Posted by: inforodeo | October 28, 2009

Unshackling Myself From Prilosec

About six years ago, I was suffering daily from heartburn, and a friend suggested (partly on the advice of her sister, who worked for a pharmaceutical manufacturer) that I try Prilosec. Within a day my heartburn was completely gone, and I figured I didn’t need it anymore, but she said I should follow the full 14-day course, so I did.

When I finished, I followed the instructions to not take it again for four months, and by the following morning I was in more pain than I’d been in previously. My friend called her sister, and relayed the message that it was ok to continue to take it, because they “only suggest the four month break in case there is something more serious going on”.

DOCTORS ASSUMPTIONS (OR ARE THEY PAID TO SAY THAT?)

After a few months, I had to go to a doctor for a sore throat, and I figured I would ask them about Prilosec. The doctor asked how long I’d been taking it, and I told him. He said, “is it working for you?”, and I responded, “Yes …”, to which he quickly (and sort of proudly?) replied, “then keep taking it.”

Two more years passed, and off and on I would feel a little sick at work, but otherwise ok. I began to put on weight, going from 210 to 230 or so, but I attributed this to my lifestyle (I was making more money and could finally afford to eat), and decided to eat more “healthy” – which meant, at the time, not eating as much candy or burgers.

At some point I developed a condition that required some outpatient surgery, and when I was visiting with my surgeon, I asked him if it was safe to keep taking Prilosec. He said pretty much the same thing the doctor had said – that if it was preventing my heartburn I should keep taking it, and only to worry if I began noticing other symptoms, like blood or weight loss and stomach cramps, etc.

STRANGE SYMPTOMS

Over the next year, I began experiencing troubling symptoms while I was at work. I worked in an office building, and sometimes would be sitting at my desk when I would suddenly “lose power” and start sweating, having difficulty thinking clearly, and become incredibly weak. The few times my co-workers or supervisors saw me, they remarked at how pale I was and sent me home … but I couldn’t drive because I was so dizzy and weak.

At some point, I began having strange arm and leg pains. I would feel “pinching” and sometimes tingling in one or both arms. If I hadn’t slept enough the night before, my left arm would turn red and ache, until I held it over my head. I would also experience chest pains (cramps in my diaphragm), and because I was smoking I did my best to quit, hoping to improve my health. I changed my diet to “grapes, cheese and bread”, and drank a lot of water … which helped for awhile, but I would still grow weak or my hands would go numb until I ate something with more sugars and proteins … like a McDonald’s meal.

I also began to have – infrequently – “charlie horses” in the muscles of my neck, beneath my jaw. These pains were TERRIBLE, and lasted a long time, making it hard to talk or swallow.

Because eating food helped to minimize my symptoms, I put on more weight, now going to 240, and then 250. I’d been “fat” before, but this was pushing the previous limit for me. I couldn’t exercise because of my breathing problems (I’d had childhood asthma, and having smoked for the past or so years I had a severely reduced lung capacity), so I tried to walk more and eat less fats. Unfortunately, the more I walked the more my heartburn would flare up. I began carrying aspirin with me, and any time I had stronger-than-normal chest/arm/neck/jaw pains or numbness, I would take two aspirin, figuring “if it is a heart attack, this will help”. It didn’t occur to me that aspirin also causes ulcers as it kills the stomach lining.

HEART ATTACK?

Two years ago, I began experiencing a “weight in my chest”, pain and tingling in my left arm and jaw, and dizziness while sitting in a chair. My wife called the paramedics and they checked me for a heart attack, but only found elevated blood pressure (a lot of my pain had gone by then). They suggested we go to the “Chest Pain Center” of a local hospital, so we did. I spent the night there (they released me early in the morning), and they took a blood sample and monitored my heart, but the indicators of a heart attack were not in my blood, and the ECG seemed mostly normal. They suggested I visit a cardiologist, so we made an appointment.

I’d had a “panic attack” once before in my life, and these didn’t seem like that, though they did involve “panic” (when I was suddenly and unexpectedly best by a terrible or intense and unusual pain it freaked me out!) and tense muscles.

The cardiologist didn’t find anything of concern, and said “for your weight, your heart is incredibly healthy”.

GENERAL UGH.

About six months later, I began feeling “sick”. It was hard to describe the feeling … it was like the bones in my fingers wanted to vomit. My body felt like it was rejecting itself. I felt “numb” … not “tingling”, not “goose bumps”, not “hot” … just numb. I could feel pressure on my skin, but it was difficult to feel heat or cold. I would feel an itch and reach to scratch it and not be able to locate it, even though it was still itching. I began to trip over my feet more, my eyes sometimes wouldn’t focus. I couldn’t hold a piece of paper up to read because my arm could barely support its own weight. I was dizzy. I had always loved to read and to create music and art and to write, but I couldn’t do those things because the act of thinking was difficult. Even watching television was hard to focus on. I began to be more angry and aggressive … partly because of my inability to function, but also because I just felt angry. No reason – I just did.

