drtinsac journal - GERD/LPR - extremely long

Hi again drtinsac, great to have you on the other side and thank you for the updates :) I have an experience that may be of interest to you.

Having had the NF, I'm still getting a lot of sour fluid 'refluxing' in my mouth and throat, almost exclusively at night (ensuing insomnia etc). Now I was definitely refluxing before the NF (my demeester was high) and my post-op ph/demeester was fine...

Puzzling, however I'm beginning to think that this may well be saliva generation. Now we generate a lot of saliva production during the day (1L -1.5L iirc but correct me if i'm wrong) and apparently it should drop to ZERO while asleep...

But we've had work done on our esophagus, the stomach is wrapped around it. One of the triggers of salivary production is acid exposure to the esophagus and I think I read Denise mentioning somewhere that pressure on the esophagus is also a mechanism which triggers saliva...

If you think about it, if you've had the NF, the lowest part of the esophagus is always going to be exposed to acid (the very end below the 'wrap) and the stomach wrap is putting pressure on the esophagus so it follows that you're probably still going to produce saliva even while asleep.

So...I'm going to try to put a stop on my saliva.

Now there's some evidence (referenced in this review: http://www.aafp.org/afp/2004/0601/p2628.html) that antireflux meds have no effect on excess salivation (albeit in children with CP) and indeed I noticed no difference when I tried max dose PPI and H2-blockers.

To quickly mention the extreme interventions, there's great evidence for botox injections into the salivary glands (last a few months) and surgery directly on the salivary glands but I'm not going to pursue that route yet. Another mechanism of stopping saliva being produced are anticholinergic drugs. Usually they're given to psychiatric patients on Clozapine therapy but they're used in other disorders, often neurological ones and palliative care (stops respiratory secretions).

2 that seem to be the standout ones are:

Scopolamine, aka Hyoscine in the UK
and
Glycopyrrolate

Evidence is good for both. Glycopyrrolate seems to be especially powerful but the side effect rate is very high. I'm going to try Hyoscine. There are tablets available but they're poorly absorbed in the gut so there's a 3-day transdermal patch that I'm going to go for.

If it does actually help, I'll discuss the more permanent options with a specialist.


Side note but interestingly, Elavil also has anticholinergic properties and there is some evidence that a low dose at night has also been used successfully for hypersalivation (25mg).

Post Edited (Marcello) : 2/20/2013 6:03:52 AM (GMT-7)

Yes I'm starting to warm to the idea of Elavil, with at least one prospective study showing statistically significant results for LPR. Various mechanism have been postulated for it and conceptually you can imagine some of them (our above 2 posts describing 2 possible mechanisms).

My NF was a year ago, and like yourself my sour fluid symptoms (whether they are refluxate or not) are worse but at least not acidic (they were certainly acidic prior to the NF). My post-op pH study confirmed a lower demeester but unfortunately I haven't had post-op impedance testing to formally demonstrate presence of non-acid fluid (it's certainly there though, as my pillow can testify).

All anti-acid medication has no perceivable benefit for me now so I'm off all of them, save for the occasional gaviscon for breakthrough heartburn. My surgeon was happy with stopping mine immediately post-op.


I'm not going to be able to get scopolamine for the next few days so I'm starting with another anticholinergic (antimuscarinic), the over-the-counter antihistamine diphenhydramine (US brand name Benadryl). I'll start with half the usual dose (so 25mg) tonight and see how I go.

Fingers crossed. This thing is an utter nightmare!

From Benadryl? That's great.. I may pick some up when at the pharmacy later today.

Can't wait to see what happens tonight. However just be wary that the medical literature I've seen says that oral anticholinergics are worse in both efficacy and tolerability than the transdermal route - eg see the 2nd reply which summarises it nicely: http://www.aafp.org/afp/2005/0515/ol1.html

Basically I'm not going to pass any judgement until i've tried the scopolamine patch :)

Less success 2nd day with low dose diphenhydramine, but less fluid than without it.

Yesterday, 2 days past 5 weeks, I had a pretty noticeable sore throat in the late afternoon and evening. It was reminiscent of how I felt before taking any PPI ever, but the tightness wasn't as bad.

