Very high peak flow, but very hard to breath!

[DaxterSA]

I'm a bit scared lately and need help. I take a purple inhaler now having previously used Clenil Modulite and Serevent. I also have Ventolin which I am needing more and more of now, despite the improving weather etc.

I never cough or wheeze, but I do get some chest tightness, visial disturbance, burning feet and heavy shortness of breath both inhaling and exhaling, but mostly inhaling. A couple of puffs of Ventolin or more stops symptoms but it doesn't last long. Lately I've been trying to reduce my blue inhaler dosage, but ultimatly I fail every time; I can't even sit still or walk a few steps when the blue inhalee wears off and symptoms return. If I wait too long, once I take the blue inhaler my breathing may improve, but I feel the anxiety from the dyspnea before carry through.

The trouble is I have a peak flow meter for about a month now. It never sinks below 600, and has gone as high as 700 very often! There is no difference between when I take a puff or not. I know it is not hyperventilation because I never get the usual things like pins and needles. Also a pulse oximeter has spotted my oxygen sink below 89% twice now: doctors STILL called it a panic attack, but what kind of panic attack gets better with blue inhalers?!

I have so many questions, but these will suffice for now:

- Why is my peak flow higher than average when I am visibly struggling to get air in and out?

- Can blue inhalers help with non-asthmatics, or do they have a rebound effect that is fooling me into thinking I have asthma?

- The long acting bronchodilator and steroid combi still haven't helped after almost 2 months. Why?

I'm sorry if I sound desperate; I can't eat or sleep without my blue inhaler right now, and I'm scared to go out in the cold or even leave my room unless it's with a friend. Thank you for any help you can offer!

[Minushabens]

Your situation sounds incredibly complicated & I aren't really sure what to suggest other than there may be other problems than asthma.

First of all, there's lots of good research into placebo effects showing how they can impact on health, indeed some research on how the way a health professional presents medication can influence how the patient thinks it works (or doesnt).

That might mean it works because you want it to, but I'm absolutely not saying that is what is happening. Only that it's a possibility.

Blue inhalers are bronchodilators, so they will dilate the bronchial tubes of anyone. Obviously the point is that non-asthmatics (or at least people with healthy lungs) don't need that treatment & I assume taking the medication becomes dangerous.

What you are describing though is that you get out of breath, the inhaler seems to help but your peak flow isn't affected by taking it, which isn't a close fit for asthma symptoms per se, but might be caused by something more complex (or just different!).

I think you need to find a qualified health professional to talk all this through with. If your peak flow is good but your sats less so then there's something odd going on, but you need someone with specialist knowledge to talk through it I think & build some understanding. There might be other tests as well that can help with a fuller diagnosis.

I hope you find something out soon that helps you.

[pucageorgie]

You sound very similar to me, and I suspect I have Cough Variant Asthma though I'm still exploring this with my new respiratory team. Do you cough constantly or do you wheeze? My peak flow doesn't drop and my pulse ox reading stays high even when I'm struggling not to pass out from lack of oxygen. It makes it very difficult to be taken seriously in hospital, which I've written about here before if you want to have a read.

With the severity of your symptoms you need urgent, specialist assessment. Ask for a referral to a respiratory specialist as soon as possible. As Minushabens said, it could be asthma or something else as well, and it needs a full exploration. Good luck.

[Daxter in reply to pucageorgie]

Sadly I never cough OR wheeze, which has made a diagnosis practically impossible at the moment. A physio says I have "Dysfunctional Breathing disorder" not that I know what this means, but she also said blue inhalers can help with such things. Is that true?

[pucageorgie in reply to Daxter]

Sadly, I really don't know. Are you being referred to a specialist? I hope so.

[Tengudreams in reply to Daxter]

Neither do I. We sound so alike. Keep me posted.

[johnsmith]

It is known that asthma medication can stop working. The reasons why is still open for debate.

It may be time to look at improving the usage of muscles in your chest. Tight muscles will give you problems so you need to find a therapist who can help loosen the tight muscles.

You can see an Alexander Teacher who can help with posture and put you more in touch with knowledge of how the body works. You can see a massage therapist who can help untighten some of the tight muscles you have. You can see a McTimony chiropractor who can help remove some of your chest muscles which are in spasm.

You say: "Why is my peak flow higher than average when I am visibly struggling to get air in and out?"

You may have faulty breathing technique. Faulty breathing technique is more common than many people realise and is something that medical profession do not understand very well. The Alexander Teacher should be able to help with this.

It is worth while seeking out a recommended good yoga teacher. Engaging with uncontracting muscles will help improve your health in ways that you may not yet understand why.

Hope I have been helpful.

[Vebb]

Hi DaxterSA , did you ever find out what was wrong? I am having the same problems. :/

[Hidden in reply to Vebb]

I can blast through a spirometry test or blow the top off a peak flow meter but not be able to sustain it over the long haul. All the tests are short duration and don’t tell much about me.

