Non acidic reflux treatments?

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TheSiXness
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   Posted 4/17/2013 8:04 PM (GMT -6)   
So who on the forums has non acidic reflux and what are you doing to treat it?

my main problem seems to be stemmed from non acidic reflux. I have had a ph impedance test recently that showed 50 + weakly acid/ non acidc relfux. I don't respond to anti acids at all, but I'm currently taking pepto bismol, carafate, and nortriptyline. Hoping to get baclofen or possibly ursodeoxycholic acid prescribed to see if they help my symptoms since the traditional therapies don't seem to be effective.

skull skull skull

Post Edited (TheSixness) : 4/18/2013 4:54:42 PM (GMT-6)


TheSiXness
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   Posted 4/18/2013 4:54 PM (GMT -6)   
So I picked up some equate version of pepto bismol and I got baclofen 10 mg perscribed for me by my Doctor. Will see how it works, not sure if anyone has used it before but my doctor has me taking 5mg at night. Not sure that's how it's suppose to be taken. I'm going to take it during the day, 5mg per meal and maybe one at night. The pepto bismol seemed to help my asthma like symptoms right away, so I'll keep taking that.

Anyways, if anyone is having problems with their traditional PPI therapy, read this link. It will give you some good information regarding nonadcidic reflux.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027332/

skull skull skull

Post Edited (TheSixness) : 4/18/2013 4:59:10 PM (GMT-6)


DOGGBONES
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   Posted 4/19/2013 7:27 AM (GMT -6)   
Interesting link. I'm sure you're aware of the side effects of baclofen, just watch for ticks and twitches.

TheSiXness
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   Posted 4/19/2013 11:09 AM (GMT -6)   
Haven't noticed any seizures yet... Hopefully I don't get them 0.o
Anyways, I do feel a bit drowsy and my throat feels tighter, which is making my breathing harder. My chest seems to feel alright at the moment, will have to try it out on a heavier meal than roman noodles. The only side effects right now that I have is drowsiness, more noticeable shortness of breath than usual, and a noticeable headache.

Will continue to try it. I only had 8 acidic refluxes and 50ish non acidic refluxes indicated on my last ph exam, so my reflux isn't that significant, but I can't control it, which makes my symptoms very problematic.

TheSiXness
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   Posted 4/19/2013 11:13 AM (GMT -6)   
Doggbones, what was your ph results the last time you had it done? Did you have a great number of refluxes?
-TheSixness

drtinsac
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   Posted 4/19/2013 11:23 AM (GMT -6)   
Is the nortripyline doing anything?

When you are off all meds, what are your main symptoms?

I tried Baclofen but didn't notice any effect other than the sedating. I was taking pills about 30 minutes before meals if I remember right. My ENT said that transient LES relxations (TLESRs) are the main cause of reflux and he may be right. But there is also the anatomy itself, i.e hiatal hernia, which will allow reflux without any TLESR.

I've since had fundo.. and I can report that my throat tightness is mostly gone but I still have burning mouth symptoms which I thought were related to reflux, but since my reflux should be minimal now, I have my doubts whether reflux had anything to do with them. So in my case, Baclofen wouldn't have had any effect. I never had heartburn or regurgitation as symptoms, my main symptom was throat tightness.

Anyways I'd be interested to hear how you are doing on nortripyline (side effects?) as that is another possible treatment for BMS that I might try. I seem to be having trouble getting Lyrica prescribed.

inpinkagony
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   Posted 4/19/2013 1:10 PM (GMT -6)   
Hello

I found your topic to be very interesting so according to your ph study 50 non-reflux episodes are a lot? I am doing mine on may 7th since I been recently diagnosed with LPR about two weeks ago, so I am guessing me and you have the same illness? But why did they put you on anxiety/depression pills. because I read somewhere that LPR can be either a nerve thing, an anxiety thing and or faulty LES/UES, or haital hernia, so far I do not have an haital hernia, but I still do not know about the functions of my LES/UES, I just finished a barium swallow today so maybe that will show what's going on but when I go back to the doctor I want to bring these issues up, so I was wondering did you bring it up to your doctor or he/she decided it was nerve problem or anxiety? cause I developed some odd symptoms after being on protinix for like4 months and I do not want to go back on it. I was wondering could the cause of my LPR be a nerve signaling the wrong things to my brain or vocal chord nerves messed up because I used to scream a lot when I was younger and I remember my mom said you better stop or you will have problems later on GO FIGURE :) or maybe anxiety but I do not know how to rule these possibilities out.

