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drtinsac journal - GERD/LPR - part 2

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Posted 4/8/2013 8:39 PM (GMT -5)
Hi Sk. The Elavil part was covered in the first thread :)

I was on it for 4-5 weeks with no benefit, and tried Olanzapine over a week with no benefit.

The more I read about burning mouth syndrome, the more it seems to be what I have. Burning tongue, sour taste. Though I don't know what role the globus plays in it, I know the globus was from acid and I know I never had any sour taste until I started the acid reduction meds.

I'm starting alpha lipoic acid today. It's thought to help in BMS. I'm also going to ask my PCP if I can try another BMS treatment before I see the GI doc a month from now. If she wont put me on anything new (I'm thinking pregabalin), I might try myself on another round of Olanzapine just out of curiosity. I also have plenty of Elavil I could try but last time I tried it, I got this nervous jittery side effect that I definitely want to avoid.
Posted 4/9/2013 8:19 AM (GMT -5)
drtinsac,

Any improvement on the globus? I also never had sour taste or globus until I took ppi's daily. I have recently stopped my ppi and after about 2 weeks the sour taste is at a min but the globus still comes and gos. I'm starting to think that maybe it's possible that the 24 hr ph probe altered my UES?

Posted 4/9/2013 8:55 AM (GMT -5)
Hi Doggbones. I'll have more on the globus later this week. Last night I realized after getting into bed that I had not taken my before bed Pepcid. I did feel a bit more throat tightness this morning.

ALA reportedly causes heartburn/reflux symptoms even in people without any.. I took 2 pills last night with dinner and felt increased acid taste in my mouth. So the increased throat tightness this morning could be a mix of having taken the ALA and not taken the Pepcid.

Anyways I'm going to go a few days taking only 1 pepcid in the AM. And 750mg of ALA/day from 3 pills.

We are different because I had strong globus before taking PPI, which PPI helped quickly. Then the sour taste started and later, the burning tongue. I'd like to believe that the surgery will take place of the PPI eventually, so I'll be medication free which would then leave me with no globus, no taste and no tongue burning. That's the hope.
Posted 4/13/2013 4:08 PM (GMT -5)
Well I went 3 days on a single Pepcid (famotidine) in the AM. It wasn't that bad after lunch and in the evening.. some throat tightness, but continued sour and burning tongue.

Today was my first day taking nothing. Breakfast went fine.. some tightness afterwards, not terrible. Continued sour taste, tongue burning down a bit.

I'm also not taking the ALA anymore. Since it's been known to cause heartburn in people who never had it, I figure I'll avoid it and see if simply getting my acid levels back to normal will help with the tongue/taste issues which I didn't have before taking an acid blocker.

I emailed my PCP to see if I could try Lyrica since there is evidence that it can help for both hypersensitive esophagus and burning mouth syndrome. We'll see what she says.

I figure I can always take Elavil 25mg again. I have a stock of it.. it is considered a first line option for esophageal hypersensitivity and BMS also, it's just that it didn't have effect on my tongue/taste symptoms when I tried it last. Of course, I was on a high dose of PPI at the time. Now, being off PPI and hopefully being able to stay off even Pepcid, I might try it again to see if it will help with the throat tightness feeling.

I really don't know what to expect without any acid blockers. I'll keep updating as I go. I'm basically 3 months out from fundo.

Speaking of recovery, physically I think it's been going very well. I've been lifting weights at least the last 4-6 weeks, and about 2 weeks ago I started a tough workout program called Bas Rutten's all around workout, which is lots of shadow boxing, knees, push ups, squats, mountain climbers and various other exercises, for 30 minutes straight. There is lots of ab work in the routine, but I am not doing any of it yet, I substitute "good mornings" when ab work is called for. I certainly waited until I was ready before I started it, and I've had no problems doing it now. I'm also slugging a heavy bag as hard as I ever have, with no problems/pains in the stomach area. I'm down about 15 lbs from before surgery, but I've lost quite of a bit of fat and I think the muscle will go back on with little extra fat if I continue this workout.
Posted 4/13/2013 9:42 PM (GMT 0)
Wow we all kind of the same symptoms, its weird is there any explanation why the globus come after getting off the PPI? I also have the like sour taste in my mouth I really believe if you had so endoscopies and PPI can make your symptoms maybe worse? I think that's what happened for me but my ENT did scope and found redness in my layrnx but I won't know until some more testing I hope we all get better :) its hard waking up everyday with new symptoms LOL
Posted 4/13/2013 5:08 PM (GMT -5)
Another thing to factor in is surgery, which for some people causes a globus sensation they never had before.

