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I approached my internist about beginning the use of high blood pressure medication during our brief stay at home in late April of 2018. What was expected to be a simple, straightforward process, became a near-life shattering journey. 

The side effects started little more than an hour after the first dose and only got worse. My internist was furious and labeled me as having a psychogenic reaction—that I’d programmed my body to react negatively to the medication and also to make my blood pressure rise instead of fall on the medications.  I left for Europe in a drug haze, shamed, humiliated, and depressed. My new summer project overlaid on planned hiking and biking was to restore my self-esteem and to finesse the drugs so as to achieve blood pressure control with tolerable side-effects.

About a month after we left the States in early May for England, we arrived in the Italian Alps. The first day on the mountain trails, I discovered that in addition to suffering from headaches, dizziness, sleep disruption, hot flashes, swollen joints, and GI distress, that I’d lost my high cardio-vascular (CV) output capacity. We estimated that my loss was as much as 30% and I felt miserable, especially while exerting. 

Three weeks later when I reconnected with my touring bike that had been in storage for 9 months, I was heartbroken to discover that my poor performance was even more disastrous from the saddle: I could only pedal 100-200’ uphill without having to stop to breath. We’re not talking elevation gain, that’s distance on the asphalt with an unloaded bike. Clearly, it would be impossible for me to go on our 6 week bike and hike tour with 50 pounds of gear added to the bike.

One Problem Was Easy To Solve
It took no time at all for Bill to propose the easy, though expensive, solution to my biking problem, which was to buy an ebike for me. We’d watched the explosion of their popularity in Europe for years and I’d always thought the most clever use of them was in equalizing the performance between a pair of riders: give the weaker, or perhaps less skilled, rider an ebike and keep the more capable companion on a standard bike. Suddenly, that description fit us.

It only took a couple of days for me to swallow my pride and say “Yes” to Bill’s offer. Yet another blow to my ego and self-esteem on top of the verbal assault from my internist. There was the end of my 17 year identity as a loaded, international,  cyclotourist. There it was, another step down the path of age-related disability. As painful as it was, it was the obvious adult response to the situation and I was grateful for the option. 

Bill loved trains, planes, and cars as a kid and those fascinations had been directed into trailers, bikes, and computers in recent years, so he already had been casually researching ebikes.  He catapulted his ebike education to the next level that evening after we got off the trail on which we'd extensively discussed my performance failures. 

The next morning, we rode the bus to Bolzano, Italy, the nearest city, and put a deposit down on 2 bikes at a chain sporting goods store. The bikes would be ready for us in 3 days. Had we weeks and not days to select bikes, we’d have gone to Germany to buy higher quality bikes better suited to touring from one of the large dealers specializing in ebikes—Bill had already picked out the top 2 dealers and a bike model. 

Using My Recent History to Define the Performance Problem
One Main Medication Issue
Bill had nicely covered for my sudden, medication-induced performance failure when it came to biking with the ebike purchase, but I’d need a medical solution to get me back up to speed on the trails. We were baffled by my sudden athletic disability and didn’t find any leads from online searching.  

It took doing a favorite, all-day hike out of Selva, Italy to Punta Puez peak to start teasing apart the details of my abrupt loss of athletic performance on my new high blood pressure (HBP) medications. 

In the first days after discovering the problem, I had thought that the medication had 2 big negative effects on my performance: clobbering my altitude tolerance and my cardio-vascular output. But on this hike to Puez, it became perfectly clear that elevation was only a very small part of the performance issue, a secondary issue, if an issue at all. 

The most important negative effect was that the meds denied me ready access to my high output performance capacity. The cardiovascular support for my burst strength was decimated, though we didn’t know why. Even slowly walking up a couple of flights of stairs was agony, triggered huffing and puffing, and required several minutes to recover. We had loved that we recovered from any maximal output from hiking or biking within a minute or two, but that ‘we’ was now only Bill. I had to settle for not being able to speak for minutes while I sat to catch my breath after slowly ascending a couple flights stairs.
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Bill’s time out for a cappuccino gave me a head start to Punta Puez.

Any exertion was so discouraging to me that I relied on Bill to set the pace, our pace, my old pace. Based on how I felt even on gentle grades, I would have quickly turned around and retired for the day if left to my sense of what was an appropriate level of exertion. Never in my life had I needed to be so miserable for so many hours to do familiar activities. But I was determined to retain as much of my athletic capacity as I could and since I couldn't move as fast as before, I accepted a high level of discomfort when doing anything as my new normal.

Dispatching Altitude As An Issue
I was perfectly comfortable sitting around at 9,500’ on top of Punta Puez while enjoying the stunning, 360 degree view of the Italian Dolomites. In contrast, when Bill was in the throes of his altitude intolerance, he was extremely distressed even being at 7,000’ and we always had to drop into the 6,000’ range for him to be comfortable enough to eat lunch. We hadn’t hiked above 8,800’ since I began the antihypertensive meds in late April, so being totally at ease at 9,500’ was telling. Clearly elevation alone wasn’t the issue. At most, it amplified my new, underlying output issue.

