reflux cough getting worse and doctors can't agree on treatment

[Meli]

I had a g-i virus a little over a year ago that left me with severe reflux, something I had never had before. I have a raw throat, frequent SEVERE cough, choking when I eat, sharp pain in my ears, sinuses and throat, chest pain, bronchial irritation from aspirated stomach acid. I wake up with heartburn and nausea every day. I see a GI specialist and a pulmonologist. I take aciphex and advair. They referred me to a surgeon for a lap nissen procedure. He read my file and said he is not sure the surgery will help. He thinks there may be neurological damage to my esophageal muscles or an underlying cause such as lupus and does not want to operate right away. He is talking about waiting another year to see if neurological healing will spontaneously take place. I am very frustrated because these symptoms interfere constantly with the quality of my life. I am tired all the time from lack of sleep due to reflux cough at night. Now I am considering alternative therapies such as acupuncture. Has anyone tried any alternative therapies? (not health food store stuff like licorice; I tried that and ginger and neither worked)I really want to get my old symptom free life back if possible. Help!

[marygold]

I don't know about any long term effects. My doctor (same one who misdiagnosed me) said I'll be taking it for the rest of my life. He gave me a prescription for a 6 month supply before I moved to cover me until I found another doc out here who could give me more. I can't live without it. I missed it once and felt like I was going to die.

I've noticed a few more things since about a month or 2 ago. I'm so fatigued I can barely keep my eyes open, sometime nearly falling asleep in class! Haven't yet, but close enough! My vision gets incredibly blurry and I see double most of the time now. Since starting Nexium, I have never felt hungry. My appetite has completely shut down, so I have to keep myself on a schedule and force myself to eat cuz I never want to. Once I forgot and didn't eat for 2 days before I remembered.

Nobody wants to do surgery on me because they insist I'm still growing. I can't see a doctor out here at all because I don't know the medical system, I can't afford it, and I have absolutely no medical plan whatsoever. It's not a good thing. I'm just trying to do my best until I can apply here.

I'm not handling it very well at all either. I just got a slight cold by healthy people's standards, but I'm nearly laid out. I hope I never get anything more than a cold for the rest of my life. I'd probably never recover fully. Kids my age are not supposed to get this! Why me?

[Andydrew]

I can respond to a couple of things:

Nexium has many, many side effects. It is meant for short-term healing of several conditions, and it is not recommended (by the manufacturers) for indefinite use. There have been no long-term studies conducted. Do a Google Search for Nexium and you will find a plethora of sites with information on this drug.

Nexium also has 20 mg which according to the literature is just about as effective as 40mg. It may be gentler on your system than 40mg. And you can take it AM and PM for coverage.

Nexium and Prilosec are pretty much the same and you may have medical coverage for it as it is no longer under a patent.  The fundamental difference is that Nexium targets one acid inhibitor and Prilosec targets two, but of the two, one is the same as Nexium. It is manufactured by the same company and my understanding is that the reason Nexium was produced was because Astra Zeneca lost their patent on Prilosec and wanted to produce another drug under a new patent, so they modified Prilosec.

I have never used Prilosec but it is supposed to be very good, as good, as Nexium. I found Nexium to be good but only short-term. Nothing works on me more than a week or two.

Handle it? I am not handling it well at all. I can't drink or eat without feeling miserable. There are days when I don't want to eat at all. I feel like jumping up and down on a pogo stick until my stomach slips back into place. I feel like my life is being sucked away from me every day. My back hurts, I don't sleeop well, I'm getting vison problems. My health is dwindling.

I am thinking of surgersy but I have read very little that has inspired me to move in that direction because most of the reports are horror stories and there is no return from that.

