Can't believe I have to go through this! Breathing, etc.

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Indianmist

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Benzos,

Wow, I could have written this because it hits so close to home! The breathing problems, multiple trips to the doctor and the ER, hernia, numerous PPI's, and the acid reflux. It's so bad that I can hardly sleep anymore because of the chronic sinus comgestion, and throat swelling. As soon as I drift off to sleep I startle myself awake again.

I have been diagnosed with LPR, Sleep Apnea, and a severe Vit D deficiency, but knowing that doesn't relieve the daily torture that I've been going through. I have Asthma inhalers that I use, but they do little good. I'm both physically and mentally worn out from this, and not sure how much more I can take.

I can't begin to tell you how many diagnosis' I've had over the years from Asthma, Pulmonary Hypertension, to Myasthenia Gravis and so far none of them have been correct.

Usually when they look at my throat it's swollen at the opening of my esophagus, so I know that swelling is somehow related to my breathing issuses. From the start I've told the doctors that the breathlessness originates in my throat. As I sit here writing this, I'm struggling with the swelling and breathing. My ENT's did tell me that the breathing issue is related to the acid reflux so your doctors were not honest with you.

I hope we can find a cure for this soon, because I'm at the end of my rope.


Michelle
 
Sorry Michelle and others. I have the same thing. Its scary and we feel so bad and are tired of dealing with it. I have allergies and reflux and they each aggrevate each other. My congestion was so bad I had to get a steriod shot. It is really helping when it comes to the congestion. But I still have reflux and the kind that gives me a lump in the throat and lots of mucus. ugh! Seems I have to watch everything I eat and stay on the Prevacid. Its just always something. Hang in there! Get better everyone!:angel:
 
I just can't believe the amount of walls I am coming up against with my health problems.
I was diagnosed around 3 years ago with acid reflux...a short time later with a hiatus hernis but a very small one (2 cms). For at least the last 18 months my breathing has been my MAIN symptom along with choking, not being able to swallow. I rarely get the chest acid pain, occasionally I do get vocal cord problems though. PPI's later, gaviscon, OTC remedies, change of diet, 3 years of meditation and my main symptoms still are undiagnosed! I can handle having a sore throat with acid. I can handle elimintaing stuff from my diet and avoiding stress as much as possible and all that gaff.

What I cant handle is going backwarRAB and forwarRAB to doctors over 18 months of day in day out:
breathlessness..sometimes I cant walk up and down the stairs even and it feels like my chest just wont move (despite the fact that I do diaphragmatic breathing exercises and have been doing for an age now with success.)...causes dizziness, spacey feeling.
weakness/lethargy
blurred vision
bloating every time I eat and dizziness within 30 mins of eating.
irregular heartbeat
IBS
suddenly cant swallow...like while I am watching tv or reading a book...normal everyday stuff. Like the action just stopped dead in it's tracks. I have to sip water slwoly to make it come back.
choking on food...sometimes bad enough to eat only food that's been blended.
disgusting constant huge burps that happen with every drink or little bit of food I eat...prbably around 100 burps at least per day. Not very feminine! (I cut out caffeine completely)

It's the breathing and choking that's really really getting to me now. Its been so long every single day and I must have seen at least 5 general medical doctors and around 3 or 4 in the A&E dept. They thought it was my heart...went through an angiogram, loaRAB of tests to be told I had heart disease then I didnt..false positives. I was told I probably had ME! I dont, I dont think so any way.

I have become half a mum and half a wife. I'm 'unavailable' a lot of the time because I feel so ill and I am not a big baby either ( I've had four children and around 6 operations in my life). I did suffer with anxiety years ago but this is nothing like that, nothing at all. This is entirely physical and of course it worries me some the more it goes on but I am aware not to get too stressed out about it.

