How to manage Air Hunger problem

[erin]

I don't have Lyme's and I don't have mucus problems. But I still suffer air hunger -only at night. I don't know why. I am on Beta blockers and B12 injections. I feel when I'm due to my B12 injections (every 3 months) I feel air hunger gets slightly worse. When my blood test show B12 very low first time, air hunger was certainly much worse. I feel it gets better with B12.

 

[alex3619]

Central sleep apnoea involves failure to regulate breathing. I have not followed the research much but it would surprise me if there were not insufficient breathing as well as stopping and starting. It needs investigating by medical scientists if it hasn't already happened

The oxygen just isn't transfering to the body even when breathing.

This is an unproven assertion. This is correct for metabolic acidosis, but there is no guarantee its correct here. It might be right, it might be wrong, or it might be right for some patients and not others.

Pragmatic treatment has to be considered separately from theory. I have seen treatments fail on good theory, and succeed on bad theory. Reporting success or failure from a treatment is useful for many patients, asserting unproven theory as fact is not helpful.

A successful treatment does not mean a theory is right. Failed treatment does not mean a theory is wrong. Only proper studies with control groups etc. can lead to reasonable scientific claims being upheld. When something measurably succeeds or fails under controlled conditions you can make stronger inferences.

If the claim is its an oxygen deficiency, then you will need a study in ME patients which measures at least blood oxygen saturation, possibly a full gas analysis, and possibly arterial blood gas measures. Even then you need to be careful about interpretation. Problems in distribution might arise, as microcirculation misregulation could leave places with less oxygen. Problems in distribution of oxygen dumping might arise, as patches of high acidity will induce increased oxygen dumping at that point, leaving less available for other places. Such high acidity patches seem likely in ME, at least some of the time.

I want to restate my caution about interpreting from a symptom. A symptom can have many causes, especially when its vague. In some patients a given hypothesis might be right, but to demonstrate that might be very difficult if it turns out the symptom has many causes. One single cause for a heterogeneous group is very difficult to find, if not impossible. Other ways of looking at things are needed.

I think this symptom grab-bag approach is a big issue in why most of psychiatry and most CFS research has been a let down. Heterogeneous conditions require other methods. To prove a symptom has a single cause is a big ask, but its important to do that if it can be done.

 

[alex3619]

My Rule 22 (from my blog): Most treatments for ME are lemons. If you see a sour look on my face you will know why.

We often need to try things because science and doctors lack answers, and our need is great. I am not against testing things at a personal level. Delving into the science requires a different way of doing things though.

 

[prioris]

@prioris
Many in the Lyme community talk about air hunger. If I remember correctly, they seem to tie it to Babesia.

I read many of those posts. One can't totally preclude a micro organism in someone else as a cause of a symptom. Babesia is a malaria-like parasite, also called a “piroplasm,” that infects red blood cells.

Detection and active infection should be obvious. One should be able to treat it with black walnut or parasite cleaner. I went through parasite cleaners a very long time ago with no improvement. It's good to eliminate the possibilities.

 

[prioris]

As far as "unproven assertion", I am not here to prove any of my statements. My statements should be seen as informal inexact discussion based on personal experience. Just like someone who is drowning knows they are starved for oxygen, I know I am starved for oxygen. Proving this or that claim is less important than finding something non toxic that will improve the quality of one's life.

I don't wait for the announcement of proof since it isn't practical if one is sick. It's a trial and error thing. There are inherent risks. I stay with non toxic natural and relatively low cost solutions. I find taking a cure is a lot faster than going through a test and a lot cheaper. Outside of few things, I have generally stayed with natural non toxic remedies.

 

[prioris]

I don't have Lyme's and I don't have mucus problems. But I still suffer air hunger -only at night. I don't know why. I am on Beta blockers and B12 injections. I feel when I'm due to my B12 injections (every 3 months) I feel air hunger gets slightly worse. When my blood test show B12 very low first time, air hunger was certainly much worse. I feel it gets better with B12.

you said you experienced this at night. it may be acid reflux causing the problem. Lying horizontal will cause what is in the stomach to come up since the esophageal sphincter muscle doesn't close in some people. One time I thought I had nocturnal asthma with cough but it turned out to be acid reflux although it did not feel like acid was coming up. Maybe try baking soda before bed.

 

[barbc56]

Have you seen a doctor about these symptoms? There could be so many causes it's like throwing darts and seeing where they land.