Certain foods seemed to aggravate my illness. Any food made it hit me, but sugary foods, chocolate, and fatty foods made it unbearable. Pastas, especially spaghetti and macaroni & cheese made me “sick”. Rice and potatoes made me “sick”. Broccoli was ok, and Salmon actually made me feel better, but sandwiches, chips, cheddar cheese and ice cream all made me sick. I even tried to not eat a few days, and I would feel less “sick”, but then I’d get really weak. I tried exercise, and riding my bike made me feel a little better, but then I’d have to deal with acid in my throat.

I went to a doctor. He reviewed some prior blood tests I’d had over the years, and suggested I had some sort of liver damage and high cholesterol. He said he didn’t want to give me any cholesterol-fighting drugs that might further damage my liver, and suggested I take Niacin and Fish Oil for awhile. They seemed to help me feel less “dead”, but the Niacin flush really irritated me and I still couldn’t eat sugary or starchy foods. At one of the follow-up visits we discussed a variety of things, and I asked if it could be pancreatic cancer or something (because of blood sugar issues, liver damage, etc), so he sent me to the hospital for a sonogram, and (as far as I know) they didn’t find anything abnormal. He also suggested I might have H. Pylori – the most common cause of ulcers – but my test was negative.

I went snowboarding that winter, and the physical activity made me feel really good for a couple days.

In the spring, I began experiencing really bad muscle cramps in my diaphragm, making it difficult for me to breathe. I had a few long-lasting cramps in my thighs, too.

A NEW PHASE OF PAIN

I lived with these symptoms for almost a year, and then began developing arm/neck/chest/jaw pains again, this time more severe. I’d be sitting in class or even sleeping and suddenly be jolted by a severe pinch or sting or throbbing pain in one of these places. A few times the left side of my face went numb. I started carrying aspirin with me again, and probably took two at least twice a week. I also started having back pain and feeling exhausted all the time, and more and more my shoulders were aching and weak. I also began having really bad joint pains in my fingers (they’d swell up), had dry eyes, and off and on would have terrible, terrible pains in my knees (alternating) that felt like I’d ripped something. The pains would appear out of nowhere (getting up from bed, while walking, etc), and vanish just as quickly (I think the longest I had one was 2 days). I also had muscle pains in my eyes and eyelids that felt like tiny cramps. I should mention that a lot of the muscle cramps I had lasted so long that the pain would eventually turn into numbness and tightness.

MUSCLE WEAKNESS

One day, in September of 2009, I came home from church and my 2 year old daughter wanted me to lift her up,so I did. Almost instantly my body became so weak I had to put her down and lie flat on the floor for about 20 minutes to regain my strength. I felt exhausted like that the entire day, though each time I napped for a few hours I’d feel a little better for a bit before the weakness returned.  It scared me, and over the next week I was trying to figure out what exactly had been happening to me.

Sometimes the weakness would seem so great it seemed like too much work to breathe, often I couldn’t seem to get up the strength to carry on a conversation.

I began having cramps in some facial/head muscles too, in my temples.

IS PRILOSEC MY ‘MYSTERY DISEASE’?

I’d been keeping track of my blood pressure and symptoms for awhile, on the advice of my wife (because most of the time when I went to the doctor I would forget to tell them things or decide certain symptoms weren’t worth mentioning), but I decided to start keeping track of what medications I took & when also. At some point, it occurred to me that this may be related to prilosec, so I pulled out the sheet in the box (which I hadn’t read in years) and saw where it said not to take it if you experience “shortness of breath, chest, arm or shoulder pains”. Though I’m sure this was more of a “because you may have heart problems instead of heartburn” warning for new users, I decided I needed to quit taking it.

The first day I quit taking prilosec, I got a lot of my energy back. The second day my heartburn came back, so I began using Rolaids. Since there is a limit to how many of those you can take in a day, I also bought some Tagamet and alternated between half-dosages of the two (you can take two Tagamet a day, so I took one, and Rolaids suggests “two tablets” as needed, but I would take one, etc). This seemed to be working – my arm pains and the inching went away pretty quick.

Over two weeks, however, I could feel the heartburn getting worse, and soon realized I was dealing with ulcers in at least two different places, as well as the “heartburn” that started the whole thing. I switched from Tagamet to Zantac 150, and though that helped a little more, it didn’t seem to be fixing the problem completely.

I should mention that I also changed my diet and habits. I ceased eating at least two hours before bed time, I slept “propped up” on pillows, and I found a list of foods online that showed which foods are least likely to cause heartburn (cabbage, bananas, graham crackers, etc) and which foods are more likely (fried foods, sugars, soda & coffee, etc). It wasn’t a big change in diet – I’d had to eliminate sugars and fried foods a year before due to the “sickness” – but it did force us to buy more fruits and vegetables. I also resolved to not use ANY painkillers, because though aspirin was the worst for the stomach lining, all NSIDS (Tylenol, etc) damage the stomach lining, allowing ulcers to develop.

A strange side-effect I experienced was sudden infection of two injuries that had not previously been infected. I’d injured my toe a month or two earlier, and it had been in pain, but did not get infected. I’d also had a problem with a body piercing I used to have (had removed it three years earlier). The toe became infected, requiring a trip to the doctor and some minor surgery, and the location of the former piercing began to ache and ooze pus. I wondered if these two things were indicators that somehow Prilosec had also prevented my body from doing whatever it needed to do to heal from these injuries, but now that I’d stopped the drug, my body was producing (white blood cells?) whatever it needed to heal these injuries.