I decided to start taking Elavil / amitriptyline again, by cutting the 25mg pill in half. Took it about 9am last night, and slept very well, woke up sleepy around 6. The tiredness feeling seemed to last a few days last time I tried it, and that was taking the whole 25mg pill. The reason I'm re-starting it is that it seems at some level, my body is over-reacting to either reflux or irritation. Its another thing where I figure "it cant hurt". So as long as it doesn't make anything worse, I'll give it several weeks.

This morning when I woke up, my throat tightness was more noticeable, needed to swallow a lot more. That continued to when I was eating my breakfast, I would be chewing away and have the feeling of needing to swallow, so I found myself taking small "empty" swallows as I chewed just to relief the feeling.

After eating however, the tightness seems to have gone away. This is definitely different from before I ever took a PPI, when the after-eating period was the worst for my throat tightness.

The only thing I did differently on Thursday and Friday (leftovers) was to get Chinese food -- sweet and sour pork along with chow mien and fried rice. I can only think that eating that contributed to my throat symptoms, but I don't know how. So I'm going to avoid that and eat better in general. I've been eating high calorie/high sugar foods since my fundo, which I'm sure isn't helping my digestion.

Another observation is that my throat tightness/swallowey-ness, seems to go inversely with my sour taste. If I have the sour taste, I am less likely to be swallowey.. and vice versa.

I came across a very interesting site/blog from a DO who specializes in reflux. There is lots of good information here about how many of our non-heartburn symptoms are from the body responding to reflux. And the defense mechanisms such as salivation, globus, actually help to prevent heartburn. Good read for LPR sufferers.

http://drkurtbarrett.com/serendipity/

Stopping PPI today..

Reasoning: PPI/acid blocker definitely helped my throat tightness (globus) ~2 years ago when I first took one. It took about 2 days to feel a significant difference.

Following surgery, I went about 9-10 days without taking a PPI with minimal throat irritation. I decided to get on one at about the 2 week after surgery mark, just in case. Even though I was taking them, I did not notice the sort of improvement I noticed before surgery.. but then again, the tightness post-surgery has never been as bad as before surgery.. so there was not as much improvement to be noticed.

So, I am blaming my current throat symptoms on the surgery and not on reflux. If my throat symptoms regress to the bad level they were 2 years ago when I first took a PPI, then I'll start PPI again and I should hope to notice similar (fast, 1-2 day) resolution.

Also, like all feelings, the symptoms come and go. Before I ever took a PPI, the symptoms were almost constant but even then, they let up at certain times. And I don't think the throat itself magically healed itself for an hour, then got worse, etc. I think this is all a symptom of how the body is reacting to refluxes, and not actual damage to the throat.

On top of that, we know there are GI side effects to PPI.

Another thing that occured to me, is that these weird outbreaks of white coating on my tongue are meaningful. I just don't know how. Way earlier in my journal I described that within 1-2 days of starting a PPI for the first time ever, I got a white coated tongue which seemed to subside in a day or two. On my first visit to an ENT, he saw large amounts on the back of my tongue, diagnosed it as Candida Esophagitis, and prescribed me Diflucan for 21 days. The treatment didn't seem to help, but I was also on 40mg Omeprazole 2x/day, and that can affect how Diflucan is absorbed.

I experienced the same white coated tongue a few days after the surgery, while off PPIs. Not sure what it all means, but I think having stomach acid can only help combat whatever is causing the tongue outbreaks.

I picked up a refill of my Diflucan, which I may try after I've been off PPIs a few days to see if it can knock out that candida and get that part of my system back in check.

While I'm here. I'll add to the journal that I started Triphala today, which is supposed to help the digestive system in many ways without side effects. It apparently has as similar gastric emptying effect to Reglan (there is a journal article showing it's effects on gastric emptying in rats). Not sure if I ever mentioned this particular tidbit before, but, before I'd ever taken a PPI, one of the few times I remember fewer throat symptoms is when I had terrible diarrhea like after a night of heavy drinking. I suppose that could have been alcohol numbing something, or possibly related to increased motility while my system was cleaning itself out.

Take care everyone.

Post Edited (drtinsac) : 3/8/2013 5:58:06 PM (GMT-7)

DRT,

I also get the white coating on my tongue most days of the week and do experience the sour taste in my mouth quite often.

I am almost off PPI's so I don't relate it to that. Taking a very small dose 1/8 of a Prevacid. Tapering down really slow. I feel that it has to do with reflux. I also am concerned about the sour taste and burning of tongue. I am wondering if it is doing any damage to esoph.

