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Feeling hopeless

jamieb977 profile image
13 Replies

Hello everyone, first post. I've had asthma since a child and I'm 43 now but only used a blue inhalor up till earlier this year. Now it's out of control if it is even asthma I'm not so sure anymore since the none of the meds seem to work and in fact some seem to make it worse and my peak flow goes down.

So late last year I had what I presume an exacerbation as I woke up wheezing and it wasn't responding to ventoln. I went to doctors and they gave me prednisone which helped but I didn't feel back to my full self even a couple months later, then I got covid in late Jan this year and since then my breathing has been bad, but not like my typical asthma symptoms, I feel breathless, air hungry like not getting enough oxygen, cant take air in properly.

Finally went to dr's and had blood tests/xray all normal and was put on clenil modulite for a while which helped a bit but was still using ventolin loads, then upgraded to seretide which again improved my breathing from what it was but still have the breathless feeling most of the time and using ventolin 6-8 times a day which takes the edge off but doesn't get clear it up. Tried spiriva but thought it was horrible with the side effects and my lungs felt tight. Yesterday I picked up montelukast and took first pill last night now today I feel worse than usual and my peak flow has dropped by about 40 to 50 down to the 480 mark.

Now I'm like do I carry on taking it till my next appointment with nurse and why are these things not working ??

How can my lungs be this bad when summer before last I used to walk up steep hills do miles a day and not feel breathless and now I feel like a 70yr old with severe copd. It doesn't make sense and I feel hopeless like it's never going to really improve and I won't be able to get back to walking and doing active things like I used to.

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jamieb977 profile image
jamieb977

Also forgot to add throughout all his time I've been having bloating, belching and reflux which is definitely linked to the asthma as when one is worse the other one is too.

Has anyone else experienced this ? I found a case study online where the recommended treatment was strong steroids to reduce the inflammation in gut and lung but my asthma nurse said she can't give me any stronger steroids.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Hi Jamie,

Sorry to hear you've been struggling! This all sounds really difficult.

From what you describe, it does sound like at least some of your symptoms are due to post-COVID issues, and breathing problems around that - especially the air hunger and struggling to get air in (asthma tends to be more often getting air *out*. COVID, like any virus, can set off asthma but it seems like what you describe plus asthma medications not working that well might mean the bulk of it isn't due to asthma. Asthma itself can also cause unhelpful dysfunctional breathing patterns. This post may help to tell the difference (it also includes anxiety which is definitely NOT the same thing or always the cause of dysfunctional breathing patterns, but it can overlap where people are anxious as well): healthunlocked.com/asthmauk...

All this may not be asthma but it can still really interfere with your life. And it doesn't sound like anyone has given you any advice on post-COVID breathing exercises or any kind of support? Is that something you can bring up with the nurse you see - say you feel like it might be due to COVID and can they help? I think there are more options available now for post-COVID effects and you might well find that tackling that really helps.

These links may help with breathing exercises you can try: oxfordhealth.nhs.uk/wp-cont...

And this page may help - I know it was nearly a year ago but it sounds like you still have aftereffects: yourcovidrecovery.nhs.uk/po... The rectangle breathing can be very effective with COVID and after. Others here should be able to help with what they found worked for them in a similar situation. You could also ask if you could see a respiratory physio, though they can often be hard to access and there may be a bit of a wait.

For asthma questions you may find it helpful to call the asthma nurse helpline when they reopen on Tues 3rd: Call us on 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm

I hope this helps!

jamieb977 profile image
jamieb977 in reply to Lysistrata

Thank you for taking the time to read and reply to my essay this morning, yes covid was very bad for me caused breathlessness, gi problems, dizzyness, palpatations and more for months afterwards, the bulk of the symptoms have gone except the breathing and still some gi issues. I did get referred to a long covid clinic at my doctors but basically he said yes it sounds like you have have long covid and to keep on with seretide, I also take probiotics and antihistamines daily. I will certainly look at the links. I don't think I breath correctly and when I was so ill my anxiety was crazy, some days I thought this is it im going to die very soon.

Karenjaninaz profile image
Karenjaninaz in reply to jamieb977

Jamie, there is an online longcovid breathing support moderated by Respiratory therapy doctors.

Go to pulmonary wellness.org and click various links: education is one of them and covid support.

(Retired nurse anesthetist here.)

Poobah profile image
Poobah

Jamie it sounds as if you've really been through the wars. From what you say, including the belching and bloating suggests that breathing exercises for long covid may be beneficial. I would definitely recommend a visit to a respiratory physiotherapist specialist, if you can afford to go private then you may get a more prompt appointment. However, your doctor can refer you to a NHS respiratory physio but there will be a waiting list.

My respiratory physio checked my inhaler technique as well as my breathing technique, which was rubbish and certainly wasn't helping. They basically taught me the Buteyko breathing technique and I've found it extremely helpful and it requires practice and commitment.

I'm currently fighting some respiratory bug and so I tend to mouth breath and this leads to bloating and belching. Mouth breathing is so easy to do but it overwhelms the lungs and we end up feeling air hungry. We're designed to nasal breath and when we do it 1) slows down the air, 2) warms up the air, 3) filters stuff out & 4) introduces nitric oxide to the mix. This will enhance the gas exchange in the lungs, both in & out. Nitric oxide is key and we miss out if we mouth breath and that applies to when we sleep also, we awake tired and depleted.