For me, it was my only symptom that I had when I told my doc about it and was diagnosed with reflux. The more I've experienced this, the more I think that for me, globus is how my body responds to reflux. I used to think that the reflux had reached my throat, which irritated it and caused the globus, but now, after having surgery, reflux events are very rare due to my new anatomy, as are proximal reflux events that would even come close to my throat. Yet I still had globus after surgery. That globus might have been from surgery and/or from stopping the PPIs which I tried.

Having been on acid blockers for so long, I will have rebound which I think I also experience as globus. I did feel some heartburn after a meal a few days back, but I'm 35 and can count the # of heartburn episodes I've ever had on one hand.

Anyways. Right now I'm still probably in a rebound period but I'm going to try to stick it out without taking any other blockers. Once the acid rebound period passes, then any globus left over could be from surgery, or continued reflux and a hypersensitive condition since I believe I should have very few reflux episodes now.

Something else I'm not sure if I mentioned, but I used to belch a LOT.. On my 24 hour Ph study, I belched like 120+ times. Now I might belch a few times a day. Swallowing air was not the issue since I'm swallowing as much now as I did before.. that was pure anatomy, probably that small hiatal hernia. I have to think that less belching will decrease acid exposure to my esophagus/throat and airways. It's also possible that whatever was sensitized before surgery is still sensitized, which is why I'm thinking a sustained trial of the 25mg Elavil might be a thing to try if my pcp wont give me Lyrica.
Posted 4/14/2013 8:41 AM (GMT -5)
Adding to the journal. No claims that this is interesting..

Last night I woke up (dogs wanted to go out) and noticed a burnt throat, like when I swallowed it was scratchy. Definitely felt like acid had been there. I drank some water and chewed some tums and after a while the acute scratchy feeling was gone. That is another symptom I've only had a few times in my life, so perhaps it's also a result of acid rebound. This morning, there was a slight trace of it but nothing bad. Some throat tightness but not bad so far, and as opposed to before surgery, I am no longer having strong globus right after eating.

I got an email from my Dr. that she is giving me Lyrica (pregabalin) and I'll titrate the dose up to 50mg 2x/day. There is evidence for pregabalin helping with hypersensitive esophagus, though that was at 150mg 2x/day. There is a case study of pregabalin for burning mouth symptoms (tongue burning and funny taste) where a woman had relief from 50mg/day. So my dose of 100mg/day should hopefully help; assuming the taste and tongue symptoms persist now that I'm off acid blockers. My Dr. said the drug might not be covered, and if it's not we will try Neurontin (gabapentin).

Post Edited (drtinsac) : 4/14/2013 7:46:20 AM (GMT-6)

Posted 4/14/2013 10:13 AM (GMT -5)
Hi drtinsac,

Sorry to hear you're still struggling with some of the same symptoms.  That said, I'm impressed with your very educated and proactive actions to counteract the symptoms you're still experiencing.  You have an excellent attitude, which is always more than half the battle. 

I am confident that with the way you're educating yourself one step at a time, and implementing possible "fixes" for the discomforts you're still struggling with, you will eventually get you to a place where you can live comfortably.  I'm sure that in the process, you're educating the doctors you're working with as well, and they will use your experience to help others who come to them for help.

Thanks for continuing to post your journal entries.  I have absolutely no doubt that they will help many who seek answers via the internet.  Good luck with your search for answers! 

Take care,

Denise

Posted 4/14/2013 10:29 PM (GMT -5)
drtinsac, yeah I am starting to wonder if it's nerve or anxiety thing, but I wont explore anxiety pills until after my test and whatever my doctor recommends if it does not get better maybe I will try and do a small dosage like you and see if I can see any improvement, keep me updated if you go through it good luck, the lump in the throat is by far the most annoying symptom I have, I read so much about it that I starting to confuse myself, some say its vegus nerve, some say anxiety, some say spasm, on and on,

I got mine after being on the PPI so I wonder did the ppi turn my gerd to LPR? because some of the side effects or things I have gotten since being on ppi for 4 months was chest pain, and pressure in chest and sharp pains and the globus after I got off and sour taste, I wonder what is causing this?
can't assume anything until my future tests. good luck my friend. :)
Posted 4/17/2013 9:32 PM (GMT -5)
3 month update.