After 18 months and still no diagnosis and docs looking at me like I am some kind of hypocondriac I have had to search for a doctor miles away that actually believes I have non acid reflux and I see him noveraber....but what if I dont have that and my general doc who agreed to refer me doesnt hold out much hope that it will help! Then what?
I have asked all these docs ...is my breathing connected to my acid problem? Not one said yes or probably or could be. Most said ..no you are not wheezing and you would get pneumonia. A few didn't even think any breathing problem could be remotely related to an acid problem. I have just hit brick wall after brick wall. Interestingly none have put it down to anxiety though either and that's the easiest thing to put things down to.

I can't afford private care. I rely on the good old UK NHS and boy is it slipping. I am well aware that not one doctor I have seen is remotely bothered that I am spending half my days having to keep lying down ( well propped up) and that some weeks are so bad I can hardly eat. No one is bothered that after all this time I am nearly a prisoner in my home because of the attacks that happen frequently throughout the day.

I am having a moan really but I am just at the end of my tether with all this. If I had a concrete asthma diagnosis it would have been sorted by now. I feel like I am in this huge grey area that has every doctor I have seen scratching their heaRAB and sending me home to remain exactly the same with no answers to it all. I have been told what it isnt but no one wants to say what it is.

Has anyone been through this? What did you do? Can you relate to these symtpoms? What worked for you. PPI's seem to be doing nothing for me and it continues. I am not due another endoscopy and anyway you dont get called up for one you have to ask.

Thanks for your interest and sorry it's long
benzos
 
Oh, my God. Bile reflux. That's EXACTLY what I'm going through. It's so obvious now that I know. Thank you so much for telling me about this, MontainReader.
 
I'm right there with you. As far as I've been able to tell, there really is no "cure" for the reflux that affects breathing. The trick is finding the right corabination of treatments that help get things under control. I've been going through the same thing over the years and while I'm doing better, I still struggle. I bounce between my Primary Care Physicians, a Gastroenterologist, an ENT and a Pulmonologist. They don't really talk to each other that well so I try to make sure that I get reports from any testing to all the others and carry a list of my meRAB and procedures that I provide them for update each time.

I found a corabination of treatments that helped for a couple years, but eventually stopped working. I had a fundoplication that worked for a while. My tests so far show it is intact, but my symptoms have been back. I go for another 24 hr pH test tomorrow. This time, I'm just doing the one above the UES because of my vocal cord inflammation my ENT noticed during a scope. I had an EGD last week and am awaiting some biopsy results and I go back to my Pulmonologist this week. I've also recently had a Barium Swallow, chest x-rays and a chest CT. It seems like I've gone through this same cycle about every 2 years. This is my third go-round.

It really does wear on you and affects your quality of life. I is even more difficult because those around you really don't understand what you are going through.
 
I can totally relate to you with regarRAB to many of your areas. I live in the US though. I don't completely have my own answers, but have learned a lot over the last 9 years of reflux suffering. I've figured some things out and am very frustrated with others. I can share some of what I've learned personally though.

Small hernia's usually aren't of concern for treatment by specialists. Most hiatal hernias are "sliding" and aren't there all the time.

The acid reflux is physcially caused by a lower esophageal sphincter that isn't working properly. For LPR, which it sounRAB like you have, the upper esophageal sphincter doesn't close properly either. It is the loose LES that allows the refluxing to occur. It takes a pH test and Manometry to measure the functioning of the LES/UES and to see the severity of the refluxing. For LPR, an upper probe should be used as well.

The most common "help" for LPR is taking the PPI's twice per day. It helps some people, but not everyone. The vocal corRAB are extremely sensitive to acid and it only takes a minute amount of acid to cause tons of problems.