Thank you for listening.
Roah

Post Edited (inpinkagony) : 4/19/2013 1:14:11 PM (GMT-6)


DOGGBONES
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   Posted 4/19/2013 1:26 PM (GMT -6)   
Sixness,
I had 31 reflux events and was told under 48 was acceptable on ppi's. They mentioned my non acidic reflux as more than normal but didn't seem concerned. What confuses me is that I thought ppis only lower acid level, not prevent reflux, so wouldn't reflux events be the same on or off ppis, just lower acid?

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 1:28 PM (GMT -6)   
DOGG were those reflux episodes non acidic or acidic and did you do it during PPI?, how is your tapering down I hope you are doing well :)

TheSiXness
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   Posted 4/19/2013 4:22 PM (GMT -6)   
Inpinkagony,

From my knowledge around 50 refluxes is above average, but still within the normal amount of reflux. I believe that anything under 75 refluxes would be considered normal. The problem with me is that I'm mostly refluxing non acidic content, which is hard to treat with medication. Since I'm still within the "normal" range of refluxes my doctors assumed that I was hypersensitive to acid or anything moving in my esophagus. That's how I got prescribed nortriptyline for my hypersensitive nerves in my esophagus, throat, nose.

In terms of lpr I know that one of the top otolaryngologist in the us, jamie kaufman. She likes to prescribe tricyclic antidepressants. She has been finding out that a large amount of her patients do have nerve problems as well as reflux. The thing is though, if you have nerve problems even normal amounts of reflux can cause you to be symptomatic. It's like this, if you burn your hand on the stove it will be painful, but after it heals your nerve endings are still sensitive from being burned. So the thought is, if you numb those nerve endings down there will be less pain and you will be able to tolerate normal reflux since. Your not actually damaging your throat, but it feels like it.
-TheSixness

TheSiXness
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   Posted 4/19/2013 4:44 PM (GMT -6)   
Drtinsac,

In terms of PPI's i feel the same on medications or off. Originally, I got my TIF done because of LPR symptoms. Hoarse voice, problems swallowing, throat pain, breathing troubles, tightness in my throat, coughing, swallowing a lot. I could for the most part control them with PPI's except for when I would eat symptomatic foods like pizza. I got it done because I was in college and everytime I would have to give a speech or presentation my voice was so weak. It was hard to talk in front of people and it was embarrassing.

After my TIF however, it has been a weird journey. I still have my LPR symptoms. I have noticed that my throat tightness is off the charts, way worse than before. I have more nasal/sinus problems, my breathing problems are very noticeable. I have a hard time standing up straight in the shower because my breathing so is shallow. I'm 23 and a former college runner, so it's not like I'm in bad shape. I continue to have throat pain, hoarse voice, problems swallowing...my cough has gotten better. The problem now is that any anti acid doesn't help. I'm the same on zero meds as I am when i'm on 40x2mg of omperazole before meds did help to alleviate 75% of my pain.

Gradually after my TIF, I have started having heartburn about 6 months after, which was strange because I have never had heartburn before. Also, my nasal congestion now has gotten to the point where I'm a permanent mouth breather, so I definitely have gotten worse.

In terms of the nortripltyine, it has helped improved my mood, haven't noticed a change in my pain levels though. I'm on a dosage of 10 mg and it doesn't make me feel all that tired. I tried 20 mg once and noticed I was quite a bit more tired on a higher dose.

As for the bacloflen, I have been on it for a day and a half now. I do feel tired taking 5 mg before each meal. Other than tiredness, I do not feel any other side effect. The tiredness isn't that bad, I can still function with out wanted to sit or fall asleep. I've tried 25 mg elavil and that destroyed me, but this is quite doable. I haven't noticed the baclofen helping my heartburn/throat/nose at all though. I feel the same, I was hoping that it would prevent me from burping or having gurgling noises because that's when I feel the most symptomatic.

Post Edited (TheSixness) : 4/19/2013 4:48:53 PM (GMT-6)


