LPR - having discomfort on PPIs

kilosi said...

jenagade said...
Hi Kilosi,

Interesting you mention antihistamines. I too suffer from LPR and the last week or so I have had so much fluid build up around my sinuses and chest it feels like I'm constantly choking on water. Long story short I had a visit with my GP, while I was there I asked if there was anything I could take for the mucous and he said antihistamines can help in cases like this, because not only do they dry up the mucous but if taken when areas get irritated by your reflux it can reduce the severity of your bodies response. So maybe thats whats happening with your throat?

I hope you can find some answers soon and get some help, I'm in the same boat at the moment and its hell!

Best wishes

This makes a lot of sense. It's really amazing at how much better I feel. It's like the benadryl is a wonder drug. But I do realize that is just treating the symptoms not the actual cause. I wonder why the ENT couldn't explain this. It was a pretty weird conversation IMHO.

It is a very discomforting experience and I wish this was more common knowledge in the medical field. A lot of people suffer from this and it's a shame we are not given more time and consideration because if you don't experience this, you don't know how awful it is. A little sympathy would go a long ways in really finding the cause and solution (same can be said about a lot of things).

You are preaching to the choir. There also seems to be this vibe that GERD and LPR aren't ever serious conditions and simple lifestyle changes will always fix everything (not that I'm saying lifestyle changes dont help because they do) so if you're not getting better its because of your lifestyle. I don't know about the rest of you but this has stolen my life from me, and I don't mean just because I have had to give up eating things I like etc. I mean that I can't do anything because I am constantly exhausted and the chronic cough + sinus issues make it really hard to breathe so even moving around the house makes me dizzy. Hell I went to a comedy show which I had bought tickets for before it got bad and I almost passed out from breathlessness because of all the laughing, totally worth it though ;).

State of mind counts so much when dealing with these things over a long period of time, I mean look at how many people just on here have developed depression and anxiety, not saying its all connected by ongoing stress is a definite trigger for depression. A little empathy, especially from doctors, would go a long way.

Sorry rant over

Hi Jenagade

The test for delayed gastric emptying would be the gastric emptying scan. This is where you eat something... for example: eggs, Then they see how fast the eggs leave your stomach. It is a better test than the barium swallow for delayed gastric emptying. There are many people who have delayed gastric emptying who can drink liquids without problems, but have difficulty eating.

Hello!

I have been doing better controlling my triggers. I was doing good today and decided to try a piece of cheese and see what happens. In about 30 minutes, my throat was on fire like it was prior to tracking my diet. So this appears to be a trigger for me. I have been able to eat chicken, bazati(sp) rice, green beans, zucchini, and natural crackers (3 at a time) with peanut butter without issues. I do still have a slight pain, which is probably either residual pain on my flesh (ie: it is just simply really irritated), pepsin still getting up (I'm still burping a lot, though this has slowly tapered down since I have started the diet so I feel like I'm making progress) and/or some of the carbs that I am eating is causing a small amount of problem instead of a giant flare up.
Finally, I used a different type of toothpaste today and didn't have a flare up.

I am going to go shopping tomorrow for the Fast Tract Diet and then schedule an appointment next week to test for SIBO and h. pylori.

On a last note, my voice is getting better - but very very slowly. It was previously, getting better slowly before, so I am glad I am still making progress on that. I've been able to talk with good strength and without pain this week. Some days are better than others, of course.

I hope you're all doing well. Thank you for letting me post here and often - I am merely doing it to help others and myself. We must band together and do great things! Yes, the choir is here folks and we're all eager to listen! :)

Thank you for the update. I'm not surprised that dairy is causing you problems. I removed all dairy from my diet for 90 days at the urging of Dr. Daniel Twogood (he's known for fighting chronic pain) because he's found that in some people, that dairy can cause inflammation. If a person suffers from GERD, gastritis, or esophagitis, then this only exacerbates the problem.

I love cheese and yogurt, but I stayed away from it for 90 days as my part of my overwell healing plan. I had a little cheese last night with some beans and it didn't seem to bother me. So maybe I'm ready for a little cheese now?

In some people dairy also encourages the stomach lining to produce more acid, so that's another reason to stay away from it if you're healing mode.

Good luck to you.

 

Hello!

So I have been making great progress on my diet until today. I removed all (100%) of my pain in my throat by not eating carbs, gluten and diary. I did a test today by eating a dark chocolate protein bite. I had a flare up. This is completely my issue and now I will be adhering to it strictly.

I scheduled my tests and I have 3 this week and a fourth the next week.

If you want to see my diet, just look at the Fast Tract Diet. I modified it a bit to cut out gluten, dairy and eat the items I normally eat (ie: deli ham, pork tenderloin, instead of seafood, etc).

I'll post when I have more information.

kilosi said...
Hello!

I took my lactulose breath test today and I am positive. I had a 49 ppm at one point. I think anything over 20 is bad.

I'll be taking some antibiotics for this.

I'll keep you all updated.

Its great to hear you are finding some results. I noticed you saying that you were experiencing the burning after brushing your teeth, are you using toothpaste with any kind of minty flavour? Because mint is a known and quite common trigger, you might benefit by changing to a different flavour.

kilosi said...

jenagade said...

Its great to hear you are finding some results. I noticed you saying that you were experiencing the burning after brushing your teeth, are you using toothpaste with any kind of minty flavour? Because mint is a known and quite common trigger, you might benefit by changing to a different flavour.

Thank you!