This hike, during which we accumulated 5,400’ of gain, largely without any descending on the way up, had 2 protracted, steep ascents. It took me about an hour to arrive at the relatively level terrain after each challenging segment. After the first one, Bill commented “It looks like you’ve finally warmed up,” which indeed felt like the case. The second one was to the 9,500’ peak where I noticed that my rate of gain finally hit 36’/minute in the last minutes of the ascent, a typical, pre-drug level of output for me under those conditions. But like earlier in the hike, it had taken me almost an hour of climbing to achieve that pace. Curiously, at the lower elevations earlier in the effort, my ascension rate was as low as 9’/minute. It should have been the other way around: I should have been faster when at the lower altitude.

Finally, It All  Made Sense
The lights came on later when revisiting the day on Punta Puez: I now clearly needed a full hour to ‘flip-over’ into my usual high output mode. In the past, at the start of a cycling or hiking day, I liked 30-40” to fully warm-up, to really settle-in to a sustainable half or all day pace. But even if I wasn’t fully warmed up when hiking, I could hit rates of gain in the 30’s without much trouble and I could grind up a steep hill on my bike if needed. 

Worse yet, now if I stopped more than a few minutes, or if the terrain leveled out, I lost my capacity to see those typical rates of gain in the 30’s. In the past, as long as I kept moving at any speed, I’d seemingly retain my full warm-up for hours.  And warming up after lunch would only take a few minutes, even if going uphill. But now if my level of effort plummeted, I’d then have to huff and puff for another hour to retrieve my ascending capacity. Curiously, I didn’t recall having this difficulty at sea level when on the English Coast Path and using the HBP medications. In hindsight, my drug levels probably hadn’t peaked then, so I didn’t experience the performance drag. 

I then thought back to my complete failure to go up the steep hill in the first minutes on our bikes when we arrived in Selva a week earlier—the failure that signaled that I wouldn’t be able to do the 6 week bike and hike tour Bill had planned for us. We turned on to a 15% grade after 5 minutes on the unloaded bikes, something I should have been able to do, and I couldn’t. I could pedal for a minute or so, then stopped to catch my breath, then tried it again. The power burst I needed, the one I had when we rode a few months ago, was completely gone. The prolonged warm-up experience on the steep hiking pitches of Punta Puez helped explain this startling new difficulty on the bike.

It all made perfect sense now. Somehow, the HBP meds were denying me access to my peak output, whether needed for a minute or for hours, until I tried performing at that level for an hour. Then, for who knows why, something rather rapidly flipped over, and I could enjoy near-normal speed and power without the new agony. If my output dropped down, like when doing a long traverse, I would have to start all over again. It was baffling, but a recurring pattern.

New Perspective
With this new perspective, this new model of only being able to perform at a high level of effort after attempting strenuous activity for an hour, I could now understand my opposing experiences during our first 2 hikes in the Dolomites.

I was dumbfounded when I read my webpage account of us zooming up to the Principe hut for Bill’s cappuccino, an episode during which I clearly had had no trouble. I’d been in the lead until I broke through the snow into a deep hole and then Bill and another man caught up with me. The day before however, I remember looking at a knoll 30’ above us and wondered if I could rally to make it up for our picnic stop. 

These 2 days reflected this same new performance pattern: the Principe hike had been essentially ‘all up’ from the start, with a very steep finish, whereas the day before, there had been a long traverse and several minutes spent ‘shopping’ for our lunch spot. I was comfortable and performed well to Principe hut because I had the long sustained warm-up and was ‘flipped over’ when it became very steep. The day before, I never flipped over because the short duration of each of the multiple high intensity demands.

How To Start Reversing My Performance Shortfall: Hit The Books
Medication Characteristics: Learning About Medication Actions Was The Key
Two days prior to our all-day romp to Punta Puez, on our way down the mountain on the bus to Bolzano to select our new e bikes, I stumbled upon an entry in my massive collection of electronic files of any information I might possibly use someday. In a cryptic little note from years ago, I had detailed that some calcium channel blocker (CCB) antihypertensives affect both blood flow to the heart and to the vascular system whereas ACE inhibitors only affect the vascular system. I knew nothing about those drugs at the time but I’d dutifully documented the tidbit. Like with other obscure notes I’ve made over the years, this one’s day to shine had arrived.

Even before the insights from summiting Punta Puez, we realized while reading the entry on the bus that moving away from CCB’s should be my ticket back to easier access to my athletic capacity because of the drug actions. I was currently taking an herbal product (Carditone) that was purportedly like an ACE inhibitor, but I knew I was having CCB-like side-effects in me, which were the hot flashes, brain fog, and overnight swelling around my joints. If the Carditone had those CCB-like side effects, perhaps it also had a negative cardiac effect as well.