I have asthma and acid reflux that both give me a primary symptom of a chronic cough and difficulty breathing. I had reflux that got so bad that I needed emergency treatment for asthma. This was despite being on the reflux diet, making lifestyle changes, taking PPI's twice per day with OTC supplementation and taking several asthma meRAB. I fought this for years and it kept getting worse and worse. It finally took me finding a corabination of specialists who I went to and then made sure all my reports were provided to the others. I see a primary care, an ENT/allergist, a Gastroenterologist and a Pulmonologist. It was actually my Pulmonologist who ended up pushing for surgery because my breathing was so bad from the acid irritating my lungs and triggering my asthma. I had pH testing, manometries, EGD's, PFT's, Modified Barium Swallows/esophagrams, chest x-rays, TB tests, etc... multiple times over the course of a couple years which confirmed my reflux had gone from severe to extremely severe despite intensive treatment. My reflux actually had become literally life threatening. I decided to have a laproscopic Nissen Fundoplication. Post-surgery, I noticed an immediate improvement. I would go through with it again in a heartbeat despite the seriousness of the decision to have surgery. Fundoplication has a high success rate for people who have reflux with breathing symptoms. Higher than with other reflux symptoms.

Unfortunately, my cough is back. I'm starting the cycle all over again trying to figure out if reflux is involved or not. If it is reflux, I don't think there are any other treatment options left for me to try.:dizzy: I'm still on Dexilant (60mg dual delay release PPI), still sleep on an incline, still watch my diet and still practice the lifestyle changes I made years ago.

This can have a really bad impact on quality of life. I struggle to function will at work with all this happening and I really need to work to support myself and keep my insurance.

BTW, I developed IBS after a bad reaction to one PPI that I was only on for a couple weeks 2 years ago. I think the "spacy" feeling sometimes comes from not being able to get enough air in when having the constant "attacks". I've had a rapid resting heartbeat (95-105 bpm) for years and not one doctor seems to be concerned. I was diagnosed with anemia last week. I'm still trying to figure out if it is at all connected to these other problems.

I'm happy to talk if you have any further questions. It is tough because there really isn't any answer.
 
I had an appointment with my Pulmonologist today. He really thinks it is acid reflux that is aggrevating my lungs and throat thus causing the breathing/coughing problems. He said that the Prednisone actually aggrevates the acid reflux, thus triggering the asthma/ lung irritation/ throat irritation. It becomes a viscious circle of treating symptoms vs. underlying causes. He said for people with these types of symptoms, Prednisone should only be taken if peak flow readings go below about 175.
 
oh boy, all this depresses me. I feel for you all, I have been suffering from all this gastric stuff since July of this year, nausea at times, a mild burning sensation in my esophagus, a pain in my upper abdomen and a mild dull ache in my left upper back, I feel tired, if I eat anything that is not oatmeal or broth or even peanut butter and jelly sandwiches I end up with bad gas, stinky hot gas and pain!!! Right now I feel nauseated and crappy, drinking broth for lunch. My endoscopy and colonoscopy were normal! On nexium, zantac, carafate......I just want to eat again, nomal food.....
 
Try taking aloe vera of any kind. It is not a drug and helps a GREAT deal with GERD. I was on pills for some time and was still having trouble. Looked on the Internet for something natural and found something that contains nothing but aloe vera. What a life saver it has been. Good luck.
 
TEdd,

I've gotten the steroid shots too and currently weaning off of Prednisone. When I was on 60 mg a day, the congestion in my sinuses was none existent, now down to 7 mg. The lump in the throat is the worst isn't it? Mine moves from side to side, depending on which nostril is congested. My ENT told me that it's all connected. This causes me so much anxiety!



MountainReader,

What you've said is so true, it really does effect your quality of life. Family and frienRAB truly don't understand. I get everything from " you need to exercise more" to "just change your diet" to " try this or that herbal remedy".
It seems as though we are seeing the same groups of specialist - Pulmonary, Gastro, ENT, Primary, and the worst is when one of them comes along and try to pin everytrhing on ANXIETY! Frustrating...

I did notice one thing during my Barium swallow, food/liquid tenRAB to sit in my esophagus before moving downward into the stomach. I will check into that further as a posible motility problem.

Are either of you currently doing Voice Therapy??

Michelle
 
At least you are getting some answers!

I didn't know that, about steroiRAB provoking reflux, but it makes sense. I'll have to remeraber it.
 