Keep getting tests until they find the source. If you have an ulcer, hang in there because it's very treatable and you'll be fine. There are many proton pump inhibitors that you can try
and they may have fewer side effects.  

take care, Andy

[marygold]

I have severe GERD, and am on Nexium 40mg a day. That doesn't seem to be enough, but I don't have any medical coverage. I just moved and am not eligible for medical for another month or two. I was misdiagnosed by my doctor for 4 years before being properly diagnosed by my sister's ear, nose, and throat specialist when I took her for an appointment. I told my doc, and he said he thought of it, but dismissed it because I didn't fit the stats. Well, because of that I have some pretty serious complications that I now have to deal with for the rest of my life. My Nexium is not covered, and I can't afford upping the dosage, so I bought myself a hospital bed a couple years ago. I have the head cranked up to a good 3 feet higher than my feet. Anything less and I'm in pain.

I don't like the thought of being on Nexium for the rest of my life. How do you deal with it, and are there any complications associated with continued use?  I have had GERD since I was about 12, and was diagnosed at 16. I am now 19, and have been on Nexium for about 10 months.  You sound like you've had worse doctors than I had! How do you guys cope with stuff like this day to day? I've learned to deal with it, but it's starting to wear me down since I moved.

I just moved out on my own to a new city for the first time, and I don't know where to find these kinds of answers here. I found a good specialist back before I moved, and had a endoscopy done. I have a couple healed ulcers, no Barrett's oesophagus, and inconclusive data on my duodenum. How do you go about finding a good doctor/specialist? I don't know anybody around here.

About Nexium, does it cause extended stomach? Every so often I get so I look like I'm a good 5 months pregnant. It lasts anywhere from a couple hours to a day. I follow a very strict diet and I take supplements. I take a basic multivitamin like Centrum, and a vitamin C tablet. I can only take the vitamin C tablets that are unflavoured and uncoloured and not chewable. They're harder to find than you think! It seems to keep me covered.

I've moved to a way drier and colder climate than I'm used to, and the dryness is severely painful. How might I be able to cope? I'm not sure about buying a humidifier yet because of my roomies and they keep their bedroom windows open usually. It seems that the moisture from the humidifier will just go out the open windows. Do you have any suggestions?

Thank you

[Andydrew]

Thanks for your history. I'm sorry you were so victimized by such profoundly incompetent, ignorant, and irresponsible doctors. It's really sickening. And there's so much guessing going on, even when doctors are good. Hang in there, you deserve a healthy body.

Thanks for your support in my being proactive. I've had to learn the hard way and fight for myself. I don't know what will evolve from this reflux. It's very dangerous, that I do know.

Thanks again, and take good care of yourself. Your important.

Andy

[kimbacat]

thanks for the kind words!  

how did all this happen?  how did it start?  that's a really, really long story.  the short version is:  20 years of undiagnosed and untreated disease are what I believe have led me to where I am now.  I've had crohn's disease all my life, diarrhea, abdominal pain, mouth ulcers, etc.  but I was told it was 'all in my head' or due to stress.  one doc even went so far as to tell me that if I would just settle down and have a family, I'd feel a lot better.  I seemed to have hit the jackpot when it comes to paternalistic and condescending docs.  I didn't question the docs conclusions, I didn't push them for explanations or treatment when none was offered.  without treatment, the disease has had a chance to affect a lot of different parts of my body.  so, when I see someone else struggling because they know something is wrong, they know that they should be feeling better, but don't know what to do, I want to try to encourage them to keep looking for answers.  

and no, you aren't a wimp!!!  how could facing a problem and trying to correct it be considered wimpy?  of course if you were responding saying that because of your hernia you couldn't get out of bed, couldn't take care of yourself and were typing your msg with the last ounce of energy you had..... then I might have to slap you around a bit ;)

[Andydrew]

Thank you for explaining. I don't know how you handle all that. You have so much courage. Makes me feel like a real wimp, dealing with just a hernia.  Do you want to share how this all happened?  What did you feel at the beginning?  

I've noticed how often you share on this site, and how valuable and insightful your comments are to everyone, myself included.

Thank you!!!

