When YOU are the ".001% of Patients" Who Develops the Serious Medication Side- Effect
My journey through being a cardiology nurse and having the "rare but serious" cardiac side effect from a medication.
When YOU are the “.001% of Patients” Who Develops The Serious Medication Side-Effect
I am a critical care trained Registered Nurse turned patient who developed one of those RARE side-effects that can happen when you take any medication. The only medical condition I have is Irritable Bowel Syndrome, (the “C” kind…. constipation). As with all chronic illnesses, you can be doing great, cruising along at a steady state, good symptom management when BAM…..there it is again! In my case, severe left upper quadrant abdominal pain with constipation, crazy bloating (“no I am not 5 months pregnant...it’s gas!”), nausea, reflux and eventual diarrhea after you eat, drink and do everything in your power just to poop. There, I said it…..this whole medical mess I found myself in was because of poop, or lack of it!
So, my story starts like this…...I have been seeing the same gastroenterologist for years. He, very literally, knows me inside and out. He knows what I eat that agrees with me and what blows me up like a balloon. We have worked over the years to get my ever-evolving symptoms under control. With Irritable Bowel Syndrome, it’s a matter of managing flares and keeping things moving along as smoothly as possible. I had been “stable” taking a few different medications that control contributing factors of IBS-C for a few years until about six months ago.
My stress level went up tenfold in a short time. We decided to build a new home, so we bought land, sold our current home very quickly, (less than 24 hrs), moved into a very small rental and 2 storage units with three kids and two cats, started a new job, adopted a puppy, mother-in-law got very sick postoperatively…...all in about 2 months time. Needless to say, the stress affected my IBS and I was in a constant flare. After cleared CT scans, a colonoscopy, and multiple dietary changes we started to adjust medications.
With adjusting these medications you go through many unwanted side effects for a few weeks. Fatigue, dry mouth, nausea, dizziness, etc., many of the “typical” side effects mentioned on the TV commercials, magazine ads, and medication information inserts. These side effects are usually temporary resolving over time as your body adjusts. After trying a few “lesser of the evil” medications, no luck, still struggling. So we finally decided to wean off one class of drugs as we introduce and increase another. This is where it starts to go bad.
Within the first few weeks on this new medication, I knew it did not agree with me. I was not just moody, but in full meltdown mode if the computer did not boot up fast enough. Crying in the corner on the floor. Every time I had to say no to my kids, (you guess by their ages 11, 9, and 7 how often in a given day that happens), I would convince myself that I was the worst mom ever. Crying so hard like I scarred them for life because they could not have a can of Dr. Pepper at 8 pm! My brain knew what was rational but my emotions told me another story and one that was difficult to forgive myself for. So I made an appointment with the GI specialist to discuss this and work on getting me off this medication.
During the day or two before my appointment, I felt palpitations here and there. They were significant enough to take my breath away but did not last long. I mentioned it to my husband and we chalked it up to stress or caffeine. The day of my appointment, I was feeling more frequent palpitations so I asked when my vital signs were being checked what my heart rate was. The nurse very casually said 120 bpm. She said that it had been up as high as 140 but settled in around 120. I was not nervous or anxious at that time but was surprised and concerned. I am a runner and am athletic. My normal resting heart rate in between 50 and 60 bpm.
I mentioned this to the physician when I was seen and he agreed with all of the symptoms I was having on this particular drug that gradual weaning off was the answer and tapering up another class of drugs that will hopefully give me and my colon the desired effect of peace and calm. That night I was aware of my more frequent high heart rate. By the next morning, I was about to start a cycling class and I checked my heart rate prior….135. Being a bit stubborn and a lot stupid, I took the class anyway. I went about class as intensely as I would normally. My heart rate went up as high as usual. I did not feel dizzy or severely short of breath. Stress test complete! I passed, except after class, my rate stayed above 140 and I had the shortness of breath and now a sense of someone sitting on my chest. That day my husband and I met to choose the tile for the new house we are building and I felt worse. As far as I could tell my heart rate was never going down. I had more episodes of pressure, shortness of breath and a few dizzy spells. It was now time to go to the hospital.
At the hospital, I got the typical cardiac work up. Besides being tachycardic in 150’s, I had a negative cardiac profile as well as electrolytes, thyroid, and CBC. I had a positive D-Dimer (who doesn’t) which started the workup for pulmonary embolism. After scans, that too was cleared from my differential list. Despite bolus’, maintenance intravenous fluids, and antibiotics (incidental finding of urinary tract infection) my heart rate would not budge. So ultimately, I was able to discharge after four days with exactly the same symptoms as I came in with. The only answer was that I was having a reaction to the medication. This particular medication causes irregular tachyarrhythmias and widened QT intervals in a very small percentage of the population…….me. Lucky me!
So today is, as I type this, the last day of my wean from this medication. I am still having intermittent bursts of tachycardia, but much less frequent. I am looking forward to being done with this mess. We never know when starting a new medication how our body will respond. With different hormone levels, metabolisms, and system functions even that .001% of medication reaction possibilities can happen to you. Be aware of your body. Know your baseline. Report any changes from that baseline to your prescribing doctor, and definitely go to the hospital for any potentially life threatening symptoms. I am glad that I have maintained an active lifestyle, so that my heart was able to tolerate the sustained high heart rate for so long without damage. All this trouble just because of poop! Who’d have thought!Last edit by Joe V on Oct 20, '17
My name is Sarah Matacale RN, BSN, CCS. I am a nurse, wife, and mom to 3 kids that are a beautiful mess. I love to write stories from my real life that are too crazy to not to be true.
Joined Jan '17; Posts: 32; Likes: 187.Sep 26, '17I am sorry to hear that this happened to you and must have been very scary for you.