I’d been on a CCB twice, but briefly each time. I didn’t know if that particular CCB affected my cardiac performance because I was immobilized by hot flashes. Unfortunately, this Carditone herbal product for which I had little information, was the only of my 3 medications that I could tolerate for enough days to have had this athletic output problem. The dizziness and brain fog of the other 2 would have kept me off the trails entirely.

This was pivotal piece of information: ACE inhibitors actions were limited to the vascular system whereas at least some the CCBs acted on both the heart and vascular systems. If I could taper my amount of Carditone, the CCB-like effects should diminish and my performance should improve, which was an extremely exciting prospect. By the time we reached this point of clarity, I had been taking the Carditone alone for 3 weeks. Surely it was the culprit and at last we had a plausible trigger for my debilitating side effects. We didn’t understand the mechanism of the cardiac effect of the Carditone at all, but we did have enough clarity to make a plan.

Now the dreaded ACE inhibitor, lisinopril, that I had been so miserable on, looked like the best drug for me, just like my internist had said. Perhaps I could tolerate very small amounts of the lisinopril, which had only vascular effects. If that didn’t work, perhaps when home in 3 months a new doctor would prescribe a CCB I could tolerate that didn’t have cardiac effects. But for now, the challenge would continue to be balancing the side effects of the lisinopril and Carditone while achieving high blood pressure control.

I couldn’t tolerate the 10 mg starting dose of my first medication, the lisinopril, my ACE inhibitor, so we settled on me taking 1/4 tablet of it as a substitute for one of my daily 1/4 tablets of the herbal product. I’d initially started on the Carditone at 1 tablet a day, then went to two 1/2 tablets, and finally to 2 quarter tablets during the day and one 1/2 tab at bedtime, to reduce the side effects of it. Spreading the drug intake through the day definitely helped me feel better—a clumsy form of time released formulations. Bill suggested only using the lisinopril substitution every other day for the first week so as to let my steady-state levels of it build very slowly.

Further reading was even more damning of my internist: he had blatantly dismissed my history of being sensitive to medications in general by starting me on the higher of the 2 recommended starting doses of the ACE inhibitor. According to the manufacturer’s online patient information, my chronic reduced kidney function would have been an indication for starting me on half that dose. But instead, when I had side effects, rather than reduce the dose, he labeled me as having a psychogenic reaction, declaring that I’d programmed my body to react negatively to the medication. Contrary to what he told me, ALL of my side effects were listed as “common” by the manufacturer.

Steady State & Maximal Therapeutic Effect
Apparently ‘steady-state’ of a drug is generally achieved in 5 times the half life of the drug. Half life of drugs, radioactive materials, and other things is the time required for the substance of interest to decrease by 1/2. 

So, with the half life of my ACE inhibitor being 12.6 hours, then the steady state would be achieved in 2.6 days. Steady state is the point at which you are getting the maximum level of the drug. Curiously though, the lisinopril manufacturer indicated that it may take 2-4 weeks to assess if the desired effects (decreased blood pressure) can be reached on a given dose. This is a huge difference between steady state and what is termed "maximal therapeutic effect.” The difference is likely due to the complex cascade of reactions that occur when the body is being forced into a new equilibrium from the recurring, outside influence of a drug. That maximal therapeutic window of 2-4 weeks gave me more guidance, such as "don’t make big increases in the drug any more often than every 2-4 weeks".

It seemed that my angry and impatient internist was falling into the trap of confusing steady state and maximal therapeutic effect. In his mind, I failed on the lisinopril because I didn’t achieve the maximal therapeutic effect in 6 days when the manufacturer’s expectation was that 2 to 4 weeks was required. 

In contrast to the ACE inhibitor lisinopril with a half life of 12.6 hours, the amlodipine, the CCB I briefly used, has a half life of 30-50 hours. Splitting the difference between these 2 numbers for the CCB and using 40 hours for the half life, then the steady state occurs at about 8 days. Again, my internist foolishly declared “double your dose” on the CCB after 5 days, which wasn’t enough time to achieve steady state or maximal therapeutic effect. I’m so glad I didn’t follow his reckless orders….

Drug Peaks
Another helpful concept to understand is ‘drug peak’.  The time at which a drug peaks is different than its half life and different than its steady state. For example, the time at which the lisinopril level peaks is about 6.5 hours after taking it though its half life is 12.6 hours. Like with drug half lives, this number is easy to find online. Usually the peak is the time at which the  side effects are most intense. I would generally wake up each night about the time my given medication was peaking. (Worth noting: some antibiotics are most effective at their peak.)

This discussion is really getting into the weeds, but if you find yourself in a bind with a physician over medication issues, you may need to understand your drug at this level of detail to advocate for yourself. Pursuing this track with these medications was life-altering for me. Knowing more of these details allowed me to make informed decisions regarding how long to wait before making a change in my medications and to improve my guess about the nature of the next change to make.

