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Air Hunger

Messages
13
Since this is my most bothersome symptom and the one that most negatively impacts my quality of life, I'm curious how prevalent it is within this community. I've chased down a lot of rabbit trails trying to find the source but, as yet, to no avail. If you have it, what things have you tried that helped? Also, what are some of the most likely causes? Right now, I'm looking at adrenal fatigue and playing around with hydrocortisone dosages, but it's not looking like that is it. Help!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Since this is my most bothersome symptom and the one that most negatively impacts my quality of life, I'm curious how prevalent it is within this community. I've chased down a lot of rabbit trails trying to find the source but, as yet, to no avail. If you have it, what things have you tried that helped? Also, what are some of the most likely causes? Right now, I'm looking at adrenal fatigue and playing around with hydrocortisone dosages, but it's not looking like that is it. Help!
That's one of my remaining symptoms, and a main one same as for you. For me, it seems due to the lungs. If I inhale very powerfully, that always makes me cough.

I've seen various accounts around the web about PWCs passing or failing lung function tests. I've at times wondered if my heart might have been damaged by a viral infection. I am aware of some with SOB yet good ejection fraction, but EKG showed heart block (LBBB).

It can change from day to day, which tells something. Once I tried an albuterol inhaler, but that did nothing. Yet once I took pseudoephedrine and that helped, though never again on subsequent tries. Antihistamine measures haven't helped. So yes, there is some mystery to it.

It could also be the red blood cells, e.g. getting into rouleaux formation or being low on iron.
 

Nielk

Senior Member
Messages
6,970
Hi dsnrbec,

I don't know the answer. I just wanted to welcome you to the forum.

I too suffer from "air-hunger" but, I have believed that in my case it is due to my chronic sinus problems and
blockages of my sinus cavities. I don't know this for sure though.
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
This is my most annoying symptoms. Brain fog is more debilitating, but feeling like I can't get a deep breath is incredibly frustrating.
I have went down different avenues but nothing has helped thus far. I also tried albuterol but didn't have lyck. My anaerobic threshold is low, but I don't think the air hunger is related to my AT because my air hunger is just as bad at rest and doesn't seem connected to my heart rate.
One theory I have seen several times is that air hunger is related to GERD. I know my air hunger is worse when my sinuses and acid reflux are bad. I have been trying varying dosages of H2 blockers, but was thinking of trying PPIs for a short while to see if it will help. I don't want to do that long-term since I don't think suppressing acid is good, but it would be nice to spend a day feeling like I am getting enough oxygen.
In my case I don't think it is related to diaphragm weakness because the rest of my muscles are pretty much back to normal strength now.
I have had several friends with CFS tell me they had air hunger in the past and then it just went away, which isn't helpful for stopping it but is at least hopeful.
If I find anything that helps I will report back :)
 
Messages
13
Thanks for your feedback and for the welcome. I'm pretty sure it's not heart related since my ejection fraction is good and EKG and echocardiogram are normal. I've also had chest x-rays and even a ct scan to rule out a pulmonary blood lot. Whenever they have checked my O2 stat, it's always around 99 percent so that is also puzzling. That beings me back to methylation or HPA axis issues. Since I'm mercury toxic but unable to chelate until pathways are open, I guess I'll have to live with it for now. I sure am tired of sleeping sitting up!
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
I also wanted to mention that in the Lyme world they consider Babesia to be a big cause of air hunger. Several people have said taking Artemisinin helped them get rid of air hunger.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Air hunger is often related to hypothyroidism. Unfortunately, too many doctors only rely on the TSH and do not consider the free thyroid hormone levels, FT4 and FT3. There is a big difference between "optimal" labs and "normal" labs when it comes to the thyroid especially and many people with subclinical hypothyroidism fall through the cracks.

Did you do a saliva cortisol test?
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
dsn-why do u sleep sitting up?

i have a thread on this topic from last week in symptoms section btw
 
Messages
59
Location
New York
dsnrbec,
I am afraid that I am in the same boat. This has kept me up many nights, needing to breath.
I have had many thoughts about this, but am too wasted right now to think of anything helpful. I found that forcing the lungs, ie talking/singing loudly for a large amount before taking breaths, was a drop helpful, and as others have spoken about (cannot find their posts offhand) that oxygen might not be going to the brain fast enough, which might lend a clue.

