air hunger/shortness of breath

[Horizon]

I think it's called mayo clinic meditation. It's purple! Try doing the breathing part without shutting your mind off, perhaps while watching tv. Have you had cortisol testing while your breathing symptoms are bad?

Hmm maybe itunes only since i can't find it. My cortisol is always high but i haven't checked specifically around breathing.

 

[Susan Murphy]

Hmm maybe itunes only since i can't find it. My cortisol is always high but i haven't checked specifically around breathing.

See, high cortisol is very much a part of this!!! Ashwagandha is supposed to lower cortisol. Please check your pulse during episodes of difficult breathing. Mine is always slow and weak.

 

[slysaint]

Which leads me to a question - you mentioned you also used your inhaler - which I tend to think of as for asthma or respiratory infections. So I wonder if that's what you're inhaler is for, and if it provides relief for some breathing problems? I'm curious because the first time I used an inhaler was for a severe respiratory infection - and there were two different types, one was supposed to be fast acting, and one was more anti-inflammatory, which I needed for while after the main symptoms from the respiratory infection cleared up.

Some recent episodes I've had with breathing feel a bit more like it might be lungs instead of the usual - but I'm not sure how to tell. It does feel like I can draw air in, but am not getting the oxygen from it.

I used to get this a lot; was rushed to the surgery and put on a nebuliser the first time it happened then prescribed an inhaler; also got an oxygen cylinder on prescription, ended up in A&E once but my oxygen absorbtion was normal; another time the GP just prescribed antibiotics (which made no difference).

I stopped using the inhaler and oxygen 10years ago; have had several episodes since.

I have been drug free ( apart from the occasional paracetamol ) for two years and take daily vit c doses.

What I do now when it happens is take a bigger dose of vit c(1000mg) and a paracetamol and rest more than usual (lie down, feet elevated); also avoid talking (which makes it worse). It takes a day or two but so far have found it works.

As for triggers I haven't pinned it down to any one thing in particular but then the same goes for a lot of my ME symptoms.

 

[Susan Murphy]

I used to get this a lot; was rushed to the surgery and put on a nebuliser the first time it happened then prescribed an inhaler; also got an oxygen cylinder on prescription, ended up in A&E once but my oxygen absorbtion was normal; another time the GP just prescribed antibiotics (which made no difference).

I stopped using the inhaler and oxygen 10years ago; have had several episodes since.

I have been drug free ( apart from the occasional paracetamol ) for two years and take daily vit c doses.

What I do now when it happens is take a bigger dose of vit c(1000mg) and a paracetamol and rest more than usual (lie down, feet elevated); also avoid talking (which makes it worse). It takes a day or two but so far have found it works.

As for triggers I haven't pinned it down to any one thing in particular but then the same goes for a lot of my ME symptoms.

Have you checked to see if your cortisol runs high during these episodes? How about your pulse during these times? Is it slow?

 

[JaimeS]

I have low-normal cortisol; it's not part of the picture for me.

This was one of my most distressing symptoms. I've mentioned it elsewhere a few times.

I take about 1600-mg Vitex agnus-castus (two 400-mg pills twice a day) and it's nearly eliminated this symptom, even in the summer when it was at its worst. I've also found that high doses of CoQ-10 help; it's definitely at least partially an energy-deficit problem with me. Oxygen is an essential part of cellular energy metabolism, and it seems as though when this begins to fail, the 'logical' response of the body is to get you to breathe more deeply. Your cells are sending the message that you must be suffocating.

I wish so much about this illness wasn't conjecture. All I can tell you is what helped me, and throw out some random hypotheses as to why so many of us have this problem, and add that it's definitely not anxiety-related: the worst one I ever had was on a day when my AC failed in my apartment. I was casually reading a novel I adored. It got worse and worse. When I retreated to the cooler basement, the symptoms decreased dramatically and I could breathe again. Oxygen-poor environments (hot, damp air) not our friends!

-J

 

[Susan Murphy]

I have low-normal cortisol; it's not part of the picture for me.

This was one of my most distressing symptoms. I've mentioned it elsewhere a few times.

I take about 1600-mg Vitex agnus-castus (two 400-mg pills twice a day) and it's nearly eliminated this symptom, even in the summer when it was at its worst. I've also found that high doses of CoQ-10 help; it's definitely at least partially an energy-deficit problem with me. Oxygen is an essential part of cellular energy metabolism, and it seems as though when this begins to fail, the 'logical' response of the body is to get you to breathe more deeply. Your cells are sending the message that you must be suffocating.