I experienced two other side effects from the diet and change in pills. The diet caused constipation (I’d been used to daily diarrhea that had come with Prilosec), and the Rolaids gave me kidney stones! Kidney stones hurt bad – I was lucky (I think?) and found a home remedy online (Lemon Juice+Olive Oil) to break down the stones, and it worked – three days after the first pains I could feel the stone working its way down, and a day later it was gone. Needless to say, the experience wasn’t pleasant.

At about two or three weeks off prilosec, my ulcers hurt really bad, and I got weak/sweaty/pale and had difficulty breathing one afternoon, so I decided it was better to be miserable on prilosec than to risk a perforated ulcer, so I started it back up.

I’d lost a lot of weight during this time, too. I think some of this was due to increased ability to absorb nutrients from my food, as well as unwillingness to eat much (because of pain!) and the reduction or elimination of ALL sugary and fatty foods. I’d begun snacking on apples.

Within about 8 hours my ulcer/heartburn pain was gone, within two or three days my muscle pains were back, though much more intense. This confirmed the Prilosec-Muscle pains connection, so I went online and searched “Prilosec+Muscle Weakness”, and found a plethora of sites which identified IN GREAT DETAIL and ACCURACY my own symptoms. On one site someone mentioned their arthritis pains became more severe each time they took Prilosec. On another, there was mention of prilosec causing cartilage problems. A scientific study of proton-pump inhibitors (PPIs), which include Prilosec, Nexium, and others, implicated the drugs in the dramatic decrease in bone density in users who had used the drugs consistently over one year.

‘PINCHED NERVES’ AND THE CHIROPRACTOR

I became convinced that my pains were due to a “pinched nerve” in my neck (some of my vertebrae had been “grinding” and cracking lately), and decided to go to a chiropractor. (I should add – we had lost our health insurance earlier in the year and were denied on re-application because my wife had a “pre-existing condition”. He was born healthy a few months ago in an out-of-hospital birth.)

My chiropractor examined me and determined that my back was indeed in need of adjustment, but I needed to get my other health in line first.  He said by looking at my skin and how I shook, he could tell I was low in magnesium, and suggested I take a certain amount daily.

At home, I looked up magnesium, and saw that in large doses it can cause muscle weakness (including death!), and wasn’t going to take it. Without a blood test, it wasn’t possible to determine whether or not I was deficient, and I didn’t want to risk my life on the advice of an “alternative medicine practitioner”. Fortunately, I also looked up “Prilosec+Magnesium”, and learned that Prilosec not only prevents the absorption of Calcium, but it also prevents potassium and magnesium too! Since magnesium and potassium are needed by the body to relax muscle tissue between contractions, it was likely my prilosec use had over the past 6 years caused my body to absorb very little magnesium and potassium, which was probably the cause of my muscle cramps and pains, ever increasing blood pressure, and other problems.

I decided I absolutely had to get off of prilosec, and searched the internet to find out how.

A WORKING SOLUTION?

A few people who had quit taking it suggested the same regimen of pills:

DGL Licorice, Probiotics, Enzymes, and, if needed, a weaker acid reducer (rather than a PPI) like Zantac or Tagamet.

Of those who did this program, a few who had taken it a long time (not as long as me!) said it took 3 to 4 weeks for their pain to be gone. I was not looking forward to going that long, but with the alternative probably being a painful death, I figured I’d tough it out.

I stopped my prilosec that day and went to the health food store the next. I also picked up some pH diet materials, including litmus paper,(more on that later) at the suggestion of my chiropractor. The items I came home with were as follows:

DGL Licorice: De-Glycyrrhizinated Licorice is a licorice supplement that has the glycyrrhizin removed (it causes high blood pressure). The DGL supposedly causes the stomach lining to absorb and hold more water, which allows it to heal more quickly from ulcers and protect itself from stomach acids. Currently the only possible side effects known are rare reactions with calcium supplements or milk that can cause “milk alkai syndrome”, a potentially dangerous condition in which the body gets too much calcium. This syndrome happens on its own in people who use a lot of antacid tablets, and can cause kidney failure, muscle weakness, etc.  Because of the good effects of the DGL, however, I have not had to take many (or any) additional Rolaids, so I don’t think this will be a problem. It seems to be working for me, but the National Institute of Health says that DGL is slightly effective in treating a few things, but stomach ulcers are not one of them. Those who do use it/suggest it recommended that DGL be chewed slowly and mixed with saliva because it helps activate it; I seem to recall somewhere reading that I should drink 8oz of water after swallowing two tablets, and then wait 20 minutes before eating my meal. I usually drink about 12 to 14oz of water, and have sometimes used DGL without additional water, or during or after a meal that seems to be aggravating my heartburn.

Probiotics: I bought some inexpensive acidophilus pills (they range from $9 to $35 for a bottle, and have to stay refrigerated), but was already taking a daily serving of a Dannon’s Activia Probiotic Yogurt. Adding the pills initially upset my stomach, but only the first couple days. Probiotics supposedly restore helpful bacteria to your digestive system that are lost when you take antibiotics and other medicines.