I have been in the same situation. I started taking a muscle relaxant and in 48 hours I went into anaphylactic shock and spent time in the hospital as a result. This was back in the day where we didn't have all the wonderful electronic items to look up medications. Well, after going over what all I had eaten and anything that was new, my doctor finally found out the there was a very small percent of people allergic to it.
Now I tend to get monthly massages so as to never find myself in that situation again.Sep 27, '17Wow. Thanks for sharing, Sarah. I'm so glad to hear that you are doing better now and will hopefully feel fully normal very soon!Sep 27, '17I get the rare side effects, too, from pretty much any medication I'm on. Currently having issues with med-induced bronchospasm.Sep 27, '17I've been through that as well. I was started on Lisinopril for HTN, and at each repeat visit, my blood pressure was HIGHER rather than lower. So they'd up the dose. After about six weeks of that, I found myself sitting at the computer having chest pain, so short of breath I could get only 2-3 words out at a time, a back ache and a "toothache". (Jaw pain.) Rather than do anything smart like going to ER, I called my PCP. I spent the day in his office (part of a large, multi-disciplinary clinic) getting CXR, ECG, PFTs, VQ scan, etc. In the end, the conclusion was that the Lisinopril caused it. I was sent home to "just let it wear off." It seemed like it took FOREVER to wear off . . . probably was only a week and a half. It was horrible!
Lisinopril is one of the most commonly prescribed medications for HTN, and every time I go to a new PCP or start on a new insurance plan, I have to explain the whole episode all over again. Most PCPs have "never heard of that," and have to look it up. Worse, the medication I'm currently on is hideously expensive, not covered under most insurance plans without an exception and only recently is available in generic form (also >$400/month).
The whole situation sucks, and I feel for the OP.Sep 27, '17Sometimes I think about the people I have seen in the burn center with TENS or SJS that happened as a reaction to antibiotics or seizure meds. Scary stuff.Sep 28, '17I can certainly understand your frustration dealing with IBS. What functional medical practitioners have found is that medication is rarely the answer. It is usually life style that needs to be addressed and most of the time it is diet. Poor or improper nutrition, according to functional medicine, is the root cause of most of our chronic diseases. Don't confuse functional medicine with integrative medicine. Functional medicine finds the root cause of the disease and fixes the problem so you no longer have the disease.Sep 28, '17I developed renal tubular acidosis with topamax and spent 9 months and hundreds of dollars, in and out of specialist appointments, saying over and over again "it has to be the topamax" and no one believed me.
I was started on topamax in December of 2009 d/t worsening headaches (hx of a large brain tumor that was fully resected in 2003). When I saw my PCP in April of 2010, I asked if we should check labs since I was on medication for the first time in years. My K+ came back at 3.2 She told me to increase my K+ containing foods and come back in a week for repeat labs. Repeat labs, K+ 3.1 Started on 10 mEq KCl/day- no improvement. 20 mEq KCl/day- no improvement, 20 mEq KCl BID- no improvement, 20 mEq KCl TID, K+ finally reaches 3.5. In the mean time I was referred to a Nephrologist. He wanted to do a 24 hr urine collection but also wanted to re-check labs off the KCl. Stop taking it, my K+ immediately drops back to 3.1. I asked everyone over and over and over again if it was the Topamax- PCP, Pharmacist, Nephrologist, and everyone said "no, topamax doesn't cause hypokalemia." Original Nephrologist went so far as to suggest that there was a psych component to what was going on with me. He misdiagnosed me as not having diabetes insipidus before having all the test results back, too. Once that diagnosis was made, I was started on DDAVP but it did nothing to improve my potassium levels.
In all these months, everyone had also ignored the fact that my serum bicarb was hanging out in the 18-20 range. When I pointed that out in October, my Nephrologist said "well, you could have Renal Tubular Acidosis, I haven't ruled that out." Around November, a doctor I knew in my personal life (a pediatric Rheumatologist at that), ran a lit search and came to me with an article that said that Topamax can cause renal tubular acidosis. At this point, I'd had enough of the original Nephrologist and decided it was time to seek a second opinion. My PCP tried to dissuade me from doing that but I insisted. I went for a consult, new Nephrologist repeated the 24 hour urine collection, made the diagnosis of renal tubular acidosis and agreed that Topamax was the likely cause. He instructed my Neurologist to have me discontinue it and said I could stop taking the potassium at that time as well. 7 days after I stopped taking the Topamax (and the KCl), my K+ level off supplements was 3.9- more normal than it had ever been in the last 9 months on supplements. It was so aggravating to find out that I'd been right all along at that point.Sep 29, '17It is terrible to have a med reaction. I was NKDA until I started Lamictal. Within a week I developed Stevens-Johnson Syndrome (1 in 6 million). I thought I was going to die- horrible rash, visual disturbance, and burns to ALL mucosal tissue. I made the mistake of trying to eat a little banana frozen yoghurt- big mistake as any little bit of potassium aggravated the burns horrendously. I lost 20lbs in 2 weeks. Luckily I didn't need hospitalization but I was at the ER 3 times in a week for IV fluids. The rash eventually faded after a year, and now I have to avoid aspirin, sulfa drugs and any multi use anti-convulsants.Sep 29, '17I took topamax back when it was a fairly new drug. I took 500mg a day. Shortly after, I started getting kidney stones. I had read that topamax could cause them. I brought it up to my neurologist who looked it up and said less than 1% of people have had that. Remember it was a new drug. I said what if I was one of those. He refused to take me off.
I found a new neurologist who agreed and took me off. I still had to pass 3 more kidney stones after I was off the meds as they were in my kidneys. I passed my last one when I was 7 months pregnant with my child all those years ago. I spent 5 days in L&D for that one.
Now, it's listed as a more common side effect. I've never had another kidney stone since stopping that med.
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