• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Reflux ?

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I don't suffer from acid coming up. But what does happen occurs after a meal where I drink a lot of water. For the first hour or so after the meal, if I bend over the stomach contents starts to flow up my esophagus. It seems like mostly water. Maybe because if flows easier. But no aside burn that I notice.

Another things happens but not quite as often. I swallow water and it seems to only go down part way. I can easily contract my muscles (not sure which ones) and the water comes up again. It's as if I have to make extra effort to swallow.

I can think of two possible causes. One is ME, which is why I'm posting here. Does this happy to ME patients? Do you know of any fixes.

The second possible cause it the radiation treatment I received for tongue cancer. There is collateral damage with one possible scenarios being that nerves from the brain down the neck that control the esophagus are damaged and so it doesn't close up to keep the stomach contents from flowing out. As for water being only partially swallowed, this can be caused by the radiation treatment as well.
 

Skippa

Anti-BS
Messages
841
I get this, however I also get GERD too, complete with acidy burn.

When I got diagnosed with CFS and talked about this symptom, I got the impression that it was a fairly common complaint in PWC.

Sometimes I'm eating a meal and the food backs up my oesophagus and blocks it and refuses to go down any further and I have to wait for the muscles to start working again... quite scary a bit like choking in some ways.

And everyone else I know can wake up at night, have a few sips of water and lie down and go back to sleep again. But if I have even a sip of water, I have to stay upright for at least 20 minutes, otherwise it will come straight back up when I lie down.
 

minimus

Senior Member
Messages
140
Location
New York, NY
Sorry you are having these symptoms. I have somewhat similar symptoms. Sounds to me like you could have what is called "silent reflux" or LPR, which is quite common, more so than typical heartburn-like GERD. I went to two "voice/swallowing disorder" specialists in New York -- Jonathan Aviv and Jamie Koufman. They both diagnosed me as having LPR as a result of a vagal nerve neuropathy -- one side of my vocal cords is paralyzed and a 24-hour manometry/pH test showed that the two valves in my esophagus were not closing properly. It's not really worth having all these tests done. Easier to just try their treatment recommendations and see if the symptom improves, or live with the problem if it is tolerable.

Both have written books on the subject, which might be worth buying. The basic idea is that if you have LPR, food moves up into your esophagus and throat if you are horizontal, as a result of gravity. The result is that the throat and esophagus become inflamed, and the inflammation makes food/water/pills more likely to get stuck in the esophagus after you eat. Other symptoms include hoarseness, sinusitis - because stomach contents move into the sinuses and cause inflammation, and chronic cough -- because stomach contents can move up the esophagus and down your windpipe into your lungs.

The treatment approach primarily involves diet and lifestyle modification -- much easier said than done if you also have CFIDS. Their main recommendation is not to lie down for 3-4 hours after eating. Ideally, no food should be eaten after 7:30 PM at night. They also both recommend H2 blockers like Pepcid twice a day, in the AM and with dinner. There are also certain foods to avoid because they further weaken the lower esophageal sphincter -- chocolate, coffee/caffeine, and mint (many herbs are in the mint family, so they should be avoided as well.) They recommend a low acid diet -- avoid tomato, citrus, and sodas. Koufman also recommends eating a very clean, paleo-like diet. Lifestyle changes are the only effective treatments. Unfortunately, these lifestyle changes can be difficult/impossible to make if CFS is severe enough and you cannot stay upright. (In my case, CFS means I have no appetite until nighttime, so staying upright for 3-4 hours after my last bite of food is very difficult.)

In terms of medications, both recommend using H2 blockers like Pepcid in the morning and with dinner. Koufman advocates using Neurontin (gabapentin) in low doses (100 mg three times a day) , since she claims it can help to reverse vagal neuropathies. She also recommends using Gaviscon Advance after eating and before bed, since it forms a barrier that reduces silent reflux at night. (This is not sold in the US and has to be bought on eBay from UK sellers.)

I hope this is helpful. Many but not all gastroenterologists and ENTs know about LPR and can diagnose if that is the problem. Unfortunately, most don't know what to do about it. They primarily like to prescribe proton-pump inhibitors, which stop almost all stomach acid production and cause downstream problems, so should be avoided. Good luck.
 
Last edited:

wonderoushope

Senior Member
Messages
247
Yes "silent reflux", that's what I have (most of the time). I have been diagnosed with GERD and acid reflux (I thought they were the same thing, but apparently they are slightly different). I don't tend to get oblivious signs of reflux. But at times I get a bitter taste in my mouth or my costochondritis plays up. I don't get heart burn, but instead my costochondritis flares up and I also get a very bloated/full stomach and I feel a bit nauseous. Occasionally I will get small bouts of reflux, just water/clear bile, but for the most part I don't get "the normal" reflux signs.