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Acid Reflux / GERD Message Board


Acid Reflux / GERD Board Index


Rosebloom- I have been reading all of your posts. I was hoping to read that you had success in managing your GERD without going back to PPIs. Sounds like you’re hanging in there so far. I have been dealing with GERD for about 5 years, and have been on PPIs for much of that time. I started to feel better, and had a scope that showed my eroded esophagus had healed. So, I went off my Protonix (40 mg 1x day). I was doing ok for a few months with just taking Tums, with some days better than others. For a few weeks at a time, I would feel the need to make myself throw up just to get rid of that stuffed, bloated feeling. Also, I developed a lot of trouble swallowing. I was going to go back to the doctor after the holidays, but right around Christmas I had what felt like a heart attack. I have been in and out of the hospital with shortness of breath, chest pain, and trouble swallowing. All the tests were normal. Everyone was trying to tell me that it was simply anxiety, and gave me Ativan (who wouldn’t be anxious when they feel like they’re choking on their food??). However, I did have another EGD that showed mild gastritis and esophagitis. I also had the manometry test done that showed mild peristaltic weakness. Through this all, I have been suffering terrible reflux. I eat small, mild meals, eat at least 3-4 hours before going to bed, but have worse symptoms now than when I was off meds, and eating bad foods late at night. I can’t help but wonder if my few months off PPIs somehow made my condition worse. I am currently on Prevacid 30 mg 1 x day, but it is not helping at all. I’m afraid my doctor is going to tell me to increase my meds, but I do not want to take more. I am so afraid of what these PPIs are doing to my body. I just turned 46 and am premenopausal. I think that with my weak LES, my situation is helpless – I do not want to have nay kind of surgery. I have cut back on the Ativan – those types of meds are supposed to make GERD worse, so it makes no sense to me why I would be prescribed that! I share your frustration and concerns and feel like none of the doctors are addressing my concerns over the PPIs. I will definitely get the Dexa test done, though having been through so many x-rays while in and out of the hospital, I don’t relish the idea of subjecting myself to more x-rays. I’ll also increase my calcium and vitamin D. I hope that you post again and share how you’re doing.
Its very interesting to read of your seperate ppi journey's. I have been determined to get off this ppi at some point and time when i get the reflux under control, but its not happening. I just went to ENT dr last night and i have a viral (possible herpes/shingles family) virus in my throat...it has been there for AT LEAST 4 MONTHS! I have been treated with 2 rounds of antibiotics with some relief but it never goes away and it tears up my stomach that already has gastritis.

I heard about a boof "Why Stomach Acid is Good for You" by Jon athon Wright but it must be out of print, hard to find. I seriously thing i am becoming more ill ON these ppis after nearly a year. Reasons why:

~Digesting my food, i have to hold my shoulders back for every meal and lots of bubbles and pressures have to happen and work there way out...never had this before. Before i was on double dose i could eat fairly normal amounts of food, now i have to e VERY careful, if i cross some threshold it is extremely painful and feels like a muscle is pushing it back out/it has no where to go, never had this before double dose.

~I am 28 and am now bruising so easily, BIG purple and green ones when i don't even remember the bump being that memorable.

~My throat is red and torn up with sores, i am truly wondering if its b/c ppi's don't allow your stomach to kill off all of the bad bacteria and i am getting infection after infection (or the same one) in my throat/back of tongue from where i hd/have esophagitis. Maybe i'm possibly chalking all of this up to the reflux getting worse when really my stomach just doesn't have the juice to digest food (I am still on a VERY strict diet months later and have not gained back my needed lost weight).

~My mouth is bone dry in the mornings, salivia is hard to come by anymore (i'd never had this problem pre-ppis) which is big, b/c i think saliva fights bacteria, hence all my painful infections.

