drtinsac journal - GERD/LPR - part 2

This'll probably be the last post in this thread as it's over 100 now.

Kind of sad that after all these posts, I am no better off symptom wise than I was when I started part 1. But I am learning quite a bit.

I've been thinking about what a disappointment my 2nd opinion ENT visit was. I'm sure I'd built this ENT up in my mind as someone who would take time to really think about the connections between my symptoms, to at least come up with a theory or two. But that was not at all what happened. She gave me a smell test which I passed easily, looked in my ears and said they were fine.

I had a list of things I wanted to get her opinion on, such as, "I have done lots of research on BMS, yet I never see it mentioned along with globus/throat tightness, or throat sensitivity to spicy foods". (These symptoms more or less coincided for me). Her response "Yeah that is strange."

Really, honestly, I see the future of medicine being where a computer processes a ton of information: patient testimony, published research/case studies, lab/test results, attempts at treatment, and (to take advantage of all the other patient data within a medical system) the symptoms/test results/treatments of others. Now THAT would be advancing medicine. And patients wouldn't have to wait months for visits. Not to mention all the cost savings.

Now to my own treatment. Today I decided to try that allergy cocktail again, and I definitely have a slight decrease in tongue burning/throat/voice/tongue symptoms. Not huge, but more than anything I've taken before. When I tried only the Claritin/Pepcid part of the cocktail (leaving out aspirin), I didn't notice any help, so I'm thinking the painkiller may be the difference either on its own, or combined as an anti-inflammatory with the others. The last time I tried the cocktail, I had an uptick in stomach chills within a couple days, which is why I stopped. We'll see how long I can stay on it this time.

I've also noticed more anxiety lately, which seems to stem from being self conscious about having an unhappy look on my face due to the constant tongue burning/sour taste. I've had good success with rational self talk, keeping in mind that I'm struggling with symptoms right now and I have the right to my feelings about it, regardless of what others might think (not that anyone even notices or puts much importance in it).

I've found that lately, I've been "chasing" feelings.. trying to get BACK to where I was at some point in the past symptom wise. What a grand illusion that is. Besides being impossible, it's quite the opposite of accepting one's current situation in life. That non-acceptance probably breeds anxiety and stress all by itself. I have to keep reminding myself to live in the moment, and do my best in this moment, without feeling sorry for my current situation or constantly thinking about what I might be doing to make symptoms worse (therefore what I might try to make them better). Sadly I think most of it is out of my control, so it is in my interest to remind myself of it and that I can still enjoy life despite my symptoms, while doing what I can to continue to help myself.

On that note.. my next 2 appointments are July 8th for a repeat endoscopy (my first since fundoplication). Since I haven't had significant reflux for ~7 months by that point, if they still find eosinophils in my esophagus, then there has to be something allergy-related going on. Eosinophils are sometimes caused by GERD, but also may be an allergic reaction. When I talk to my GI before the EGD, I'm going to ask him what he will do if there are still eosinophils there.

July 16th I see the neurologist. They gave my case to a brand new neurologist, a guy younger than me (I'm 35). I plan to go in there, as always, with specific ideas for my treatment including trying a higher dose of neurontin, and/or trying that pramipexole treatment if that doesn't work. I've emailed my PCP about trying higher neurontin dose before I even see neurology, to rule out whether its going to work. She had previously prescribed me 100mg 3x/day, but from what I read that dose isn't going to do much.

Here's a brief summary of both of my threads so far:
- Something caused throat sensitivity, resulting in lots of swallowing. PPI helped 90%.
- Coincidentally, tongue was burning and sour taste was present (which is a phantom taste, not anything about my saliva)
- Fundoplication, by reducing reflux, helped my throat though not as much as a PPI, but did nothing for my tongue/taste symptoms.
- In short: I probably never had a serious reflux problem, but some sensitivity that was not successfully treated. So the fundoplication is a bandaid just like a PPI was.

Take care everyone.

Post Edited (drtinsac) : 6/14/2013 10:34:02 PM (GMT-6)

Thanks Denise. Though I wish none of us had to come to a place like this, I am glad that there are others around who can understand what it's like. The one good point about my 2nd opinion ENT was she definitely said she understood how much of a toll it can take when a person has unrelenting symptoms.

I just got an email from my PCP, she's giving me 300 mg 3x/day of gabapentin to try, so we'll see how that goes..

Hi BG, I'll start a new thread for sure, I'm not going anywhere and will keep updating these threads until the problem is gone or I've exhausted all Western medicine can provide..

The past few days that I've been on 900mg gabapentin (300mg, 3x a day), I've felt pretty good. In the morning, my throat doesn't feel as tight as it had been. I'm not taking any acid blockers.

The burning tongue, might be slightly improved and so might the sour taste. Or it could be that the gabapentin increases some happy chemicals to the point that it's easier to live with it all.

If that's what I have to live with, I'd say it's better than it has been. The only side effect I've noticed is some tiredness, which seems to hit me most around noontime, but is much better than the tiredness I experienced on amitriptyline and olanzapine (neither of which helped my symptoms or made me feel as good as the gabapentin does). The work I do requires that I can think clearly, and I'm happy to say I'm still able to do that on gabapentin.

I've also been avoiding dairy and wheat for the past week. And I've been taking r-lipoic acid after dinner. It's similar to alpha lipoic acid which has been shown in some cases to help burning mouth syndrome, yet it's so far been better as I haven't had the reflux-like side effects I had from ALA.

Hi drtinsac,

Thanks for continuing to share your journey.  I hope this medication does the trick for you.  I know it's tough to deal with. It sounds as if you have a good doc working with you.  Good luck with it all!

Best wishes,

Denise

Hi BG. I was going to start a new thread when this one gets locked. Have you had any changes/improvements lately?