Geeez you guys in the US must be years behind the rest of the world in treating acid reflux!

In Australia, you see a Gastroentoroligist, get a script for some Losec and you will never have a pain or discomfort for the rest of your life!
 
Hi and thanks for that reply. Sorry you are having a tough time too.
As soon as I contacted this other doc ( a professor) away from my home town he decided it was non acid aka a bile problem. Now the way I see it whether it's bile or acid apparently the damage can be the same. BUT there is no point taking PPI's for a bile problem I am told...hence why I dont really feel any different on a ppi. My vocal corRAB however get affected quite regularly and I get a very gruff voice. I have noticed this vocal cord thing worsens at times of any stressful thing I am going through...anything remotely stressful, like if I have to reprimand one of my kiRAB for instance with a raised voice!!! Yes! Just that can make my vocal corRAB worse.

I am careful what I eat, have spent a lot of money on books on the subject of self help for all this. No one has mentioned seeing a pulmonologist to me , maybe because a) I am not wheezing and
b) I had a lung capacity test in my surgery and it seems my lungs have the acpacity of someone a few years younger! I know...the mind boggles.

I could not hold down a job with this I dont think but my husband works. I get out of breath and tired after a few mins of shopping and have to find somewhere to sit so I doubt I'd be able to last out a days work. I have had my gases checked a couple of times just after a partcualrly bad attack and both times they were healthy 98% 99%. So! I am getting enough oxygen and that has assured me I shouldn't worry too much but it doesn't take anything away from the fact that when it hits bad which is at least once a day for a while, I feel like I can't go on. Thats how it literally feels...like ..how can I continue like this? I enjoy being alseep and thats all I enjoy these days. Thats sad. Sad for my children and husband too.

They messed up my referral to see the professor about the non acid connection with breathing difficulty and now it might even be Deceraber before I get to see him. I couldnt imagine having to wear a ph monitor (through the nose?) for 24 hours. I have only one working nostril, the other has an almost total closed septum...I would have to spend all day with my mouth wide open. Lol.
Any thoughts appreciated.
 
Until recently, my primary reflux symptom was a chronic cough and flaring of my asthma. I get some hoarseness, but it can also be attributed to the constant coughing.

My mom has LPR and her ENT is strongly encouraging some speech therapy. She hasn't followed-up on that yet though. My PT has recommended speech therapy, but that is TMJ related and I haven't been able to afford it yet.


After my surgery, I've noticed a significant reduction in my amount of sinus and nasal problems. I really believe I had acid coming up into my sinuses for years without realizing it.

It was actually an Esophagram and Modified Barium Swallow that showed I had the acid coming up and irritating my lungs. If your Barium Swallow showed a concern, I'd certainly see about finding out more about it.

I was very frustrated with my ENT this week. I've had another bout of chronic coughing for 3 months now. While he did recommend some further testing, he basically told me that sometimes they just don't know what causes the coughing. I'll see what the tests say. I have a Pulmonary follow-up appt this week as well so maybe there will be some different insight there.

They haven't gone the anxiety route with me, but I have been offered anti-depressants a couple times, most recently this week. I declined. I tried one pill once and didn't do too well with it.
 
I think my frustration is in that every specialist says it isn't their area causing the flare and they pass me off. It would be really nice if they would talk to each other and really help me figure things out. That isn't reality though.

It might eventually be worth having a pH test in your process of elimination. There is a BRAVO test with a capsule they insert into your esophagus if you can't do the nasal thing. If you really are thinking more the LPR as a cause, they can do a short probe above your UES only. My ENT does that. They also have the dual probes (above teh UES and LES) in addition to the typical single probe. The tube doesn't take up your entire nasal passage. Even with only one side working, you should be OK.

Because of the connection between coughing and the lungs, that is how I ended up seeking out a Pulmonologist. Depending on how your next appointment goes, it might me worth seeking one out. Unless I'm having a true asthma attack, I have no wheeze and my PFT's come back normal. Still I have the coughing and shortness of breath.