Digestive Enzymes: an enzyme mixture tablet was recommended by a few of the sites I visited, as well as those at the health food store I spoke with, but I am a little skeptical. I didn’t notice much of anything with these, the ingredients sound suspect, and it is my understanding that some of the foods I eat ought to provide enough of these, but other than a little discomfort (I may be allergic to one of the ingredients), they seem pretty harmless.

The sites also suggested something called “Heartburn No More” by Enzymatic Therapy. Its main ingredient is some kind of extract from orange peels. Those who have used it said it causes heartburn pain in the first few days, but eventually clears it up quicker than any of the alternatives. My local store didn’t carry this, so I didn’t have a chance to try it. The local store quit carrying it because no one bought it. There is also a controversial (as in “scam”) book by the same title which is (as far as I can tell) NOT related to the product.

I did, however, begin taking a Ginger herbal tea (no caffeine) called Organic Ginger Aid by Traditional Medicinals. This tea stings a little at first, then gives the “warm feeling” that my candied ginger did (used it for awhile before I discovered this tea). After that, the heartburn calms down quickly. The ginger tea, however, (and I suspect most ginger in general) has a mild laxative effect, so it’s probably a bad idea to use it regularly. I usually drink an additional 20oz of water during or after the tea by habit, though I can’t remember if this was due to an urge to drink more water or because of something that was suggested somewhere along the line.

THE pH DIET

I’d mentioned the pH diet earlier.  My chiropractor suggested it, and I looked it up online. Basically, the theory is this: Our bodies should be slightly alkaline, and that alkalinity can be achieved through diet by eating certain foods which are either already alkaline or which break down and make our bodies more alkaline. (An example of the latter would be lemons, which start out acidic). When our bodies are too acidic, or organs and cells are damaged, and (according to the theory) our body stores and produces more fat to battle the acidity … so (again, in theory) eating to lower one’s alkalinity also lowers one’s body fat.

I probably wouldn’t have bought all the way into the whole pH thing if it weren’t for two important things that struck me: The first was that the foods recommended by the diet were mostly the same foods in my existing “low heartburn” diet (cabbage, bananas, apples, etc). I figured that adhering to the diet wouldn’t be that big of a deal since I was already mostly doing it.

Secondly, this whole business about losing weight as a result of a more alkaline pH was interesting to me, because in the time I did the diet I was on (which was similar to theirs), I had lost 30 lbs. I was 280+ in June, but as of today I am 248. I have not (though I certainly wish to!) exercised at all … it’s been diet only. My diet (prior to the small new restrictions for the pH diet) was pretty much this:

  1. No saturated or trans fats
  2. Low cholesterol (or high “good” cholesterol, low “bad”)
  3. Low or No sodium, no adding salt to meal
  4. Less than 9g sugar per serving
  5. drink lots of water
  6. eat mostly fruits and vegetables (particularly cabbage, apples, spinach and bananas)
  7. nuts with low or no sodium added
  8. no fried food
  9. nonfat or low fat cheeses, yogurts, and sour cream
  10. only broiled or baked meats (and really I only ate fish: salmon, tuna, catfish and sardines)
  11. as little dried seasonings as possible
  12. no “processed” foods: breads, cookies, cakes, fast food, tortillas, etc.
  13. no corn, but wheat and “whole grain” stuff ok in moderation
  14. baked potatoes ok, small servings of rice (I found whole grain waaaaaaay better than processed instant white, etc).
  15. Baked potato chips are OK, so one serving or less of those, nuts and apples were my “treat” or desert.
  16. I also read that “fermented” veggies are better than fresh veggies in a lot of cases because they will have natural food-specific enzymes that help break them down (part of the reason preservatives in food are bad), so I started eating Kimchee (Kim chi), a Korean dish made from fermenting cabbage. I’d been worried about the spices (peppers, garlic) in it, but when I learned about the pH diet, these were good things. Kimchee has not aggravated my heartburn … and from what I read, there have been studies on Kimchee showing that most kinds actually promote digestive health and prevent stomach cancers (though there is one specific kind that actually seems to have an opposite effect).
  17. I also continued to stay away from coffee, most teas, alcohol, tobacco, and sugary foods.

For breakfast each day I would eat lightly-scrambled eggs (unsalted butter, no added spices) on whole-grain toast, sometimes also eating some cabbage mixed in with the eggs. I think the pH diet says “no eggs”, so lately I have been eating a high-fiber cereal each morning instead.

I’ve also continued to take my fish oil supplements, rarely take my Niacin, and have begun using the Magnesium (citrate) supplements my chiropractor suggested, though still at a dosage less than he’d suggested (I take one or two a day, rather than three “working up to” a higher prescribed amount.

CURRENT SYMPTOMS/RESULTS

From an “I can feel it working” perspective, I’d say that the ginger tea, the licorice, and the pH diet (and lots of water) are the things that seem to be working the most. One DGL tablet works better for me than two Rolaids, for example.

I still have some heartburn, but I haven’t had to resort to Prilosec, and this time around my symptoms seem to be getting better, rather than worse with time. Before, without Prilosec, I was in constant pain. Now, I only have some pain, and that pain only happens about 40 min to an hour after eating something that isn’t in my diet (chicken nuggets or cookies).

I’ve noticed a lot more dry eyes and/or eye fatigue lately (everything seems a little blurry), but the eye thing may be due to being trapped indoors with cats in an arid part of the world with the heat on (!) but it is only fair to mention it in case it is not.