The list goes on...those are a few that i can think of. In the past month i just finished my taper off being poisined by benzodiazepines for 3 years. Since being off my anxiety meds my stomach hasn't been burning?? I don't know if thats why, but i would get these awful sunburn feelings in my stomach and esophagus since right around when i began the double ppi dose in late Sept. I never had all these additional problems like constant infections (with no colds, etc), trouble digesting food, bloating after every meal since i began the double ppi. I am not sure if this is the right moment for me and my health to attempt to cut out one day off ppi's right now. Well, i'm pretty sure its not the right time, but then i fear when the right time will ever be having never been healed from these ppi's and my esophagus, etc worsening all along. Dr's are of no assistance and of course blame every detail on stress. When in reality, THIS is what is stressing me out. I want to live to see my sons grandchildren one day, ets, i am only 28. I feel so ill and have for so long now. PPi's are when my physical health started to take a turn for th wosre and the double dose is when i began to get gallbladder problems, the constant infections and now so much weight loss on an already skinny girl (not from stress, I AM hungry, but i have a hard time eating without all the sympyoms i listed). *sigh*

I wish you ladies the best luck, i know you can get off these, please keep posting, i want to get better and when i have another round of energy after this anti-viral i'm on hopefully, i want to try another way, i don't feel well on these ppi's.

Take care,
Marigold
[QUOTE=marigoldgirl81;4195972]Its very interesting to read of your seperate ppi journey's. I have been determined to get off this ppi at some point and time when i get the reflux under control, but its not happening. I just went to ENT dr last night and i have a viral (possible herpes/shingles family) virus in my throat...it has been there for AT LEAST 4 MONTHS! I have been treated with 2 rounds of antibiotics with some relief but it never goes away and it tears up my stomach that already has gastritis.

I heard about a boof "Why Stomach Acid is Good for You" by Jon athon Wright but it must be out of print, hard to find. I seriously thing i am becoming more ill ON these ppis after nearly a year. Reasons why:

~Digesting my food, i have to hold my shoulders back for every meal and lots of bubbles and pressures have to happen and work there way out...never had this before. Before i was on double dose i could eat fairly normal amounts of food, now i have to e VERY careful, if i cross some threshold it is extremely painful and feels like a muscle is pushing it back out/it has no where to go, never had this before double dose.

~I am 28 and am now bruising so easily, BIG purple and green ones when i don't even remember the bump being that memorable.

~My throat is red and torn up with sores, i am truly wondering if its b/c ppi's don't allow your stomach to kill off all of the bad bacteria and i am getting infection after infection (or the same one) in my throat/back of tongue from where i hd/have esophagitis. Maybe i'm possibly chalking all of this up to the reflux getting worse when really my stomach just doesn't have the juice to digest food (I am still on a VERY strict diet months later and have not gained back my needed lost weight).

~My mouth is bone dry in the mornings, salivia is hard to come by anymore (i'd never had this problem pre-ppis) which is big, b/c i think saliva fights bacteria, hence all my painful infections.

The list goes on...those are a few that i can think of. In the past month i just finished my taper off being poisined by benzodiazepines for 3 years. Since being off my anxiety meds my stomach hasn't been burning?? I don't know if thats why, but i would get these awful sunburn feelings in my stomach and esophagus since right around when i began the double ppi dose in late Sept. I never had all these additional problems like constant infections (with no colds, etc), trouble digesting food, bloating after every meal since i began the double ppi. I am not sure if this is the right moment for me and my health to attempt to cut out one day off ppi's right now. Well, i'm pretty sure its not the right time, but then i fear when the right time will ever be having never been healed from these ppi's and my esophagus, etc worsening all along. Dr's are of no assistance and of course blame every detail on stress. When in reality, THIS is what is stressing me out. I want to live to see my sons grandchildren one day, ets, i am only 28. I feel so ill and have for so long now. PPi's are when my physical health started to take a turn for th wosre and the double dose is when i began to get gallbladder problems, the constant infections and now so much weight loss on an already skinny girl (not from stress, I AM hungry, but i have a hard time eating without all the sympyoms i listed). *sigh*

I wish you ladies the best luck, i know you can get off these, please keep posting, i want to get better and when i have another round of energy after this anti-viral i'm on hopefully, i want to try another way, i don't feel well on these ppi's.