I can't speak on the non-acid reflux, but I do know that all the coughing squeezes the stomach and pushes things back up, creating a viscious cycle if what comes up creates more irritation.

Unfortunately, I'm single and have no choice about working. I've been in my job for many years, but my performance has been slipping lately. When you are so worn down, it is hard to complete tasks, let alone multitask.

Unless I'm having a true asthma attack, I too typically have good oxygen readings even after a hard cough. At least I know I'm getting some oxygen, but I still wonder about all the times I'm not getting full oxygen while I cough.

You might try doing some internet research on Adrenal Fatigue. Most medical doctors don't consider it a "real" ailment, but it is supported by Naturopathic medicine. Many of the symptoms we both have show up on the symptomatic list for adrenal fatigue. Even sleep cycles and need for sleep are discussed. Basically, the premise behind it is that the body becomes worn out when the adrenals aren't functioning properly and we need to balance things back out in order to help with some of the symptoms that result. I seriously think I have problems in this area, but there are no doctors I can find to see with regarRAB to this. I did find a good book on Adrenal Fatigue though that made a lot of sense.

BTW, I've got follow-up appointments scheduled with my ENT/Allergist and Pulmonologist over the next couple weeks. I also have an EGD scheduled next week. I'm not very hopeful about finding any solutions though. I just feel I can't give up.
 
Mountainreader,

I'm glad you are getting some answers. I was told the same thing about prednisone. I've been taking it since March for a muscular disorder and trying to wean off of it. How much Prednisone are you currently taking?

M.
 
Losec contains the medicine Omeprazole. In the US, it is marketed under the brand name Prilosec or Zegrid. They are both over the counter PPI's here and do not need prescriptions. They work for some people, but not everyone.

For people who have reflux affecting their breathing, it is really really difficult to get the acid under control enough to allow the throat and lungs to heal. It only takes a minute amount of acid to cause serious problems. Because of this, despite many different prescriptions, diet changes and lifestyle changes, many people struggle to find relief. This can really wear a person out both physically and mentally.
 
I had an upper pH probe test this week. It basically measures the acid that comes up above my vocal corRAB. My ENT had me take the test while I continued to take my Dexilant 60 mg and Pepcid. If my tests come back showing reflux, it will be showing reflux coming up despite treatment. I've already had a Nissen Fundoplication, watch my diet and sleep on an incline so I'm not sure what else they can do for me. A Barium Swallow and EGD both showed my wrap was still intact. :( Based on the pH readings I was getting during the test though, I suspect it will come back positive. How frustrating. (I also get results back from my EGD biopsies, an MRI and a sleep study this week as well.)

I'm not currently on Prednisone. I've taken it frequently for the past couple years though. I was on it in August and again in Septeraber. My last prescription a few weeks ago was for 16 days on a taper. I spent the first part on 60mg per day. For the first time ever, I had horrible side effects. I hope you've had success while on it.
 
No..we musn't give up. Just a shame we are in an area of medicine that I at least feel isn't being given a lot of serious attention. When a life is disrupted badly through a medical matter you would think they would take a keener interest...alas that has not been my experience.
Here, we have an endoscope, are then taken into a room by a nurse for the findings and she says something like...yes you have acid reflux or yes you have a hiatus hernia measuring x cms. You are handed a three four page pamphlet that explains what those things are and thats it...off until you feel youy need another endoscopy and you have to go through the motions again...your general doctor refrerral etc. You are not told anything about diet or how to manage it or even what to expect. Any problems you have are taken up with the general doctor at your local surgery who sees 'acid reflux' or haitus hernia' written on the letter and just keeps pumping out PPI's and for me motilium. Problems that relate to acid reflux or that can be a knock on effect from it seems to be the awful grey area that no one can be bothered with.
Perhaps an endocrinologist for the adrenal fatigue?? Off now to have a look on google so thanks for that.
 
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