Sadly, I don't think the gabapentin is helping my symptoms much if any. But it does make me feel "looser", like I've had a beer, which I guess makes it easier to live with. My subjective experience of the burning or taste is hardly affected. But it doesn't make me drowsy or tired, and I can still do my relatively tough workouts without having lost any strength or endurance.

I think after a week of 900mg, I'd know if it was working or not. I'll keep with it though. I've made a list of many of the possible treatments for BMS, and I'm going to take the list with me in to my neurology appointment. I've seen plenty of paper/case studies where a person had tried various drugs with no change, then another drug does the trick. So basically I'll say I want to try all of these (one at a time of course) until I've exhausted everything that might possibly help.

Here's that list, as of today, of drug treatments for BMS that I've located.

--What I've tried:
amitriptyline 25mg
olanzapine 5mg
gabapentin 900mg

--Haven't tried:
Pramipexole .75mg
Milnacipran (100mg/day, starting at 15)
Lyrica (pregabalin)
Amisulpride (antipsych) 50mg
Sertraline (ssri)
Duloxetine 50mg
Catuama (herbal)
Paroxetine/paxil (SSRI)

----

 

So, lots of stuff to still try. As a healthy youngish person (35 anyway..) I see no reason not to try anything and everything. Im also going to ask for tests, since this sensitivity/neuropathy seems to affect both my tongue and throat. I rarely see anything about throat symptoms along with BMS.

 

 

What you're describing is almost textbook BMS. I have not had hormone levels checked, but I'll put that on my list of stuff to look into.

I'm not really sure what tests can be done beyond what you've described. I have read that if a tongue biopsy is analyzed, people with BMS have some different makeup of nerve fibers. But that doesn't say anything about how to treat it, from what I can tell. That tongue biopsy may be something only done by research labs, and not something offered to patients in normal practice. I think there are quite a few tests like that. I believe I read about something where a nerve block(?) could be tried, but know nothing about it. I'll certainly ask the neurologist.

As for what tests the neurologist can do, I'll explore whether they can do imaging of that 'hemangioma' near my optic nerve. Or other imaging to see if the nerves that affect my tongue and throat are being irritated by something physical. That's my idea anyway, since I only see BMS alone and never accompanied by a sensitive throat or globus. Perhaps wherever the nerves travel through, they are both being irritated by something.

The other thing I've thought is that this is just nerve damage done by 2+ years of ignoring the reflux that was exacerbating my symptoms. Thing is, if that were the case, I don't see why my symptoms would wax/wane in terms of intensity despite always "being there".

I'm preparing for the neurologist to say there's no tests they can do. In that case, I'll just insist that we try some of those drugs I haven't yet tried.

You might try asking your doc to try gabapentin. It has been shown effective in some cases of BMS, as has pregabalin which is similar (but is not generic so insurance might not cover it). I know you don't like the zombifying effect of elavil, but gabapentin in my experience is nowhere close to what elavil does. It's relaxing if anything, not zombifying.

No I don't really think mine gets better or worse, but I am better at distracting myself from it some days.

I see reflux listed in BMS papers as something that needs to be ruled out, so it may be for some people related to reflux.

I've been taking r-lipoic acid after dinner for the past couple weeks. Last night it bit me, I had heartburn high up, felt like throat burn. I chewed some tums and that seemed to help it. I'll probably stop taking it as there is only mixed evidence for alpha lipoic acid helping with BMS, and anything I can do to decrease burning, I feel I should.

What do you mean by neurogenic ?

Not sure exactly where you're referring. But I mean the fact that I'm having sour taste and burning, is indicative of a nerve problem. I don't know what the problem is, but something is wrong. The sour taste is referred to as "taste perversion" because it's not actually about the substance (e.g. saliva), it's the nerves sending the signal that there's something sour in my mouth. And burning, and pain.

Hi BG. I feel like I'm on a merry go round of treatment attempts.

In the past few weeks I tried the 900mg of gabapentin, with or without a h2 blocker at night, sometimes with claritin. I don't think the claritin makes any difference.

And I'm tapering down the gabapentin now, to 300 mg a day which is very little. It was not helping.

I definitely noticed that drinking alcohol gives me a sore throat the next day, and alpha lipoic acid causes me heartburn and also contributes to sore throat. I tried 2 weeks of a no dairy, no gluten, and no soy diet, with no change at all, so I'm basically back to eating everything but I rarely eat any of those things.

The best pain relief I've found is to take 2 Aleve in the morning. Since yesterday I started taking a PPI before dinner, on the off chance that I have reflux occasionally, it would be worse for my throat if it was acidic reflux.

I also tried switching to an air mattress, from a latex mattress just in case I had some weird latex allergy that only affect my throat. So far, no difference, so I'll probably go back to my comfy latex mattress soon.

This coming Monday will be my first endoscopy after the fundo. If they find eosinophils in there, like they did before (even though not enough for a diagnosis of EE), I'm going to push the allergy angle since with that, and having an elevated igE, are the ONLY unusual things they can find with me.

A week after that is my neurology appointment. I'm compiling information on treatments for BMS I've yet to try. One of them, Cymbalta, is an SNRI, and there is a case study showing 40% improvement after 4 months, and full resolution at (if I remember right) 6 months. Though, that was in a depressed woman, which definitely isn't me. Though I was surprised that something like this might take 6 months or more of treatment, since other papers have described full resolution (e.g. with Olanzapine) in a few days. So I'm also going to push for more testing on what could be affecting that area. Seems like an ENT would be involved, which would be strange since my ENT has said he can do no more for me.

We'll see..

I believe they do the biopsies automatically. I'm having it done at the same medical organization, but by a different doctor at a different office.

drtinsac,

Anything new going on? How are you doing?