oxygen issue gets weird to where lying down hurts more once we cross some point. but I can't remember the details of that theory. Does anyone else? Or any other ideas on what this is and do any of you have that where lying down doesn't make you feel better? Eventually I feel better because I almost still always wake up feeling ok first thing in morning as far as oxygen goes the last month. Its just after a few hours it sometimes hits me that I feel suffocated. I think drinking tea might make it worse.

 

[camas]

Shortness of breath is one of my most dreaded symptoms. I hate the feeling of trying to appear normal when you feel like you are suffocating and just want to lie down, but can't.

I can't remember what Dr. Cheney had to say about shortness of breath, but wondered if you had been following any of the threads on mast cell activation as a possible cause of ME/CFS? Shortness of breath is one of the symptoms MCAS and tea is not only high in histamine, but also contains benzoic acid, a known mast cell degranulator. I've been feeling better since I gave up my morning tea which wasn't easy.

 

[Sherlock]

When I tried to sleep on my left side for example it felt like my air got cut off so I always sleep on my right side since then.

Those episodes sound like so: your arteries were dilated so much that the heart tries to make up for it by pumping more. To do that, it has to expand more than usual so that it can fill more. Lying on the left puts pressure on the heart and it can't expand as it wants to.

If it were me I'd check BP and see if there is a drop at times when breathing seems wrong. That might be from histamine, just as Camas says - because histamine (and other chemicals) from mast cells drops BP and also constricts airways.

As to your general question as to why laying down doesn't make you feel better, is it possible there are times with a lot of mucus in the lungs which block the oxygen from getting into your blood?

Sorry to say, there's also the possibility of the dreaded 'lung remodeling'.


Camas, I've been craving vinegar lately, it seems to do good - so with me at least, things aren't simple. There's even that Cosmonaut doctor who advocates taking histamine as an anti-mast-cell therapy. Btw, have you tried taking quercetin tablets before having tea? (there's even quercetin in tea)

 

[merylg]

Hi xrayspex,

Shortness of breath/oxygen hunger would have to be one of the worst symptoms (well it's one I have suffered for a long time) it is insidious and one of the hardest to investigate. It can have so many causes.
I think you need to look at all the possibilities & eliminate them one by one. You need to consider the obvious to the obscure.
I have recently found I have high Cobalt levels in my Hair Mineral Analysis. I'm now getting blood levels checked. Cobalt toxicity can cause shortness of breath.

Pulmonary hypertension causes shortness of breath:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001171/

DaignosisPro lists 384 possible diagnoses related to Shortness of Breath

http://en.diagnosispro.com/differen...nt-shortness-of-breath-sob/37712-154-100.html

 

[Sherlock]

possible diagnoses related to Shortness of Breath

Meryl, aren't there any stats specifically on SOB in CFS?

In my case, I can feel it in my upper chest. At many times, if I exhale very forcefully, that will make me cough. However, it also can get better or worse on a daily basis.

 

[merylg]

Meryl, aren't there any stats specifically on SOB in CFS?

In my case, I can feel it in my upper chest. At many times, if I exhale very forcefully, that will make me cough. However, it also can get better or worse on a daily basis.

Are you saying that because you have CFS you are not going to consider other causes?

 

[Sherlock]

Are you saying that because you have CFS you are not going to consider other causes?

I don't follow you. It only makes sense to think that the problem which started with CFS didn't co-incidentally arise from some totally unrelated factor at the very same time.

 

[xrayspex]

hey you guys, helpful stuff, and just nice to have people who understand. this symptom, and variations of it along with pain have been my top 2 most upsetting symptoms with my CFS over the years. once you have dx tho of CFS or Fibromyalgia and then talk to docs about these things they dont try as hard to figure it out. Last year tho i insisted and they did do some heart tests on me. They never explained why I cant sleep on left side but the artery theory makes sense. Also i have suspected mastocytosis. I so love my tea tho its one of my few pleasures but its not worth this lately. I go thru periods where i have to quit caffeine cus things get too flared and I know it challenges things more and even the cytochrome p45o issues got compounded with caffeine.

someone told me that because of the drought there are more allergens in the air cus they have been chopping up the failed crops and thats going into the air. This started in August around time of that starting probly as well as its hayfever time anyway. But my symptoms dont usually manifest as sneezy/runny nose, more neuro.

 

[richvank]

Hi, xrayspex.

Here's another possible mechanism for air hunger in ME/CFS:

The respiratory center in the brainstem regulates the rate and depth of breathing for the body by monitoring the level of CO2 and the pH in the blood it receives. If CO2 drops, it slows and shallows the breathing, so that less CO2 is exhaled, and that normally brings its level in the blood back up to normal.

