Laryngopharyngeal Reflux (LPR)

I decided to write this post for a couple of reasons, first of all, I still struggle with this disease daily and I could for the rest of my life, which is a frustrating and scary prospect, I’m hoping that writing everything down with be therapeutic in a way. Second is that while everyone who knows me well has heard some of this before, most people don’t understand exactly what happened to get to this point, and exactly what LPR is.

I’m going to go back even further than when this all started getting serious. I have had acid reflux since I was a baby. I have heard from my parents that it was hard for me to keep food down, likely because of the reflux and the fact that I am also lactose intolerant. I was always warned by my doctors to be careful and to pay attention to the feeling of heartburn and that if it got any worse I may need to go on medication for it. For most of my life it was an annoyance, but it wasn’t severe. As I got older and started eating different types of food it got worse, but again it didn’t seem to be enough to warrant anything more than taking some Tums when it flared up.

When I was diagnosed with an anxiety disorder (a totally different story that I may write about later) I was prescribed medicine to help with the anxiety. I had been taking those for a few months when my reflux got a lot worse. I saw my PCP and she prescribed me a reflux medication (I’ve been on so many medications since then that I’m not sure, but I believe it was the generic of Prilosec). And for awhile it seemed to be enough. I took this medicine daily for about two years before anything progressed any further. Around this time I also stopped taking my anxiety meds, as they weren’t helping me at all and it seemed they were making the reflux worse. All of this happened between August 2007 and August 2008.

New Years Eve 2008 is when I noticed all the other symptoms starting. Earlier in the month I had had a cold that it felt like I was still getting over. Everything but the stuffy nose had gone away, but that persisted. My nose was so dry because of everything that I had my first bloody nose that night. From then on I had a chronic stuffy nose every day for over six years. When I get sick it gets worse, but it’s always there.

After a few months of the stuffy nose never going away I talked to my PCP who said it was probably just allergies and told me to take an allergy pill every day even if I didn’t feel like I needed one. It didn’t help. I went back a few months later and told her it wasn’t helping and that nothing had changed. She prescribed me a nasal spray, it didn’t work. She reminded me that we live in a place with awful air pollution and that it could be the cause of it. Still, she prescribed me another nasal spray. It still didn’t do anything. She told me to keep it up and eventually it would.

I went home that day incredibly frustrated because nothing was helping and I knew it had to be something more than allergies when nothing for allergies was helping.

Skip forward another year or so and now came the time when my Asthma went from a bit of a pain, to taking my rescue inhaler at least twice a day. It was ridiculous, even as a child I had never used the medicine that often but I constantly needed it. So I went back to my PCP, she got me started on an asthma medicine that was meant to help get asthma back under control. I took large doses every day for three months and went back to her. She cut the dosage but kept me on the same medicine. There was a lot of trial and error in the year and a half (yes, a year and a half) it took to get everything back under control. I tried so many meds I don’t remember them all. As time went on this got more under control but I was still on a fairly large dose to keep it that way. Also, keep in mind that this is already about mid 2010, two and a half years after the chronic stuffy nose started.

I went back to my PCP every six months and if my breathing test looked good, sometimes she would cut the dosage again.
            Skip forward again to around May-June 2011, by this time I was STILL taking the reflux meds, had tried at least half a dozen each of asthma meds and nasal sprays and while the asthma was under control I was still on a larger dose than my doctor wanted. I was still taking allergy medicine like it was candy, with no results and I had completely given up on the nasal sprays. By this time a new symptom had started, though I didn’t know at the time what it was. 2011 started the phase of constant colds. My family will probably remember well that for weeks at a time, with hardly any breaks in between I would tell them not to get too close, that I couldn’t kiss their kids, or not to share anything with me because I would get them sick. I took cold meds way more often than can be healthy because I was CONSTANTLY sick. On top of that, the sore throat feeling had started to turn into a sharper pain in the center of my throat. I still got sore throats, particularly if I did a lot of talking, but the pain had changed.

I went to my PCP again and she said that it was most likely because of my job (I’m a teller, I have a lot of contact with people and I work inside a hospital) we both kind of shrugged it off as an annoyance I had to live with. I started taking Echinacea and Vitamin C every day to try and stave off those colds. I lived like this, constant sore throat, sharp pain and a stuffy nose for nearly another year and a half with no end in sight. The longer it went on, the worse it got. I would wake up feeling fine and go home from work feeling like I had screamed bloody murder all day. I was coughing all the time, trying to clear my throat, it felt like it was never clear, I would get lumps in my throat the more it hurt and everyone said it was my imagining it (I am kind of a hypochondriac so this wasn’t too far-fetched for someone to suggest.)

Every time I went to my doctor, which I still did at least every six months for my Asthma, I asked her about it. She never had anything new to say or to suggest, it just was what it was. I was incredibly frustrated. I mean, she could have at the very least run a freaking blood test to make sure everything with my white blood cells was okay and it wasn’t a sign of something serious. She could have done SOMETHING! There had to be some sort of tests right? And if she couldn’t perform them herself, certainly I could go to an ENT for it. Right?