I am getting bad acne. I’m nearly 36 years old.

I have actually experienced some infrequent muscle pains, but these are brief (while on Prilosec they were sustained or with enough frequency to keep me in near-constant pain). I’ve also had some cramping in my ribs and some back pain, but the back pain is less and the rib-cramping is similar to what I had a few years back with my jaw & other strange cramping.

When I am stressed (baby crying, etc), my heartburn comes back when my abdomen tightens up, but the good thing is that it is heartburn, NOT ulcer pain. I have been able to eat other foods that previously hurt: a chicken sandwich, a milkshake, and yesterday I had some mild Mexican food.

At this stage I cannot say with certainty that I am going to get better, but things certainly are heading in that direction. I last took Prilosec on October 19th in the evening (I’d been trying to stagger my dosage to take as few as possible – it was working out to about 28 to 36 hours between taking one and needing another) – today is October 28th, so it has been 9 days so far. I have twice (or 3 times?) taken a Zantac 150 during this time to help get rid of heartburn that feels like it might get worse overnight, but with the DGL licorice working so well, I don’t know that I will need to do that any more. When I’m out & away from home I’ve been carrying two DGL tablets with me and an unused roll of Rolaids Extra Strength in case of any problems, but so far I’ve only had to use one DGL.

THINGS I FOUND OUT ABOUT PRILOSEC

Prilosec is one of the many drugs called “Proton Pump Inhibitors”. These are kind of like “stomach acid preventers” (rather than “acid reducers” like Zantac, Pepcid or Tagamet). While this makes it give awesome results, long term use is dangerous (I suspect) because our bodies produce stomach acid for a reason: to help digest food, which in turn, releases nutrients to be absorbed by the intestines, etc. When we have “too much stomach acid” (I put it in quotes because some persons who experience these problems actually have too little), there is a reason! It might be that we ate something that can’t be digested, it might be that there is something fooling our stomach into thinking it hasn’t digested something (like a stomach tumor), or we might not really have “too much acid” – we might have the right amount but our body isn’t processing food fast enough to empty the stomach, or we’re overweight and the stomach is folded over funny, squeezing acid up. We might just be eating too much, or lying down (going to bed) too quickly after eating.

The companies that make these medicines know there are many causes of heartburn, so they put some suggestions on the box/in an insert: “quit smoking. don’t wear constrictive clothing. don’t eat right before bed. lose weight.” I suppose that, to people who are either in terrible pain from doing these things or are recently relieved from that pain by the miracle drug, these suggestions are about as effective as surgeon general’s warnings on boxes of cigarettes. I tried some of these things, but probably like most people, I didn’t do all of them, nor did I do them consistently.

PPI’s, probably through the act of eliminating stomach acid, prevent the absorption of things our bodies need, like Magnesium, Potassium, and Calcium. Over time, these deficiencies can have some serious bad effects, including (drum roll please!) digestive problems. We don’t recognize that problem because we assume it is par of the problem we’re trying to remedy with the miracle drug. Fortunately, there are other side effects we can notice! Our muscles cramp, become weak, burn. Our joints – particularly fingers and sometimes toes – swell. We feel ‘dehydrated’, when really what we are is starved of nutrients our body needs. Our pancreas can swell causing insulin problems. Our bodies become more prone to panic attacks, our nerves begin transmitting false messages of pain/burning/itching. When our body does produce acid, it over-does it to make up for the times it is prevented from doing so by the PPI. Our bone density gets bad, and our bones become brittle. Our cartilage shrivels up and doesn’t repair itself. Our vascular system suffers from magnesium depletion, and our blood pressure rises. Our body does other things to help absorb nutrients from our food. We suffer from diarrhea.

Other things happen indirectly. If we still have stomach problems, we eat more food because it relieves the pain. If our bodies are starving from lack of nutrients, we eat more food to relieve the starvation pains. Either way we get fat!   If you are like me and think taking a pain reliever will make you feel better, you’re really only making your problem worse, killing stomach cells and making pockets for ulcers to develop.

Prilosec OTC is also a strange drug in how it is marketed. The OTC dosage is something like 20.6 mg, but a prescription version of the drug comes in a lower dose of 10mg. (There are also higher doses available by prescription). I’m not a doctor, so it might be stupid for me to ask this, but what other over-the-counter medications come in a higher dose than their prescription counterparts?

I figure I have spent somewhere around/over $2,000 on Prilosec in the past 6 years (if I did my math right).  I was shocked and relieved – to tears – when I found a website a couple weeks ago that lets consumers discuss their side-effects, and saw so many people out there experiencing the same set of “mystery” symptoms that have been ruining my life for the past few years! These things have caused me to miss days of work, and have difficulty in seeking new employment, pay thousands of dollars in hospital and doctors bills, have my blood drawn numerous times, live in fear of going too far from a doctor (never knowing if it was a heart problem), and make visits to emergency rooms. It has robbed me of doing the things I love to do most: playing with my children, riding my bicycle, hiking, and other activities. It has brought fear and stress into my life. It has caused me to live at least four years without mental clarity, and caused me to experience anger and rage that had not been a part of my life before.