inpinkagony
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   Posted 4/19/2013 4:51 PM (GMT -6)   
Yeah that's exactly the articles I was reading about, in my case I think it could be nerve thing but I wont know until the results of my 24hr prob and barrium but if everything comes back normal then I will talk to my doctor about putting me on trail of anti-depressant or some nerve pills but the ones that don't cause GERD cause for me I think it this has been happening so last july I always had like mouth sours sour taste and sinus infections on and off but I always thought it was cold plus my wisdom teeth coming in or side effect from hookah because I was youg and stupid and I used to smoke with my friends but I do not do that anymore, so when I went down in October to visit my friend I started having weird cramping and belly button felt like it was burning off went to the ER did CT scan and blood work found out I had gastritis put me on OTC prisloc and told me it should go away, and then when we went out the next day I got on this swaying carnival ride and next thing you know I couldn't swallow when I got off I felt my esophagus being extra tight that water hurt to swallow, so when I got back home from my weekend with my friend went to ER here and they told me I had GERD/esophagtis and recommended me a doctor. I wish I had researched my own doctor but at the time I didn't do that because I never went to doctors like ever unless for shorts or normal check ups. So same week I came back to ER because I had sharp pains in my left side of my chest and thats when they said I had costocondritis or something like that which means an inflammation of my rib cage and this all happened before my first endoscopy, so after all these different diagnosis I was still taking OTC priseloc and I felt my esophagus slowly getting better and that same week the doc they recommended me went and did my first scope and saw redness in my stomach and esophagus but never really explained what I had all he said I had no infections and there was inflammation recommended me protonix 40mg so I took that for 4months straight not knowing the side effects of PPI the longer you stay on them the worse you react to it or your orginial disease becomes when you get off, and let me tell you I was experiencing some werid crap, I started having chest tightness and sharp pains in my left side of esophagus and sour taste and lump in throat and heart beating fast everything disappeared when I got off except for the first time I experienced heartburn and it was fire and chest tightness, sour taste stayed. so it always made me think all along I had LPR but the PPI's just made it worse went to new doc said I had GERD, went to ENT said I had LPR and now I am doing all the additional testing to rule things out, but yeah I am glad I read this post and I shall bring this to attention to my doctor, but the anti depressant calm the nerves or give it enough time for the nerve to heal? cause I know its hard to heal nerve unless its irritated but if its damaged its damaged and this prob happened to me cause I was eating before bed consuming a lot alcohol and etc, last summer was where I did all the wrong things. haha

I hope we both feel relief and I hope my tests doesn't make my doc put me on PPI's cause I refuse to be on those bad boys, right now my symptoms are verrrrrrrry mild but afraid it will get worse because people say the disease moves so quickly so far I just have sinus infection, lump in throat comes and goes, and sour taste has disappeared (prob alkaline water), white tongue (prob the pepsin) redness in back mouth and bumps on roof my mouth back my mouth and now on my tongue. they are worse in morning probably indicating I am spinal or night time refluxer, how are your symptoms?

inpinkagony
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Total Posts : 274
   Posted 4/19/2013 4:55 PM (GMT -6)   
Oh haha you are 2 years older then me I am in college now, and have two more years to go or so, I know it must have been hard during college I can relate, I feel so sad sometimes because I can't really enjoy certain things because of how sick I am, how long have you had your LPR I really hope I do well medication less until I get better insurance with whatever job I have in future because honestly if I do get any worse or do not get any better I am def opting for surgery such as torax/linx, I wana do the nissen but it scares me. did you have a surgery done?

Post Edited (inpinkagony) : 4/19/2013 4:59:39 PM (GMT-6)


TheSiXness
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   Posted 4/19/2013 5:01 PM (GMT -6)   
Dogg,

Tha'ts what I was thinking too. I had two ph exams done, one where I was on ppi's and one where I was off. Off the ppi's I had like 8 episodes of acid and like 35 non acidic. Than when I was on the PPI's I had 8 episodes of acid and like 50 + episodes of non acidic. While off I noticed drops of PH below 2 and when I was on them I noticed my lower drops where around 3.8- 4.6. I don't have the exact results because it takes for ever to get them and my Doctors seem to like to keep the information to themselves.

So really my results didn't change much while I was on or off. I did have more weakly/non acidic contents coming up, but not too much more. Also, I noticed that I had less significant drops in PH while on my meds.
-TheSixness

TheSiXness
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Date Joined May 2012
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   Posted 4/19/2013 5:12 PM (GMT -6)   
Inpinkagony,

I Have been living with this for about 2 years now and yes I had surgery done for it. I had transoral incision less fundoplication. Some places and insurances don't do this procedure because it hasn't shown the best results. If you have moderate heartburn and a small hernia, it maybe acceptable for you. I wasn't aware of the short comings of the procdure prior to having it done however. I went ahead and picked this surgery over the nissen because I didn't want any scars on my stomach and it sounded less invasive.

The nissen although sounds worse interms of how the sugery is done, it seems to have better outcomes and last longer than the TIF. Don't know much about the linx, but I definitely would like to learn everything about any surgery before having it done. The linx does seem like it would hold better than any other surgery for reflux because their titanium beads! They wont break or slip and if the wraps not tight enough the surgeon could remove a bead or two with out much complications.