I spent until November of 2012 fighting to try and get SOMEONE to help me figure out what was wrong. After all, normal people don’t have colds all the time do they? Normal people don’t go home from work wanting to rip out the own esophagus because it hurts so much.

I remember clearly that September was my first trip out of the country, and when I packed my medications in my carry on I thought for sure I would be stopped by customs, that they would think I was smuggling in drugs. That’s how many medications I carried with me a day, that’s how many I had to take. Sure some of them were herbs and vitamins I took in a vain attempt on my part to do something about the problems, but still, I looked like a druggie.

When I got to Paris I couldn’t believe that even with the smoke everywhere, my sinuses seemed to clear a little. I thought, hey maybe my doctor was right and it was just the air pollution. But the longer I was there the more it settled back down to normal, I was disappointed to say the least. And when I got home and realized I had been doing this for four years with nothing new, no diagnosis, no tests, nothing, I was done. I skipped my PCP and went straight to an ENT.

In November 2012 I went to an ENT, told them my symptoms and was immediately given the diagnosis of Laryngopharyngeal Reflux (LPR) also known as Silent Reflux. Now I didn’t understand at first exactly what it was, the ENT’s assistant who “explained” it, didn’t do very well, so until three months later when I went back again I only had a vague idea. Here is most of the relevant information taken directly from WebMD:

Laryngopharyngeal reflux (LPR) is similar to another condition -- GERD -- that results from the contents of the stomach backing up (reflux). But the symptoms of LPR are often different than those that are typical of gastroesophageal reflux disease (GERD).

With LPR, you may not have the classic symptoms of GERD, such as a burning sensation in your lower chest (heartburn). That's why it can be difficult to diagnose and why it is sometimes called silent reflux.

Causes of LPR

At either end of your esophagus is a ring of muscle (sphincter). Normally, these sphincters keep the contents of your stomach where they belong -- in your stomach. But with LPR, the sphincters don't work right. Stomach acid backs up into the back of your throat (pharynx) or voice box (larynx), or even into the back of your nasal airway. It can cause inflammation in areas that are not protected against gastric acid exposure.

Silent reflux is common in infants because their sphincters are undeveloped, they have a shorter esophagus, and they lie down much of the time. The cause in adults is not known.

With LPR, adults may have heartburn or a bitter taste or burning sensation in the back of the throat. But they are less likely to have such classic signs of GERD. More often, symptoms in adults are vague and may be easily confused with other problems. The most common symptoms include:

• Excessive throat clearing
• Persistent cough
• Hoarseness
• A "lump" in the throat that doesn't go away with repeated swallowing

Other symptoms may include:

• A sensation of postnasal drip or excess throat mucus
• Trouble swallowing
• Trouble breathing
• Sore throat

Complications of LPR

Stomach acid that pools in the throat and larynx can cause long-term irritation and damage. Without treatment, it can be serious.

In adults, silent reflux can scar the throat and voice box. It can also increase risk for cancer in the area, affect the lungs, and may irritate conditions such as asthma, emphysema, or bronchitis.

Treatment of LPR

Silent reflux treatment for adults may include these lifestyle modifications:

• Lose weight, if needed.
• Quit smoking, if you are a smoker.
• Avoid alcohol.
• Restrict chocolate, mints, fats, citrus fruits, carbonated beverages, spicy or tomato-based products, red wine, and caffeine.
• Stop eating at least three hours before going to bed.
• Elevate the head of the bed about 4 to 6 inches.
• Avoid wearing tight-fitting clothes around the waist.
• Try chewing gum to increase saliva and neutralize acid.

You may also need to take one or more types of medicine such as:

• Proton pump inhibitors such as rabeprazole (Aciphex), dexlansoprazole (Dexilant, Kapidex), esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec), or omeprazole and sodium bicarbonate (Zegerid) to reduce gastric acid.
• H2 blockers such as nizatidine (Axid), famotidine (Pepcid), cimetidine (Tagamet), or ranitidine (Zantac) to reduce gastric acid.

Some people respond well to self-care and medical management. However, others need more aggressive and lengthy treatment. If this is not effective or if symptoms recur, your doctor may suggest surgery.

            It’s all very clinical, but you get the gist. Let me draw your attention to some of the highlighted red areas.

• The cause in adults is not known. This is frustrating and scary because it means there’s less information to go on, therefore it’s harder to treat.

• Excessive throat clearing
• Persistent cough
• Hoarseness
• A "lump" in the throat that doesn't go away with repeated swallowing
• A sensation of postnasal drip or excess throat mucus
• Trouble swallowing
• Trouble breathing
• Sore throat

We’ve already established, if you remember that I had EVERY SINGLE symptom on this list. Which also means that those colds I had all the time? Yeah, they weren’t actually colds. The symptoms combined mimic that of a cold and I had been taking all that medicine for nothing.

So moving on again, I started treatment which means I go into their office every six months for a scope (LES) which looks at my vocal chords and surrounding tissue to see how things are going. It also means I started a bunch of medicines, Two separate reflux medications (total of three pills a day just for these), nasal spray and Mucinex, the largest dose allowed twice a day. I also went off of everything suggested above, which is a drastic change, and I even had to add blood thinners into the mix of things I can’t have because I had two blood vessels clearly visible on my vocal chords that they were afraid were going to rupture, which would create a polyp.

