air hunger/shortness of breath

[Sidney]

Another thing I'd often wondered, I've just seen here in @Annika's post:

Does anyone else find icy water soothing? I normally feel the cold horribly, if temp goes below about 67F (!), I have Reynaud's disease etc: yet when feeling very ill ( not hot, just sick and crashy) I have to get up in the night and hold wrists, face, etc under cold tap - often put plug in bath and run cold water over feet and lower legs.
When unbearably sick I have been known to run a whole cold bath and lie in it briefly in the middle of the night.

Is this known to others with ME?

 

[knackers323]

Ok, something new and really bazaar to add to the breathing issues....last night I woke up and it felt like the involuntary action of breathing had become voluntary (& extremely difficult).....I know this sounds nuts, but it was seriously like my body was refusing to breathe unless I told it to and even then I had to really struggle to get my lungs to take the air in and to let it back out - and I could only manage that when lying on my back (which is really uncomfortable for me, but on my side it felt like I was suffocating & I was too tired to sit or stand)....this is not sleep apnea or anything that I have heard about before....was unbelievably scary, though.....got up and used my inhaler and took Bendryl (thinking it could be an allergic reaction and even if not, the benedryl could help with the panic I was starting to experience - note that the panic came AFTER the breathing problems started - this was not a panic attack- I am fortunate not to have those, but my counseling degree did teach me what they are like, so I would recognize one)....I tried to distract myself by reading, thinking that focusing on it was making it worse and if I wasn't paying attention, breathing would become automatic again....it didn't work....went on for a few hrs before finally subsiding enough I was able to go back to sleep.....seriously it almost felt like my lungs were just too exhausted to work rt

in the last 12 months or so I have been getting this too. the body just stops doing it and I find I have to kind of manually take over. it seems to come and go. just this morning it woke me up, I was gasping for air.

there are many reasons as to the cause of this. I think it shows that our nervous system is damaged/being effected in some way

 

[JaimeS]

Yes, @Sidney.

Colder air holds more oxygen than hot air. Cooler air can, therefore, help you breathe in a less labored way. Even people who are perfectly well take a deep, grateful breath when someone "lets the cool air in".

My breathing symptoms are worst when it is warm and wet out: not a coincidence.

I don't know if you've read the rest of this thread or if I mentioned it here, but high doses of CoQ-10 have personally helped me in the middle of a crash when I have shortness of breath.

in the last 12 months or so I have been getting this too. the body just stops doing it and I find I have to kind of manually take over. it seems to come and go. just this morning it woke me up, I was gasping for air

ANS screwy? I've noticed this too. Far moreso when I was acute than now. I remember multiple times when I had to tell myself to remember to breathe, like it was a conscious action I'd forgotten to do.

-J

 

[Sidney]

Thank you @JaimieS - such a simple fact, but one that I never knew.
I have been following this thread: I was so struck by the oxygen references that I bought an Oximeter yesterday: and yes, when, as so often, I woke last night, anxious, depressed, and frightened, from 3-5 am, I thought of using it.

I was for a couple of hours at 84-90, which is below the lowest recommended oxygen saturation level of 94. (Or what they say it is, in the instructions.) The beeps were going off like mad, and eventually my fogged brain twigged that I ought to do something, so I managed to stagger out to my deck and breathe, under the stars.

It shows something (what?) about PEM that I can never concentrate on yoga breathing now, although before ME I did yoga, including breathwork, for over 30 years. All I can do is pant.

This is another example of what this site has meant for me: NO doctor, rheumatologist, clinic, has ever looked at this, or suggested my logging, HR or blood oxygen. Thank you, PR.

 

[Sidney]

I should have added: I do take ubiquinol 200 mg plus PQQ 20 mg per day. But just with breakfast, not when in the middle of a crash or having breath problems. Of course I don't know what I'd be like without it!
This is true of all my supplements (except vit C, without which I can't wake up [and breathe, now that I think of it]).

 

[Valentijn]

I was for a couple of hours at 84-90, which is below the lowest recommended oxygen saturation level of 94.

Mine gets low too, if I sleep in the wrong position. Basically it's only normal if I sleep on my left side, though sometimes I need an extra dose of my OI supplement at night even for that.

But I recommend experimenting while you're awake, and checking out different positions to see what it does to your oxygen saturation and/or heart rate. I also have to lean forward slightly even when sitting up, since my saturation drop if I lean back in a couch or chair.

 

[hellofriend22]

Have you guys been checked for sleep apnea?

 

[JaimeS]

I should have added: I do take ubiquinol 200 mg plus PQQ 20 mg per day. But just with breakfast

I'm one of those who advocates suprabiological doses of CoQ10, esp during a crash.

I had my blood oxygen monitored during one of these little episodes -- not on purpose, but by total chance. I was in an ER at the time when I got one. Oxygen levels dropped to 78% and it wasn't at all as severe as I've had it other times.

By chance too, today is the first time in a long time I've had this symptom. Def brought on by accidentally eating something with dairy. Reasoning is too convoluted to go into here, but it suffices to say that food sensitivities affect breathing, too.

-J

 

[Valentijn]

Have you guys been checked for sleep apnea?

Yes. Don't have it.

 

[Sidney]

No, definitely not.

 

[Sidney]

Mine gets low too, if I sleep in the wrong position. Basically it's only normal if I sleep on my left side, though sometimes I need an extra dose of my OI supplement at night even for that.

