Severe breathing problems feel terrified and hopeless

[chinadoll19]

I am feeling very desperate. About six months ago I had a period of being out of breath every day, especially when just walking from room to room or down the garden path, when doing very light housework. If I sat down it would eventually settle down, and I would get my breath back. I also felt like I was suffocating at times. I saw the doctor and he examined me, said my lungs were clear and oxygen levels normal. He sent me for a chest x-ray which came back as clear and healthy. I asked if it could be anxiety but he said he didn’t know, he didn’t seem to believe in anxiety. He said he didn’t know what was causing it and left it at that. He would have done a blood test and ECG but didn’t because I had these (for another problem) six months earlier and the results were excellent. After quite some time I gradually started to improve and was much better except there were some times walking a distance I would get breathless. On the whole though I could carry on with life.
A few weeks ago it all came back and much worse. I can hardly walk across the room without being quite breathless, I get out of breath just getting dressed, housework makes me so so breathless even the tiniest bit. I am obsessed with it now and it’s the first thing I think about when I wake up. I'm getting terrified of it. I feel worse when I bend, I goggled it, went on the NHS website and it said most likely heart failure. I then looked at other site which I knew I shouldn’t they all said my symptoms were heart failure, so now I’m panicking more. I don’t have swollen ankles or anything like that, but my heart races when I am out of breath. I’m mostly ok just sitting.
I have a home oximeter and through all this the levels have been 97/98 so that was a bit hopeful but these last few days only 96. Starting to get worried. Today though it eventually settled on 96 it was all over the place and as low as 92 which is bad, it would settle and then start flashing these frightening numbers again.
I am so afraid I don’t know what to do there are no ambulances now and a and e is terrible. I want to see my own doctor but they are not open for another 4 days. Can i last that long?
Sorry this is long but i live alone with no one to talk to and feel in danger. Google says you should not ignore breathlessness as it can be dangerous. I am going out of my mind now. Can anyone relate to this. I see on here quite a few with random breathlessness but mine is mostly alright it is on exertion (very slight exertion) that starts it off. Hope to hear from someone please.

[serith]

How old are you? Is heart failure even within the realm of possibility for you? What's your resting BP/ heart rate? Overall fitness level? Have you ever been diagnosed with any heart related problem? If not-- you don't go from healthy heart to heart failure in less than a year... there would have been many signs along the way that heart failure was possible.

I hope you can go to the doctor soon. I'm sure there's an explanation for this, and that a doctor can figure it out-- I'm also certain that it's NOT as bad as what you are imagining. Of course your imagination is running wild, but as all of us with HA should remember, there are many, many benign causes of any symptom, even if the symptom seems scary, that are much much more likely than the really scary causes. I know you already Googled, so I'm sure you've seen the many benign causes of breathlessness that it lists, such as asthma, COPD, panic attacks/ anxiety, covid. You could have had covid and never known it. My mom has been having breathlessness for months (almost a year) after getting covid.

I wish you the best-- I hope you can get answers as soon as possible. <3 Keep us updated.

[serith]

Also, just to add, even in the worst case scenario-- not that I'm saying this is likely, because it's not, but, even if you do have heart failure-- it's something that's common and treatable. There are many, many medication options out there, so even in that absolute worst case, and given that you had so many good test results, I'm sure this is something can be fully addressed and treated. It's really, really not the end of the world.

[serith]

ALSO (sorry for the third post)-- your blood oxygen level is FINE, please stop checking it constantly. You're only torturing yourself. Of course it was "all over the place" if you're fixating on it and checking it constantly.

[ankietyjoe]

I've had several bouts of terrifying breathlessness over the last few years or so, enough to make me call an ambulance on one occasion.

Like you, I was tested and cleared.

It IS anxiety, or more likely stress.

If you can sleep, it's fine. You say you're hyper focusing on it, and that will make it massively worse.

Your o2 sensor is showing you readings that are fine. Those things are wildly innacurate and if it blips down to 92, it's not an issue.

I had Covid in October and it triggered a severe (160bpm+) bout of tachycardia in me and I ended up in A&E. They kept me in overnight and would constantly check my ECG and O2 readings. At one point my O2 was showing as 91. The nurse asked me to take a deep breath and it jumped back up to 95-96 within about 10 seconds. She was fine with that, and so should you be.