I did switch my tooth paste and it is A LOT better. I am now using (besides my prescription based one), the deep clean one. It has helped a lot here.

Oh thats awesome to hear. Its nice to see stories of people succeeding with their approaches, gives hope to everyone else.

kilosi said...


It really is great. I hope that people can glean information from my posts here.

I am taking a lactose test Friday - my doctor still wants me to take it. This means I can't take my antibiotics for SIBO just yet. I'm also taking a gluten blood test sometime around here soon, and then a h.pryoli(sp) breath test next week. Then hopefully I can finally start taking these pills. If I am positive on the Lactose test (I was previously not lactose intolerant - I had several glasses of milk per day) I wonder if the same drug will fix that issue too. I am confident I am not insensitive to gluten (I wasn't previously) as today I had the breaded chicken parm for lunch and feel fine. Also, based on the h.pryoli(sp) symptoms I have read, I do not have any of them.

The SIBO breath tests are really non-invasive and I find them relaxing. I bring my laptop to the waiting room and work on small projects to pass the time. I had no responsibilities except when the nurse came out for me. It was really peaceful for me.

I'll keep you all updated.

Thats good, its not often we can say that the tests are relaxing!

I didn't know h pylori could be tested by breath, I got it ruled out by blood test but interestingly enough my doctor said that h pylori is very uncommon in my country and they typically only tend to find it in people who have immigrated from the UK or US.

That is great to hear, you must be happy with the result. Hopefully the h pylori one comes back negative too.

I'm not doing great at the moment my upper respiratory tract is a mess from the near constant regurgitation. I can't see my gastro again until mid-November so while I wait I'm just making sure I'm doing absolutely everything recommended (including taking the seemingly inefficient medication) so that when I do finally see him, he can't blame the continued downspiral on me not following instructions to the letter. Most of what I'm doing is having little to no effect, I have however swapped the type of Gaviscon I was using and its early days but I think it may have helped my night time reflux, last night was the first night I have slept the entire night through in... must be over a year now, so fingers crossed that continues.

kilosi said...

jenagade said...
That is great to hear, you must be happy with the result. Hopefully the h pylori one comes back negative too.

I'm not doing great at the moment my upper respiratory tract is a mess from the near constant regurgitation. I can't see my gastro again until mid-November so while I wait I'm just making sure I'm doing absolutely everything recommended (including taking the seemingly inefficient medication) so that when I do finally see him, he can't blame the continued downspiral on me not following instructions to the letter. Most of what I'm doing is having little to no effect, I have however swapped the type of Gaviscon I was using and its early days but I think it may have helped my night time reflux, last night was the first night I have slept the entire night through in... must be over a year now, so fingers crossed that continues.

I am really sorry to hear about your troubles. But I am happy to hear you were able to get a good nights rest.

I took a lactose and h.pylori test. Both came back negative.

So I am on 14 days of Xifaxan. But, I can't swallow the pills so I am struggling (I can barely swallow 200 mg pills. I do best with extremely tiny ones, like 100 mg). These things are huge for me - 550 mg. I haven taken 4 so far. Only one I was able to swallow one. The rest I had to crush. The most recent one, I tried to swallow (2 tries) but I was unable to do it. (So I crushed the first two without trying to swallow [I know my limits], then I managed to swallow the 3rd. The 4th, I tried to swallow two times but failed, and had to crush.) On the 4th try, the coating on the pill dissolve right away almost (under a minute, it was little mush after the second try). So I don't really get many shots at this.

I have read that you can't crush these pills even though they are not time released and that the entire pill travels right through your stomach into your small intestine. I'm unsure of what to do here for this because I have such anxiety I cannot swallow these things. For some reason the pop bottle method does not work and the pill just sits on the back of my tongue. Plus, it's orange dye and I don't do well with that. Ah, such is life - making things bittersweet or difficult.

So if anyone has pill swallowing tips, that'd be great!

EDIT: Spoke with pharmacist and they said I can crush these (they mentioned, they do this at the hospital for patients). I will be trying to split them in half, as well as practicing swallowing tick tacks and other items to get used to swallowing giant things to maybe eventually I can get better.

I got two whole nights of sleep! But now I'm back to my normal sleep patterns. I'm also finding the Gaviscon feels like it is burning my throat for the first 10 or so mins after I take it so I don't know if that means the inflamation has gotten worse, or if its an actual reaction to the Gaviscon. Also I have just had to start taking antibiotics for something unrelated and it has upset my stomach pretty badly.

Thats great to hear both tests came back negative, onwards and upwards!

That sucks about the pills, I have always thought it must be difficult for people with people who have issues with taking pills when they end up with something chronic that needs regular medication. I've never had a problem taking pills, I used to take my daily dose (about 6 capsule size) in one go, but since this has all gotten worse my throat is too constricted for them to go down properly.

Great that you are able to crush them though, you would hope that most of the medication for digestive problems would be able to come in liquid or at least crushable form, otherwise how do people handle it after they have a fundoplication!

Have you tried coating the pill in something to lubricate it and make it a bit less obvious that its a pill? My stepdad has trouble taking pills and he uses yoghurt which seems to work most of the time.

Oh no thats a shame, you were making such good progress too. Is the diet still helping though? I guess the moving wouldn't have helped either, probably dust and things stirred up wouldn't have helped with your throat.

I hope these new GI doctors have something you can try, such a pain when medication isn't working.

By some miracle there was a cancellation and I was able to get in earlier to see my GI, and then an ENT the week after but the news was not as I hoped and now I'm waiting to see a surgeon.