If you find anything that works though, please let me know :- )
 
Messages
13
I have to sleep on a pile of pillows in order to get my breath, xraysspex. Lying flat just doesn't allow me to fill my lungs with oxygen most of the time. Standing and sitting forward are also positions which help me get enough oxygen during the day. I've done a saliva cortisol test which wasn't great but it wasn't terrible either (low in each reference range). I've also had a complete thyroid panel done which showed high RT3 so I'm on T3 only but can only tolerate 25 mcg per day, presumably because my adrenals are weak. I'm slowly working up 5 mg every month or so but so far the problem hasn't resolved.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Dsn thanks for letting me know why you sleep sitting up. When my reflux really acted up a few times I had to sleep sitting up because I know sometimes its a cause of "shortness of breath" for me but I don't think its by any means the only cause.
Also in my thread about oxygen hunger from last week I was trying to see if anyone could remember how Dr Cheney explained the air hunger problem, he said that usually lying down makes people with CFS feel better or more comfortable withit but when something crosses over a certain point lying down makes you feel worse, and I can't remember what those circumstances are. I will see if I can find his writing on it. Sometimes I have periods where lying down makes it worse and lately was experiencing that at times.....I dont think its just the reflux right now but something weird going on with the pressure systems in my body and maybe my immune system in overdrive more than usual.
 

mellster

Marco
Messages
805
Location
San Francisco
FWIW, I experienced (mild to significant) air-hunger for a couple of months when I was sick - lung capacity test was ok but not great so they went for the easiest dx as borderline asthma. Knowing I had higher than normal titers for EBV, CPN and MPN and methylation deficiencies at the time, I threw the inhaler into the trash and took artemisin, high doses of NAC and inhaled glutathione for a while and when my pathogen lab values normalized the air hunger gradually disappeared. I go on runs now again and bike to work, I still methylate and take maintenance doses of NAC while on MAF314 - I believe it is caused by pathogens (esp. CPN/MPN) and broken methylation (glutathione deficiency), so a functional and not structural issue. Hope it gets better!
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
I did a quick peruse to try to find Cheney info I was trying to remember and didnt find exactly what looking for but there is a lot of good info about dealing with it this thread and Rich V talks about removing methylation block too (he talks about that in my oxygen hunger thread last week too) some breatheing exercises here, I have had limited luck with Cheney breatheing exercises at times, holding breath feels good when I have bad air hunger....

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1256736
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Messages
47
Here is the Cheney video (a long series) on the subject: www.youtube.com/watch?v=8x2yJaiB_sI

Now I know what I'll be listening to at 4am :)

Thanks for this, S.

Question on my mind though..Has anyone here gone through the examinations Chemey is talking about here? If the Protocol he is talking about is so accurate, shouldn't all CFS experts be making the transition for it to be a common test? Higher EF...that's me, bingo. I was counted at roughly 68 percent though I'm pretty inactive. As for the rest, how do we get tested on this? Thanks

Matt
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
hey looking for clues I think that might be what I was trying to remember and find, thanks!
actually, I consulted with Dr Cheney once in 2008 and he did his special echo on me and told me he thought I likely have a PFO given the results on how he does the echo. The way he does the echo is very unorthodox however, not that it couldnt have some validity, but no one else does it like him anywhere that I am aware of. He had a highly skilled echo tech doing it who seemed impressed with the results but all the same its pretty nontraditional. I can tell you more later but just got home from work and am beat have to go chill awhile.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
What I think would be cool would be to find someone who does Peckermans heart test, as that is the study that inspired Cheney, coupled with his own experience of having a heart attack. At the univ clinic in my city one of my docs told me they used to have the equip Peckerman uses but no one was trained in using it so they got rid of it. argh......most cardiologists here seem like jerks as do most neurologists in my city.