Sadly, the packaging for Prilosec and other drugs is a sort of disclaimer: they tell you to go to a doctor if you are experiencing any of these symptoms (in a way that makes them sound like something other than heartburn, and therefore other than caused by the drug), they tell the consumer to only take it for 14 days, then to wait 4 months before starting a new series, and they remind us that it may be a “sign of a more serious condition”.  This makes it difficult for a consumer to later sue the companies.

As part of the strategy, these companies then hold special seminars for doctors, and convince them that these drugs are safe, and that if the patient has no “condition” (cancer, etc), that their drugs can be used indefinitely to relieve the symptoms of being fat, eating before bed, drinking caffeine, or otherwise being an unhealthy adult.

All drugs have their place, but it is important to remember that most drugs and treatments exist to remove the symptom, not the underlying cause. As a part of a specific treatment, PPIs are probably great things, giving ulcers the chance to heal. As a consumer-targeted OTC medicine, however, these are dangerous … especially when doctors are encouraged to keep their patients on the drugs because they are “safe”.

I will continue to update this page with any additional information about my own attempts to get off the drug.

Disclaimer: I am NOT a doctor. My experience with traditional medicine only extends as far as my personal medical history (being treated, researching the ailments for myself, talking to others) and a handful of discussions with doctors. My personal experiences with alternative medicine are limited to a brief time I worked in a natural health/nutrition center in a department store, and a few years off and on I spent with people who lived deeply immersed in the “naturopath culture” and all that New-Age healing stuff.

ADDITIONAL SOURCES:

  1. http://www.newswithviews.com/Howenstine/james21.htm
  2. http://familydoctor.org/online/famdocen/home.html
  3. http://www.wellsphere.com/general-medicine-article/magnesium-the-most-powerful-relaxation-mineral-available/363180
  4. http://www.rense.com/1.mpicons/acidalka.htm
  5. http://medicationsense.com/articles/jan_mar_04/prilosec_otc.html
  6. http://www.rxlist.com/prilosec-drug.htm
  7. http://www.peoplespharmacy.com/2000/04/01/omeprazole/
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Responses

  1. I’d ordered my medical records from doctors around the country a couple weeks ago, and a few more arrived today, so I went through them and made notes of abnormalities.

    I learned that an ultrasound done on me a year ago (in response to the “feeling sick” mentioned above). The ultrasound revealed a slightly enlarged liver and “splenomegaly” (enlarged spleen). I don’t know yet if either is related to the use of prilosec, related to the underlying cause of my heartburn (including obeseity and inactivity!), or something completely different …

    but I figured I would report it here anyway, just in case it IS related in some way.

  2. The DGL has begun to”not do the trick”. I’ve been taking half the recommended dosage, though, and the other day I was too confident and ate a small portion of “finger steak” (regional food: breaded & fried strips of steak – double bad for heartburn!).

    New additions to diet/treatment: L-glutamine, Vitamin A, and “cabbage juice” (using a Juicer, juice 1/2 head of cabbage, one apple & 1/2 a carrot). The cabbage juice needs to be used immediately (it loses some of its juice “magic” if it sits too long), but drinking about 1/4 cup of the stuff (which doesn’t taste too bad) stops heartburn pain for an hour or so.
    The Vitamin A & L-glutamine supposedly help rebuild the stomach and intestinal linings.

    My Magnesium pills also stop heartburn for an hour or two each morning when I take one.

    Today I AM experiencing some shoulder weakness and off and on back pain … but I’ve also been carrying kids and grocery bags, and didn’t sleep too comfortably last night. I also feel “tense” over all.

  3. I may have spoken too soon!

    Today my heartburn was minimal. I started the morning off with a Magnesium supplement, ate some high-fiber cereal (gross) with just a little milk. I tossed in a chopped banana. No issues.

    Later in the day I had a toasted “everything” (seeds) bagel with non-fat cream cheese, fresh alfalfa sprouts and tossed on some steamed cabbage as a heart-burn preventative. Again, no issues.

    At some point in the day I had a little heartburn, so I took my two licorice tablets and a glass of water.

    In the evening we were out, so we went to a fast food place and I got some halibut, a grilled chicken salad (no dressing), and a pumpkin & clove shake. About 4 hours later I got a little heartburn.

    Now the bad news: Today I had severe muscle pain/weakness. I felt “tense” since waking up – my first sensation this morning was that I was being crushed by a giant snake …

    Magnesium throughout the day seemed to help a little, but I was miserable most of the afternoon. A few times I was short of breath. I also had burning in my fingers.

    Before bed I calculated my vitamin intake for the day … I was short on my Magnesium (only 300mg), and my calcium was around 1/3rd what it should have been. Tomorrow I will increase my magnesium.

    I should note: because I felt fairly healthy yesterday, I spent an hour vigorously raking leaves in the yard, and then did some additional small-weights on my arms last night before bed (am trying to see if building up muscle in my arms and shoulders will get rid of the pain) … these may have contributed to my muscle stress today.

  4. Yesterday was great! I had an early meeting to attend at church, so I grabbed a banana and some graham crackers on the way out. I started my morning off with a Magnesium pill (Magnesium Citrate+Calcium Citrate), and 500mg of L-gluconate.