I wish so much about this illness wasn't conjecture. All I can tell you is what helped me, and throw out some random hypotheses as to why so many of us have this problem, and add that it's definitely not anxiety-related: the worst one I ever had was on a day when my AC failed in my apartment. I was casually reading a novel I adored. It got worse and worse. When I retreated to the cooler basement, the symptoms decreased dramatically and I could breathe again. Oxygen-poor environments (hot, damp air) not our friends!

-J

Can you please tell me what brand of vitex agnus castus you take? Are you sure that you aren't experiencing high cortisol during times of breathing distress? Unless you've actually done a cortisol test during these times, you can't know for sure. Another way to see if high cortisol makes breathing symptoms worse is to take a bunch of isocort. I tried it a few times and it made my air hunger much worse. Being in the heat is what makes my air hunger the worst. Humidity is terrible, but dry heat is bad too and I don't know if there is less oxygen in hot temperatures.

 

[JaimeS]

@Susan Murphy , NOTHING raises my cortisol. I had an ITT test, which is considered the gold standard for such things, and my body basically stuck its metaphorical fingers in its ears and hummed. That is, it made like a hypoglycaemic crisis was no crisis at all. Cortisol didn't rise; growth hormone actually dropped. At one point, my blood sugar was 28. My body still didn't seem to be able to mount a crisis response, even then.

Moreover, I don't have other symptoms of high cortisol. No mood swings, no high blood pressure, no flush in the face during these episodes; as observed previously, I am often doing something quite relaxing when I get one. The ONLY symptom I have in common with high cortisol is muscle weakness. In general, I am in the 'suppressive' / 'chronic' phase of this illness: my hormones are ALL low as a rule, including cholesterol.

WHY WOULD YOU TAKE ISOCORT TO 'CHECK' IF YOU HAVE HIGH CORTISOL?

Okay, okay, there are problems there.

So we have objectively verified (with many, many tests) that I have low-normal cortisol most of the time, but I have little to no cortisol reaction to stress (ITT). I still have terrible reactions to both oral cortisol supplementation and to injections of ACTH, which raise one's cortisol levels if the adrenals are doing their job.

Let's start with:

1) Poor reactions to cortisol supplementation happen to many PWME, though not to everyone. I make this disclaimer every time, because some PWME really rely on their cortisol supplementation. More power to them. Some of us become far more ill with cortisol and cortisol-analogues.

2) Your cortisol levels are not necessarily directly linked to this phenomenon. You have to know that, at the very least, there are two variables here: receptor sensitivity and levels of the hormone. In other words, how you react to cortisol is not a measure of your initial cortisol levels, only.

3) Then there's the fact that cortisol has an effect on the immune system, not just the endocrine system. If your receptors are quite sensitive, this effect may be exaggerated. Cortisol is an immunosuppressant at moderate dosages.

It's this last that I think was the kiss of death for me, though again -- soooo much conjecture.

What makes you think that yours IS cortisol-related? Did you get a cortisol test in the middle of one? I'm not trying to be challenging, I'm curious. We could be talking about two related experiences with very different etiologies, if so...

Anyway, here's the link to the Vitex I use. I do two pills twice a day. That's to iHerb, which gives me stuff if you purchase through a link I send, so full disclosure!

-J

 

[Susan Murphy]

@Susan Murphy , NOTHING raises my cortisol. I had an ITT test, which is considered the gold standard for such things, and my body basically stuck its metaphorical fingers in its ears and hummed. That is, it made like a hypoglycaemic crisis was no crisis at all. Cortisol didn't rise; growth hormone actually dropped. At one point, my blood sugar was 28. My body still didn't seem to be able to mount a crisis response, even then.

Moreover, I don't have other symptoms of high cortisol. No mood swings, no high blood pressure, no flush in the face during these episodes; as observed previously, I am often doing something quite relaxing when I get one. The ONLY symptom I have in common with high cortisol is muscle weakness. In general, I am in the 'suppressive' / 'chronic' phase of this illness: my hormones are ALL low as a rule, including cholesterol.

WHY WOULD YOU TAKE ISOCORT TO 'CHECK' IF YOU HAVE HIGH CORTISOL?

Okay, okay, there are problems there.

So we have objectively verified (with many, many tests) that I have low-normal cortisol most of the time, but I have little to no cortisol reaction to stress (ITT). I still have terrible reactions to both oral cortisol supplementation and to injections of ACTH, which raise one's cortisol levels if the adrenals are doing their job.

Let's start with:

1) Poor reactions to cortisol supplementation happen to many PWME, though not to everyone. I make this disclaimer every time, because some PWME really rely on their cortisol supplementation. More power to them. Some of us become far more ill with cortisol and cortisol-analogues.