In ME/CFS, there is mitochondrial dysfunction in the skeletal muscles and the heart muscle. These represent a large fraction of the body's total cellular mass, and they normally produce a large fraction of the CO2 produced in the body. Because of the mito dysfunction, their production of CO2 is decreased in ME/CFS, lowering the CO2 level of the blood in the general circulation. The respiratory center tries to raise it by slowing and shallowing the breathing, but it does not come up as readily as normal, so the breathing remains slower and more shallow than normal. During sleep, the breathing sometimes stops (sleep apnea). Some PWMEs say that they have to "remind themselves to breathe" even while they are awake.

The shallow and slow breathing also results in a lower oxygen level in the circulating blood.

The problem with this is that all organs of the body are served by the same circulating blood, but not all have mito dysfunction. So the ones that still need oxygen at a normal rate, including probably the brain for the most part, are not able to get enough. I think this is what produces the sensation of shortness of breath.

I think that the longterm solution is to correct the mito dysfunction in the muscles, and the way to do that is to lift the partial block in the methylation cycle, which will raise glutathione and lower the oxidative stress, so that the mitochondrial can operate normally again.

Best regards,

Rich

 

[Shell]

last summer I got a kind of air hunger that wasnt alleviated by lying down, it sometimes felt like I couldnt breathe too, and that lying down brought it on.When I tried to sleep on my left side for example it felt like my air got cut off so I always sleep on my right side since then....

That's really fascinating to me because I have the same problem. I can't lie flat because then I can't breath. I can't lie on my left side because I can't breath and it feels like my chest is crushing me (weirdly). So I always sleep on my right side.
I am being treated for poorly controlled asthma (step 5 treatment) which means I have ventolin, and Seretide inhalers. I take more than the normal recommended dose of Seretide (4 to 6 puffs daily) and have Montelucast tablets. These do help the tightness and wheezing but do nothing for breathlessness and air-hunger.
I've occasionally woken up gasping for breath so I try and sleep with extra pillows to stop me lying flat.Those triangle pillows work well to keep me upright all night when things are really bad

I'm giving up tea for Red Bush which is actually quite nice when you get used to it

KBO

 

[Valentijn]

I have the same problem, but it's my right side and my back I can't lie on. I can breathe normally on my left side, and fairly well on my stomach.

 

[camas]

Camas, I've been craving vinegar lately, it seems to do good - so with me at least, things aren't simple. There's even that Cosmonaut doctor who advocates taking histamine as an anti-mast-cell therapy. Btw, have you tried taking quercetin tablets before having tea? (there's even quercetin in tea)

Yep, things are never simple with this disease! Hadn't heard about histamine as an anti-mast-cell therapy. I've been trying to cut back on high histamine foods after seeing that most of my known triggers were on the list.

Forgot to mention that I have to sleep on my right side too. My shortness of breath was so bad a year ago that my doctor finally relented and ran some tests. I passed the ultrasound on my heart with flying colors even though I was lying on my left side. The pulmonary test showed problems, but I haven't any luck with asthma medicine. I'm thinking of asking my doctor if I can try a cromolyn inhaler since it stabilizes mast cells.

I also wonder if the shortness breath isn't partly related to dysautonomia. My doctor was surprised to see how ill and short of breath I became after trying to perform the Romberg maneuver. There's a doctor at www.prettyill.com who has some interesting theories about dysautonomia coming from intracranial pressure. She has been treating her POTS and dysautonomia with diamox. I get a kick out of her videos. She's entertaining in an SNL sort of way and very informative.

 

[Sherlock]

The respiratory center in the brainstem regulates the rate and depth of breathing for the body by monitoring the level of CO2 and the pH in the blood it receives. If CO2 drops, it slows and shallows the breathing, so that less CO2 is exhaled, and that normally brings its level in the blood back up to normal.

seemingly that would relate to the Bohr effect

The shallow and slow breathing also results in a lower oxygen level in the circulating blood.

To what level on a pulse oximeter? Also, would you see the difference in the typical squeeze-a-fingernail and watch the color change DIY test? (if you know what I mean)

In ME/CFS, there is mitochondrial dysfunction in the skeletal muscles and the heart muscle.

Can that change from day to day?

 

[Sherlock]

Yep, things are never simple with this disease! Hadn't heard about histamine as an anti-mast-cell therapy. I've been trying to cut back on high histamine foods after seeing that most of my known triggers were on the list.

Forgot to mention that I have to sleep on my right side too. My shortness of breath was so bad a year ago that my doctor finally relented and ran some tests. I passed the ultrasound on my heart with flying colors even though I was lying on my left side. The pulmonary test showed problems, but I haven't any luck with asthma medicine. I'm thinking of asking my doctor if I can try a cromolyn inhaler since it stabilizes mast cells.