Turning Point: The Power of Information
Looking back, that ancient, cryptic note in my electronic files about some CCB’s having both cardiac and vascular effects triggered a dramatic turning point in my quest for sustainable drug combination to control my hypertension. Reading about the specific actions of ACE inhibitors and CCBs hadn’t helped us understand my performance issue but ‘cardiac effects’ pulsed in neon in my little note. Clearly I needed to move away from any drug with a cardio effect and favor products with only a vascular effect, like the lisinopril that I’d done so poorly on before.

This was an exciting couple of weeks during which we were gaining insights and new information every few days. The next “Eureka!" moment was finally learning the common name of the well-studied active ingredient in the Carditone, which is reserpine. 

The Carditone label only stated the root from which its active ingredient was extracted, which had been a deadend. And probably for legal reasons, the Carditone manufacturer’s website didn’t even list HBP as an indication for their product. But with sensing empowerment from knowing more about these 3 drugs I’d tried, I dug deeper.  By stumbling upon the pharmaceutical name of this ancient drug used for decades in western medicine, we were able to access a wealth of information about it and Bill kept on reading. 

Not technically a CCB, reserpine's wide range of actions could possibly account for my severe performance deficit. Its effects were broad and potentially nasty, so now the race to transition off of the Carditone intensified. It had been invaluable in providing me with a starter drug but we were convinced that I’d be better off of it in the long term, if possible, for a number of reasons. 

With this new information, Bill encouraged me to go back to pill cutting with 2 goals. One goal was restart the lisinopril but at 25% of my original initial dose to determine if if I could tolerate any amount of it. That would be taking 1/4 of my tiny 10 mg tablets once a day. I went a bit further and crushed those 1/4 tablets so I could divide them into 2 piles, which would allow me to spread my intake of it by hours to soften the side effects even more. In a few weeks, I was splitting those 1/4 tablet piles into 4 doses and only taking 3 of them per day.

Since my HBP wasn’t in crisis mode (even though I was) I could take the time to fiddle a bit. We decided that anytime I increased my use of lisinopril, that I would decrease my Carditone. Rather than closely monitoring my BP, which changed slowly because of that 2-4 week window to achieve the ‘maximal therapeutic effect', I would be adjusting my doses in response to symptoms only.

This was another empowering bit of clarity: focus exclusively on side effects in the short term. It didn’t matter what my BP readings were if I couldn’t tolerate the drug, so I shouldn’t even worry about the level of control at this stage. I had plenty of side effects to track, including headache, dizziness, GI distress, severe performance drag, joint swelling, and disturbed sleep. Recording doses and side effects became increasingly important, increasingly time consuming.

Credibility Boost
Learning that the active ingredient in Carditone was the original, botanical form a mainstream drug in western medicine was a huge relief for several reasons. I was concerned that if I ended up in an ER and they asked what meds I was taking, that I would draw nothing but frowns if I said “Carditone”. Saying it was equivalent to 10 mg of lisinopril wouldn’t get me off the hook either.  Being able to say “I take the equivalent of 0.05mg of reserpine in a botanical formulation” would be information that they could use. And after my education about peaks and half-lives, it was interesting to note that my Carditone product initially peaked in 1-2 hours, which was much faster than the other 2 drugs but its effects can linger for many weeks because it irreversibly binds to tissues. That was a prized piece of information: both my side effects and blood pressure control would change very slowly on the Carditone.

Non-Pharmaceutical Strategies
In addition to juggling these potent drugs, I also threw everything else I had waiting in the wings into my problem solving frenzy once we had a clearer plan.

My Portland naturopath (ND) had suggested that I try Acetyl CH to quiet my nervous system. “Wrap it up” was my response. That was back in May and I had decided to test it in mid-summer when I presumed that I’d be settled into a HBP medication routine. I was far from have a fixed regime, but when I gave up on methodically testing each product and went for the fast track approach, I started taking the Acetyl CH as well.

While in Italy, I read online that the nutritional supplement CoQ10 could lower blood pressure in some, up to 17 points on the systolic (the upper number), so I told “Wrap it up.” I’d taken it years ago as a ‘nice to do’ and had no ill effects, so felt it was worth a try.

About the same time that I started the supplements, I had 2 phone sessions with a hypnotherapist. He didn’t seem interested in addressing the ‘Is it a psychogenic issue or not’ and instead targeted 2 issues that came up in during his assessment process. He also gave me follow-up exercises.

I recalled that we had 15 year-old guided visualization audio in our audio library that was designed to lower BP, so I began using it. I added in a breathing pattern that another practitioner at home had recommended. I also used my 20 minute-long BP reading sittings as do-it-yourself biofeedback sessions. “No rock unturned” was my strategy and I’d collected a pile of rocks. 