Except once. By luck I was at the pulmonologist for lung testing AND my breathing was about to crash. He got a 47% improvement pre and Post spirometry, but the next day I was in intensive care because of the asthma. So there’s no doubt about my asthma, but it’s hard to catch on testing.

I just used my PFM. I got 520, absurdly high for 5’6” woman who is 72. But I’m wheezing my head off and Duoneb isn’t helping.

[Jayjay681]

Hi Daxter, did you ever get to the bottom of this. I have the same problem and have been given the blue inhaler and fostair.

My main issue is that I cant seem to get enough air in when I'm lying down or about to sleep. I'm up most nights struggling and have had the inhalers cut a couple of months but they no longer seem to work. My PFM is 700 but the moment I lie down I can't breathe or get a full breath. Then get pains in my chest area and heart area. I'm 52 yrs old. Please let me know what helped you.

Thank you

[EmmaF91 Community Ambassador in reply to Jayjay681]

Have you looked into reflux? This is almost a typical presentation for reflux causing SoB... just an idea to suggest to doc/look up yourself. GORD is an asthma mimicer as well as being an asthma trigger

Good luck and hope this helos

[Jayjay681 in reply to EmmaF91]

That's been looked into, I don't have GERD, also I don't have asthma either and never have done. Last March as I laid to sleep my breathing seemed so slow that I would wake up gasping for air. This would carry on all night and did so for 17 nights, ended up in AE several times to no avail. Eventually I tried my wife's blue inhaler and that seemed to work.

I was now due to have a sleep test for apnea and a spirometry but then covid 19 happened. So everything cancelled.

The gp gave me fostair and that's not helping anymore.

I'm an ex smoker, 20+ a day but stopped smoking in 2004.

Its just that I always have a 'pocket' of air that I can't reach, like my lungs don't fill up that last bit. So frustrating and I don't want to go hospital due to covid 19,

Any help would be appreciated. As Im going mad with no sleep.

[EmmaF91 Community Ambassador in reply to Jayjay681]

Reading that I was going to suggest some form of sleep apnea 😅. If you had a contact number for the sleep test it’s worth giving them a call. If you explain it keeps sending you in to hosp and you can’t sleep etc, they may see you as soon as some clinics are open... do you sleep on an incline, or upright? And if so does that help? It may be a short term solution just so you CAN get some sleep 😅

[Jayjay681 in reply to EmmaF91]

Unfortunately the hospital cancelled the appointment with 'no immediate rescheduling' but I will chase my GP and tell them how much I'm struggling.

I sleep inclined with some pillows and a duvet (looks like a massive beanbag) but agsin that doesnt help in the slightest when I'm having a really bad night like I did yesterday.

Plus when I put the oxygen sat on it goes forth to 92 it 93.

Will have to ring my gp tomorrow, thanks for all your help 😊

[LDloveslattecoffe in reply to Jayjay681]

If you have the original appointment letter that got cancelled - ring the hospital and give them the details and explain need to see asap.

If it is Obstructive Sleep Apnea (OSA) this can mean you stop breathing which explains why you wake gasping etc.

You say "oxygen sink below 89% twice now" this is low and not good. I have OSA but my oxygen never drops unless I am horizontal.

You can buy wedges to put under pillow which can help but if it is OSA you need a CPAP machine. I got mine through the sleep clinic but I believe it is possible to buy these (although I would advise you wait till seen).

[Tengudreams]

Man all these posts sound like me too. SOB, tight chest, feel like I need more air...but hit 650-700 on peak flow. All my exgs and x rays and blood tests are good. Could it be psychological? I dont feel it is, as I have OCD and know the difference in feelings...im working with a naturopath to try and find a solution. I just did a 45 min walk with my 40 pound vest on and still blew a 657. But felt like I was outta air.

[Adampfdavis123]

Just spent ages typing a message and it disappeared! Typical!

I never cough or wheeze yet have had SOB randomly for the last 4 months which never goes away and often am full of phlegm and suffer from morning headaches. My brain tells me COPD but I’m only 31 and probably have got 5y max pack years behind me. It’s always been more social than lifestyle but I spend an awful lot of time being social when I was in my early 20s! I wheeze when I force air out of my lungs as hard as I can and also make this weird growling sound - never been asthmatic before so very unusual for me.

I hope for GERD as opposed to lung disease but who knows - it’s very coincidental timing with covid and very frustrating for tests. Booked in with both respiratory clinic and ent but who knows how long it will take. On stomach pills which helps with the pain in stomach but not with SOB so unsure if they are intrinsically linked. Blue inhaler works as it would for anyone but brown does nothing. I feel congested in my face and in my chest and a lot more phlegm is coming up, normally clear or white in colour, and then frothy white phlegm when around dust or exercising.

Please let us know what it turns out to be and I’ll have my fingers and toes crossed that it isn’t anything more than allergies or something even though it’s consuming our lives!

Adam