Tuesday, May 11, 2010

Week 19 Recap: The Road Ahead

The week started out with more trembling and fluttering than I care to deal with, particularly because it worsened at night and often lasted till morning. If you’ve been following this blog, then you know that I found a possible connection between these bizarre symptoms and PPI (Prilosec) withdrawal (or any drug withdrawal, for that matter). Once I figured this out, I knew it would pass and determined not to take any more drugs for anything, if it can be helped.

I saw a dermatologist during the week with regard to the rash on my right wrist/forearm which I have had for almost six years now (possible dermatitis herpetiformis), as well as the rash near my left elbow which showed up about a year ago. She did not say what she thought of either rash, other than the one on my right wrist is clearly quite aged. She proceeded to take a biopsy of each, and I left her office with an unexpected six stitches, three in each arm. It will be interesting to see what she finds, if anything.

Toward the end of the week the night-time trembles began to die down in intensity, and other than being extremely busy sewing costumes for an upcoming talent show in which my dancing girls were participating, there were no new symptoms or return of any old symptoms. In spite of the exhaustion that comes from very little sleep and too much to do, it was a good week.

I tried to maintain my “physical therapy” even during this very busy week because it is the one thing I am not yet willing to trade-off for more time. I have to take care of my body, and the physical exercise is probably the biggest and best thing I can do right now. All of my treadmill walks went very well (walking 18.8 miles), and I feel my heart has finally reached a significant point of healing. Though I still get a heart palpitation about once a week or so, I have had none during any treadmill walks, nor have I had any chest pain of any kind.

I was not as successful in maintaining Pilates during the week (only 30 minutes), probably because it is usually the form of exercise I do last (in the evening) and all my evenings were absorbed in sewing and fitting costumes. I did, however, keep up the weight-bearing exercises on the Pilates Reformer (110 minutes)—which I know will continue to benefit my bones.

ODD THINGS THIS WEEK:
  • Stomach ache again followed by same symptoms as usual-- kind of like a huge caffeine buzz-- nervousness and inner trembling.
  • Discovered vertical rows of tiny bumps on my fingernails, most noticeable on my ring fingers. They are not the vertical ridges (which I also have), but tiny oblong bumps. Since they run the entire length of the nail I am guessing they have been there for a while. The dermatologist did not seem to know what they were and was unsuccessful at getting a good photograph of them.
  • During one night, I felt strong muscle tremors in neck-- so much so that it woke me up. I remember making a mental note of it.

From where I stand now, the road ahead appears to be a good one.  I am not even so sure I want to "test" myself with gluten because I am doing so much better now, even though it has been a long time coming.  Yet I know the dreaded "test" must probably be done at some point in the future so I have a certain answer, one way or the other, as to what was/is making me sick, and so I know how to react in the future should I be "contaminated" in any way.

I can only say that prior to last year, I had never been sensitive to any foods, nor any medications whether it be over-the-counter or prescription.  I do know that I suffered a traumatic event when my husband suffered a massive heart attack, and though it was the hardest thing I had ever had to deal with from all aspects of my life up until then, I felt it was behind us.  And then there was the added stress of the "heart attack fallout" -- no money, no way to pay the bills, and watching my credit that I had worked so hard to build take a nosedive.  As if that wasn't enough, dealing with my husband and his erratic mood swings was apparently more than my body could take.  I felt I was on the verge of a major breakdown almost every week... turns out, my body did breakdown-- it just wasn't mental, it was physical.

All these events may have very well served as the catalyst, the trigger that set off the illness that slammed me down late last fall.  Interestingly, celiac can be triggered by just such events.  Though some people will not believe I have celiac, and though I have tried to dismiss it myself, I can't -- no matter how badly I want to -- and so life moves on.

Thursday, May 6, 2010

Omeprazole (Prilosec) Withdrawal

Writing often helps me to sort out my thoughts.  It has been that way for my entire life.  If I want to figure something out, all I need to do is start writing.  And true to form, while writing my weekly recap it suddenly occurred to me that the strange stomach aches and trembling I had been feeling for the past couple of weeks might be connected to my cutting back on Prilosec, as per doctor's orders.

I checked back in my Food/Symptom journal and sure enough, the trembling began within a few days of cutting my daily Prilosec dosage in half, from 40 mg/day, to 20 mg/day.  The last time I experienced trembling of the same sort was when I stopped taking clonazepam.  The trembling lasted about a couple weeks.  Could it be that my body simply "withdraws" from chemicals in this bizarre way?  Could a simple, over-the-counter drug have this kind of effect on the body?  I had to check it out.

Doing the usual internet search (Google), I was amazed to find so much information available about Prilosec withdrawal.  Why hadn't anyone warned me that it was possible and what I might expect?

According to many websites, the side effects for medications are also the side effects of withdrawal.  The particular Prilosec I have been taking is omeprazole, delayed-release capsules.  Prilosec is a proton-pump-inhibitor (PPI).