Is there a medical diagnosis or recognized symptom called air hunger?

 

[prioris]

Is there a medical diagnosis or recognized symptom called air hunger?

It is not a recognizable medical condition but very unique. Air hunger seems to be a term originating from the ME/CFIDS disease.

Heck, ME/CFIDS disease is barely recognized medical condition ... lol.

 

[erin]

prioris;
Sodium bicarbonate? Mum used this ages ago. I've never tried it.

barbc56;
After complaining for many months NHS send me for an oxygen test. I can't remember the test itself much, but they measured my breathing capacity. It was normal.Then I went to see a heart specialist, he could not detect any heart defect, but very fast heart rate. Hence, the Beta Blockers prescribed by him. He also suggested I see a endocrinologist for a possible thyroid problem. I saw the endo privately as nhs Thyroid test results were normal, I was not referred. Private endo diagnosed me Hashimoto's. But he hasn't yet prescribed any medicine. He said my thyroid hormone levels are fine just now.

 

[prioris]

Chocolate or almonds are considered alkaline and will make my breathing much better. Now would I rather eat something yummy or gulp down some baking soda ... lol

I think most tests are a waste of time unless it is being used for research purposes or self investigation. I do think it is good to go through the battery of tests by doctors like Teitelbaum, Cheney etc for exclusionary purposes in the beginning once. Testing the cure is a lot faster and cheaper way to go to check something out.

 

[MarkC]

Air Hunger for normal people is not due to lack of O2 but due to CO2 buildup. This can be due to your own exhaled breath. My son has severe M.E., bedridden, very high base metabolism with very high heart rate, often >100pbm at 22 years old. Since he can tolerate no sound or light, we would close his door in his 10x12"x8 ft ceiling room (960 cu ft) and he would get air hunger. Outside air is 400ppmv CO2 worldwide and inside air is typically 600-700ppmv dued to people present, IF the house recirculation fan is running. BUT, if the air recir is off, such as during time when not heating or cooling is being used, the static air in room gets breaths, exhaled at 35,000 ppmv or so and raises the CO2 in the room about 250 ppmv per hour so 1200 ppmv in two hours. Some people feel rooms are "stuffy" due to CO2 etc at about 1000ppmv and if room closed for many hours during him sleeping 14 hours straight with door closed, can get thousands of ppmv in room and even normal people spending time in room could get Air hunger, but they are usually present a few minutes at a time only.

I recently bought from Amazon.com a CO2meter brand for IAQ (Indoor air quality)/ventillation measurement 24/7 in his room. Green lite goes to yellow at about 800 ppmv CO2 as warning and can eventually go to red and has nice digital readout. Based on this we now always keep the full house fan on 24 hour continuously, no longer on automade the might not recirculate for days when weather is nice and not heating or cooling demand. Recommend anyone with air hunger in small room keep fan on 24/7 with door slightly cracked, and/or buy CO2meter. I have no affiliation with this company, but seems to work fine. $89 via their website or similar via Amazon etc: http://www.co2meter.com/collections/fixed-wall-mount/products/co2mini-co2-indoor-air-quality-monitor

We have known people with air hunger who say opening windows or getting outside helps, so this can also be a cause of this the is easily fixed. If all leave the house, turn off the fan though, since this then is wasting electricity, money for medical bills, and building up CO2 worldwide that can affect climate change, and also worldwide "air Hunger" esp for people with lung disease and other issues also.

Son also feels his diaphragm muscles get exhausted since all muscles have become week. He could bike 20 miles easily 2.5 years ago, now cannot chew food, talk, listen. Hope we can all work to Cure M.E. If you know anyone at local Rotaries, try to get them a talk on M.E. since they have spent $100M per year on Polio and almost eradicated (<100 cases left), so next hope they might Cure M.E.!

 

[hvac14400]

Chocolate or almonds are considered alkaline and will make my breathing much better.l

i eat almonds 100g per day year round - no effect at all, the same goes about lemons/choco.
but this one:

Buteyko breathing method (reduced breathing) has helped me a lot with breathing at night (I wake up breathless and/or stop breathing). Also, my stuffy nose (for which I used nasal spray every night for the last10 years) is gone. As long as I tape my mouth shut so that my mouth doesn't fall open and I overbreathe through my mouth, I no longer need nasal spray. I learned Buteyko/reduced breathing from a book called "Close Your Mouth."

is a real cure, tho i've used other technique - google "wim hof method", specifically "breathing exercise", since i can't post links right now, according to forum rules.
my respiration rate and depth both dropped significantly, at day and night times.

i remember some time ago i've woke up in the middle of the night with and from feeling, that something is horrible wrong with me and i probably will die just right now - was breathing like 5 times per second and still not getting enough oxygen - that's how bad my "air hunger" was then.
now i completely forgot about it.

