Please help me breath. I'm desperate

[katiestorey85]

Hi all, Sorry for the long post I really need some help and support as my GP isnt really moving as quickly as I need. I'd love the hive minds thoughts on this as i am DESPERATE. I've suffered on and on with indigestion my whole life. Around early 2020, I ended up on Lansoprazol 20mg per day. In March 2020 I developed some bad breathing issues, initially along with alot of other people, Dr's thought it was respiratory and I was diagnosed with asthma and put on an Inhaler which did very little to help. At this point I was also on 40mg of lansoprazol. For 10 months, I struggled with this awful symptom of gasping for breathing pretty much 247 and it was the worst time in my life as I just thought I'm going to stop breathing. It was always there but got worse and came over me in waves a few hours after I ate (by this point I'd cur back on pretty much everything as there was nothing I could find that provided relief). I felt like I throat was closing up, the literal worst feeling ever! I saw a respiratory, cardiac, ENT and GI consultant. I was diagnosed with a small island of Barretts Oesophagus, a lax LES with significant reflux. I had an ENT check down my throat and they said it was unremarkable. I was taking PPIs through all these procedures. I was then referred for PHs studies which I was sat in massive wait list on the NHS and one day it all just went away, so because it did, I dropped out of the queue. I then saw an ENT who told me I had LPR and to do the usual with gavscon, low acid and ppis etc but because I wasn't suffering then, I didn't really oush the matter.

It was hands down the worst time of my life, I was on inhalers, montelukast and 40mg of lansoprazol and nothing touched the air hunger at all. It feels like my throat is closing up! After 8 months, it pretty much went away. Skip to 2 weeks ago and it's come back again with a vengeance. I was on 40mg of omeprazole as when I got pregnant with my daughter, my ppi was switched. My GP has just moved me to 80mg of oseomeprazole but I cannot do another 10 months not breathing! You name it, I've tried it, breathing exercises, eating with my head below my LES in morning to stregthen LES, the usual gastric protocols, sleeping raised up on left and I don't eat after 7pm, using Gaviscon Advance after meals and eating small meals, the acid watcher diet but any food seems sets it off, even my thyroid medication. Even walking is a challenge. I even switched to alklaine water to try and get rid of pepsin but thats not worked either. Digestive enzymes, ginger shots, tumeric tea. The only slight relief I ever get is if I suck ice cubes which makes my throat feel clear again but the minute I stop sucking ice cubes, it comes back. Same with if I burp, that gives me a second of relief too. I literally feel like I am suffocating all the time. I've bought some bentonite to see of that helps but I'm worried it will make me poorly and no idea what to do with it! It's better in the morning, I can have a few good breaths when I wake up but then the minute I move, it's off again. It keeps me awake at night as I feel like I'm drowning. I also wake up with a really stuffy nose and post nasal drip and do regular nasal irrigation during the day. I cannot do this for much longer as I have a toddler to look after and a job. I can't even say my anxiety is through the roof because of it, as I know it's not my lungs and I AM breathing. I am UK based so have limited options in terms of seeing a functional doctor and the NHS won't test for allergies and I'm not sure how reliable the private UK based allergy companies are as the NHS say they're not reliable. My GP won't refer me back to GI and they're pretty useless anyway. Please, please, please help. I am SO desperate.

Yours Desperately trying to breath and get on with life.

[im989]

I’m sorry I can’t offer much help but just to say I’m also really struggling with the breath issue from reflux particularly at night when I often dream I’m drowning. Thought it was apnea but could well be this

Anxiety can cause awful breathing issues Could it be the ppi are making you anxious without you realising and then your breathing is more erratic because of this?

Dr Louise Oliver has a lot of advice on breathing online. Worth a look

Good luck

[katiestorey85 in reply to im989]

Tbanks so much for your reply. I think part of my throat is inflamed or covered in acid, so it's sending some kind of signal to my brain to say I can't breath. I'm over the anxiety if it all as I had to deal with it for such a long time before. I'll have a look at Dr Oliver.