Sometimes stress can be so bad that it does feel like it's strangling you, mainly because your diaphragm just isn't working right, you end up chest breathing and/or mouth breathing. If you are mouth breathing it messes up your O2/CO2 balance, and that can literally make you feel like you are suffocating. It's the same as hyperventilating.

You've had it before and it got better, but now it's back (happens to me too sometimes), so try and correlate outside stresses or spikes in anxiety. And remember, that if you have been suffering with anxiety/stress for years, even the smallest thing could trigger a response. For me it was moving in 2019. There was so much stress involved in the move (for multiple reasons) that 3-4 days after we moved into the new house I was literally gasping for breath 24 hours a day. It was absolutely terrifying, but ultimately it was 'just' stress.

Do some research on nose breathing and diaphragmatic breathing, and why it's so important. It will feel 'wrong' at first, but you need to practice it.

[serith]

Btw i just want to clarify that I don't think it's remotely likely that you have heart disease. I only said what I said in my third post because I think it's important to address anxiety from multiple angles, by replacing your irrational thought patterns with more rational ones. Even though you don't have a serious illness right now, it's important to get your mind around the fact that even diseases that sound very scary and serious are in fact quite treatable and survivable. I think if you can appreciate that fact, it can drastically improve your overall anxiety.

[chinadoll19]

Thank you all for your kind replies. However on this occasion it isn’t just nerves (I was really hoping it was) but it got so bad a few nights ago I felt it was really something and rang 111 I spoke to a doctor who said I must go in and see him at the walk-in. He examined me well and said I only had oxygen in half my lungs and go into hospital right away. He did an ECG while I was waiting and said that was fine. I’ve been in hospital the last few days and am out now. While in they did loads of tests, and different doctors kept giving different opinions. One wasn’t happy with the ECG and I needed a heart ultra sound scan. Another said it wasn’t necessary and they didn’t do one. They said I had fluid on the lungs which I believe because when they treated that I felt somewhat better though far from right. Loads of blood tests, chest x-ray another doctor came and said they thought they knew what it was, she had an assistant with her and rambled on and on in medical terms for herto write down, I couldn’t understand a word. Then she said I had COPD, I have heard of it and thought it was a smoker’s disease, I am a non-smoker so felt shocked it was that. Most of the staff were very kind and understanding but I didn’t like her.
I used to know a lady who had this for years, though I haven’t seen her for a long time my daughter says she is still doing alright on the medication. I did a foolish thing, I googled it, first up ‘terminal disease’ that freaked me out and sent me into panic. I have 2 inhalers but there is doubt about one as you can’t take it with glaucoma drops which I have. So I am having to rely on the one inhaler. They are making an appointment for me to see my GP in two weeks time to review things. I am so anxious and depressed I rang a nurse from Lung UK. She wasn’t so full of gloom and said they will aim to get me as normal a life style as possible with right treatment and advice. She also said which was interesting that they hadn’t done two vital tests that prove you have COPD one I noticed on the discharge papers they are asking my GP to do,
Where I’m at now is trying to get calm and accept it all (so difficult) every I get breathless I think of my damaged lungs. When I’ve seen the GP I will do an update. Thank you all for taking an interest and trying to help. I do appreciate it.

[Lolalee1]

I would get a second opinion on the “COPD”.

[WiredIncorrectly]

If it's just breathlessness you're having then it's likely anxiety.

I believe myself to be fit and healthy. I exercise regular and walk stupid distances. Yet, when I am at home and doing something like vacuuming, or walking up and down the stairs with the washing, I'll feel breathless. My heart will pound. And this will set off a panic.

I know this to be anxiety.

I had a real case of breathlessness when I had COVID at the start of December. I walked down my steps to my house, walked about 100 yards, and then down another set of steps (we live at the top of a huge hill). I walked another 100 yards and had to stop to catch my breath. I was struggling to breath and this felt very different to anxiety breathlessness.

I had to go back home. I found out at this time my friend caught COVID from my house a few days before. So I took a test and I was positive. The breathlessness was related to COVID.

But this taught me something, the difference between anxiety and real breathlessness.

