This is my first post and I apologise upfront for the length of it Ė I have had a cough for over four years and I am desperate for advice so want to make sure I give all the necessary information. I hope someone will spare the time to read it and give me some advice.
I have had common allergies since I was about 18 years old (I am now 45) Ė pollen, grasses, house dust mites and pet hair (cats in particular), etc. At that time I had skin test followed by three years of weekly desensitising injections.
A few years later I was diagnosed with perennial rhinitis and mild asthma triggered by the allergies. The sign that things were getting worse was always a cough. I have always had a runny nose (not the dripping kind though!) and post nasal drip causing catarrh Ė Iíve coughed up phlegm every morning for as long as I can remember.
Generally everything was kept under control by taking antihistamines, using nasal sprays, and inhalers (initially relievers and later preventers). Over the years I can remember being prescribed beconase and becotide, flixonase and flixotide, terfenadine and fexofenadine Ė there may have been some others that I canít remember now.
However, I have had an almost constant cough for over four years now and am desperate to get it sorted as the medications are no longer working.
The cough is trying to clear my throat and chest. Sometimes it is dry, other times small bits of phlegm are coughed up (except Iíve always coughed up larger bits of phlegm every morning Ė the longer I sleep, the more phlegm comes up Ė now that I sleep less, Iím bring up less phlegm in the morning).
I now sometimes cough to the point of being sick, have strained muscles and now have stress incontinence. My husband and I are sleeping permanently in separate bedrooms so he can get a reasonable nightís sleep as I wake to cough two or three times at night. I canít remember the last time I slept through the night, even if I take something to help me sleep.
I first went to my doctor about the cough in August 2003 when I came back from our annual holiday and realised that I had been coughing for more than a year (i.e. since the last annual holiday) and she referred me for lung tests.
Over the next 6 months I saw several specialists. I was initially referred to general medicine specialist who prescribed anti reflux medication (just in case, as I have no symptoms) and referred me for the lung tests. These established I have very good lung function and am not asthmatic Ė despite being prescribed inhalers for years before.
The chest specialist referred me to an ENT specialist who said my nasal passages and sinuses are clear. He prescribed a number of different nasal sprays.
During this time I was prescribed Rynacrom (Sodium cromoglicate), Rhinolast (azelastine hydrochloride), Nasonex (mometasone), codeine/pholcodine linctus and ranitidine Ė thatís all I can remember.
Nothing has relieved the cough, although the codeine and pholcodine linctus helps, but not for long and obviously I canít take it every time I cough.
The ENT specialist said they couldnít suggest any other treatment and I would have to live with it.
So I did some research on the internet and read that a cough like mine might have more than one cause, so I though that I would try a combination of allergy and anti-reflux medication using over the counter medication. I also bought an air filter/purifier and anti-allergy bedding for my bedroom.
So I tried ranitidine (first thing in the morning and last thing at night) with beconase nasal spray (first thing in the morning and last thing at night), loratadine or cetirizine antihistamines (one a day tablets) and codeine/pholcodine linctus up to the dosage limit. I also used my asthma reliever (as that was still in date) as a last resort sometimes, as that helped more than anything else.
The cough did not improve but it was often relieved by my asthma reliever with codeine/pholcodine linctus.
By this time my cough was being remarked upon by family friends and work colleagues and I could see people cringing when I coughed. At work colleagues were often remarking on how long I had had the cough - I was aware that it was irritating them, so in the end I was going into the ladies toilets to have a good cough or use my asthma reliever. I would even have to leave meetings or ask callers if I could ring them back. I gave up a stressful job in 2004 and I have worked on six month contracts since but the cough has continued.
In 2005, when my asthma relievers eventually ran out I went back to my doctor to ask her to renew the prescription and also give me a prescription for the over the counter medications as they were costing a lot of money. I had not seen her since she referred me to the hospital in 2003.
She really did not want to give me an inhaler as my records now showed I did not have asthma, but I persevered telling her it was the only thing that really helped and she agreed in the end Ė Iím sure she wanted me out of her office! She did not prescribe ranitidine, she gave me lansoprazole orodispersible gastro-resistant tablets. I felt so awkward and uncomfortable that when the tablets ran out I went back to buying over the counter.
Eventually the cough started to cause stress incontinence and I started to get severe muscle pain over my ribs under my right breast when I bent over. The pain would not occur when I coughed but out of the blue if I bent over. To stop the pain I would sit or stand up straight breath deeply and slowly for a few minutes and it would gradually subside.
So about six months ago I thought I would go back to my doctor again. I saw a locum and he told me the reason why the inhaler helped even though I did not have asthma, was that my throat was going into spasms when I coughed and the inhaler would relieve the spasms. He also prescribed different antihistamines - desloratadine for day time use and chlorphenamine maleate for night time use. He also told me not to worry about the sound of my cough irritating my family, friends and work colleagues Ė easy to say when I can literately see people cringing. The new antihistamines did not improve the cough.