Lessons Learned To Date For Dealing with Medication Problems
Decide if time is on your side. For me, with anti-hypertensives, it was; had it been antibiotics, it would not have been. My decision to start the HBP meds was arbitrary—it coincided with our brief stay at home. My internist gave up on me and a first drug after 6 days, another after 5 days. I was content to take months, if need be, to get it right. I was going overseas for 4 months, so I had time to experiment without confrontation with my doctor. And since I had my own wrist monitor that I’d calibrated against my arm cuff monitor and the doctor’s office device, I had the only tool needed to evaluate my progress.

Press hard to get your physician to collaborate with you to find an intermediate solution to your side effect problems, if at all possible. Consider engaging a new physician as a longer term solution if your current one is inflexible. My internist was worse than inflexible but fortunately he was retiring early. If my new physician in the same clinic is equally adversarial, I’ll find a new clinic.

If you educate yourself about the technical issues like drug half life, steady state, maximal therapeutic dose, and drug peaks of the medications you are taking, you might stimulate more help.

Use your network to find other providers, other strategies, to find answers to your problem.

My habit of tracking my BP readings for 20 years, of documenting our sports activities, and writing about our journeys came together nicely to almost pinpoint to the day when I began having performance issues on the Carditone. It was only when I reviewed all 3 records together that I saw the patterns and sub-patterns that eventually yielded greater clarity.

I took copious notes about every drug and dose change I made, as well as side effects and the timing of the reactions. Those details were invaluable in guiding the fine-tuning of my medication adjustments over the months, especially when it became more confusing.

Over the summer, Bill purchased an expensive graphing program to give any new providers an almost instantaneous look at my blood pressure history. While he was working on the tedious data entry project, I was putting important historical dates in the database and making a chart of my side effects from the different doses of the 3 drugs.

Expecting Success
Pushing on, not giving up, looking under every stone, expecting to succeed were all crucial for spurring me to find a solution. Attitude is everything; confidence is critical for success in all things. Like I typically do with tough problems, I endlessly looked for new information, other strategies, other providers.

July 24, 2018: A Day to Celebrate! 
After a discouraging day of poor athletic performance on our way to Bovec, Slovenia with my new ebike and getting the predictably late start on our hike the following day, I received 2 happy surprises. This was 3 months after taking my first anti-hypertensive pills, 3 weeks after 2 telephone hypnotherapy sessions and starting the nutritional supplements  CoQ10 and Acetyl CH; and 2 weeks after substituting a small amount of lisinopril for Carditone, all attempts to control my HBP and side effects.

I was again feeling like a pile of poo from headaches and dizziness after taking my morning anti-hypertensive pills so Bill suggested I do a quick check of my BP just to make sure it wasn’t too low (wishful thinking). I was shocked to discover that it was finally perfect by my standards, so I announced that I was further delaying our hike to do a proper 20 minute testing regime of sitting quietly for 10 minutes and checking my BP readings over the next 10 minutes. The averaged results were a stunning: 134/74 compared with 160-170’s over 90’s I’d been reaching in early May at home.

When we finally got out the door for a short hike at 11:30, we started straight up the fall line into the Julian Alps in the heat and extreme humidity.  Six days prior in Cortina on a gently graded rails-to-trails path, I worked hard to keep up a 3 mph pace with a light pack and finally gave up—it was too hard. But on this day, right out of the box, just like the pre-HBP medication days, I could hit it in the hills. 

I felt like there was still more vigor to be regained, but I could stay on Bill’s heels. I was breathing harder than he was but he is more heat tolerant than I am and I’d no doubt de-conditioned a bit. We were both thrilled. Had I not still been encumbered by the headache and dizziness, I would have been joyous but that emotion could not cut through the drug-induced brain fog.

Feeling horrible and not achieving HBP control for 3 months had been very discouraging but at least now I had put a lid my HBP. Now I had at least transient BP control and I had restored my performance capacity by reducing the Carditione. My greatest fear had been put to rest—the fear that I’d never regain my vigor. I knew all too well that very nasty drug side effects can be irreversible, forever, even if the drug is discontinued. I was deeply relieved that irreversibility wasn’t yet an issue for me.

With my CV output restored, the other side effects were more sharply in my sights. I had yet another new idea for diminishing my hours of daily illness: I would take 1/4 of each of my 2 meds 4 times per day. Maybe my brain could tolerate that amount of interference. I started the new regime with dosage #3 for the day when we returned from our hike. 

And indeed, taking 8 small doses a day, something about every 2+ hours helped. I was rolling from one minor headache to the next, but I wasn't flattened by any of them, I could always see through the fog. Three months to the day since this hideous journey of controlling my high blood pressure began, I suddenly seemed to be gaining some control over the process.
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My pill cutting ‘before’ and ‘after’ products before  I was taking micro-doses.

