Air hunger

[katamarang]

Hello, new here. I've been experiencing air hunger and fatigue since March. It's usually okay in the morning then gets progressively worse throughout the day. I thought it was in my head/covid anxiety so had some hypnotherapy but the breathlessness continued, so finally got a blood test and had undectectable b12 levels (deapite having taken supplements). Ive had the first 2 of 6 loading doses and dont feel any better. I guess I'm just looking for reassurance that the injections can actually help 😩 all my other vitamin levels were fine (folate was borderline), was also tested for celiac disease and diabetes and I don't have either. Has anyone else experienced the horrible air hunger, and did the injections (or anything!) help at all?

Thank you xxx

[Nackapan]

Hello.

Glad you having your loading doses.

I think ive had air hunger. I would suddenly gasp like a quick intake of breath. Didnt ever know when it would happen. I found it quitd distressing ad the only time I'd witnessed someone doing it wad when I sat with a friend who was gravely ill and it concerned me what she was doing. I dont get it now so b12 should help you. It all takes time.

Good to get tested for anything else.

[katamarang in reply to Nackapan]

thank you!

[clivealive Forum Support]

Hi katamarang this just one of the symptoms of a B12 seficiency,

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

You may need to supplement with folic acid (400mcg daily) as you are having B12 injections. Check with your doctor,

I wish you well

[katamarang in reply to clivealive]

thank you!

[Emmers5]

relief from the air hunger takes awhile. I also had undetectable level of b12 and it took a few months to see significant improvement and then it would sneak back when I was due for another injection. Extremely uncomfortable to be yawning and then gasp for air or to breathe as deeply as possible and then have my lungs spasm to inhale more. I now appreciate every restorative breath. My kids always used to complained that I used to breathe like a suffocating moose.

[katamarang in reply to Emmers5]

that's really reassuring it eventually got better, thank you

[Luac]

With such low levels of B12 you should probably be getting injections until there are no more improvements to your symptoms - this could take more than the initial six. I self injected every two days for six months before I could start weaning myself off to less frequent doses.

It really made a huge difference.

Be aware that you should not have your b12 tested again as false readings can occur - too many of us had a second reading after initial treatment leading the GP to say levels are fine, treatment can stop. It can't.

[katamarang in reply to Luac]

thank you for the advice ill talk to my dr about this

[Ritchie1268]

I suffered from this, so rest assured it is normal with low B12.

I would be sitting there wide awake then I'd gasp for breath out of nowhere. Didn't have a clue why at first.

Since regular injections it's completely gone. So don't worry, it is something that should go with treatment.

[katamarang in reply to Ritchie1268]

Thank you for this thats really reassuring

[Ritchie1268 in reply to katamarang]

You're very welcome.

[Ryaan]

One of the symptoms of low B12 so B12 should help in time, but it can also happen with low folate as you said you’re borderline.

Also one of the symptoms of low Iron. (These 3 generally are the cause).

[katamarang in reply to Ryaan]

Thank you. I made a mistake about the folate, my folate levela were normal my phosfate levels were bordrine

[19191919]

Yeah I had it and get it when the injections are due. The objections did and do help . I had anaemia too.

[katamarang in reply to 19191919]

thank you for replying, good to know the injections helped!!

[Cherylclaire Forum Support]

Overlapping noisy sighs while gulping in air ?

Yes, certainly was a daily feature of life for a long time for me. Being indoors, in a car, in a supermarket, sitting down, especially hard upright chairs in airless rooms (so always when waiting to see a consultant) and the tube/bus could start it off - even sometimes happened on waking !

If it goes on for a bit too long, it starts to get a bit painful, doesn't it ?

I used to get embarrassed when it turned a lot of heads in the supermarket checkout queue, but got used to it after a while.

This continued for years and now is a rare symptom - by rare I mean I can go for a week now without doing it and it doesn't happen more than once a day now, or get to the stage where it hurts. For me, frequent injections helped but it took a long time and I'm aware that these yawns could easily return to their previous frequency and severity. This is true for all of my symptoms: not gone, just lurking somewhere in a dormant state !

And still always a surprise to me that no-one in the medical profession recognises this highly-specific complaint as related to B12 deficiency !

[katamarang in reply to Cherylclaire]

Thats really reassuring thank you

[Tiggers321]

I am experiencing exactly the same, my is terrible all day and wakes me at night! It’s also worse when I’ve eaten! Does this happen to you?

I have been taking 2000mcg a day for 1.5 weeks (my doctors don’t do injections unless you have PA) I would say I have seen some Improvement at times it seems better. I can get breath’s easier but still sigh and yawn all the time! Chest is sore from breathing so hard! I have had this now for 4 months! It’s exhausting!My b12 was 89 so reasonably low! My other symptoms are tiredness, weight loss and appetite loss! A little dizzy and unsteady on my feet!

[Nackapan in reply to Tiggers321]

I'm amazed you not getting b12 inje tions with that level. Can you not change doctors if the tablets are not working. BNF guidelines. The latest guidelines say you can have anabsorbrion problem without a diagnosis of PA . The test is not good enough.

[katamarang in reply to Tiggers321]

I feel your pain, hope you feel better soon

[katamarang]

Thank you so much for this, sorry for the late reply I only just checked this forum again!

[Emmers5]

I hope that by this point you have felt a bit of relief. I just remembered that at my worst, before diagnosis, I had such desperate need for air that when someone hugged me I thought I would die. I mean actually die. I thought people must die from hugs all the time, why don't we ever hear about people dying from hugs?

[katamarang in reply to Emmers5]

I had my 6th loading dose today and feel really rotten...had a good day Friday though. Trying to be patient. Yes to the hugging thing! I've felt so uncomfortable the last few months with being hugged

[Tiggers321 in reply to Emmers5]

The breathlessness is all consuming isn’t it, after I eat I find it worse and when trying to sleep and Upton waking. It has eased a little I have been taking 1000mg twice a day plus four sprays of an oral b12 supplement! The need to air is reduced but still feel I constantly yawn or sigh to get the air I need! Very frustrating and extremely exhausting.

[Holicejr]

I've been dealing with this for about two years. The asthma Dr diagnosed me with adult asthma but I'm still not convinced that is what I have. Sometimes I just try to get a deep breath and can't. It's like it gets cut off half way through. Lying down at night seems to relieve this. I've never been checked for B12 levels so I'm happy to have found this. I'm curious if this is working for you?

[jessicapower1 in reply to Holicejr]

Did you figure it out?