So I went back to self medication. At the moment I am taking Ė
Loratadine (one in the morning)
Chlorphenamine maleate (two at night)
Ranitidine (one in the morning and at night)
Psuedoephedrine hydrochloride (up to 4 a day)
I drink water and suck throat sweets constantly to try to keep my throat moist. I go through a packet of blackcurrant olbas oil pastilles a day, even though you should not take more than 8 in 24 hours. I try to alternate then with Tunes or Throaties. My bottom teeth are crumbling away, but Iíll do whatever it takes now to stop the cough.
About a month ago I gave up my job and started working from home and the final straw came last week.
I bent over and the pain under my breast started - but this time it would not go away. It kept coming and going, getting stronger each time. The slow deep breaths did not work and I began sweating heavily. I was lying down trying to breathe holding under my right breast where the pain was. I was on my own I was really scared, I began to think that maybe I was having a heart attack, even though the pain was not over my heart and in the end I did something I have never done in my life Ė I dialled 999 for an ambulance. I was terrified and thought I might be dying. As I waited for the ambulance the pain started to subside, then came again and subsided again. The ambulance came and the paramedics quickly established that my heart was ok and my blood pressure was fine too. I was so relieved I was crying but at the same time felt a complete idiot, even though they were fantastic saying I had done the right thing. They offered to take me to hospital but I just wanted them to go, so they gave me paperwork to take to my doctor to get checked out again, suggesting some possibilities for the pain such as gall bladder problems.
I saw my doctor the following morning and explained what had happened. She was pretty sure that I had strained the cartilage between my ribs and told me to take ibroprofen (one in the morning and at night). As a safety precaution she referred me for a gall bladder x-ray. I feel sure she is right, that the pain was caused by strained cartilage between my ribs. But I think strained cartilage was caused the cough Ė and she made no reference to that. I think she should have thought about what caused the strained cartilage in the first place.
My GP is very nice but I no longer have faith in her. Iím unable to change doctors because of a local policy stating practices will not accept patients from other local practices (I live in the UK by the way). My husband reckons that she must be near retirement age so we may get a change of doctor that way.
What I am looking for (apart from a miracle cure) is some other suggestions for self treatment, bearing in mind Iím in the UK. Can anybody offer me any advice?
I can't believe you've suffered like this for over 25 years. I was ready to meet my maker after 6 months of this crummy disease - and you've survived over 25. Amaxing.
I truly believe that every one of your symptoms is actually that of GERD, gastro-esophageal reflux disease. The chronic cough is a manifestation of GERD called LPR - larygopharyngeal reflux. Though most people think of GERD as heartburn, LPR occurs when the acid rises higher in the esophogous into the throat and irritataes the UPPER linings. Heartburn is usually localized in the lower esophogous. But over time, most people who start out with GERD or LPR will usually develop symptoms of both.
Luckily, it's treatable, and highly so for most GERD/LPR patients. Second, while it's distressing to hear that your doctors have been pretty hapless, the medical community has only recently begun giving attention to laryngeal manifesions of GERD and realizing what an impact it has on throats and sinuses. In fact, they now believe that most cases of asthma are actually linked to acid reflux.
Unfortunatley, you are in England, which has a slightly different medical system. It seems that doctors there are sometimes a little slower to embrace new medical findings.
Let's talk treatment. First of all, I need you to be willing to go out right now and get yourself this prescription. You need to suspend your disbelief that anything can help you. You're here asking for help - but I know all to well how easy it is to let your mind think "well, this simple solution can't help me -my condition must be more complicated". I was in the same position 4 years ago, but swallowed my disbelief along with a double dose of Nexium, on a top doctor's orders. My coughing stopped 30 minutes later.
There are 2 classes of acid reducers. The first is called an H-2 blocker, of which the generic form ranitidine is the best known. H-2 blockers were the first generation of reflux drugs and were sold in the U.S. under names like Pepcid and Zantac. Ranitidine is awesome for people with occasional heartburn, but it's not going to help anyone with LPR, which for some reason is much more stubborn than basic heartburns. Ranitidine and it's fellow H-2 blockers are now sold over the counter in the U.S. - no prescription required.
The 2nd generation of acid reducers were launched 19 years ago. They are called PPIs - Proton Pump Inhibitors. You are on lansoprazole - which in the U.S. is sold under the brand name Prevacid. PPIs are much more powerful than H-2 blockers. However, while 1 dose of a PPI is sufficient for treating most cases of chronic heartburn, LPR treatment requires 2 doses of a PPI per day. And that is the most important thing that I can tell you.