    Most of the day I had NO heartburn, later in the evening I had some, but not after eating a grilled-cheese sandwich for lunch and two bowls of cabbage/potato+bacon soup my wife made for dinner. The heartburn didn’t happen until a few hours later, about 20 minutes after eating a fat-free fudgesicle with my daughter.

    The remainder of the evening, I simply drank a large glass of water when heartburn came on – something which had never worked previously! I also used maybe 3 DGL (licorice) tablets over the course of the evening through early this morning.

    Side effects (maybe)?: I’d fallen asleep around 1:30 am on the sofa, and my wife woke me up to come to bed. I felt so incredibly warm and relaxed that it was difficult to drag myself to my room. This may be a side-effect of the magnesium (had 3 yesterday, totaling 300mg – still under the RDA), the banana and the potato soup (both good sources of potassium). I don’t know if this is a “bad” side effect. I’ve noticed my tremors are mostly gone and I can make fluid motions with my arms without the jagged jerking (“staggering”) that I’d suffered from for the past few years.

    My shoulders (along the back in an inverted “V” under shoulder blades) are aching and weak today, and I feel tired … but I have to wonder if that is due to sitting in a small chair with no arm room (my shoulders were wider than the armrests and I was wedged between other people) for four hours is to blame … or raking the other day … or sleeping on the sofa …
    with the tiredness related to the two sleeping periods (1:30-3:00, 3:30-6:30) this morning, or the cold I’ve had since Friday.

    For breakfast today I had egg-burritos (flour tortilla) with alfalfa sprouts about an hour ago, and still feel fine.

    It is frustrating eating these strange meals … I love to cook (and am pretty good at it), but being limited to certain foods & trying to add certain nutrients into my diet has been a real challenge, especially where taste is concerned!

    Though I’ve introduced a few spices and a little more protein/fats into the diet, it’s still a “no/as low as possible” restriction on saturated & trans fats, cholesterol, sodium, sugars, processed foods and additives. When I have had to add spices to make things more palatable, I’ve used things like “garlic powder” (instead of “garlic salt”), smaller than usual amounts of fresh garlic, and plain, non-fat yogurt.

  5. things are getting better!

    made some chicken soup last night (Chicken, carrots, celery, cabbage, onions, garlic, black pepper, oilive oil, butter) and it didn’t hurt (well, other than a tiny amount of burning for a moment or two about 20 min later) …

    have been “juicing” to get more Vitamin A (eyes are no longer dry all the time, night vision improving a little – hadn’t realized how bad it was!) … the juice is mostly carrots with a couple apples tossed in, I add 4 to 8 oz of Aloe juice, and some filtered water to mellow it out. I realized last night that the cantaloupe I’d added the other day had made the juice more palatable and left a pleasant “cool and clean” feeling after drinking it … without the melon, the drink is kind of gross.

    have continued magnesium (400mg a day) supplements, am no longer using any OTC meds (not having to supplement a Zantac on occasion anymore), am starting back on Niacin (250mg) and Fish Oil (3000mg), and am testing to see if I’m right about “more water = less muscle pain”.

    DGL tablets have been my “emergency relief”, and I am taking those infrequently.

    I think today is the 17th day of being Prilosec-free. I’ve dropped about 33 lbs since my first attempts to escape the drug around four months ago (still losing about 1.5 lbs a day), and other than some bouts of muscle strain/weakness/pain, I feel better. My mind is clearing up, and as I introduce more vitamins/nutritious foods into my diet, I can easily observe some of the results, sometimes realizing I’d had additional “symptoms” that I hadn’t even realized might be related.

    I am supposing that my body had not been absorbing most nutrients with enough efficiency because of the effects of Prilosec, and I was essentially “starving” while putting on weight. I still haven’t been able to go to a doctor, but when I do I want to make sure my heart is ok & have a blood test to see if there are any lingering deficiencies. I’m also hoping this business with my liver and spleen has got better.

  6. I keep jinxing myself! After talking about how my pain was less frequent, I went to bed with no pain. I even woke up with no pain, and ate breakfast with no pain. About 5 hours after waking, I decided to have a diet shake (which usually cause me some pain), and thought all was well until about 40 minutes later when I was hit with pretty fierce heartburn and reflux. I ended up taking a Zantac.

    On the plus side, however, I realized while setting up my kids’ bunkbed that the weakness in my fingers and wrists which had prevented me from using a screw driver or hammering nails (either would exhaust me) was no longer there! I’d dealt with that pain/weakness for over three years, and had completely grown used to it.

    I still have a lot of back/shoulder pain today, however.

  7. I haven’t been updating as frequently because there haven’t been that many dramatic changes.

    I started getting a little too anxious to eat “normal” foods, and that caused a couple days of heartburn that each required one Zantac 150 (which is good, actually, since previously two of them wouldn’t have kept me from pain), and since then have gone back to a more cautious diet. Currently my “meds” are a couple of Licorice (DGL) tablets, 3 Magnesium (100mg Mag-citrate + calcium) tablets, a Centrum Multi-vitamin, acidophilus (usually probiotic yogurt), L-glutamine, and 2000mg fish oil a day, with a 250mg niacin every few days. I’ve aso begun using Papaya tablets “as needed” for minor flare ups after meals.

