How is Your LPR?

Greetings,

For those of you with LPR, I was just wondering how many of you are on PPI's, which PPI you're on, how long have you been on it, and/or have you seen improvement? Are there any symptoms left? Do you get breakthrough symptoms? First, I was on prilosec with little to no success. Then I started taking prevacid, but played around with the dosage until three weeks ago when I started taking 60 mg, and now I am on dexilant. I am having breakthrough symptoms and am just looking for some encouragement/advice.

Thanks so much,

Faith

Hi Faith, ive had LPR for a year now, tried prilosec, lanzoprazole, nexium, reglan, domperidone, carafate but i felt no relief, i've seen a lot of GI's some say my problem is not even reflux others say its more than obvious that i have it but still they dont give me any solution, i just came back from a surgeon that told me he cant operate on me because i have a normal LES he agrees that i have reflux but he said he didnt know how to help me, im crying as im writing this, i dont wanna live with LPR anymore. I hope you can find a cure soon.

Neptunian,

I wish I could give you a huge hug right now, because I feel the same way. I haven't undergone all the testing that you have yet, but feel it will be the same in my case. What are your symptoms? Since some of the Dr's say it's not reflux, did any of them say what it could be? Have you been tested for allergies? Along time ago, my Dr. told me I may not even have LPR, but that I can have chronic post-nasal drip (would love to believe that). Also, did you have anxiety before LPR developed? I have been finding really interesting research about this and will elaborate if this is what you do have. Did you undergo PH testing?

I'm so sorry for what you're going through, but know you're not alone.

Hugs,

Faith

PPI-Less, it's interesting that you brought up benzo's. I'm not sure if you heard of a Dr. Shipko, but he published original research about treating GERD with xanax. I believe he says that in patients with GERD/LPR & Anxiety, excess bile is behind the reflux and these symptoms are treated with xanax and carafate quite successfully. This is interesting to me because in addition to suffering with LPR, I also suffer from severe anxiety.

What natural things are you trying?

You're symptoms don't sound too bad, but I can definitely see why they would be bothersome. The PND is driving me nuts, I keep using saline.

If you don't mind me asking, what kind of anxiety symptoms did you have? Yes, I believe that although you may not be experiencing any anxiety symptoms now, it can be underlying (btw I'm studying to be a therapist which is ironic lol).

Thanks so much for sharing your routine with me, and I'm glad it's been helping you. Do you find any of the herbs/supplements you are taking to be more helpful than others?

Did you ever have any symptoms of anxiety prior to the use of medication? I think in my case, my LPR reflux is a result of my severe anxiety. It's like a catch-22 though, one causes the other to go nuts.

It's so nice to be able to talk to supportive people like you. This LPR can be scary and makes me feel lonely sometimes.

I think one day, it will go away...I really do. The body is a fantastic machine and I think it has the capability of repairing itself.

Interestingly, I visited an acupuncturist a few weeks back. He told me that I was suffering from liver stagnation, which results in excess bile, thus leading to reflux. He gave me chinese herbs that are supposed to relax the nervous system, I took them for a while, but then started worrying they would relax my sphincter. This is interesting because the research by Dr. Shipko, says the same thing, but he controls it with xanax and carafate. Have you been tested to determine which form of reflux you're suffering from?

It's funny how it works, isn't it? LPR exacerbates anxiety, and anxiety exacerbates LPR. Think about it, no organ in our body works separately--everything is connect. For example, I was just eating and I felt like I needed to clear my throat. Instead of getting anxious, I told myself that I'm fine and the urge stopped. Additionally, my first LPR flare-up came after a scary bout with anxiety. After several months, I stopped all meds and convinced myself I was fine, that there was nothing wrong with me, and that there was nothing I couldn't eat. Believe it or not, it worked! For two years, I was virtually symptom-free aside from some burping (I also have H-Pylori). In June, I transferred graduate schools to my dream school and was under so much stress that the LPR flared up all over again!!!

The mucus only bothers me when I pay attention to it, which is most of the time lol. so what you;re saying about anxiety doesn't surprise me!

Hang in there we are going to be ok!

I really hope so...I don't remember it taking this long last time..but the problem is I feel like I am so much more educated about reflux this time around that I don't let myself heal...Or perhaps the medicine was more effective the first time around?

I'm not sure if I am refluxing bile either, but I never really feel any burning or anything. When my symptoms present, they come on with a cough and throat clearing..strange.

Why was your PH test abnormal?

I don't but I have an appointment with a psychiatrist tomorrow. I really don't like taking meds, but if it's going to help then I'll embrace them with open arms. I'm just considered about the PPI/SSRI or benzo interaction.