It's been 8 days since I took my last Pepcid; and I had been tapering down for a few weeks. I think I was noticing more throat tightness when stopping, but it has waxed and waned and is much much better than before surgery (off meds).

Knock on wood, but I think the surgery helped my throat tightness feeling! I am still having the tongue burning and sour taste, but it seems to have decreased a tad since stopping the meds.

Lyrica requires prior authorization request from my Dr, so I believe that is in process, I hope that can help with the burning mouth symptoms.

My voice is doing somewhat better; it still becomes "tired" after a bit of talking, but now it seems to be more powerful and deep than it was while I was on acid blocking meds. My throat does feel sensitive still, for example if I eat even mildly spicy food I can feel it burning. So there is still something wrong there, and I wouldn't doubt if that is related to the burning/taste as well as any remaining globus feeling. Perhaps those will decrease in time, I know 3 months is early in fundoplication recovery for LPR patients. But I really wonder how much actual LPR reflux I had, since after fundo I seemed to have very similar symptoms as before surgery, for months. Not to be a broken record, but I think the globus sensation was from increased reflux in general, not necessarily that which reached my throat.

For example this morning, I had what seemed like increased tightness. Within a couple of hours, it was feeling normal again. If the throat tissues are very sensitive (mine is probably overly so as evidenced by the sensitivity to spicy foods), I don't think they would "heal" and feel normal within hours.

Before surgery when off meds, within a couple minutes of eating I would feel the throat tightness come on strong. And between meals it would be very strong also, lots of swallowing. Now I have much less throat tightness overall, and there isn't that huge uptick in tightness after meals.

To be continued. But I'm feeling good about the throat tightness now that I've been off acid reducers over a week. I know there may still be rebound going on for some time. If I feel increased tightness I can chew a TUMS though I don't notice much effect from it; I want to stay away from acid blocking pills for a while.
Posted 4/19/2013 7:50 PM (GMT -5)
Hi Drsintac,

I was reading your journal because you mentioned trying baclofen.

"That was my last visit, about 3 weeks ago. I am now on the baclofen and other than the drowsy/drunk feeling side effect, is it not helping at all. Why? Because, according to those papers that describe my reflux condition, upright only refluxers have something about the LES that decreases it's ability to stay properly closed in the upright condition which lets an aerosolized reflux up which evades detection by normal ph monitoring (which I had). So decreasing transient LES relaxations with baclofen would probably not help me at all since the LES is not relaxing, it's being pried open by some characteristic of the anatomy and allowing aerosolized reflux"

I wondering if that's whats going on with me. I'm usually symptomatic when I burp or have a gurgling noises in my esophagus. Did you find that you were the same way?
Posted 4/19/2013 8:04 PM (GMT -5)
Hi TheSixness. I did not notice any connection between my burping (which I did a lot of, 120+ episodes during my ph study) and other symptoms, but then again, I never noticed any lull in burping. I have some gurgling in my throat, which I still have, seems to be a pressure release or something. But I never tied that to symptoms (or relief), either.

When I was off PPI and had the throat tightness.. the only times I noticed relief is when I had a very upset bowel (diarrhea). Or sometimes, after I ate a big meal like a Chinese lunch plate, for some reason my throat felt more normal for hours afterward. This is before I had any weird taste in my mouth; but back then, when my throat tightness decreased I would sometimes notice the tongue burning.

I wish I understood all that goes on in there!

Hope you have a nice weekend.
Posted 4/19/2013 8:25 PM (GMT -5)
drtinsac
Have you read about the "inlet patch" on the esophagus, near the upper spincter . A group of cells that produce acid and can be visualized by barium and endoscopy. Wonder what your thoughts are about this. Thanks.
Posted 4/19/2013 10:56 PM (GMT -5)
Hi Pat, I have read a little about that. But as you suggest since they are (should be) noticed on barium swallow and endoscopy, and I never heard it from my doctors, I never looked much into it.

Though, the discussion section of this paper says it's often overlooked.
http://www.hindawi.com/journals/rrp/2011/460890/

I have read loads of papers on LPR and globus, refractory GERD etc. and rarely ever see inlet patches mentioned.