Real breathlessness causes you to wheeze and struggle. Imagine walking up a steep hill and at the top you're breathless. Your heart will bound. You will sweat. This is a natural response to doing something strenuous. But if you get this sort of breathlessness from doing something simple then it's likely not anxiety.

Your xray is fine. Your oxygen levels are fine. I assume you doc did BP too? The point is a healthy xray, and oxygen levels rules out a heart problem and COPD. The xray would have seen COPD.

Relax, get an evaluation for anxiety.

[chinadoll19]

Update: I am feeling quite a bit better as the inhalers seem to be working and I am not getting so out of breath and not so often. However I am living with some sort of lung disease and need a lot more info.


The position now is I got an appointment to see a nurse for a lung function test to confirm the diagnosis, or so I thought. I couldn’t keep that one unfortunately and expected to be given another. A nurse rang me and told it was for a lung clinic and they only have those occasionally. I am on the waiting list for the next one, she has no idea when it might be, it could be several months. So I am left up in the air. The hospital ordered this test to be done two weeks after leaving hospital, so that a definite diagnosis could be found and some other tests the hospital recommended be done. I now have the anxiety of not knowing for sure what I’m suffering from for goodness knows how long. Also the inhalers will only last a month and I have no repeat prescription for any more, and in any case the appointment I am not getting was supposed to assess how I am doing and review the medication. I pointed this out to the nurse and she said ‘oh it doesn’t matter’, well it does to me! I feel alone and left up in the air and need advice on what I can and can’t do and what I should be doing and I’m not getting it.


Does this sound right?

[Fishmanpa]

Based on your age and being older myself with pre-existing health issues, its not unusual to encounter more health challenges as we grow older. Once we get into out 6th and 7th decades of life, we have to expect health issues to arise. Just be thankful we live in a time where medical science can diagnose and manage these issues.

FMP

[pulisa]

You haven't actually got an official diagnosis of COPD yet. Have you spoken to your GP about being left in the lurch as you were unable to attend the appointment offered and now face a long wait with no actual diagnosis of lung disease but plenty of understandable anxiety? Maybe your GP can pull a few strings and get that lung function test and others arranged asap? It's not a diagnosis that should be suggested and then treated lightly without being properly followed up.

[chinadoll19]

Thank you for your replies. The way things are at the moment and that is causing me a lot of anxiety is not really knowing how I am. The x-ray in hospital apparently showed hyperinflated lungs which does suggest COPD but not definite, I read the treatment is inhalers which can help to put that right, so I am hoping it can be fixed. The thing that really makes me anxious is on my discharge papers from the hospital they said the x-ray showed I had a tubular shaped heart (caused by the hyperinflated lungs), and now I don’t know what that can do to me, no one tells me. The nurse I spoke to at Lung UK was very helpful but couldn’t answer all my questions, she said the heart echo the hospital told the dr I may need was because of this. They talked of doing an echo while I was in hospital and they didn’t leaving it up to my dr to decide if I needed one on his examination and maybe the lung function test. They were happy with my ECG but I just don’t know what to think.

I would be happier if I was examined again after using the inhalers which have improved my breathing quite a bit though not altogether. I just don’t know the present state of things, the discharge notes said I was ‘safety-netted’ to be discharged as I was with 2 week appointment with my dr for assessment, which is not happening. The discharge papers said a ‘working diagnosis’ is ‘possible undiagnosed COPD’.


Apparently they couldn’t do lung function tests for 2 years because of covid and only started doing them last September and there is a big backlog.


What do you people think, should I be at least be able to see a dr to assess my current symptoms? What can I do?

[pulisa]

I would make contact with your GP and explain the situation. See what he/she can fix with the relevant hospital doctors? The GP will have all the relevant discharge paperwork. They have discharged you back to your GP anyway.

[Bronte007]

How are you now - have you any update? Really hope you feel better

[chinadoll19]

Hi Bronte007,
I have just seen your message I haven't been on the site for months. Are far as my breathng is concerned I am feeling fine. I am on an inhaler and hardly ever feel out of breath. Go dancing every week. Still no further tests or know what condition I have, if any, but not worrying any more about it.I do have other problems just come up though. I want to post about that on another thread. Thank you for your interest.