Here's a very short video from Patrick McKeown on YouTube (he's a qualified Buteyko practitioner) with a couple of simple exercises. But you can find a much longer video that he's made about long covid if you're interested, it's around 90 minutes long.

youtu.be/A-wPQWLatv4

Wishing you all the best.

jamieb977 profile image
jamieb977 in reply to Poobah

Thank you, I use a spacer for my inhalors and have got the technique but I don't feel I am breathing right as my reply to previous post said as well, I think when you feel air hungry you mouth breath automatically to sort of gulp more oxygen down i guess. I will look into the exercises

This morning was a rant, like I said I've has asthma all my life but was mild really and not properly held me back from sports or anything really and to go to this where I dont feel like I've had a normal clear breath and a day where I wake up full of energy ready for the day for a year it feels hopeless, I know there are people much worse than me so don't want to be woe me, I'm just not used to living with illness I guess

Poobah profile image
Poobah in reply to jamieb977

Your feelings are quite understandable and going into your current situation so quickly isn't fair or easy to accept. But you sound a determined individual and that will hold you in good stead as you work out what's going on and what you need to do to make the best of what life is throwing at you, plus we're always here to rant with.

If you're interested, a VitD3 protocol Facebook group has invaluable information about getting your levels up to optimum and early covid research has indicated that good VitD levels are great for the immune system. The group files hold all the necessary info. "Vitamin D & Co-Co-factors. UK"

All the best. xx

Popplemoggy profile image
Popplemoggy

Morning Jamie,This sounds just awful for you.

My reason for responding to your post is that a lot of what you have mentioned resonated with me.

My initial response is to ask if you have been diagnosed with GERD, and if you have are you taking appropriate medication to keep it under control? If you haven't had investigations re Yr reflux, bloating then I would urge that you do so.

As you say, and it seems from the research that I have done that Asthma and digestive issues can clearly be linked and there is no doubt in my mind that uncontrolled GERD symptoms can increase and cause additional issues with breathing and asthma related issues. I take Easomeperazole which really helps to keep my reflux under control and reduces the chance of acid expiring into my lungs. There are quite a few self help things you can do to help with the reflux and bloating which may in turn help with your breathing issues in the meantime.( have a look online at self help suggestions)

With your Asthma it is finding the inhaler combination which works for you. Are you allergic to anything, which may also be exacerbating your breathing issues, this may be an avenue you may wish to explore at some point in time if you haven't already. You mentioned you are taking Seritide I was wondering which dose you are on at the moment?

I have found during my lifetime of having Asthma that I have had to change inhaler combinations at certain times. I am currently taking vebtolin and seritide.

Having had covid myself I have found it has taken me longer to regain my usual lung function, so it may be you have an element of long covid and/or you inhaler combination or dose isn't quite right. Having to take your blue inhaler daily and so frequently needs investigating.

If Yr symptoms are not improving you should see your GP again and ask to be referred for further and more extensive lung function tests and relevant xrays, scans etc, if you haven't already had them. Try not to leave it to long.

So sorry this is such a struggle for you. Please do keep pushing to get Yr health issues resolved, which I know isn't easy when you are not feeling well.

I have had to push to have my own health issues taken seriously and now I have I know what I am having to deal with and manage on a daily basis. Knowledge is power and can allow and help you to take control of your life again.

Sending you hope and strength and very best wishes.

flowerjunky profile image
flowerjunky

sorry to hear you are feeling so 💩

Have you spoken to your dr /asthma nurse about the gi / gerd symptoms ? They can often be linked with asthma and may be contributing to your symptoms.

My asthma deteriorates (cough and wheeze worsens) when my reflux plays up and many of us asthmatics are prescribed stomach acid reducing meds which can help.

Perhaps speak to a pharmacist to see if you can try Gaviscon advanced or something similar to control the bloating/burping and see if this helps.

You could also try raising the head end of your bed on blocks or using a foam wedge or pillows to prop you up a bit at night to reduced acid reflux. Avoid spicy, acidic food and eating meals late as well.

Good luck and I hope you get things sorted soon.

Karenjaninaz profile image
Karenjaninaz in reply to flowerjunky

I found, certain acid blockers like omeprazole - or any “azole” gave me so much wind I could hardly breathe. I have success with famotidine which has a different mode of action.

ChrissieMons profile image
ChrissieMons

Honestly, it isn't hopeless. You've probably done the best thing by posting on here. As there are so many different experiences of asthma here, people can direct you to the best help, and reassure you that you're not alone. If you want to try Nexium, (over the counter, v. pricy)that might help the reflux, or your GP might prescribe you omeprazole or something similar.

Happy New Year!

Superzob profile image
Superzob

Time to request a respiratory consultant appointment, I think. Throwing random medications at you does not seem particularly scientific! The problem you may have had with Spiriva is that it is a dry powder, and some people are allergic to it; I’m the opposite and allergic to the aerosol in the conventional inhalers. GERD and post nasal drip could also exacerbate asthma symptoms, and a GE consultant should be able to advise on the former; in the meantime, you could try anything which reduces stomach acid, including simple indigestion tablets. But I think a scan of your lungs would be a good starting point. Hope you find a solution.

strongmouse profile image
strongmouse

Definitely worth talking to doctor about GORD / GERD. Reflux definitely exhacerbates asthma symptoms as the acid from the stomach irritates the throat and can irritate the upper respiratory tract, especially in the morning after a night's sleep or after a meal. Medication can help with this and if needed an endoscopy can be done to examine oesophagus and stomach. Taking medication will help.

If you have post-nasal drip then it is worth considering if you have an allergy as well as good advice above from others.

It can take a while to find out the right treatment for you, but there are good avenues worth looking at. All the best.

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