I also wonder if the shortness breath isn't partly related to dysautonomia. My doctor was surprised to see how ill and short of breath I became after trying to perform the Romberg maneuver. There's a doctor at www.prettyill.com who has some interesting theories about dysautonomia coming from intercranial pressure. She has been treating her POTS and dysautonomia with diamox. I get a kick out of her videos. She's entertaining in an SNL sort of way and very informative.

The Plot Against Asthma & Allergy Patients

by Dr. Felix Ravikovich
http://www.thenhf.com/page.php?id=99
But I've seen it FOR FREE online somewhere. Also have seen histamine for sale @ $12US

(Histamine was studied in the cosmonaut program as relates to anorexia in space.) I have no idea if the book is great or wacky. If you read any of it please post a summary

Interesting about your ejection fraction being normal that way.
(a well done 55 second animation

on EF)

Thanks for pointing to the Romberg test:

I passed that fine, the sharpened version was a bit harder with my dominant foot back, and more than a bit harder with my other foot back. Sharpened Romberg www.youtube.com/watch?v=NS6XtWFbqjc

Ah yes, I've watched Dr Diana, with EDS. I remember her from when I was looking into alkalinity.

(Btw, just a mention: florinef was discontinued for use in traumatic brain injury patients because it raised intracranial pressure too much.)

 

[camas]

I can't do the sharpened Romberg even with my eyes open (and people wonder why I rarely drive!). I'd caution anyone trying these to make sure someone's there to catch them should they fall. My test left me quite ill and short of breath for several hours.

It looks like Dr. Ravikovich's treatment is bee venom. I have used the homeopathic apis maellifica from time to time. Worked really well against a yellow jacket sting a few years ago, but I didn't notice much help with allergies. May have to try it again.

Dr. Diana has several videos on mast cell activation, but it's clearly not the whole picture for her and her family, as it probably won't be for us. She wants to hear from ME/CFS patients as well as others as she is trying to put together a comprehensive checklist of symptoms for the interrelated diseases she has listed on her site. Here's the link for the video: http://tinyurl.com/ckqmecr And here's the link where you can download the checklist: http://tinyurl.com/dy8qwto

 

[alex3619]

Lol, I can't do an eyes open Romberg test either without swaying badly about ten seconds in. I have also developed post prandial (after food) air hunger recently. There is a long list of possible causes, many implicated in ME. Bye, Alex

 

[xrayspex]

wow thanks for all the great info y'all
I still work (with accomodations) and am beat so will have to check out links and such later and respond then
but i wanted to add that there were years in the past where i was more comfortable sleeping on my left side as far as oxygen etc goes but no more. and like some of you I also have difficulty breathing on my back so its always my rt side which gets old, sometimes i long to sleep in dif position. before I had cfs and before neck got hurt I loved to sleep on my stomach but that is weird on the neck now.
they did do a sleep study on me last year when this got bad and didnt find apnea altho they said sometimes snore like when on my back, but not bad, or catch my breath. I dont think it was the best sleep study cus when i told them i maynot be able to fall asleep in that evnmt but that benadryl helps me sleep they urged me to go ahead and use it if i was ok with that cus they wanted to watch me sleep, even if it was sedated. which was weird to me because my idea of a comprehensive sleep study would be to analyze the fact you cant sleep if thats how it goes down. anyway i took some benadryl and slept but the benadryl also treated my difficulty breathing i was having at that time when lying down so i shouldnt have taken it because it probly made me breathe better than i normally would have at that time.
nite
xrS

 

[taniaaust1]

Meryl, aren't there any stats specifically on SOB in CFS?

In my case, I can feel it in my upper chest. At many times, if I exhale very forcefully, that will make me cough. However, it also can get better or worse on a daily basis.

There is some stats on SOB in CFS . According to various studies, it is between 30-70% have this with ME/CFS. http://wwcoco.com/cfids/bernesx.html

 

[alex3619]

Hi Tania, thats roughly the same percentage of those with OI. I wonder what the overlap between the two is?

 

[Susan Murphy]

I have had occasional shortness of breath/air hunger for 20 out of the 30 years I've had CFS. Heat was always guaranteed to bring it on. Allergies could also. After rare incidents of tachycardia, I would have shortness of breath for a week or so. With the onset of menopause, I have had constant shortness of breath for the last 3 plus months. Also, whenever I have shortness of breath my pulse is very slow. There is NO anxiety at these times! In searching the web, I read entries from several women who have shortness of breath before periods, suggesting low hormone levels bring it up. All of you, please check and see if your pulse is low when you have shortness of breath.