I don't think I have it, since.. still knocking on wood, the fundoplication seems to have taken care of my globus sensation. Now I'm mostly focused on figuring out the BMS-like symptoms I have (and speaking of BMS, I've never seen inlet patch mentioned with respect o BMS symptoms either)..
Posted 4/20/2013 8:44 AM (GMT -5)
drtinsac
Have you been reading Dr. Louie's blog. I find it very interesting and think you might want to pose a question to him. He has been very responsive to other forum member questions. (He is mostly Linx but has answered fundoplication questions.).

One item refers to right side throat burning and he mentioned the inlet patch. This illness is such a mystery in so many ways and we look at everything we can to help ourselves. I agree that it would have been noted during barium and endoscopy .

I watch your comments and your research too. Thanks. Pat
Posted 4/20/2013 12:42 PM (GMT -5)
Drsintac,

I was reading through your journal again and came across the page when you asked about restech exams and PH impedance exams.

Since I have finally done both, I have found that my exams do indeed differ.

My bravo exams that I had have found that my demeester score is
1.4 my first time and
2.5 my second time.

My Restech showed that I had
1 event upright
144 event's supine
Ryan score of 32.

My Ph impedance exams
my first time showed...which is off meds
43 total refluxes
35 non acidic
8 acidic
Low to none event's during the supine, mostly an upright refluxer

My second ph impedence exam on 40mg of omp plus zantac at night showed
55 total refluxes
47 non acidic
8 acidic
More reflux indicated during supine, but mostly upright reflux.

Not sure why there is such a vast difference between my restech and my PH impedance exams. My restech exams showed that I'm mainly a supine refluxer, whereas, my PH impedance exam should that I'm mainly a upright refluxer....Also, I'm not sure why there is a 100 event difference between the exams...

As for the bravo capsule...I consider it useless. Doesn't detect aerosolized reflux, non acidic reflux, and it doesn't detect whether it's coming up or going down...so eating food can look like your refluxing on this exam.

Did you noticed any difference between the three exams when you had them done?

Post Edited (TheSixness) : 4/20/2013 11:48:50 AM (GMT-6)

Posted 4/20/2013 7:26 PM (GMT -5)
I only had the regular ph impedance study done, off meds. I had high #s of weakly acidic refluxes. SAP of 99 something for sour taste and weakly acidic reflux. I did not have throat tightness during the pH study even though that was my only symptom before starting PPIs.

From what I read of refractory GERD, symptoms associated with weakly acidic reflux = hypersensitive esophagus. But the 1-2 treatments we tried for that didn't work.

I'm still feeling better throat wise after my fundo.. even ate bad stuff today, some fried chicken wraps at Wendy's, no throat tightness after that. I just have to figure out this sour taste/tongue stuff.. or maybe it'll go away on it's own eventually as things heal.
Posted 4/21/2013 2:54 PM (GMT -5)
drtinsac,

I also experience the sour taste and burning mouth and tongue stuff too. I do not understand it either. I have had it for several years now, pre and post surgery. Also had it pre and post ppi's too. I would be so happy if I could get it taken care of and stopped once and for all. I have tried elimination diets. I have given up corn, wheat, gluten, soy, eggs and dairy in attempt to heal myself. I have been on this form of eating for two years now and it does not solve the issue.
Posted 4/22/2013 11:13 AM (GMT -5)
Hi BG- I may have already asked, but have you had treatment specifically for burning mouth syndrome? From what I read there are several approaches, from painkiller mouth rinses, to antidepressants, atypical antipsychotics, and these drugs like Lyrica and Neurontin.

I tried, for over a week, eating only chicken and brown rice, so no gluten and hardly any sugar. Made no effect on my tongue/taste symptom. I never noticed any consistent effect of diet on my throat symptoms either. Anyways I'm still eating healthy but do enjoy a sweet thing now and again.

Posted 4/22/2013 1:18 PM (GMT -5)
drtinsac,

My diet does not have an effect on the tongue thing at all. I eat healthy because of the reflux issues and I am also a very health conscience person.

I have not tried antidepressants and other drugs for the burning. I do not like the drugged out feeing from these kinds of meds.
Posted 4/22/2013 10:01 PM (GMT -5)
BG, I am the same way, health conscious, very good shape physically. I hear you on the drugged out zombie like feeling.