Take care,
Marigold[/QUOTE]

Hi Marigold:

I am not a medical doctor, but don't they have antiviral meds to treat herpes viruses, shingles and those types of infections? If you have an active herpes virus infection in your throat, then there is no way your throat can heal until the infection comes under control. I am not sure how a PPI is going to treat that, though I understand the concept of not wanting that stomach acid to come in contact with the sores and irritate them even more.

What has helped me with the burning feeling in my throat is drinking aloe vera gel. You can buy it at the healthfood store as gel, juice or a tonic. The gel is very refreshing and you can hold it a bit in your mouth and throat as it goes down. It may help relieve your burning throat which I know feels just awful. I had some last night and it helped a bit. I find the DGL helpful but more as a preventive measure. It does not do much once the throat is irritated and burning.

Sorry to hear you are experiencing so much discomfort.
Hello All,
I am so glad I came across the board. I had been on PPI for 4-5 years! I began with Reflux symptoms, coughing and loss of voice after eating, as a result of a stressful life and business. Started taking Nexium, then Aciphex, then Protonix, then Kapidex, then back to Protonix. But after several years I thought the side effects were outweighing the initial symptoms, so just recently I started taking 15 mg of Prevacid (over the counter) 2 x a day. I started to feel so good that I cut down even more to only 1 15 mg in the morning.

At the same time, I switched my menopause meds (Climara Pro) to Climara patch and prometrium at night. Boy that was not a good idea! I started to feel like my stomach was getting very nervous and growly and started noticing that I would wake up congested and constantly felt something in my throat. Then just this past weekend, on my way back from a great little getaway...I ended up in ER with my throat swelling up and a full blown panick attack. As the previous poster noted; who wouldn't panic when your throat is closing up on you... i could literally not swallow. I was treated for a food allergy (but this has not been verified). I didn't totally believe it was a food allergy because i have had this nagging post nasal drip and throat swelling before and new that it was a cause of GERD and/or anxious stomach due to my hormones. The suggested culprit was shrimp even though I have had shrimp many times before.

So now I am scheduled to see an Allergist I have to find out if it was a food allergy or what i now suspect (a result of acid rebound).

I am also seeing a Gastro in a couple of weeks to evaluate my GERD symptoms and a try to develop a strategy plan.

But I have to admit this is all SO frustrating to experience so many symptoms at once and not be sure what is the REAL cause, this alone can drive you crazy...who wouldn't get anxiety.

In any case, I just wanted to thank everyone for posting their experiences because it does help substantiate some of my initial feelings about my own symptoms. I wish you all luck.
I definitely plan on eventually weaning myself completely off the PPI but will prepare a very careful exit strategy first.
Thanks again!
[QUOTE=jayner1;4206773]Hello All,
I am so glad I came across the board. I had been on PPI for 4-5 years! I began with Reflux symptoms, coughing and loss of voice after eating, as a result of a stressful life and business. Started taking Nexium, then Aciphex, then Protonix, then Kapidex, then back to Protonix. But after several years I thought the side effects were outweighing the initial symptoms, so just recently I started taking 15 mg of Prevacid (over the counter) 2 x a day. I started to feel so good that I cut down even more to only 1 15 mg in the morning.

At the same time, I switched my menopause meds (Climara Pro) to Climara patch and prometrium at night. Boy that was not a good idea! I started to feel like my stomach was getting very nervous and growly and started noticing that I would wake up congested and constantly felt something in my throat. Then just this past weekend, on my way back from a great little getaway...I ended up in ER with my throat swelling up and a full blown panick attack. As the previous poster noted; who wouldn't panic when your throat is closing up on you... i could literally not swallow. I was treated for a food allergy (but this has not been verified). I didn't totally believe it was a food allergy because i have had this nagging post nasal drip and throat swelling before and new that it was a cause of GERD and/or anxious stomach due to my hormones. The suggested culprit was shrimp even though I have had shrimp many times before.