Next up would be staying on these quantities of the 2 medications for another 2 weeks, for a total of 4 weeks, and tracking both my BP and side effects. It seemed that I was in a sustainable place and if I was lucky, my body would accommodate to these drugs and  I’d no longer have any headaches, dizziness, nausea, or chest pain.

August 8, 2018
I was again suddenly doing so much better. I could tell when we rode our bikes into Heiligenblüt, Austria the previous Friday that even though it was the 5th riding day in a row, that I was much more capable. I finally felt strong and lively on the bike, not just surviving. We hiked or biked daily after that and I was sometimes ahead of Bill, which was a stunning change. 

We were saying “Barb is back!” It had taken 3 1/2 months of fiddling with my medications to arrive at this point. I’d been taking the drugs every 2.5 hours, 8 times a day, to smooth out the headaches and dizziness. The tiny amounts of the drugs were enough to make my BP ‘acceptable’ though not ideal. Good enough for the summer, however. 

Getting my athletic capacity back required decreasing the Carditone by one half and then waiting a full month for enough of it to clear from my system to feel the full performance improvement. Simultaneously, I added a little bit of a 2nd drug, lisinopril, but after 3 weeks, I could tell that I was getting dizzy from it. A very different class of drug, it only took reducing the dose of it for 36 hours before I felt better. 

A patient shouldn’t have to know this much! It required learning about drug half lives, biphasic drug peaks, and ‘maximal therapeutic effect’ to figure this all out. It was such a relief to feel almost fully normal again. 

But the Roller Coaster Ride Continued
I thought I had nailed it for a drug combination and potency that would allow me to coast for the next month until we returned home but then, 5 days into my celebration, I crashed again.

It was on a hiking day when the “I can’t breath" side effect hit when we turned around on our ‘out and back’ hike above Heiligenblut. I was so affected that I couldn’t even catch my breath while sitting. At one rest stop, I asked Bill to take my pack off of me, remove my 2 jackets, then put 1 jacket and my pack back on me. Organizing my thoughts and moving my arms that much, even in sitting, was overwhelming. I pressed on, my breathing difficulties and cognitive dysfunction slowly improved, and we made it to the lift 30 minutes before closing and beat the thunderstorm home. It was close. I didn’t take any more Carditone that day and I did fine the next day on my old routine. 
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Not where I wanted to be when an episode of severe abdominal cramping or dizziness hit.

But on the day after that, by the time we were heading out of Lienz, Austria on our loaded bikes, I was struggling to breath again. I was totally out of breath on an almost flat, paved bike path at only 2,000’ elevation. The ebike came to the rescue. Bill pedaled under his own power and I pedaled with assist. Again, I skipped the rest of the Carditione for the day and began a new regime of 25% less medication. It had taken about 3 weeks for what looked like the perfect dose to reveal itself as too much. Three weeks seemed to be my magic number: after 3 weeks on a tiny dose of lisinopril, I triggered dizziness while lying in bed by turning my head.

A few days later, I tried reintroducing amlodipine, a CCB that I abandoned in early May because of severe flushing and brain fog. I took 1/12th of my internist’s original prescribed amount and lost another day to headache and nearly being immobilized by it. Two days later, I tried 1/48th of my internist’s original prescribed amount. The headache was tolerable: it only lasted a couple of hours and my thinking dysfunction was about the same length of time. The over stimulation of my bowels was still there, but not quite as intrusive. I considered that a success and hoped that if I continued with that tiny amount, that it would both be sustainable and the discomfort would lessen. It only took a couple of days to discover that I needed to split even that little bit into morning and afternoon doses.

Yet Another Drama With My Doc
In mid-August, about 3 months into my self-directed treatment, I honored the request of my internist to send ‘a weeks worth of readings’ through the clinic’s patient portal. I didn’t anticipate receiving any direct benefit from doing so but followed through on the commitment I’d made. And since my credibility was probably in the gutter based on his diagnosis of a ‘pyschogenic response’ that was presumably in my chart, responding  might get me off to a better start with my new internist in September.

Predictably, a cryptic scolding was the reply. My numbers weren’t low enough, even though I had achieved our agreed upon goal of ‘putting a lid on them’ by getting them into the 140’s/80’s. And equally predictably, sharing my micro-doses with him provoked that I was taking insufficient medication. Of course, if he had looked beyond his beliefs, he would have seen that the small doses were being quite effective, that I’d achieved the summer target for my readings with them.

It was the response I anticipated from him if I got any reply, though it was still a bit disturbing. Fortunately, between the time I sent off my numbers to him and when he replied, Bill found a very supportive news story and then the full medical article behind the shorter report.

