Most of my usual blog readers can probably skip this post - it's an update about one of my health conditions that will probably be totally boring to most of you, but many of us who are dealing with this tricky condition have found it helpful to share our experiences.
This is a follow up post to my initial post about LPR and laryngeal granuloma. If you want the full history, or to read the many comments and updates from other people dealing with LPR, please start there!
[EDIT: there is now a second update here.]
[EDIT: I've just posted a final update on my LPR adventures. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here (or emailing me) - you'll get much better responses and support there! ]
My previous post left off nearly a year ago - how time flies...
I went and got a second opinion from an ENT I'd pegged as the best in the city. Sadly, even though this doctor had a lot of research under his belt, his patient care skills were horrible, and he had no more interest in figuring out why I was having these issues than anyone else I'd seen. He pushed PPIs on me, just like the original ENT, and didn't want to discuss anything else. He was so rough with me during the testing, and so abrupt and rude with me that I was on the verge of tears most of my initial appointment (during the follow up, I did not allow him to re-examine me).
Sometime in the spring during a moment of desperation, I decided to try the PPIs, but was thwarted after the first dose made me very ill - nauseous, pains in my stomach and intestines, bloating, belching, and had my dinner sit in my stomach all night. My (GP) doctor agreed it was not a normal reaction to them, and that we best leave that be for now. I've continued to muddle along without them. (I continue to suspect I've had low stomach acid for years now, and think that may be why the PPIs made me feel so ill, nuking the little remaining acid.)
Through the spring, I was waking up with more and more acid in my throat, and as my GP and I theorized about why this might be, the topic of rebound effects was mentioned in passing. I decided to experiment, and stopped my nightly Gaviscon (which I'd been taking for many months by then) cold turkey. Wouldn't you know, I had an almost immediate reduction of morning acid. I suppose the ingredient in the Gaviscon that was an acid reducing substance was too much "base" for my stomach, and was telling it "better make more and get things back to normal!" The increase in acid was so gradual it didn't occur to me this was the cause. I have continued to avoid regular use of Gaviscon since then, but use it occasionally if I get a flare up.
Eventually, I became suspicious about a rebound effect with the Sulcrafate and did a trial without it as well. Wouldn't you know, I experienced another drop in morning acid when I stopped it! I've continued to avoid using it unless I get a severe flare up (occasional use does not seem to cause the rebound effect, same as Gaviscon).
I continued the rest of my lifestyle modifications - not eating/drinking 3 hours before bed, sleeping on an incline (and trying to sleep on my left), no acidic foods/drinks, trying not to slouch... those have all been helping.
At some point I tried drinking alkaline water, as there were some studies about it neutralizing and preventing pepsin damage, but I found that (like the Gaviscon and Sulcrafate) after more long term use, I started getting a rebound effect, and had to discontinue. I may be more prone to rebound effects than most if I do in fact have low stomach acid, so this may not be the case for everyone, of course!
A somewhat random tidbit I came across over the course of the year was how histamine intolerance can cause reflux. Over Christmas 2012 and early 2013, I had the most sudden onset of hives on my back - something I'd never suffered from before. After some sleuthing, my GP suggested it may be histamine related, and wouldn't you know I'd recently started eating tons of sauerkraut and fermented foods to help with my gut health. Apparently sauerkraut is one of the highest histamine foods that exists! After several weeks of these hives, I dropped the diet changes, and within days they went away, never to return. Everyone has a natural limit to how much histamine from foods their body can process, and I guess I found mine.
Later on, I learned that there are also some theories around long term antihistamine use contributing to histamine intolerance - interesting to me, since my severe hayfever in the summers, and milder allergic rhinitis the rest of the year had kept me on some form of antihistamine most of the last couple years. I'd even increased from primarily using Claritin to using extra strength Reactine in the summers because my throat was so itchy (I think the acid was also irritating it and making it more sensitive). So I've managed to wean myself off antihistamines for this coming winter and my doctor would like me to do immunotherapy for my hayfever after the new year so that I don't have to take antihistamines so excessively, and hopefully also to help with my body's general inflammation and sensitivity.
Thanks to a person who found my blog, I discovered a Facebook group for LPR sufferers. It's been very interesting having others to share with!
I started (on my GP's suggestion) a trial of Melatonin at night - 3 mg at first then 6mg. It has been shown in studies to be one of the only things aside from surgery that can encourage the LES (lower esophageal sphincter) to tighten up. Hard to say if it's been helping significantly, but doesn't seem to be doing any harm, so will keep with it.
As for supplements, aside from the Melatonin, I am still taking slippery elm, and DGL and licorice tea as needed. Also, still using L-Glutamine, Vit B, Vit D, magnesium, fish oil, probiotics, CoQ10 and the digestive support/vitamin blend protein powder stuff I get from the clinic I go to. (In addition, for other chronic conditions, I've been supplementing potassium, iron, DHEA, and occasionally D-Ribose, and have been treated with various antifungal medications. I've been able to avoid taking antibiotics the entire year - knock on wood!)
I haven't had any major voice loss episodes (like where I have to stop speaking for multiple days) in the last several months, but carrying on one-on-one conversations is still very taxing to my throat. Even in a quiet place, constant one-on-one conversation for 2 hours is enough to really irritate my throat/vocal chords. In loud places, much less will do it. But less constant conversation has been easier, and I do feel like my recovery time from overuse has decreased a bit over the last six months or so, which is great!
Lately, I've been having trouble staying on my left when I'm asleep, and with the dry winter air inside, I often wake up on my back, mouthbreathing, dry mouth and throat, and pretty acidy. As soon as I am conscious and start salivating/swallowing again, things improve quickly. If only I could make myself keep my mouth shut and continue to swallow each night! Anyone have any tricks for this??
Improvement has been small and slow, but I feel I've gotten better more than worse over the last six months or so, so I hope that this trend will continue. Things I'd like to do/try in the coming months/year are:
- Make another earnest attempt at regular meditation practice, since it's been shown to help repair nerve/neurological issues (if this is indeed partly due to PVVN).
- More yoga and exercise (if my other chronic issues allow it), for stress reduction and muscle tone.
- Increase Vit B intake (I've found the B complex can be acidic itself, so it's been a bit hit and miss with how much I can tolerate).
- Find some zinc carnosine to try, as it's popular in Japan for reflux, and has had good results in studies.
- Staying better hydrated.
- Continue to work on improving my digestive system's functioning and stability (a lifelong issue), and getting rid of candida.
I think that's it for now! I will add more if I remember anything else... As always, comments are welcome, please share your story and post any updates you have!