Equally important is that you find the right PPI for you. In the U.S., there are 6 prescription PPIs on the market:
All of them (except for Zegrid) can be taken 2x per day. I recommend that you start with Nexium. Nexium is the latest PPI to have been introducted in 2002. It is more structurally unique and typically is the most effective for patients with LPR. It is very expensive here is the U.S., but it is worth every penny. It may also help you, in that it is better metabolized by more patients - seems to cause less side effects (I don't have any side effects at all). In addition, other LPR patients have had success with Aciphex and Prevacid. There seems to be less success with Prilosec and Protonix.
Zegrid is being used as a supplement to a double dose of another PPI. For instance, I take 2 doses of Nexium in the morning, then 1 dose of Zegrid before bed. Zegrid is just a new combinatin of Prilosec and sodium bicarbonate - 2 existing drugs that have been put in 1 pill together.
The Ranitidine you are taking is not going to help you with LPR. And when you begin 2x daily PPI therapy, you shouldn't take the Ranitidine with it, because Ranitidine can counteract the PPIs.
I also want you to take the 2 doses of a PPI together, at the same time to start with - and I want you to do this in the morning. If after a few weeks this timing doesn't work well - switch to one dose in the morning and one dose before dinner. Most people with LPR need the large dose together.
You can choose to add Zegrid at bedtime, but I don't know if it's available in the U.K.
As I mentioned earlier, I felt better in 30 minutes after taking my first double dose. However, I had been on a single dose for the previous 4 months and I don't know if that contributed to my getting better so quickly. Some people take 30 days to realize significant improvement.
You also need to post on anoher board - there is a forum set up for us called the "acid reflux" forum here on healthboards. You will find many other individuals there with the same problem. However, it's worth noting, that when people really begin feeling better, they tend to stop posting as much. I'd also ignore all the rubbish about natural treatment. LPR is so severe that we must have our pharmaceuticals.
Just in case you are bowled over in disbelief, I'm providing you with links to a U.S. government hosted research database called pubmed - which contains citations of all medical and scientific research articles. You just pop in "laryngopharygeal reflux" or "LPR" and you get abstracts of all the cutting edge research. you can bring these citations to your wonderful doctors, seeing as they'll probably not believe you without them. You can access it yourself by going to http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed .
I'm allowed to post this web address because it is a U.S. government web address.
To make your first foray a little easier, here are links to some of the most relevant citations on pubmed for you:
I can't tell you how much your reply has lifted my spirits, because I think you have hit the nail on the head. When I was first referred to a specialist in 2003 about my cough, I didn't actually see the consultant - I saw one of the doctor's who assisted him. After the 'assistant' doctor had taken my details he then went to see the consultant who told him that as I was overweight, the cough was most likely caused by GERD, but they would still refer me for the lung tests and to the ENT consultant. At that time I think I was prescribed ranitidine but the prescription was not renewed because the cough did not improve. It sounds like the consultant was on the right track after all. It is unfortunate that I was not referred to a GERD specialist (if there is such a person) when I was going from specialist to specialist.
I have no problem buying the drugs you suggest online in the first instance to see if they help. I can then go back to my GP and tell her the good news!
Thanks again for all your help and I'll check out the acid reflux board too!
Yes, this disease seems to fall in between the specialites of gastroenterology and otolaryngology, so both sides actually treat it. It's just hard finding someone who has treated it extensively. Luckily, PPI therapy tends to be very effective, and there is little that can be done beyond it. So, in practice, you can simply go to your GP, and ask for a PPI prescription for 2x daily dosing - because an ENT, gastro, and GP can all do the same things - prescribe PPIs. An ENT may be helpful because they can scope you, and look at the extent of damage to your larynx. A Gastro will probably want to give you an endoscopy - which is an outpatient procedure done under sedation that looks at the extent of damage in your lower esophogous. See, in the worst cases, acid reflux can lead to Barrett's esophogous, which is precancerous. Again, treatment is the same - 2 PPIs per day.
I also kept mis-spelling the name of the disease - so if you're going to search on it, it's called "laryngopharyngeal reflux" and sometimes it's called "laryngeal pharyngeal reflux" and it's commonly known as "LPR".
To get you started, there is a doctor in London who is very familiar with this problem, and has co-published a book on the disorder with the doctor in charge of my own ENT's practice. His name is John S. Rubin, M.D.
The book is:
Diagnosis and Treatment of Voice Disorders
Third Edition, May 2006
Editors: John S. Rubin, M.D., Robert Thayer Sataloff, M.D., D.M.A., and Gwen S. Korovin, M.D.
John S. Rubin, M.D., is a Consultant Ear Nose and Throat Surgeon at The Royal National Throat Nose and Ear Hospital Division of The Royal Free NHS Trust, where he is the Lead Clinician of the Voice Disorders Unit as well as Clinical Director. He is also a Consultant ENT Surgeon at St. Bartholomew's Hospital, Honorary Senior Lecturer at University College London and Visiting Associate Professor at The Albert Einstein College of Medicine in New York.