Yeah, I have come to the realizations that I maybe living with this the rest of my life. Doesn't seem like I'll be getting cancer anytime soon or so the doctor says.... Hopefully none of us get cancer.

The best way to think I guess, is that living with this condition makes us more sympathetic to other humans who suffer from medical problems in their lives. As I suffer from this condition, I continue to grow as a person and as I do I help the people around me.

In terms of heartburn, I have found that people of all ages suffer from this. I help out at the local high school to assist in coaching track and it's amazing how many young people have heartburn and are on PPI's. I Thought this was more of an elderly condition, but it's not anymore. I'm starting to think this is more of a problem with how we eat nowdays. Our bodies just can't handle the acidic american diet's nowdays and as a result of it has been slowly breaking down to the point where our LES relaxes too much.

Post Edited (TheSixness) : 4/19/2013 5:19:29 PM (GMT-6)


inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 5:27 PM (GMT -6)   
Yes, I really have a lot of time ahead of me to experiment on improving my symptoms util I feel I am at my worse end, but I swear you could have not said it any better the biggest thing I have gotten out this is LIFE IS TOO SHORT, I try to make most of my day and not worrying to much about tomorrow because we never know what can come our way, my biggest eye opener was your never to young to be sick and take care of your health no matter what. Yes I have become so much more compassionate don't get me wrong I had a big heart before but like others we have heart but sometimes followed by empty words or more so in my case, I really do and try to appreciate a lot of things around me and you are right, I hope none of us get that anytime soon 5 yrs or 10 I just know I want to have good ride and make most of my day, but yes linx to me would be the way to go if it does come to that but so far I do not have hernia nor do I have any severe symptoms so I doubt any surgeon wants to touch me LOL.

I really enjoyed talking to you, how are you doing now? and I am really sorry you are having more probs after the surgery are you going to go back and do something different? I hope you do get better soon. I just hope I do not loose my voice before college haha, you know how much speaking we have to do i college what was your major? I am thinking of going into the health care, another thing about this illness it was blessing in disguise because I was originally doing international relations had to give that up because I became so concerned about how can I travel if I needed to be o special diet and stuff but when you give up one door another one opens and for me the door to medical field opened for me, I want to help people understand that there are so many options out there and really listen to your body before getting the normal treatment etc... I think you can guess where I am going with this. LOL

TheSiXness
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   Posted 4/19/2013 5:28 PM (GMT -6)   
Inpinkagony,

To answer your questions regarding nerves healing...I asked my doctor about that. He didn't give me a straight forward answer. He said he would continue to increase my dose until I was feeling better and after a while I would slowly be able to come down in dosage. He said after that point, some people can get off them completely and unfortunately some people have to stay on them indefinitely.

Also, he told me that it takes most people 3 weeks of being on the medication before they start feeling the effects. I started feeling the mood enhancement within a couple of days. Than after about 2-3 weeks it kinda plateaued.
-TheSixness

DOGGBONES
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   Posted 4/19/2013 5:34 PM (GMT -6)   
pink,
I was on a ppi at the time of the test and my paperwork didn't identify how many non-acid events only that they persisted. Not tapering down, went cold turkey and still fighting rebound.

DOGGBONES
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   Posted 4/19/2013 5:38 PM (GMT -6)   
Sixness,
Are you still going to UW for testing?

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 5:38 PM (GMT -6)   
You can call me roah, yeah I know I was super shocked that's why when I was diagnosed with LPR after being diagnosed GERD the first time I went into mood swings and etc, but like with the LPR I was sad do not get me wrong because I think LPR is 5x scarier then typical GERD but there was girl our age in the office and when she told me how she had it I felt relief because it made me stop thinking I am so young and why did this happen to me type of thoughts, and she was just like me she said I am there with you sistah I do not want to be on PPI so I felt relief because I thought I was the only crazy one not trying to be on PPI with this condition when most of us with this condition have to be on PPI but I still do not know because I have more tests to do. but we will see in month I will keep you posted, and wow high school? oh my gosh that breaks my heart my little sister is 16 and I can't imagine her with something like this and yes its funny how food can become your enemy, I really do worry for our future generations. yeah the saddest thing is the foods you would never expect are the biggest culprits (like coffee I was addicted first year of my college and gave that completely up my second year so I never was coffee person after that but chocolate that part breaks my heart how I am chocoholic haha) oh and you can call me Roah :) about the nerves I will discuss that with my doctor start on low dose experiment and if no effects go up and see but I hope I don't become addicted but knowing me I am the type not to be hesitant to give something, I am kind of hippie/natural medicine freak haha. but for me I believe its nerve thing cause let me tell you in my teenage days I used to scream and be emo cause I was going through a lot that I was surprised I could talk the next day haha. so maybe I had this coming. //shakes head/
I won't let you ruin me, if there is will there is way, day by day and I shall make it.