Here are few of my favorite quotes from that research:
..There has in the past been an emphasis – and even a blame culture – on proving that uncontrolled blood pressure is down to patients either forgetting or not wanting to take their tablets. 
..Many of our patients have reported negative experiences with their doctors after complaining about drug side effects. 
..We understand that some patients feel forced to cease their treatment due to how wretched it makes them feel.
..Some patients have even contemplated suicide rather than continue with medications that cause severe adverse effects – that is how serious this issue is.
..Around half of patients with hypertension stop taking their medication within 12 months of being prescribed antihypertensive drugs, and severe intolerance is found in 10 per cent of patients referred to the Barts Health Blood Pressure Clinic.
….anti-hypertensive medication side effects are common and can be very debilitating, causing severe impact on quality of life.
..We also urge clinicians to be more sympathetic towards their patients who report drug side effects…. 

Should you be interested, here is the link to the news story from August 2015:
And the link to the medical publication of the same research:

This British clinic’s physicians were doing exactly what Bill and I were doing, using multiple medications and reducing the doses until the side effects were tolerable. They didn’t focus on the BP readings, but on the side effects, like I had been doing. Their program often took 6 months, but the strategy worked in patients previously considered as having uncontrollable hypertension. Given that I was at the 3 and a half month point and had achieved greater control than they attained at 6 months, we congratulated ourselves on our successful approach that mirrored theirs even though I still needed to diminish my side effects further.

I went to bed that night a bit ruffled by the ongoing disapproval of my physician and buoyed by the extremely validating medical study. In the morning, I received a reply from my doctor’s nurse—I’d decided to interrupt his shell game by asking for a target BP number. Curiously, it was a number he’d never revealed to me. She reported it was 130/80. Bill and I had quite the chuckle when later that morning my average of 7 readings was 129/80. I wasn’t able to retain that level of control because I needed to reduce my drug levels even more to make their use sustainable, but nonetheless, I had achieved it on the micro-doses he declared ineffective. Once again, we believed that the usual doses of the usual medications made me sick, which is why my BP remained high early on, though that wasn’t a possibility in my internist’s model.

Another bit of validating news came in a brief report in a medical newsletter. Surprise, surprise: there was a new study showing that using small amounts of 3 anti-hypertensives achieved better BP control in patients compared with using 1 or 2 drugs.

The ancient joke of “The operation was a success; the patient died” came to mind during this latest brouhaha. Indeed, my doctor was exhibiting the classic behavior that other MDs mock internists for, which is focusing on the numbers and ignoring the patient before them. He’d demonstrated that attitude with me as well: when I sat in a chair across from him in May, immobilized in mind and body by my newest medication's side effects, he snapped “Double it!” It was an easy instruction to ignore and we’d now proved that it was exactly the wrong prescription for me. In addition to small amounts of 2 other drugs, I was currently taking 1/48th of the single dose of that particular medication he wanted me to double.

Four Months On
We were both thrilled that my BP was now at the target level but my side effects were not yet acceptable. I hadn’t felt well since I began the drugs even though I was artfully navigating around the side effects to survive. 

I’d reintroduced the amlodipine, the calcium channel blocker, at 1/48th of my internist’s prescribed starting dose 10 days earlier and the worst of the GI pain had slackened. But my brain processing time was slowed for hours with each dose. I was managing on the trails but decided it was unacceptable in traffic. On our next biking day in a few days, I’d take a ‘safety break’ by skipping one of 2 doses for the day. And I’d do the same when we returned home: I would skip the morning dose for at least the next month because I’d be driving almost every day.  Better to let my BP rise than cause a traffic accident. I’m sure that, what would then be my ex-internist, would flip knowing my plan, but the emphasis at that point would be on the ‘ex-‘. 

After deciding that I’d soon reduce my amlodipine to 1 does a day, I functionally crashed on the trail that same day from sudden shortness of breath. The pattern was clear: the brain fog was the amlodipine, the shortness of breath was from the Carditone. I would again cut my dose of the Carditone, going from initially taking 1 tablet a day to taking 1/4 tablet per day, splitting it into 2 daily intakes to smooth out the other side effects. It was both highly educational and highly disappointing that at 4 months on, I was still making dose adjustments, that I was still overwhelmed by multiple side effects, and that too much time every day was devoted to crushing and parsing-out pill dust into little piles and documenting side effects.

It’s A Draw
Exactly 4 months after beginning this medication odyssey, I felt totally defeated. I took my last dose forever of amlodipine the day before. It was only going to be a break from the morning dose so my mental processing would be sufficient to keep me safe in traffic on our last bike ride, but by morning I decided I would stop taking the drug altogether. I’d ranged from un-well to miserable for up to 8 hours after both of my 2 doses, which didn’t leave me much time each day with a brain. Taking the meds at bedtime guaranteed a lousy night’s sleep, so that option was off the table.

In anticipation of the bike ride over the pass, I’d also done a 4 day dry-out from my ever-dwindling dose of Carditone because I’d had yet another ‘performance failure’ on the trail during which I just couldn’t breath well enough. Even with an ebike, I wouldn’t make it up the pass with a 30% performance deficit with my 50 lb load on my 55 lb bike.