I have been thinking about what you said about the sour taste and that it could be just a reaction to the reflux. I don't know. I had this sour thing going on before surgery too.

Some observations, now about 4 days after taking my last ppi. My voice is different, it's deeper, stronger. I was actually enjoying singing this morning on the drive to work.

This afternoon though, I went out for a walk and there was that familiar throat tightness. It's hard to describe, but it's like the throat is light and tight at the same time. Swallowing is very easy, but does very little to relieve the tightness. Whether a psychological reaction or not, I found it very hard to be happy/smile while I was having that symptom today, reminds me of how I felt when I had it for years untreated, not knowing it was acid. I also felt unusually hot after that, my hands were hot. It felt nice since if anything, I tend to be cold (but that has been while on PPIs).

I know I'm in the group of people that will experience acid rebound since I've been on PPIs for a long time now; I'm not sure what effect the week off of PPIs I took, though I was also taking pain meds and my system was not normal during that time either.

Given that I believe my reflux symptoms are tightness in the throat, and sour taste, rather than heatburn.. then it's possible that now that 72 hours have passed since last PPI (therefore all stomach pumps should be back active), that I'm experiencing a heightened amount of acid. Perhaps the surgery irritation, mixed with strong acid, is not playing well together. I'm going to try to ride it out for another couple of days. The tightness I experienced was definitely NOT at the same level I had before any PPI treatment. If the previous tightness was 10, then this was about a 6, and it seemed to subside to some degree for my drive home. It would never have subsided that way before surgery and before PPI.

dogbones, it's the same way for me-- when I have the tightness, which may be similar to the "lump" (I don't describe it like that, a lump sounds like it's hard to swallow but the tightness I have makes it easy to swallow), I do not notice the sour taste. But that is not to say it's not there. In my case it might just be that I'm swallowing so much as to keep the taste at bay; since both of them only occur when I'm awake (and my body's sensors cause that reaction), there has rarely been a time where I did not have the urge to swallow. To not swallow is profoundly uncomfortable, yet it gives no relief. Another theory is that the body has levels of reactivity to reflux.. for milder reflux, the sour brash might be enough for the body. For more acidic reflux, it might just tighten up the throat which a)helps to prevent acid from getting into the mouth and b)makes the person want to swallow, which is our body's way of helping food down the esophagus.

I don't know what role candida might play in it. But now that I've gone on and off PPIs several times, I am 100% certain that my throat tightness is acid related. And I don't think it's from direct acid exposure to the throat, otherwise I doubt I would get 1-2 day relief from the tightness through a PPI.

For post-surgery people, there is hope. Another forum, Heartburn-help.com, which seems rather inactive these days, has messages where lots of people experienced globus (which I'm hoping translates to tightness as well as lump in throat) for months after the surgery.

If I'm indeed in a hyper-acidic state, and what I experienced today was the worst of it, then it's not even close to as bad as it was before surgery. So there is success to celebrate and relief to look forward to in the coming months.

Post Edited (drtinsac) : 3/11/2013 6:20:29 PM (GMT-6)

DRT,

I truly believe you are having rebound from the PPI's. I would suggest you taper down very slowly. I know that you are eager to be off the meds. So am I, but when I went off PPI's cold turkey, i had the lump sensation and urge to swallow all the time too. I have been tapering off the past 5 months and am almost totally off them with very little rebound.

Pick a date and slowly titrate down. Keep taking the same amount of meds for 3 weeks and then step down again. This will really help with the rebound. JPT has his taper down PPI treatment on Linx club. He got off the meds with no rebound.

Good Luck.

DRT,

Sounds like a good plan. Give yourself time to heal before changing things. If you change things, you will not know what is working and what are the real symptoms.

DRT,

I think damage has been done and your body needs time to heal. I had linx almost a year in May. I feel like I am still healing now. I am healing very slowly. It took years for our bodies to get to where it is now. I feel it could take a few years for our bodies to heal.

Be patient and take one day at a time. I have a hard time being patient too. Everytime a new symptom comes along, I wonder if this is normal or am I regressing back to pre-surgery reflux. I know that we both feel like things should be a lot better for us at this point since we did have surgery and we do have high hopes to have a normal life again. I know I do!!

I want things to get better for myself too. I just keep hoping they will and that I do not have to go back to the docs again.

Let us know if you hear from NP today. Want to know what she says.