[kimbacat]

I haven't noticed any side effects.  but I don't think that I would really be able to tell.  I have crohn's disease and have had quite a bit of bowel removed, along with my gallbladder and have chronic inflammation in my stomach.  I've lost the portion of my bowel that absorbs vit b12.  I give myself injections, so I don't have any problems with that.  I can't eat a lot of things due to adhesions and recurring partial bowel obstructions.  citrus can be difficult for me.  I take Centrum's liquid multivitamin and the liquid supplement Boost.  that seems to keep me covered.

[Andydrew]

Thanks for commenting.

I think I too need better coverage. Perhaps I will go to 20mg 2x a day. That might be good.

My medical coverage will not cover Nexium and it's very expensive, as I'm sure you know. I have some 40mg samples from my Dr. but I'm running out.

7 years on PPIs? Have you had any bad reactions? What do you do @ not getting enough vit. C from citrus fruits? Thinking that I will be on PPIs my whole life, I wonder about my health in other ways. Are you feeling Ok otherwise? Has reducing stomach acid caused other problems?  

Thanks again for your comments, and I wish you the best as well.

[Andydrew]

I am very interested in what you have said here. I wasn't aware I could take nexium 2x a day. I think that might help me to calm down. I also didn't know that the coughing was aspirated acid in the lungs, I thought it was esphageal irritation.

The treatments I've tried are:
Protonix w/Zantac at night (pretty good)
Aciphex worked well on reflux but my vision became blurry.
Nexium worked and felt best but after 10 weeks, it stopped working and I developed stomach cramps.

I have a wedge under my mattress 10" but it doesn't do much to help the feflux.

Most effective thing is not eating 4 hours or more before bedtime. This has completely disrupted my social world of meeting friends for dinner. Last night I went to a dinner party
but barely ate anything because I was afraid of the reactions I would have later that night or how many hours I needed for digestion.

Thanks for the good info!!

[kimbacat]

yeah, the not eating after 6 or so really does put a crimp on things.  going out for dinner is a rarity for me and no more snacking while watching a video or tv at night.  even just water within an hour of going to bed can cause me to vomit.  

I have been taking PPI's for about 7 years now because of gastritis and reflux.  I only just switched to nexium in jan of this year because of coughing and hoarseness which had been attributed to my lung disease.  my gi told me these can be signs of reflux.  this is actually twice the recommended dose of nexium, so talk to your doc first.  'upgrading' to the nexium from prilosec helped me.  and whatever I've taken, dosing twice a day has given me more even coverage.  

take care

[kimbacat]

sorry to hear you are still having problems.  I'm guessing that you have tried the other PPI's (Prevacid, Prilosec, Nexium).  do you take the Aciphex at least 45 minutes before eating (the docs don't always tell you that)?  I'm guessing you have already tried combining them with the H2 inhibitors like Pepcid and Zantac and modifying your diet by not eating (not even water) 4-5 hrs before going to bed, eliminating things like caffeine, alcohol, citrus, tomatoes, chocolate, peppermint.  do you elevate the head of your bed (6 inches or more)?  are you taking things to keep your sinuses clear to eliminate post-nasal drip(steroid nasal sprays, antihistamines, etc)?  I've never tried accupunture for my reflux, but have for other things and found that it helped.  the combo that has worked for me, is 40 mg of Nexium 2x/day, not eating after 7 pm, eliminated problematic foods, eating small frequent meals throughout the day, raising the head of my bed with 3 bricks each side, using saline nasal spray, Nasonex and Zyrtec to keep my sinuses clear, reducing stress, and doing yoga to help me deal with the stress I can't get rid of.  I also use a steroid inhaler (Flovent) for my lung disease.  I keep the humidity in my house between 30 and 50% so as not to aggravate my airways.  sometimes, I have had to sleep in my recliner for a few weeks to allow time for everything to calm down and heal.  I also think sleeping on your left side is better than your right side.

good luck!  I hope you can find some relief