But I recommend experimenting while you're awake, and checking out different positions to see what it does to your oxygen saturation and/or heart rate. I also have to lean forward slightly even when sitting up, since my saturation drop if I lean back in a couch or chair.

Thanks for this!
Is there an anatomical eason why the left side is better? I think I turn over constantly, when I am able to sleep at all.
And could I also ask, what is your OI supplement?

 

[Valentijn]

Is there an anatomical reason why the left side is better?

Probably, but I have no idea what it might be. Other people report their right side being the good side!

And could I also ask, what is your OI supplement?

A low dose of Yohimbe. The active ingredient, Yohimbine, is a powerful and specific adrenergic alpha 2 (ADRA2A, ADRA2B and ADRA2C) antagonist.

 

[Horizon]

I also suffer from often severe shortness of breath or gasping on even the mildest exertion. Aside from ME problems which I think is due in part to a system that is just so taxed that any little thing we do is essentially cardio I think there are 2 other culprits (at least for me).

I suffer from reflux, (sometimes silent reflux) and find that taking a pepcid AC will calm my shortness of breath in situations where that seems to be the problem.

I also think that any type of allergy or mucus production can also cause SOB and in those cases I find Mucinex D can be somewhat helpful.

I don't really have any ME specific coping tips for SOB except pacing and resting but consider those 2 other possible causes as a way to deal with SOB.

 

[JaimeS]

Ha! SOB means something a wee bit different in certain contexts... it took me a mo' to figure out what you meant!

 

[JaimeS]

Another thing I'd often wondered, I've just seen here in @Annika's post:

Does anyone else find icy water soothing? I normally feel the cold horribly, if temp goes below about 67F (!), I have Reynaud's disease etc: yet when feeling very ill ( not hot, just sick and crashy) I have to get up in the night and hold wrists, face, etc under cold tap - often put plug in bath and run cold water over feet and lower legs.
When unbearably sick I have been known to run a whole cold bath and lie in it briefly in the middle of the night.

Is this known to others with ME?

Vasoconstriction helpful maybe?

 

[Susan Murphy]

ALL OF YOU NEED TO CONSIDER VOCAL CORD DYSFUNCTION. The key symptom is difficulty breathing air in. An allergist can diagnose this.

 

[JaimeS]

Vasoconstriction helpful maybe?

Trouble breathing this morning and pointed the AC at my throat and chest. Brought some relief in minutes... how interesting!

 

[ahimsa]

Trouble breathing this morning and pointed the AC at my throat and chest. Brought some relief in minutes... how interesting!

I've done this, LOL!

@Sidney - you aren't the only one. I have used all sorts of tricks to cool myself down.

Even before I knew that I had dysautonomia I would get up at night on bad nights and drink a full glass of ice water. Then I'd lie back in the recliner, with no blankets on, until I was almost shivering. Then after a while I would finally feel less out of breath and feel that I could breathe better. Only then would I go back to bed.

I usually don't get quite as bad as I did back then. Partly it's the meds that I take (midodrine, fludrocortisone, plus extra water/sodium/potassium) but also I work harder to avoid crashes, very careful to get rest and pace myself.

Back before I had any diagnosis I did not know what things would trigger a crash. I knew that exertion was a problem. But I did not realize that standing, or sitting upright for a long time, was so bad for me since I never fainted - not until the tilt table test - and I did not know anything about dysautonomia.

 

[JaimeS]

I may do a blog post on this. There is lots of information about this symptom floating around on Phoenix Rising, but you have to read every thread to get the good stuff.

 

[StrivingOn]

I have similar issues. I don't have any answers or tips other than to try Paracetamol when you have an attack, so I'm writing in the hope that adding my experience to the knowledge base will help.

My air hunger is a feeling of suffocation normally accompanied by feelings of panic that vary from mild to just-about-to-lose-all-control. It started out of the blue some 18 months ago when, after a few minutes of exercise, I started to panic that I just wasn't getting enough oxygen and my body was losing the battle to supply enough; I felt trapped in my clothes and the feelings eventually died out after several very unpleasant minutes. Then, after this had happened 6-8 times over 4 months and my doc had checked out my lungs, I got a cold with a feeling of air hunger that gradually got worse until I could take no more; my pulse and SpO2 levels were within limits, and oxygen and Paracetamol brought the panic under control. I had several mild attacks over the next few weeks; a lung capacity tester showed my lung capacity was reduced (350 vs 560 expected) so I had an inhaler that helped me get back to normal after a couple of months.

Since these early attacks, I have had regular occurrences that can be broken down into 2 types;
1. Those after exercise such as walking up stairs that normally causes me no problems, where I breath rapidly and heavily and have a quickly-rising panic. My breathing and panic settle down to normal after 2-3 minutes lying down. These could be caused by my stopping breathing during exercise.
2. Those where I start to feel trapped and unable to breathe adequately, accompanied by a slow-rising sense of panic. These can last for anywhere between 10 minutes and 2-3 hours, and even then I still feel uncomfortable for hours afterwards.

I can find neither patterns nor triggers to these attacks, other than happening several times when I have just put my CPAP mask on.

For the moment I'm putting them down to a side effect of ME/CFS and am doing my best to live with them. I'm thinking of wearing a pulse oximeter on record in the hope of catching my Sp02 levels and pulse to see if there is a possible physical cause. I can't find a drug link (I've mostly just been on Provigil) and have high levels of morning Cortisol, fasting blood sugar and Cholesterol that I think are symptoms of another issue that may be causing these attacks rather than the cause themselves..