So now I am scheduled to see an Allergist I have to find out if it was a food allergy or what i now suspect (a result of acid rebound).

I am also seeing a Gastro in a couple of weeks to evaluate my GERD symptoms and a try to develop a strategy plan.

But I have to admit this is all SO frustrating to experience so many symptoms at once and not be sure what is the REAL cause, this alone can drive you crazy...who wouldn't get anxiety.

In any case, I just wanted to thank everyone for posting their experiences because it does help substantiate some of my initial feelings about my own symptoms. I wish you all luck.
I definitely plan on eventually weaning myself completely off the PPI but will prepare a very careful exit strategy first.
Thanks again![/QUOTE]

Hi Jayner 1:

Sorry for your trip to the ER and feeling your throat close in on you.

I have a good friend who ate shrimp all her life and had a similar situation once. She ate shrimp at a restaurant, felt her throat closing, took some benadryl she had in her purse for allergies and drove herself to the hospital. Not sure why she did that, but she did. She arrived in the nick of time, was treated, given an EPY (sp?) pen, and told to avoid shrimp.

She subsequently tried to eat a little bit of shrimp again to test the allergy and after a very small bite, started to feel her throat closing again. She gave herself the shot and vowed to never eat shrimp or shellfish again.

Therefore, your throat closing may have nothing to do with the PPI or anxiety, expect that one's throat closing would certainly trigger an anxiety attack in me as well. I can't imagine the sensation of not being able to breathe.

My only warning about PPI's, since you are starting or dealing with Menopause, is to have a Dexa scan to see how the PPI's may be affecting your bones, how much calcium you need, etc. Also, I was recently told by my doctor that it is a good thing to have one's levels of vitamin D checked to see if they are low. If so, we then need to take more vitamin D3 to assist with calcium absorption.

I consider myself an informed person and didnot know any of this until recently. I feel like such a "Duh" for not knowing or checking.

Even if you need to continue to take your PPI, there may be ways to prevent bone loss if you take more vitamin D3, calcium citrate (which is more easily absorbed even without stomach acid), etc.

Hope you are feeling better soon.

Rose
Hi Rose,
I have had similar problems with Omeprazole and reflux. Was going through a rough time in my life with divorce and started having some abdominal discomfort, so my PCP put me on Omeprazole once a day. A couple of months later, I decided to try something for my anxiety related to the divorce, etc. and was put on Wellbutrin. Took the Wellbutrin for about 2 weeks and got intense anxiety and chest pain and ended up in the emergency room. Stopped the Wellbutrin and my PCP put me on the Omeprazole twice a day which gave me wicked GI upset with nausea and diarrhea. By this time, I had been on the Omeprazole for about 3-4 months and when I tried to stop taking the omeprazole, I think I developed severe rebound acid reflux. Didn't really want to take another PPI because I felt like I would continue to have problems with GI upset. Had an upper endoscopy which was normal but was told I probably had reflux and should start taking Protonix once a day (another PPI). In the meantime, I've had terrible chest burning and stabbing back pain and have just started taking Zantac 150mg twice a day. I'm determined to stay off the PPI and have heard it can take several months for the rebound acid reflux to resolve. I'm about 3 weeks without a PPI. This has been very disruptive for work and home life...I feel so bad that I'm afraid it won't get better! Any suggestions?
[QUOTE=col1mm;4214877]Hi Rose,
I have had similar problems with Omeprazole and reflux. Was going through a rough time in my life with divorce and started having some abdominal discomfort, so my PCP put me on Omeprazole once a day. A couple of months later, I decided to try something for my anxiety related to the divorce, etc. and was put on Wellbutrin. Took the Wellbutrin for about 2 weeks and got intense anxiety and chest pain and ended up in the emergency room. Stopped the Wellbutrin and my PCP put me on the Omeprazole twice a day which gave me wicked GI upset with nausea and diarrhea. By this time, I had been on the Omeprazole for about 3-4 months and when I tried to stop taking the omeprazole, I think I developed severe rebound acid reflux. Didn't really want to take another PPI because I felt like I would continue to have problems with GI upset. Had an upper endoscopy which was normal but was told I probably had reflux and should start taking Protonix once a day (another PPI). In the meantime, I've had terrible chest burning and stabbing back pain and have just started taking Zantac 150mg twice a day. I'm determined to stay off the PPI and have heard it can take several months for the rebound acid reflux to resolve. I'm about 3 weeks without a PPI. This has been very disruptive for work and home life...I feel so bad that I'm afraid it won't get better! Any suggestions?[/QUOTE]