So what is a Proton Pump Inhibitor (PPI)?  Without getting into too much detail, the stomach produces acid (mainly hydrochloric acid) in order to break down our food so it can be digested.  This acid is released through proton pumps which allow the chemical to pass into the stomach.  Sometimes the stomach produces too much acid, which may spill into the esophagus and cause heart burn or acid reflux. The proton pump inhibitor (PPI) is supposed to inhibit the body's ability to produce stomach acid.

Omeprazole (brand name Prilosec) "blocks the final step of acid production.... Animal studies indicate that after rapid disappearance from plasma, omeprazole can be found within the gastric mucosa for a day or more" (i.e., the effects linger on) (PharmaInfo).

According to the July 1, 2009 edition of Family Practice News, after 8 weeks on a PPI, patients ended up with rebound heartburn, acid regurgitation, and dyspepsia (upset stomach or indigestion).  The article "PPI Withdrawal Triggers Acid Hypersecretion" by Mary Ann Moon points out that "Rebound symptoms were clinically significant in the study subjects, causing mild to moderate discomfort for at least 2 weeks after withdrawal of daily PPI therapy--a 'remarkable' finding given that 40% of the study subjects had never experienced such symptoms before, wrote Dr. Reimer of the department of medical gastroenterology at Copenhagen University and her associates."


Symptoms of PPI withdrawal may include:
  • Rebound acid hypersecretion within two weeks of withdrawal
  • Heartburn
  • Acid reguritation
  • Dyspepsia

Interestingly, the study (double-blind, placebo-controlled design, including blinded withdrawal of PPI) found that "greater than 40% of healthy volunteers who have never been bothered by heartburn, acid regurgitation, or dyspepsia, develop such symptoms in the weeks after cessation of PPI" (Gastroenterology, boldface added). 

I am not the only one to believe PPIs are greatly over-prescribed.  I have seen it in my friends, and I have seen it in my own family:  Feeling a little indigestion?  Let's put you on a PPI and dismiss it as that.  As what??  My daughter was seen for an "nervous stomach" by a doctor while she was attending college.  The doctor said "You must have a hiatal hernia" and prescribed Prilosec, and never saw her again.  That was three years ago!  She has been on Prilosec ever since, never knowing whether she actually had a hiatal hernia or not.  When she stopped the Prilosec (expensive on a young adult's budget), she developed all the symptoms of withdrawal. 

The internet abounds with forums and patient discussion groups regarding PPIs.  Perusing a handful of these websites, I found some patient-oriented information with regard to PPI withdrawal:
  • Taper off slowly to reduce stomach pain and hypersecretion of stomach acid
  • Take Rolaids Antacid tablets as needed during withdrawal
  • pH levels may be out of whack
  • Food allergies and sensitivities may crop up
  • May experience loss of appetite
  • Trembling, shaking, "buzz"
  • Troubles with Vitamin D and calcium defiencies to the extent of severe bone density problems
  • Risk factor for Clostridium difficile -associated diarrhea

Incidentally, it is a known fact that "long-term use of proton pump inhibitors increases the risk of hip fractures in adults over 50" (Ray Sahelian, MD, "Proton Pump Inhibitor Drug benefit and side effects, safety, danger and risk").

I'm not saying all doctors over-prescribe medications, but I do think that both sides of the equation carry some blame.  Most patients (particularly American patients) want a quick fix.  If they don't feel well, they go to the doctor and get something for it.  In an attempt to avoid expensive tests and follow-ups, many doctors will give the patient what he or she asks: a quick fix.  There are many more factors and sides to this ideology, but that is not my purpose in writing today.

I do have to say that I think there is a big gap between the pharmaceutical industry and patient knowledge.  Somewhere between those two points lies a gap that needs to be addressed and filled.  The pharmaceutical industry is getting far ahead of the medical industry and governing the direction which doctors should take. Shouldn't the medical industry govern the pharmaceutical industry, rather than the other way around?  Just my two-cents...

Recommended Further Reading:
http://download.journals.elsevierhealth.com/pdfs/journals/0016-5085/PIIS001650850900780X.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19362552

Monday, May 3, 2010

Week 18 Recap: Fine Tuning

Now that I am finally feeling like some healing is taking place in my body, it is time to start fine tuning and working on the last remaining “symptoms” that have either not been addressed or not completely gone away.

Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.

It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.

The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.

I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.

ODD THINGS THIS WEEK:
  • Felt some right-ear pain a couple of times during one night but didn’t happen again all week. Wondering if it has anything to do with being shocked by the treadmill (ear buds) several days ago.
All 17 miles of my treadmill walks this week were uneventful. In addition to treadmill walks, I worked out for 105 minutes with Pilates, and 100 minutes of weight-bearing exercises.

Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…