The lisiniopril, the ACE inhibitor, my new great hope for a maintenance drug was the only drug I wasn’t changing, but that was before I had a total melt down. My first dose of it in the morning had irritated my gut and left me feeling a bit off, but I successfully made our short, steep ride, which was a mere 6 miles up to the pass and 6 more down. Once in our apartment for the day, I took my 2nd of 3 scheduled doses and within an hour, I could barely function.

My side effects were reminiscent of my first days on five times more of the drug. I abruptly felt 20 years older. I couldn’t lift my feet to walk and dragged my shoes over the pavement to move at all on our way back from the food market. I walked as close as I could to walls, posts, and sidewalk cafe tables in case I tumbled. Four months ago, I sat slumped against a wall and moved around our apartment by crawling because I felt too unsteady to stand. Four months ago, I hung my head over the toilet bowl several times for the seemingly imminent vomiting. This day in Italy on a micro-dose I was lucky: I was only contending with severe bloating and malaise.

Miserable the rest of the day, I was totally demoralized. I’d gone above and beyond all reasonable efforts to find a  way to finesse these drugs to control my hypertension and had failed. In the haze of pain and depression, the 2 choices before me were to live life on a couch, from either a drug stupor or from a stroke. 

When the worst of my symptoms retreated that day, I could cheer my successes. I had indeed sacrificed much of the joy of my summer abroad by diligently testing the 3 drugs and I was now very clear about 2 things.

I had totally discredited my internist’s diagnosis of having orchestrated a psychogenic reaction by my body to both not tolerate the drugs and to make my BP go up on them. On the contrary, I’d used micro-doses and brought my BP down to his target numbers. My body was responding to the drugs, but too much, not too little. Mine wasn’t ‘resistant’ HBP and I wasn’t a nut case.

I was also perfectly clear that I could not tolerate the CCB amlodipine. I tried it twice on the prescribed 5 mg dose and once on my micro-dose of 0.1 mg. The side-effects on the  micro-dose were the same from Day 1 until the last day, Day 13, but got worse with time. I’d planned to test it for 3 weeks, but I was so sick and the side effects hadn’t eased a bit in that time, so I gave up.

Closing This Chapter
Darn it anyway, this wasn’t supposed to be a journey and it was supposed to have a happy ending. The plan was see my internist in April, get a prescription, take the pill, watch my blood pressure descend back to normal, and live happily ever after.

Instead, I’ll be heading home from Europe monitoring the effects of newly reduced dose of my remaining 1 drug, Carditione. I’ll be taking half of what I was using less than a month ago and will likely only know in yet another month if I can tolerate that amount. I’ll keep checking my BP with my wrist monitor and hope that my BP defies logic and stays in the acceptable range. I will hope that my other adjunct therapies, like visualizations and supplements, will pick-up the slack in controlling my hypertension.

Once back home for 2 weeks, I’ll benefit from new inputs. I’ll cross my fingers and hope that my new internist at the old clinic will be a friend instead of a foe. I hope that she’ll look at my charts and graphs and conclude that though she’s never seen anything like this before, that she will be collaborative. Bill’s ongoing research triggered a new hypothesis to test, to try drugs designed to pass the blood brain barrier. I’ll spare you those details, but perhaps she’ll grant my wish for a prescription in that drug class. If I’m lucky, she’ll employ her creatively to improve my progress.

In just the last couple of days, I’ve added 2 appointments to my tight calendar with yet another naturopath. I was in search of a Chinese medicine practitioner in hopes of using Chinese herbs to calm my hypertension. It was Bill’s idea, which seemed brilliant: use a subtle art on a patient who needs subtle therapy. This naturopath with broad background came highly recommended, so I’m hanging even more hope on that approach. And in support of the Chinese medicine strategy, I’ve already started using several acupressure points daily.

And I’ll follow-up on the cardiology ND's suggestion to do a 6-week Acetyl CH test. I don’t really know what is involved except that I purchase 2 products and increase the amount I take every 2 weeks, and I am guaranteed to be sick by the end of the protocol. Hardly something to be enthused about but it is a diagnostic tool that might identify an underlying problem, which is enticing.

Hope, hope, hope. Hope is my most powerful tool right now. I’ve learned more about pharmacokinetics than I’d ever wanted to know; I can now identify which of 3 drugs I have on board by their different side effects, including subtle differences in the headaches they produce; and I know that I can still achieve normal blood pressure.  I am not where I need to be but I continue to hope that hope will get me there.

And I hope that some readers will find a sense of empowerment in my journey, that they will see that the impenetrable barriers to good health before them may have some back doors to be exploited. No doubt they too will have to devote an excessive amount of time and energy and delve into overwhelming details, but what’s the alternative? Good luck to you all in your quest to be well, to feel your best.