When I tried Elavil 25mg, that sensation lasted maybe 5 days then it was pretty normal. I had enough energy to do my normal workouts the whole time, I just felt more tired when sitting at work during that 5 days. I think it is a fairly easy drug to try. While I was on it, I even went on vacation and ended up doing some rather strenuous hiking around Mt Rainier without feeling wiped out or even a decrease in energy from normal.

The only med I've read about helping with BMS, without that sedation effect, is alpha lipoic acid. But the evidence is mixed on it, and many people feel it gives them heartburn (which for you and me could mean it gives us globus, or other throat symptom).

Still, personally I am willing to try these zombifying drugs because I know the sedative effects can wean as the body gets used to them.

I got a letter from my insurance company that Lyrica has been denied due to lack of evidence. Apparently I can appeal it by providing 2 or more peer reviewed journal articles that suggest it may help with BMS.. so I'll give that a shot tomorrow. My PCP had offered to put me on Neurontin if insurance wouldn't cover Lyrica, but she hasn't been in contact lately.
Posted 4/23/2013 1:49 PM (GMT -5)
drtinsac,

Let us know if you get it approved. I would love for an alternative/natural treatment to help with BMS. I have been on aloe for 6 months now to heal the esoph. Have you heard of trying L-glutamine? My doc says it helps heal the gut and esoph. He said you have to take really high doses to have an effect. I am thinking of trying this next.

What is your thoughts on it?
Posted 4/23/2013 2:22 PM (GMT -5)
My PCP emailed me overnight that they denied it (which I knew) and that she was giving me gabapentin (Neurontin). She's giving me 300mg / day, 100mg 3 times. That is apparently a pretty low dose. If there is any hint of it helping, I'll see if I can get a bump up. I did read a paper that showed 300mg a day did decrease anxiety in a population of cancer patients. I don't have abnormal anxiety, but if it adds a relaxing but not zombielike effect then I wont mind taking it for a few weeks to see how it goes.

I've also read online that some people who have seen Dr Koufman in NYC have said she prescries a low dose gabapentin coupled with 10mg amitriptyline. So I could always try cutting my 25mg elavils in half and doing the low dose gabapentin. The 12.5mg of elavil didn't help me but didn't sedate me initially the way the 25mg did, though I did get a weird shaky/nervous feeling when on it.. though I was trying other stuff at the time which may have contributed.

I have probably tried L-glutamine. I might have a big tub of the powder. I've tried so many things but honestly it could be said that I didn't try any of them (besides the prescription drugs) "long enough".

It seems like when I would try these other supplements, they might irritate or make things worse, so I've gone to a pill-less approach lately. That, and the actual research support for many of these supplements is lacking, so it's even easier to ditch it than to stick with it if it seems it's causing things to flare up.
Posted 4/23/2013 4:31 PM (GMT -5)
drtinsac,

I get worried about the supplements making matters worse too. I have tried just about everything that I can think of too.

I will probably try the l-glutamine since my internal medicine doc said it could be helpful.
Posted 4/24/2013 1:05 PM (GMT -5)
Last night, took one 100mg gabapentin at 5pm.. 2nd one at 8:45 before bed. I felt a little extra tired in the evening, but nothing too bad. Felt just a tad slow getting out of bed, but after that (and taking another one when waking up), not bad. I'm at work, good energy, hardly noticing any side effects.

I'm not sure yet whether it's helping with the tongue. If it is, it's not much. The taste is still there, but seems different, less sour and more salty sometimes.

I read a paper today entitled "Gabapentin in the Treatment of Glossodynia". The patients described in that study had very quick results (1-2 days), but they started at 900mg rather than 300mg like I am.

The paper on gabapentin and anxiety among cancer patients, showed decreases in anxiety after 4 weeks then again decrease at 8 weeks. I don't know if that's the medication having stronger effect over time, or people just being more comfortable in general over time. Again, anxiety is not an issue for me, I'm more interested in how long things take to work.

Tomorrow I have a barium swallow.. and in another week and a half, I'll see a GI doc. Though I'm not sure if I need a GI doc now. I'm actually more interested in seeing a neurologist to see if they can find a reason for the burning tongue/taste. I'll inquire with the GI doc and if he's not open to it, with my PCP.

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