Also, while it's thought that gaining even a moderate amount of weight contributes to the onset of GERD and LPR, the reverse isn't true. Losing weight will not relieve the symptoms of LPR. I should know - I've lost 50 pounds and it hasn't helped. But the medications do.
Also, are you able to get free trials of drugs from your GP? In the U.S., doctors have large cabinets stuffed with the free trials/samples of the pharmaceutical reps bring to them. There's no reason to pay out of pocket for here for drugs while you are experimenting to find the right ones. Would your GP give your some free samples if you ask? It doesn't cost them anything - and in fact, at least in the U.S., the drug companies will pay the physician for getting you started on a prescription drug. So there is a benefit for the doctor.
My own ENT just gave me 3 months worth of Zegrid, unbelievable.
I went from having mild allergies to having the most severe nasal allergies during the time before my diagnosis. I felt like my sense of smell became greatly increased, and everything would make me sneeze. My nose was always clogged and I felt horrible. Apparently, the acid gets into the mucous, which slides around your throat and sinuses, delievering the acid all over the place. Then the acid creates these erosions - which increase your allergies. The PPIs will allow those erosions to heal and your allergies should get markedly better.
As far as your other meds go, stay on the Loratadine as it won't interfere with anything.
You may want to stop the Chlorphenamine maleate and Psuedoephedrine hydrochloride. I also used both of those before I was diagnosed. While they may not hurt, I just think it might be better to be fully aware of any improvement using the PPIs in conjunction with as few drugs as possible. The Loratadine has virtually no side effects but the Chlorphenamine can make you real sleepy and the psuedoephedrine can really dry you out and make you jittery or feel sleeplessness.
And the ranitidine may interfere with the PPIs. Some people who take their PPIs together in the morning use Ranitidine as a supplement at night (because the PPIs have a 14-17 hour life span). But my doctor has switched us over to a Zegrid at night instead. Don't worry about the PPI life span. People with LPR reflux worst during the day and feel a little better lying down, so you want the medecine working at its peak during the daytime.
Ranitidine (one in the morning and at night)
I've already taken Ranitidine today so I'll start taking the Prevacid in the morning (I've got just over a week's supply if I take 2 a day) until I can get some Nexium to try.
I can see I'll be reading a lot in the next few days! I can't thank you enough for all this advice, my eyes nearly pop out every time I go to another web link LOL!.
Can I just ask two questions?
1. My Prevacid tablets are 15mg but the guidance leaflet mentions tablets of various strengths. Is it 2 x 15mg tablets you are advising me to take?
2. Should I continue with some or all of my allergy tablets like the antihistamines or the decongestant while I see how well the Prevacid or Nexium works?
I do like the idea of not paying for any medication whilst I try it, but I think I would prefer to go back to my GP when I can show her that there has been an improvement! Then I can ask for another hospital referral to get an offical diagnosis.
You need to take 2 of the 30mg pills. None of the PPIs come in double dose size, so the 30mg pill is simply the largest approved size for daily use. LPR patients need 2 of these. The 15 mg pill is probably meant for people with less severe GERD.
You will find that all 6 of the PPIs come in different sizes. For instance, Nexium comes in 20 mg and 40 mg pills. I am on 2 40 mg pills per day.
I'm sure you are wondering if you can just take 4 of the 15mg Prevacids. I really don't know for sure.
While I do not recommend Prilosec OTC (which is the only PPI available without a prescription in the U.S.) I tried it for 2 months when it came out in the 20mg size. I took up to 8 of them and they didn't work. But since then, my doctors have explained to me the Prilosec OTC is made by a different comapny thatn Prilosec BRAND (by prescription) and you can't be sure you are getting the right dosage of medicine in those pills.
The point is, that you probably ought to get the maximum dosage pills, no matter what brand of PPI you start with, and then take 2 of them together, every day.
If you feel like it, you could try taking 4 15mg Prevacids together, to bring it up to 60mg. Just don't get discourgaged by PPIs if this doesn't work - you may need to go up to the larger pills. It may take a while to find the right combination - it seems like everyone on the GERD board has been through 4 or 5 PPIs before determining which one worked best for them. Seriously, some people will have side effects, like nausea, on one PPI and have none on another.
Also, when you get referred to a specialist, you should know that a positive response to 2x daily PPI therapy is considered a diagnosis in itself. If you have responded well to the medication and are improving, there is no need to put yourself through any strange double-probe or pH monitoring tests.
However, you should probably schedule an endoscopy with a gastro and a scoping with an ENT just to determine the extent of the problem. You'll then have these repeated in a year or so after treatment to make sure the erosions have healed.