Air Hunger for normal people is not due to lack of O2 but due to CO2 buildup. This can be due to your own exhaled breath.

Recommend anyone with air hunger in small room keep fan on 24/7 with door slightly cracked, and/or buy CO2meter.

this is not curing the case, only symptoms - not recommend this to anybody, coz this way you can mask the problem and make it even worse.
only in very bad conditions, like in your son's case : (

 

[prioris]

I was experimenting with b12 cyanocobalamin for a few days. I developed severe air hunger within a day. Cyanide absorbs oxygen so it would make sense. An antidote to cyanide is hydroxycobalamin which converts to cyanocobalamin and is excreted by the body.

One of the causes of my more severe hunger days a long long time ago was taking b12 or b complex supplements. It helped explained what happened. The b12 cyano just made things so much worse. So that is part of a solved enigma. there are vitamins that help with oxygen like b5, b6, b12, vitamin c etc.

this air hunger could be explained by toxin absorbing oxygen and/or vitamin deficiency. hope this helps.

 

[prioris]

I managed to create another air hunger problem. I took larger amounts of R-5-P (B2) than usual. I think it depleted my other B vitamins in some way. I took a couple P-5-P (B6) and it allowed me to breath easier. From what I can understand, B6 has the most influence on the amount of oxygen in blood.

This air hunger seems to be a depletion of one or more of the B vitamins hence deficiency alert. So if you have this problem, play around with the B vitamins like B5, B6, B12

 

[Gondwanaland]

Chocolate or almonds are considered alkaline and will make my breathing much better.

Arginine. I think there is something to the Urea Cycle. It should be easy to find consistent info about it
hypoglycemia + urea cycle

 

[JaimeS]

Outside air is 400ppmv CO2 worldwide and inside air is typically 600-700ppmv dued to people present

When mine is really bad in the car, it is genuinely mitigated by cracking the car window. Ridiculous but true, it's happened multiple times.

This illness, seriously.

This has been one of my scarier symptoms on which I've actually been able to make some headway.

I take 400-mg Vitex agnus-castus pills, 3 am, 2pm and it stopped most episodes of air hunger. It used to be every day, especially in the summer, and now it's rare that I feel this way. Things that have an effect:

• Temperature -- hot is worse, and we've spoken on other forum threads about how drinking ice-cold water or pointing your car's AC directly at your throat and chest is a life-saver
• Humidity -- wet is worse, to the point that if it's really bad for you, you may want to get a dehumidifier for your room if you live in areas where the humidity gets high
• Time of the month -- so, it turns out estrogen and progesterone shifts the week before menses are VERY bad. If I haven't had an air hunger episode all month, I'll have one 7 days before menses. Estrogen actually has effects on the vascular endothelium, so that may be part of why; shifts in progesterone might be the culprit, alternately / as well, since progesterone affects breathing. Even mainstream physicians have used progesterone for asthma and other breathing-related disorders.
• Time of day -- I found an old statement from me saying that "it used to be worse in the evening" and now I remember. I get it so infrequently now.

For more go here and scroll exactly halfway down the page and read my old post: http://forums.phoenixrising.me/index.php?threads/air-hunger-shortness-of-breath.1475/page-3

In conjunction with this, I've noticed sharp pains in some places and entire limbs going totally numb while I'm asleep. I've got to think that this is some kind of vascular issue as well as respiratory issue.

May do a blog post on this topic, there's a lot of information floating around out there, but it's scattered in multiple threads.

 

[Diwi9]

May do a blog post on this topic, there's a lot of information floating around out there, but it's scattered in multiple threads.

@JaimeS - If you look into this issue more for a blog, maybe consider reading up on lung problems in lupus. I have a friend with lupus and she often experiences breathing problems during flares. A quick search and this link from Johns Hopkins came up, which relays about five different lung-related issues in lupus (maybe we share some causal factor?): https://www.hopkinslupus.org/lupus-info/lupus-affects-body/lupus-lungs/

 

[JaimeS]

Thanks @Diwi9 ! I'll check it out.