2) Your cortisol levels are not necessarily directly linked to this phenomenon. You have to know that, at the very least, there are two variables here: receptor sensitivity and levels of the hormone. In other words, how you react to cortisol is not a measure of your initial cortisol levels, only.

3) Then there's the fact that cortisol has an effect on the immune system, not just the endocrine system. If your receptors are quite sensitive, this effect may be exaggerated. Cortisol is an immunosuppressant at moderate dosages.

It's this last that I think was the kiss of death for me, though again -- soooo much conjecture.

What makes you think that yours IS cortisol-related? Did you get a cortisol test in the middle of one? I'm not trying to be challenging, I'm curious. We could be talking about two related experiences with very different etiologies, if so...

Anyway, here's the link to the Vitex I use. I do two pills twice a day. That's to iHerb, which gives me stuff if you purchase through a link I send, so full disclosure!

-J

Thank you for your reply! I really feel that we have the same thing going on and an interested endocrinologist could figure it out. I have had highish cortisol since starting to have hot flashes with perimenopause, which has been 5 years. I've had some degree of air hunger since then. When air hunger is the worst, cortisol measures highest via blood, urine, and saliva. I too don't have other symptoms of high cortisol.

My blood pressure is low, my heart rate is slow, and most interesting I don't have an adrenaline response! Since perimenopause my epinephrine level has decreased, shown by symptoms and labs. Definitely abnormal to have low epinephrine and high cortisol, but mayo clinic didn't know what to make of it. My worst episodes also have nothing to do with emotional stress. They sometimes happen when sleeping, when I'm the most at peace.

When taking isocort I had terrible air hunger! Others have had air hunger while taking cortisol. I actually don't know if my cortisol would respond to the test you took since I don't respond to the usual stress provokers. Do you know the reason the vitex... Supplement might help you? Isn't it supposed to increase progesterone? I've been paying more attention to my carb, protein, and fat balance and the timing of eating these macro nutrients. Turns out I'm not eating enough carbs, which might be adding to my high cortisol. Heat remains the one thing that dramatically increases air hunger.

My heart rate is slow and weak at these times. In the past, when I had ample adrenaline, the adrenaline would kick in and air hunger would go away. Also interesting, is during the occasional times when I have a fever with faster heart rate and heart pounding, I have no air hunger. Also, no matter how much naturethroid I take, my pulse rate won't rise to a higher level. This is consistent with not having enough epinephrine.

 

[JaimeS]

Thank you for your reply! I really feel that we have the same thing going on and an interested endocrinologist could figure it out.

Maybe we do have a similar thing going on, after reading through everything you've written, here. However, I wouldn't bet on an endocrinologist being able to figure it all out.

What they should have done is diagnose me with 'adult growth hormone deficiency', for starters. I had VERY low GH that didn't rise in the slightest on ITT. They didn't. The endo gave me cortisol, instead. When I questioned her, she stated that GH was 'very hard to get' and that cortisol was pretty much all there was in terms of treatment. Now she may have just been an idiot, but something tells me she was correct about the narrow field of medicines for endocrine disorders.

My blood pressure is low, my heart rate is slow, and most interesting I don't have an adrenaline response!

Quite interesting, actually, since many of us appear to have an exaggerated adrenaline response. I've seen researchers speculate that's because other chemicals that enable us to keep attention are lower / production is impaired, after adrenaline-suppressants made teens with CFS worse.

Do you know the reason the vitex... Supplement might help you? Isn't it supposed to increase progesterone?

In a convoluted way, yes, that's why. Progesterone is a respiratory stimulant and anti-inflammatory that is used for other respiratory ailments, including asthma. Perhaps more importantly, given the context of mitochondrial dysfunction and that high doses of CoQ-10 have a similar effect, numerous studies show progesterone has a protective effect on mitochondria.

One time I went on a tour of PubMed because this symptom bothered me too much to sleep (it definitely used to be worse in the PM).

Because Vitex is a pretty gentle herb, I stumbled into my kitchen puffing like a fish on dry land and brewed a honking tablespoon into hot water and drank it. For those who insist on psychogenic causes for such things, especially breathing issues, I would give y'all a list of what I tried during other episodes, only I'd spend the rest of the night doing it. Maybe a dozen different ideas were given a fair shot before the Vitex. I say all this because my breathing became significantly less labored in a few minutes which, if you've experienced air hunger, is like some kind of miracle. I slowed down at that point, taking a sip of the tea once in awhile until the whole thing had passed. I did this a few times acutely (better in coffee than in hot water, masks that godawful taste) before deciding to go to a maintenance dose for good.