    I’ve been making a lot of chicken+cabbage soup, adding other things (kidney beans or lentils, potatoes, carrots, onion and garlic, spinach, etc), and that honestly is pretty filling, isn’t slowing me down too much from losing weight, and i think (based on experimenting with and without) the extra protein in chicken is helping my muscles not ache & be sore so much. When i don’t eat chicken for a couple days, a lot of my pains come back.

    Also in the current diet: bananas, a lot of graham crackers, Silk (Soymilk) eggnog, eggs, spinach salads, McDonalds grilled chicken club sandwiches (have to remove the bacon because it hurts otherwise, but am surprised the tomatoes don’t), cantaloupe, Baked “southwest ranch” Lays(?) potato chips (BBQ has more sodium and seems to contribute to heartburn). I do not drink regular (cow’s) milk, soda, or any alcoholic beverages, but have been ok with small milkshakes (there’s a local place that makes pumpkin spice w/ clove shakes, and those burn going down, but don’t have the later effect that others do), my “Vitamin A juice” (cantaloupe, carrots, aloe juice, apples), and water. I can also drink “low carb” slimfast shakes, but the regular kind cause incredible pain within about 20 minutes from drinking them. I have maybe one of these every other day.

    As of today I’d lost about 38lbs since June/July. The weight loss has slowed down to a little over 1 lb/week, but I’ve been eating a lot more and that’s probably why.

    The only bad things that have been going on are: I was getting some bad shoulder pain again the other day, but it’s mostly gone away. I’ve also had unexplained flashes of anger/stress, causing my resting heartrate to suddenly go to over 100 bpm. This seems to be related to flare ups of heartburn, but I’ve also been under a little more stress than normal.

    In my reading, I recently learned that Thiamin might improve some of my ailments (mental “fog”, heartburn, heartrate, muscle pain), so I am going to try to include more thiamin in my diet or get a supplemtne that will add a significant amount.

    That reminds me … it might look like I am taking a ton of vitamins & other supplements, but those that I am taking I’ve looked into to ensure I am not exceeding the safe level for each vitamin/mineral, that these things don’t interact (and cancel themselves out or cause harm), and that I am only beginning new ones in small doses, temporarily stopping some others that might interfere with my ability to determine whether or not they are “helping”. I’ve had some bad experiences with some OTCs/supplements aside from Prilosec (kidney stones, ears ringing, etc), and i don’t want to make things worse for myself!

    Whether related to heartburn, prilosec side effects of something else, I still don’t tolerate sugar very well. If I eat/drink more than 12g in one sitting (which means half a bottle of juice or a single cookie!), my extremeties and face lose sensation, I feel dis-coordinated, and I feel “sick” (unable to pinpoint exactly what/how). Fortunately, avoiding sugar mostly doesn’t seem to be a problem … and I’ve made cakes and breads with non-sugar sweetener that have NOT had this problem. I also have a sensitivity to sodium, and eating high-sodium foods causes me big increases in blood pressure … so I’ve had to stick to foods without a lot of flavor (by American standards, anyway). The good thing about this … is that once these types of foods are out of your diet for a few weeks, foods that used to seem “bland” begin to taste good. The bad thing is that my family (who pretty much devour sugar and sodium on a regular basis) think everything i cook is bland.

  8. Thanksgiving went great! I’d been worried about eating, but was able to over-eat (oops!), and had minimal discomfort. I DID resort to one Zantac later in the evening, but otherwise things were great.

    Am still taking between 300 and 400mg of magnesium daily, a”B-complex” vitamin (am trying out thiamine), fish oil, and using DGL licorice and Papaya chewables in place of Tums/Rolaids.

    Have also been snacking a lot on graham crackers, and no longer eat red meat or pork.

  9. This study by German researchers included more than 4,000 patients who underwent medical and oral health examinations and TMJ pain assessments, and completed a psychiatric risk factor questionnaire. The researchers found that depressive symptoms were more strongly related to TMJ pain than to muscle pain, while anxiety symptoms were linked with muscle pain. The findings were published in a recent online issue of The Journal of Pain.”

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  10. I have read recently that Prilosec can cause low b12 levels, which can cause all sorts of problems like tingling fingers, fatigue, confusion, balance issues and even psychosis. B12 is a commonly low nutrient and some people have pernicious anemia (inherent lack of absorption of b12). I have had good results with it, and I have been on Prilosec for about 15 years and really cannot eliminate it (i am researching regarding memory and mild fatigue, and stumbled on your story). If you haven’t tried it yet, it may really help. Best wishes, Mike

  11. Any updates on your condition. I am trying to figure out a way to deal with my GERD without the long term use of PPIs.

    • I’m not a doctor, so what worked for me may not be at all appropriate for others, but I’m doing great!
      I lost a little weight, I started cooking rather than grazing at the convenience store, and I’ve stayed off the PPIs. I still take a magnesium supplement (I think there may be some long-term damage), but I’m doing well.

  12. I have been on ppi’s for almost 20 years, I’m 36 and have been have been experiencing similar symptoms that you have described above. I have been off prilosec for three days now and am having muscle pain and weakness in my arms and legs (this muscle weakness hit me in the end October of 2013 and has come and gone). My Dr. thinks this muscle pain and weakness and fatigue is prilosec related. I would really like to interact with you on this if possible.


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