PPI-less,

I was reading your post and I wanted to let you know that I had a similar reaction to the PPI, so I don't think it's in your mind. I went through 8 PPIs and had the same reaction with all of the them. The main reaction was the tingling/numbness in my toes it spread up my legs and I had it in my hands and arm as well especially the left side of my body and dizziness and vision problems. The longer I was on the PPI the worse it got. I got off the PPIs and it got better (but it took a few weeks to get it out of my system). It also made me hypersensitive to anything I took. The rantinidine family made my reflux worse. My doctor said it was in my head and that NO ONE has reactions to PPIs because they are so safe (I'm with a different doctor now), but if you read the leaflet in your PPI box I had half of the allergic reaction precautions:
"Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); bone pain; calf pain, swelling, or tenderness; chest pain, numbness of an arm or leg, sudden severe vomiting or dizziness, or vision changes; depression; fainting; fast, slow, or irregular heartbeat; fever, chills, or sore throat; joint pain, tenderness, swelling, or warmth; red, swollen, blistered, or peeling skin; seizures; shortness of breath; unusual tiredness or weakness."

I enjoyed your daily regimen. Mine is similar except for that i save slippery elm for night time to protect my throat before I go to bed. I drink it unstrained as a tea. I also take aloe very twice a day 2 oz at when I first wake up and 2 oz at night mixed in the slippery elm. I don't know if apples help you or make it worse, but I drink a cabbage apple juice (from the juicer) that I like better than carrots for my stomach. I also found that juicing beets helps too, but of course nothing is a miracle. I've never tried axia or lions mane. I'll give it a try.
Thanks for your good ideas.

Jacket923, i feel certain my constant throat clearing and lump in throat feeling is lpr (although I'm still waiting for a gastroscopy and a ph test), but I don't tend to get an acid taste at the back of my mouth and my throat always feels better for a while when I eat. But my symptoms seem to fit so well with lpr that I'm sure they must be that rather than a nerve problem. They tend to be worse the day after drinking alcohol for example, and this sounds more like acid than nerve damage to me, so I think for some people lpr does ease with eating, probably because of the production of saliva. Not that I'm an expert, but that makes sense to me.

Hi Jacket923 - Do you still take elavil - or did you just take it for a few weeks and then got off of it and are now asymptomatic?

Hi Jacket,

I remember noticing around a year or so ago that after a night of heavy drinking with friends a phlegmy throat the day after, although it was fairly occasional. It seems to have occurred more regularly since then, and now I've had the phlegmy throat, sometimes sore too, for around three or four weeks constantly. There was an occasion back in June this year where I swallowed a piece of hot chicken too quickly and really hurt my throat and the next day it was awful and it does seem to have become worse since then (but still on and off until the last few weeks). I don't get a lot of heartburn - only once in a while, but I do get odd feelings in my chest, stomach and back so do think I have some form of acid reflux (I was put on PPIs before I really even noticed my throat symtpoms). But I do find what you're saying interesting about the nerve damage, so I will mention it to my Dr (normal GP) when I see him in a couple of weeks and see if he'll prescribe me amitriptyline to see if it helps at all (I assume it's available in the UK as well, which is where I am). I've just come back from a week in France where I couldn't really avoid the cheese and wine but now I'm back I'm cutting out booze and caffeine to see how I get on, and I've just ordered Dr Kaufman's Dropping Acid book so I will give that a go and see if my diet helps me as well.

Faith

i had gerd for more than 10 years but the LPR is a relatively recent change. the lpr started about two years ago. what changed?

i got older !...i was eating dinner later at night, and i had gained weight and became a bit mores sedentary after an operation six months before. did these events figure in to my LPR...i can only guess

the lpr started coincident with me being awakened at night choking on reflux

i took huge quantities of otc ant acids...and as things got worse saw doctor after doctor an got test after test and was placed on H2s which were some help but still i was experiencing too much burn and the reflux was getting all the way up into my airway.

next came the PPIs first protonix and then omeprazole...they both worked good but soon after starting..maybe two weeks or less,i began feeling light-headed, having muscle spasms especially in my back, i felt nausea, and experienced lots of lower abdominal pains. (had switched from one PPI to another just to avoid these side effects, but no luck)

against my docs wishes i stopped taking PPIs and slowly one by one the side effect pains and problems subsided...it took several months for the light-headedness to completely go away and to this day im not sure if that symptom was directly PPI related or a result of increased anxiety from all the medical problems i was having

i guess i could try the PPIs again and see what if any of these symptoms come back !!!

and i may just have to do that some day cause i continue to reflux and have pain...not as bad as before the meds but still have symptoms of reflux-LPR

the things that have helped me the most after the meds are:

raising up the head of my bed,

eating smaller meals...( i eat 4 or 5 meals a day that are less than half the size of what i used to eat)

i eat more vegetables less meat... way less meat...

i exercise and have lost weight (this i believe was a big help)

i avoid trigger foods ( a list complied form suggestions here at healingwell and my trial an error experience...

and i never eat and then lay down..always let a few hours go by after diner before bed...no late night snacks

as for the break-thru symptoms you are experiencing...welcome to the club...i guess many i not most of us have bad days and often its difficult to figure out rhyme nor reason as to what w did or didnt do that allowed this to happen

i feel that for myself, my emotional state is at least 33% of my problem..if i can avoid high anxiety situation i do way better

of the things ive listed above, for me personally, i would rank small meals and elevating ones bed very high on the list of things that have helped..that and trying to find calm and avoid waves of stress

hang in there and dont give up! yeah gerd lpr is awful and many of us feel like we have been beat up to the max...its true..but hey....we are in this together!

best wishes
mock turtle