If ever I miss it a few days in a row, the symptom comes right on back.

My heart rate is slow and weak at these times. In the past, when I had ample adrenaline, the adrenaline would kick in and air hunger would go away.

Caffeine / adrenaline are often used as makeshift cures for asthmatic breathing issues as well. Man, I have an awesome story about an old professor of mine who was camping out in the middle of nowhere with his two friends. One of his friends had lost his inhaler. A serious asthma attack ensued -- they chivvied him up the side of a mountain and dangled him off, each one holding one of his legs. Then they shook him.

Adrenaline kicked in and the day was saved. Though I imagine he was tempted to beat the crap out of them later.

He'd tried to get his friend to drink as much boiled coffee as he could hold, before that, and it just wasn't a hard enough 'kick'.

-J

 

[JaimeS]

Ah, here we are:

The review notes that trials of drug treatments typically are of fair or poor quality, that no drug treatments are of proven value, and that some treatments—particularly corticosteroids and galantamine—cause important adverse events.

I, at least, am in the subset where this is the case.

From http://annals.org/article.aspx?articleid=2322808

 

[Groggy Doggy]

What they should have done is diagnose me with 'adult growth hormone deficiency', for starters. I had VERY low GH that didn't rise in the slightest on ITT. They didn't. The endo gave me cortisol, instead. When I questioned her, she stated that GH was 'very hard to get' and that cortisol was pretty much all there was in terms of treatment.

Did you get this resolved? Are you taking Somatropin now (about 10 different brands)? If you are low income, the Pfizer customer service agent told me that they will pay for 100% of the treatment costs (assuming you have the correct tests and diagnostics and qualify financially). I can send you the form, if you' d like, via PM if you are interested.

Maybe you could get another endo; one that is not a complete idiot?

 

[JaimeS]

Thank you @Groggy Doggy -- I appreciate the offer. PM me when you get the chance. I don't know what tests need to be done, but hopefully they have been. ITT is supposedly considered the gold standard for endocrine issues, and I had that done as well as multiple ACTH stimulation tests to confirm the issue wasn't adrenal.

And no, it was never resolved. The endo I had here really seemed clueless. Honest about his cluelessness, which sadly puts him a cut above the rest. He sent me to my immunologist, who is (not being sarcastic here) an ME patient's dream. He seems above-and-beyond-level determined to figure out what's wrong, always. Unfortunately, he does not deal in growth hormone.

-J

 

[Susan Murphy]

Maybe we do have a similar thing going on, after reading through everything you've written, here. However, I wouldn't bet on an endocrinologist being able to figure it all out.

What they should have done is diagnose me with 'adult growth hormone deficiency', for starters. I had VERY low GH that didn't rise in the slightest on ITT. They didn't. The endo gave me cortisol, instead. When I questioned her, she stated that GH was 'very hard to get' and that cortisol was pretty much all there was in terms of treatment. Now she may have just been an idiot, but something tells me she was correct about the narrow field of medicines for endocrine disorders.



Quite interesting, actually, since many of us appear to have an exaggerated adrenaline response. I've seen researchers speculate that's because other chemicals that enable us to keep attention are lower / production is impaired, after adrenaline-suppressants made teens with CFS worse.



In a convoluted way, yes, that's why. Progesterone is a respiratory stimulant and anti-inflammatory that is used for other respiratory ailments, including asthma. Perhaps more importantly, given the context of mitochondrial dysfunction and that high doses of CoQ-10 have a similar effect, numerous studies show progesterone has a protective effect on mitochondria.

One time I went on a tour of PubMed because this symptom bothered me too much to sleep (it definitely used to be worse in the PM).

Because Vitex is a pretty gentle herb, I stumbled into my kitchen puffing like a fish on dry land and brewed a honking tablespoon into hot water and drank it. For those who insist on psychogenic causes for such things, especially breathing issues, I would give y'all a list of what I tried during other episodes, only I'd spend the rest of the night doing it. Maybe a dozen different ideas were given a fair shot before the Vitex. I say all this because my breathing became significantly less labored in a few minutes which, if you've experienced air hunger, is like some kind of miracle. I slowed down at that point, taking a sip of the tea once in awhile until the whole thing had passed. I did this a few times acutely (better in coffee than in hot water, masks that godawful taste) before deciding to go to a maintenance dose for good.

If ever I miss it a few days in a row, the symptom comes right on back.