Hi Co/1mm:

Sorry you are going through a divorce. I know the stress and upheaval don't help the body heal. I am sure they keep your tummy churning. I had horrible rebound until about two weeks ago and I feel I may have just started to turn the corner and see a life without the darn PPI. I can't predict how it will go for you, but I think it can get better. If you are at week three, you are probably still in the thick of it. Hang in there if you can and feel you can play this out for a bit.

What I did wrong when I started the weaning off process was to get off the PPI too quickly. I was off them a week when I started to experience the rebound. However, by then I was a week out and did not want to start the cycle all over again. That was the last week of January.

This is what I have done to deal with this rebound phenomenon. All this may or may not work for you.

1) I took 150 Zantac twice a day until a couple of days ago when I reduced the dose to 75 mg Zantac twice a day. I'll see how it goes and will go back up to 150 mg if I feel I need the higher H2 blocker dose. I tried Pepcid too, but the Zantac worked better for me.

2) I found that a low carb diet has helped me. Try to reduce carbs as much as possible if you can and eat more lean protein, nuts and veggies (along with some fruit). For a while there, I was eating a lot of dairy, rice and potatoes and, tough bland, that type of diet was not helping me. For whatever reason, the stomach produces more acid to break down the carbs.

3) No coffee, alcohol and other acid producing foods. I think milk and dairy go into that category. I now drink almond milk and take my calcium citrate pills twice a day. I think decaf coffee has a lot of acid too.

4) Don't eat close to bedtime and don't go to bed with a full stomach.

5) I started drinking aloe juice but I now take aloe pills and slippery elm pills in-between meals. I also suck on DGL. I chew sugarless gum after meals for about an hour whether I have heartburn or not. I think it helps produce more saliva and aids with digestion. It is not hurting and I think it may be helping me.

6) I never take any pills, including vitamins, on an empty stomach.

7) Read all you can. Reading about acid rebound did not make the rebound any easier to deal with, but understanding the process better has helped me to make better decisions regarding whether or not to wait it out. If I had not come here and read old posts, I would have probably been back on the Aciphex within a week. Nobody can live through this rebound misery forever. On certain days I was experiencing heartburn for five or six hours non-stop.

8) I use liquid Gaviscon as a last resort when I experience heartburn, particularly if my stomach is bothering me before bedtime. I don't want to take too much because it has aluminum and a lot of aluminum is not good for you. But Gaviscon is a God-send when I am having one of my "heartburn attacks" that can last for hours.

I think this has been it in a nutshell. I don't think PPI's are evil, but I am upset my doctors never informed me of side effects (possible osteopenia or osteoporosis, acid rebound, etc). I was simply told I had GERD, and would need to be on the PPI forever.

Best wishes to you and please post and let us know how you are coming along. I have had some really bad days when I thought I had to take that PPI and here lately, I have begun to have more "better" or "good" days. I hope I can continue to stretch those out.

Rose
Hello Rose,

I wanted to thank you for your detailed posts and I do appreciate the fact that you are following this through until the end so that other members can find out the outcome after a period of time, rather than just at the beginning of their journey.