[Jumpey]

I'm so sorry you are suffering. I have no specific advice other than to offer support. As you say you ARE breathing. Acid reflux can damage the lungs. Acid aspiration has caused my lungs to be damaged. I now have interstitial lung disease. This manifests as breathlessness on exertion. Your symptoms sound very different. Hang on in there and don't give up hope.It improved before and will again. What about seeing another respiratory specialist? Can you afford a private consultation?

[katiestorey85 in reply to Jumpey]

Thanks so much for your reply. I can't really afford another bout of private doctors. I feel an ENT or GI may be a bit better as everytime the GP listens to my chest they can't hear crackling and my blood oxygen levels are absolutely fine.

[hjskev]

That sounds awful. I have the same issues but not so bad. I find chewing gum gives me some temporary relief.

[katiestorey85 in reply to hjskev]

Maybe I need to get some gum! I'm worried of the mint taste though

[hjskev in reply to katiestorey85]

I'm ok with mild flavoured chewing gum. Some toothpaste though I can't use. I get a burning sensation in my mouth with the reflux and mint really irritates it. I think the thing with chewing gum is that it generates lots of saliva which helps. Part of my problem is dry mouth.

[Washington1]

I started having this kind of trouble early 2020, but lansaprazole made things much worse for me, so I only took the ppi's for a few days. I could barely eat, lost too much weight and would be up on all fours during the night trying to get some breath into me. I agree that it's awful! After many months it gradually eased, although never went away. Then early December last year it came back with a vengeance and the tightness in my stomach was so bad, I spent weeks and weeks feeling like an elephant was standing on my stomach. I've lost a lot of weight again and been feeling awful.I had an endoscopy that showed gastritis and slight weakening of LES, but not enough to cause all my issues. I've been having acid reflux every night since December too.

What I've learned, although I am also still looking for answers.... it might be I have a problem with low acid instead of high acid. You can apparently be referred to have a type of endoscopy where they test the pH of your stomach. High or low acid result in the same symptoms as with low acid, the stomach overcompensates. It is not good to be on omeprazole long term and I'm very surprised to hear you are on so much. I would pay to see a private nutritionist. I have had gut dysbiosis in the past and recognise similar symptoms going on, so I have been on very good optibac probiotics for months. They can take a few weeks to kick in, but I believe they are helping me. I cut a piece of organic ginger and have 1 -2 cups of ginger tea a day. I'm looking into getting an iqoro to see if it helps with the reflux. They also tried me with inhalers which did nothing. They gave me a peak flow meter which showed that my breathing was way under par. Worth looking up immobile diaphragm. Also, not sure if this would apply to you, but I'm currently going through the menopause, which can cause some gnarly rarer symptoms for some women.

I hope something here will help you and I hope you get some relief soon x

[katiestorey85]

Hey, thanks so much. I've been hesitant about ppis too. I was initially put on the for gerd symptoms, the severe pain and burning sensations and they worked for that, the ppis keep my heart burn jn check as without them, anything gives my heart burn. I spoke to my gp about the long term use of ppis and he was not phased at all. Said I could stay on them for years if I needed......

Some days I do find ginger shots helpful and then other days not. I cannot put my finger on a trigger as it just seems anything I put down there makes it worse. I'm hardly eating at the moment. I do have an underactive thyroid and we are known for low stomach acid, so maybe I have really low stomach acid but I'm not sure what to do as if I come off the ppis, the heart burn is unmanageable. I really feel like I'm just stuck!

[Washington1 in reply to katiestorey85]

I really feel for you with all that you are going through. I would seriously look into paying to see a nutritionist with experience in gastric issues. Treatment for low acid is different for treatment for high acid. Although PPI's will reduce the immediate acid, if you are suffering with low acid I'm not sure you will get out of the hamster wheel whilst taking them The NHS are brilliant at many things, but there are gaps and these areas aren't so readily addressed, especially at a time when the NHS is understaffed and still catching up. Thing is your GP will be very good at a number of things, but they are a general practitioner. They are not specialists. Omeprazole is known to cause damage if taken long term and it is worth asking for blood tests, including magnesium and vitamin b12 as PPI's can deplete your stores. Can you ask your GP for an endoscopy referral specifically to measure your stomach PH levels?

I think it is worth looking for a reputable nutritionist. One who knows their stuff, will be able to advise you and help get you out from being stuck.