I started voice therapy, which is basically 45 minute sessions of things that make you feel like an idiot. Weird sounds and words mashed together to make your voice do specific things, I do on average, 15 vocal exercises a day. Sometimes more when I remember them all, and some of them I do multiple times a day. I have massages I have to do to relax the area and I’ve recently started vocal warm ups for singing, also specifically designed to help while simultaneously making you feel incredibly stupid. It helps, but slowly. The whole idea is that for the four years before I was diagnosed (at least) I have been talking and singing with awful habits, and they need to correct them. These bad habits can create nodules on your vocal chords if not fixed.

Yes, yes, I know. Nodules, pitch perfect, hilarious. Not. Nodules are calluses on the vocal chords, usually one on each side facing each other and the eventually diminish over time, but for me getting a nodule (which again, I easily could) means absolutely no singing for at least a year. No singing at all. And I’ve tried that before, it’s impossible. There is also the possibility that cysts will form. If cysts form on the vocal chords they have to be removed by surgery, and surgery on such a sensitive area of your body is terrifying to say the least. There is also the possibility of surgery to help keep the muscles closed and keep the acid where it belongs. This hasn’t been recommended to me yet and I hope it won’t be. It scares me just as much as the other one.

So getting past the clinical side of things I want to talk about how it makes me feel. I’m such a girl, I know. When I was first diagnosed I was annoyed. Here was this seemingly simple thing that had been bugging me for four years! But I was wrong. Within months of being diagnosed everything got astronomically worse. The sore throat was consistent, no relief, the stabbing pain I talked about? It became so severe that the way I used to describe it was “the feeling of someone punching me in the throat, stabbing my vocal chords and taking them to a cheese grater all at the same time.” It hurt so much and so often that I had taken to doing entire days of vocal rest to try and help and it barely did. As soon as I started talking again I would be back where I started. I spent so many hours writing in a notebook or texting my sister who was right next to me just to communicate. I cut out all singing from my life, I didn’t even sing happy birthday to my nieces at their parties.

Slowly the talking got a bit better. I could go home feeling like I had a cold but unless I really overused my voice I didn’t always have the stabbing pains anymore, and that was a blessing. They still come, and frequently, but I also know how to better avoid them. I also still have the drainage in my throat and the constant stuffy nose. Nothing has helped those, and if nothing does soon I will start injections for allergies to try and target my specific allergens, and I will also get a head CT to see if there is anything else going on they don’t know about.

At the risk of sounding melodramatic, the best way to describe how I felt, how I still feel almost all of the time, is that I hate my life. I have had problem after problem medically, and this was kind of the straw the broke the camels back.

Now I know what you’re thinking, it sounds bothersome, but not very serious, right? Wrong. First of all, remember those highlighted words up there? Well there’s one section that talks about cancer. The thing people don’t realize most about this is that if it isn’t kept under control, the chance of getting esophageal cancer rises with every pass of acid across the delicate skin. It erodes the area and can create a disgusting, terrifying layer of cancerous cells, that if not caught can spread further into the tissue. Esophageal cancer is no more or less scary than most of the other types, and I’ll tell you why. There are cases where the cancer starts in your throat…and because we all know cancer is so fun and likes to kill everything in it’s path, it can reach down to other important areas in your body. It can spread like anything other type of cancer; it doesn’t just stay in your throat.

I’m scared all the time that this will happen. Every time I cough too hard and feel acid burn my throat. Every time I eat something I shouldn’t (Come on, don’t make that face. Living with this diet for over two years is hard.), every time I miss a dose of medicine. It’s endless. Not only is there this awfully scary prospect, but there’s also the fact that I had completely lost my singing voice. Recently I’ve started to get some ability back but I’m still so far away that I often wonder if I’ll ever get it back completely. And despite how small this seems it was my most secret dream to become a professional singer, preferably in the theater. For now, and possibly forever, that dream is gone.

I try not to lose hope, because I am improving, albeit slowly, but it’s hard. I might be able to sing a song once through, but then my throat hurts so much I have to stop singing altogether.

It’s a constant battle, it affects every area of my life and while it may not be fatal unless you stray towards the esophageal cancer, it has forever changed my life. I will live with this forever.

And now that I’m almost done with my giant post I just want to thank anyone who has read this. I hope you understand a bit more why this affects me so much, and I hope you’ll forgive me for my bouts of depression on the days it hits me harder than other.

To conclude I want to say that I went to the ENT recently and while nothing has improved, nothing has gotten any worse either. I have a little hope now, and however small that may be I try to hold onto it. Hopefully one day my voice will be strong enough to perform on stage again. Until then I have been fortunate enough to find something that makes me happy and I am eternally grateful. My family is amazing, they’re all such a huge support to me and every one of them has helped me through this, so thank you for everything! I also have to say a quick thanks to my sister Heather for putting up with me, I know if I was living still with other family members they would have done exactly what she has, but she’s the lucky one who’s had to deal with %90 of my breakdowns alone, so thank you Heather! I love you all!