I have been taking Nexium for almost 3 years, 40mg 1 x day. It worked very well for my heartburn. I had been thinking about trying to stop taking it as I don't like to take medicines indefinately if there is a way to treat otherwise. So I started googling about stopping Nexium and I could not believe some of the information I found. I had several side effects that I thought were a result of other issues. I suffered anxiety a few years ago and have that very much under control. However, I learned through that process that your body can react to stress and have physical symptoms. I thought that was what was happening to me until I read some of this information. I had one trip to the ER last summer due to swelling and of course, they came up with nothing.
I also had not been supplementing with calcium.

The side effects I have had over the past 18 months include:
-tingling in hands and feet
-extreme swelling in legs and ankles
-muscle spasms
-eye twitching
-skin eruptions
-joint pain
-nerve damage

I decided to stop the Nexium cold turkey (which I may not have done if I had read all of your information first). Today is day 21.

I have been using Tums and have taken Zantac 150mg as needed. I have had raging heartburn at times, felt quite nautious, exhausted and some sour taste in the morning in my mouth. At this point in time, I would just like to feel better. Every day I feel I am walking on eggshells in terms of how I am going to feel.

I am confident I made the right choice to come off the Nexium. I would also like to have 6 - 8 weeks of this under my belt before I discuss with my doctor (although I know he will say I should have discussed it with him first).

How do you know if it is rebound or reflux? Are you having futher tests done?

Thank you again for your commitment to this and I look forward to your continued progress.
[QUOTE=LMF123;4224113]Hello Rose,

I wanted to thank you for your detailed posts and I do appreciate the fact that you are following this through until the end so that other members can find out the outcome after a period of time, rather than just at the beginning of their journey.

I have been taking Nexium for almost 3 years, 40mg 1 x day. It worked very well for my heartburn. I had been thinking about trying to stop taking it as I don't like to take medicines indefinately if there is a way to treat otherwise. So I started googling about stopping Nexium and I could not believe some of the information I found. I had several side effects that I thought were a result of other issues. I suffered anxiety a few years ago and have that very much under control. However, I learned through that process that your body can react to stress and have physical symptoms. I thought that was what was happening to me until I read some of this information. I had one trip to the ER last summer due to swelling and of course, they came up with nothing.
I also had not been supplementing with calcium.

The side effects I have had over the past 18 months include:
-tingling in hands and feet
-extreme swelling in legs and ankles
-muscle spasms
-eye twitching
-skin eruptions
-joint pain
-nerve damage

I decided to stop the Nexium cold turkey (which I may not have done if I had read all of your information first). Today is day 21.

I have been using Tums and have taken Zantac 150mg as needed. I have had raging heartburn at times, felt quite nautious, exhausted and some sour taste in the morning in my mouth. At this point in time, I would just like to feel better. Every day I feel I am walking on eggshells in terms of how I am going to feel.

I am confident I made the right choice to come off the Nexium. I would also like to have 6 - 8 weeks of this under my belt before I discuss with my doctor (although I know he will say I should have discussed it with him first).

How do you know if it is rebound or reflux? Are you having futher tests done?

Thank you again for your commitment to this and I look forward to your continued progress.[/QUOTE]

I, too am experiencing what I think are side effects of Aciphex. I have been taking it for 8 years. The beginning of this year I did my little "cold turkey experiment" and although it was bearable I felt like I may have been doing myself harm. So I went on Omeprazole (due to insurance wanting a cheaper alternative) and that didn't seem to work. Although, thinking back I think it did. Anyway, my GP got my insurance to fill the Aciphex and now I'm back on it. So I was off Aciphex for about 6 weeks and a week or two after I went back on it, I started getting these muscle spasms/cramps/twitches....whatever they are. They are mostly in my abdominal region however I have little spasms in my upper thigh at times. They are not constant and some days I really don't have them. Yesterday I took Zantac instead and didn't have them. I really didn't have them all the years I was on it but I did have headaches more. I am going to see a new Gastro and explain everything and hope I can beat this thing.





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