Of course, I am not a doctor at all, but just hoping that something I say will be of some help. From what you've said, I wouldn't come off the PPI's without any medical/nutritionist help, but I believe there is a way forward for you. I don't have a huge amount of experience with underactive thyroid, but clearly there is effect on hormones, so you are juggling a lot. I saw a nutritionist for some time years ago and they helped me get rid of all sorts of symptoms. I also ended up with the most glossy hair I've ever had whilst taking their advice.

I do know how desperate it can feel when you are unwell, exhausted and desperate for answers, so just sending a hug your way today x

[ParkSchool5]

Hi, so sorry to hear how much you are suffering. Your symptoms sound very much like chronic anxiety. I also suffer with anxiety, reflux, gastritis and Hiatal hernia which cause the horrible symptoms. With anxiety, your mind is expecting the symptoms to occur, so they do. My chest and stomach tighten and I feel I can't take a deep breath, only shallow ones. Your could try asking your GP for something to help relax you, short term, and see if that helps. Or CBT. I tried that (after a six month waiting list) and it did help talking to someone one to one. The other thing it may be is long covid. I don't know if that would show up on a blood test. I really hope you find some relief soon. Regards.

[katiestorey85]

Thanks for your reply. I really don't think it anxiety as it just seems to get worse when I eat. When I first happens, I'm not expecting it at all, obviously when it happens day in and day out you just accept that it's there if that makes sense? I take melatonin at night anyway as I've never been a good sleeper. I did have long covid in 2020 where I actually got diagnosed with vocal chord dysfunction but I don't think that fits as I get short sharp episodes, it's there all the time if that makes sense. Thanks for taking the time to respond. I really do appreciate your support.

[Yologgg in reply to katiestorey85]

You know what’s funny I just had Covid a couple weeks ago and now I’m experiencing the same issue as yourself with the acid reflux I also just recently quit smoking 1 month ago n I still experience the breathlessness feeling so I can agree with you my doctor keeps saying anxiety and stress is to blame but it is driving me mad because I feel as if im going to die not fun

[Treetop33 in reply to Yologgg]

I got a major gastrointestinal inflammation or something (end to end!) along with breathlessness and extreme fatigue after getting Covid last November. It's quite common, not that people are told that!

[ZiggyDiego]

it can be acid reflux plus anxiety plus respiratory issues all at once. Important to take all of them seriously; I’ve had to. My first issue was respiratory- coughing up blood. Eventually diagnosed with vasculitis affecting multiple organs. Given prednisolone which damaged the valves in my stomach so got reflux as well. By the time I got to respiratory doctor I was v anxious. He explained that reflux comes up as gas as well as liquid, irritating the upper airways and causing cough and other issues. I found that helpful to know. I’m on pantoprazole 40mg and peptac (gaviscon) for the reflux, inhaler and constant antibiotics for lung damage. For the anxiety I take breathing exercises very seriously, doing them every day and it really helps. Plus all the other things that are recommended for good mental health. Good luck.

[Inominate]

I feel for you, this is a horrid condition. you have an LES laxity, so acid reflux into your throat and sinuses is probably the causing problems . This would be made worse by pregnancy and running around picking up a toddler and their toys, anything using the abdominal muscles. Nhs says If medication and behavioural changes don’t make a difference then surgical intervention is what might be needed,. But only eventually after trying for a while. It’s not an easy option. Do not underestimate the dramatic effect of stress on acid production though - do you have 20 mins a day to do some targeted relaxation/meditation? Often we don’t know why it gets better or why it gets worse, but I would stick to convention wisdom, evidence based medicine. Some people Say you might have not have enough acid, but there is no medical evidence for this. Taking apple cider vinegar is likely to activate the pepsin enzyme that is also refluxed from your stomach and this will break down and damage the tissue in your throat, which you do not want. Good luck

[Braveheart77]

Sorry this is a short reply. I suffered with breathing problems for 10yrs. I didn't think it was connected to having a low thyroid. I spent years not being able to breath and it would come on at any time and take months to go . I really understand your pain For the last year I have been taking probiotics and eating food high in probiotics such as kimchi kherfe anything good for the gut. Occasionally I will take a anti acid if I feel the burning in my tummy. Please try eating these foods it may just really help you how it helped me .