Breathlessness/ air hunger/ pulsatile tinnatus

[Zeusee1]

Hi,
Looking to talk to people in the same boat to see if anyone else has gotten to the bottom of their breathlessness/pulsatile tinnatus? I’ve been breathless more or less all the time for about 20 years. Had a few tests here and there one of which showed asthma of the smaller airways. Tried a few different medications at the time which didn’t do anything so stopped that and no further treatment since. I don’t think I’ve had my b12 checked or much else in terms of vitamins but had iron done ( not recently) told it was fine. I’ve just been accepting and living with it in silence but I honestly cannot take it any longer and I’m going back to the Gp. I’ve sorted of just accepted that’s just how I am but now I’m telling myself that I shouldn’t just suffer. I’m actually starting to wonder if I have a breathing pattern disorder but I’ve no clue as I can’t tell if I’m breathing correct or not but I do sort of feel like I’m always tensing or sucking in. Don’t know if that’s just me looking for answers that aren’t there? It’s tiring trying to figure it all out I’m driving myself crazy. The air hunger feels like it’s coming from bottom neck/
collar bone. Fobbed of by Gp regarding the pulsatile tinnatus but want to also go back for that it. Fed up of just just accepting it. Having both the things together is so annoying. Thanks for reading 💖

What was your last ferritin level?

Many people are marked ‘normal’ as low as 20, but nice guidelines say to treat if under 30. Low end of normal range isn’t optimal.
I had terrible air hunger even with a level of 32. Optimal ferritin for a woman is up towards the 100 level, but many Drs go by labs, not symptoms. Look on the nhs app, or ask reception for the last figures.
low Vit D causes breathlessness too, and most of the U.K. are a bit deficient, especially over winter, due to our weather.
You should get b12 & Folate checked too, as well as your thyroid.

You need your blood test results and the labs reference ranges so you can see where you sit in their range. It took me a lot of research, and suffering, before I realised that the difference between normal and optimal for the above made a huge difference to my health.

Thank you for replying. I actually don’t know my results but I will make sure to get a copy of the last ones I had done and the ones I’m wanting to get done again. Did you medicate yourself based on your own research? Or did the GP flag it up? I asked the GP if I could has a b12 test and they said no and that b12 deficiency was all social media propaganda. It’s that sort of attitude that puts people off going to the doctor.

Look at this poster - does much of it fit? It’s a rare enough condition that some GPs have never come across it.

I don’t have the noisy breathing and constant clearing. Thank you for sharing. I’ve also never heard of this.

Could be silent reflux (laryngopharyngeal reflux) I get this. I can draw breath in and out of lungs ok, but there’s a feeling of breathlessness. I get episodes of it, it’s managed with restrictive diet and ppi. It gets worse if I attempt to compensate for it by over breathing, sort of short gasps. It’s very different from the one time I had a chest infection with flu, then I almost called an ambulance as really couldn’t get enough air into my lungs.

edited to give correct name for condition.

Possibly as I have had issues with reflux. It’s definitely a feeling of tight chest / stomach. I can physically draw breath in as you said. Feels harder to breathe during exercise and even talking. Do you take ppi’s only with symptoms or as a preventative? Did it actually stop? Thanks for replying

Have you checked with an oximeter your oxygen sats? That might tell you if it is an airways problem or something else. It might give you peace of mind if you are feeling breathless. I use one all the time. I have an illness called AATD which has caused COPD. If my oxygen sats drop below 94% I have to get help. Ventolin type inhalers don’t help with COPD. It’s one of the ways they distinguish it from asthma. Oximeters cost about £20 on Amazon.

Thanks for the reply, I don’t have one of them but my
watch measurements read from 89-100 but I don’t know how accurate that is. I will get an oximeter.
Thanks

I take ppi’s preventatively and always will as I have slow motility and food doesn’t move through my system fast enough. However, these episodes are intermittent and tend to happen if I make a mistake with reflux provoking food, or lying down too soon after food. - I sometimes feel the reflux coming up into the back of my throat. From memory my gp said the oesophagus gets irritated/ inflamed and this can cause the horrible breathing sensation. She said it’s not uncommon for reflux led breathing issues to be mistaken for a lung issue. I’m under gastroenterology for this and other digestive issues. Was checked out with chest x rays etc years ago. Now I know what it is, it’s very familiar so less panic inducing. It gets worse with exercise and also when bad enough, when talking. It can last a while then resolves again. Years ago, panicking I bought one of those things you breathe into to check for asthma (it’s plastic and was relatively cheap.) I sometimes use it even now to calm myself down. The results are always normal.

Have you had an endoscopy. Although not a great deal ever shows up on mine. You could ask a gp about trying a course of ppi’s see if it helps. Famotidine particularly at night can also help.

Thanks, I had a failed endoscopy it was horrible. Not plucked up the courage to go back. I have actually recently just bought some over the counter ppi’s. Will ask the gp for different ones to see if it makes a difference.