GERD/LPR 2 months yappay! :) LOL

Roah, college student, 21

TheSiXness
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   Posted 4/19/2013 5:41 PM (GMT -6)   
Going into the field I think would be a good idea. If my condition would have happened earlier in my academics I would have switch to health, maybe become a doctor one day. The reason for this is because Doctor's who don't suffer from the conditions they treat are at a completely different level than their patients. I think it should be like a prerequisite for becoming a doctor or nurse to have actually experienced what your patients do.

I graduated with a degree in criminal justice, had hopes to become a law enforcement officer or probation/parole agent. Kinda giving those jobs up right now until I figure out my health situation because I shouldn't be a cop right now, I just don't feel well enough to be put in stressful situations. When I feel better I definitely will be applying places. As of right now I'm working in the prison system as a correctional officer. My symptoms don't prevent me from doing my job, it just makes it uncomfortable.

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 5:44 PM (GMT -6)   
DOGG. Oh my gosh really??? take it easy, let me tell you I was on the ppi for four months and I am still in rebound faze but it will get better my heartburn and burning stomach has went down from 10 to 2 now, I think it depends on the person, its been 2 months and .75 of month since I been off it gets better but haha my biggest fight is the LPR, those ppi's do somethings to you. how is the sour taste and white tongue? you know I started getting white bumps in back back of my tongue i wonder if that's from the pepsin I am surprised my doc didnt give me a culture swap to rule out bacteria/infectios/viruses I am going to see if I can get on next time I am there which is month or see my Primary, get some blood work done and vitamin and culture swap.

Lets keep each other motivated if you can do it I have to do it too, my LPR/GERD budd LOL keep me updated. feel better :)
I won't let you ruin me, if there is will there is way, day by day and I shall make it.

GERD/LPR 2 months yappay! :) LOL

Roah, college student, 21

TheSiXness
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   Posted 4/19/2013 5:49 PM (GMT -6)   
Doggbones,

Yes, I'm still working with the Doctors at UW-Health. Don't know how I feel about UW-Health. I think local doctors could treat me just as well. UW-Health seems way to busy, they have good doctors and staff. Their caseload though is way to high. That should be expected though.
-TheSixness

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 5:51 PM (GMT -6)   
Six: yeah I do not know why but I found so many peope in medical feild when I get my tests done usually there is at least one person who has acid reflux when I am in the endo/gastro centers, and its always comforting to be around people who can empathize with your situation do not get me wrong like my family and friends are trying but sometimes you really have to be in that person shoes to understand the level of frustration we are in from time to time, I think its process let me tell you I was so much worse when I first started with this, I refused to eat, leave my house, now I am more like let me just do this cause who knows if I will get to do this again. its like waking up with new pair of eyes on life, but you are so right about the doctors needing to know what the patients are going through and I tell you when you have frustrating illness of some sorts, it can be hard for doctor to relate even if they try to, so I really want to be around in helping people gain solutions, I am stuck on either becoming natrupathic doc, or sonographer, anything to me about the medical field is intriguing but to me its all about the patience, how long do I want to be in school for it haha.


Oh yeah I can totally understand where you are coming from its all about comfort, and I really hope you do get to do what you love again soon, I pray for you. But your new job doesn't have you do a lot of talking and gosh I hope your symptoms subside :/

Post Edited (inpinkagony) : 4/19/2013 5:54:09 PM (GMT-6)


inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 6:07 PM (GMT -6)   
Six: Oh last but not least about the hypersensitive esophagus, so it means that your esophagus no matter what's moving in it causing our nerves to signal things in your head that makes you feel all the odd symptoms that comes with LPR or so? because if I am not forgetting I do remember my GI telling me something about my nerves but I did not listen to what he was saying at time because I was in hysterical mode when her said I had GERD this happened before the LPR so I think he was prob telling me about my esophagus being hypersensitive and signaling the wrong things to my brain causing me to feel the symptoms that I did at the time, is that whats happening to you?
I won't let you ruin me, if there is will there is way, day by day and I shall make it.

GERD/LPR 2 months yappay! :) LOL

Roah, college student, 21
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