Caffeine / adrenaline are often used as makeshift cures for asthmatic breathing issues as well. Man, I have an awesome story about an old professor of mine who was camping out in the middle of nowhere with his two friends. One of his friends had lost his inhaler. A serious asthma attack ensued -- they chivvied him up the side of a mountain and dangled him off, each one holding one of his legs. Then they shook him.

Adrenaline kicked in and the day was saved. Though I imagine he was tempted to beat the crap out of them later.

He'd tried to get his friend to drink as much boiled coffee as he could hold, before that, and it just wasn't a hard enough 'kick'.

-J

Thanks for all this info! I'm sure your professor's friend was grateful after some time had passed! Caffeine doesn't increase adrenaline for me. I feel it increases cortisol and possibly norepinephrine because I get a tense feeling in my chest/air hunger, but I don't get an increase in heart rate. Low adrenaline coupled with high cortisol are the perfect combo for me to have air hunger. Before my adrenaline became permanently low, I had occasional air hunger. It was usually due to being in the heat. When my adrenaline would kick in, the air hunger would go away. Interesting that heat seems to be an air hunger trigger for you too. I used to have exaggerated adrenaline reactions until perimenopause when adrenaline has stayed low. Have you tried mitoQ instead of ubiquinol? I have just ordered it and will be giving it a try. I will try the vitex that you are taking after that.

 

[hellofriend22]

have had this symptom for awhile, but lately it is getting much worse - almost feels like I am trying to breathe carbon monoxide instead of oxygen

anyway, just wondering if anyone has any good ways of dealing with this.....I have tried laying down and relaxing, and I have an air purifier in my apt....not sure what else to do

Have you received a proper diagnosis or treatment I've been suffering from the same symptom and need help, thanks

 

[Anika]

I'm not sure how to distinguish air hunger from a breathing issue from symptoms that could come on with lower levels of oxygen.

Interestingly, after I read about symptoms of supraventricular tachycardia, called SVT, and using the Valsalva maneuver to stop it, I tried Valsalva when I had some symptoms come on, sometimes more in the chest, others in the head, and got relief.

I may have read about that here or at Cort's site. I think I've also read more recently that other methods can be used, like putting your face in a bowl of icy water. But Valsalva is really quicker and easier anyway.

I can't do links just now, but there are descriptions of how to do Valsalva, sort of breathing technique while bearing down.

 

[Alexi]

Buteyko technique could help this.

 

[Daffodil]

have had this symptom for awhile, but lately it is getting much worse - almost feels like I am trying to breathe carbon monoxide instead of oxygen

anyway, just wondering if anyone has any good ways of dealing with this.....I have tried laying down and relaxing, and I have an air purifier in my apt....not sure what else to do

When i was bedridden and at my worse with this illness, i also had air hunger. I really thought I was approaching the end. That was about the time that the XMRV news came out so I took Tenofovir. That ended up ending the air hunger but I guess it would seem like an extreme measure right now.

Can you get supplemental oxygen? i know they wont give it usually if the blood O2 levels are good but maybe you have a good doctor who could do it? some CFS patients have this, I think.

other than that, i would suggest seeing a good specialist...

xo

 

[alice111]

Hopefully I am not repeating what someone else said (as I am unable to read through the whole thread) but salt water helped this immensely for me! It had to be VERY high doses along with coconut water, but it definitely makes a difference. I used to feel like that daily, to the point where I could not speak and went to hospital... all because of low sodium

Also, I don't know if you are taking anything that impacts GABA, but I have found that too much GABA or anything that relates such as kava kava, alcohol, bentos etc can exacerbate this.

 

[hellofriend22]

I had this until I was diagnosed as having cryptostrongylus pulmoni (microscopic lung worms) by live blood microscopy. I was also diagnosed with borreliosis and micro-cocci on the red blood cells.

http://www.prohealth.com/library/showarticle.cfm?id=1215&t=CFIDS_FM

The breathlessness stopped after I had a course of Ivermectin for the worms.

Hello I read this post and was wondering if I could ask you more questions about this as I have been suffering with this breathlessness or shortness of breath. On here of course. If I could possibly ask you some.more questions. Thanks I hope you're well and have a happy new years

 

[Sidney]

I have only just read this thread, it grabbed my attention, because only this morning I was lying under the covers for hours, with eyes shut, unable to move, at the Lowpoint of a bad crash; and I realised that at this particular stage I am always sort of panting or gasping. (The total state is so overwhelming that I hadn't even thought about this aspect before.)

I also never thought about the fact that I crave night air, when not in PEM state. Sleep with open windows, lean out of window to suck in as much as possible; walk out on deck when I can, at night, and inhale, the colder the better.

I wonder if this is true for others ?