High Blood Pressure Treatment Fiasco (May-June 2018)
This is a bit of a self indulgent rant about a recent jam I got into with the medical system. I hope it gives voice to the unspoken frustration of others and provides assurance to them that they are not alone.
Taking Responsibility
It all started innocently enough. My blood pressure had been slowly rising for about 20 years (90/60 to 160’s/90’s) and one year ago it popped up and stayed up; it did so again 3 months later in the fall. Over the winter, I periodically checked it and decided to act even though my internist hadn’t. I decided to intervene this April.
For years, I’d hoped to avoid the control drugs because I usually discover almost all of the given side effects of any medication on my own. I generally do best on 1/2 to 2/3’s the regular dose of medications or anesthesia. And it also felt like a personal failing to have high blood pressure (HBP).
I’d been excessively diligent about all the lifestyle issues related to HBP but still had it. Over the winter, I made peace with my plight and accepted that it might be a genetic issue, even though my older brother had escaped. Later, I learned that HBP is also related to menopause and that by age 75, 80% of all women have HBP. But regardless of whether I was to blame or not, it was time confront the health issue and to lead, not follow; to set aside my childish pout and to deal with it as an adult.
I had made a special appointment with my internist for a few days after we arrived home from the SW in late April to start taking HBP medication. I brought BP numbers for almost 20 years with me to the appointment.
It seemed straight forward, but we did not get off to a good start. I wanted to discuss 3 lingering issues, the HBP being the important one, and he commented that the appointment wasn’t long enough. To the best of my understanding, it is Scheduling that is in control of appointment length, not the patient. He clearly wasn’t in a good mood; perhaps he had been on call all night. I did my best to manage the pacing and wrapped up all 3 issues in the allotted 15 minutes. I was out the door with little guidance about my new prescription but trusted the process.
I recently learned that my internist had just cut his schedule back to 3 days a week and would be retiring early, at the end of the year. Over the last couple of years, it had seemed that burn-out was taking its toll and I had to wonder if other factors had accelerated his exit; I wondered if his frustrations were spilling over into patient care—as in mine. But I was motivated. I wanted this to work. I was now 3 days into our 3 week stay before we flew to Europe for the summer and I needed this to quickly become a background issue.
Drug #1: Lisinopril (10mg)
"Playing dead to stay live" is a useful strategy for a number of mammals and I found labeling that approach to coping with the medication side effects with this ACE inhibitor during my first days helpful. At that point, any humor, even dark humor, was better than none at all.
The side effects of the lisinopril, the preferred, first-drug-to-try, started hitting in a little over an hour. Headaches and dizziness on Day 1 aged me by about 15 years: I was slowly shuffling and hanging on to walls in our apartment and railings in the stairwell to avoid face plants. Driving was out of the question.
Day 2 the “playing dead” strategy, as in minimal movement, especially of my head, became useful. After 3 hours of rolling stomach cramps and 2 episodes of nearly 'losing my cookies' that I hadn’t eaten, I decided I’d have to start carrying a barf bag with me after my weekend sequestration. Of course, by then, being dead, not just playing dead, was sounding more attractive.
I’m sure that many would have sensibly spent the day in bed but I feel less defeated out in the open spaces, even if I’m slumped against a wall, than being in bed. Crawling on my hands and knees was the safest way for me to move around our apartment for part of 2 days. At times like this, I always bolster myself by remembering that whatever I’m experiencing is nothing compared to what folks on chemo endure and that there is supposed to be a light at the end of my tunnel.
Fortunately, Day 3 that seemed poised to be a discovery day for yet another show-stopping side-effect, actually went better. I voluntarily delayed breakfast by 6 hours like I had been forced to do the day before. It was an easy decision to make because my first sips of water ballooned my belly. I was far from being well but it looked like I’d gotten over the hump for adjusting to the medication. To be safe, I spent another day indoors, literally laying low, hoping to find the person I left behind a few days ago.
Nut Case
After a rocky week on the lisinopril, my doctor changed my medication, angrily labeling me as having a psychogenic reaction to the medication that in his mind, had no side effects other than a dry cough. He believed that I’d programmed my body to reject the drugs because I didn’t want to go on them. Psychogenic is slightly different from psychosomatic, but they both put you in the same place. Pretty much any diagnosis that begins with “psycho-“ is a loser for the patient.
He was totally dismissive of all of my side effects and sternly said that they just don’t happen to anybody. However, the Mayo Clinic, the FDA, and others have long lists of side effects and my several bad reactions to this and my next medication were on these lists. I was suddenly in a terrible bind: my doctor was angry and he wasn’t playing straight with me. My presumed advocate was instead an adversary that couldn’t be trusted to tell the truth.
Not only was I feeling terrible, now my credibility and self esteem tanked. I now had 4 problems: high blood pressure, medication side effects, no professional support, and being dismissed as a nut case. Plus, I felt like I was being ‘gamed’ with no-win dialogues he was controlling.
He was right, I didn’t want to go on HBP meds for the rest of my life but I had made peace with the necessity of doing so months ago. And besides, who WANTS to go on medications? Wouldn’t one be classed a nut case if you said “Yippee, I’ve always wanted to take these meds!"
I had to wonder if this was a new opinion or if had he labeled me as a wing nut earlier in our 9 year relationship. When I first started with him as a patient, he strongly disapproved of my use of hormone replacement therapy (HRT) and sent me to another physician to continue my prescriptions. And annually for years, he would snipe at me for being on a double dose of HRT, which is what I still need. I shrugged it off, deciding he was ‘old school’ and didn’t believe that severe menopause problems were real. A couple of years ago he offered to take over the prescribing but I declined, siding with the OB/Gyn he had sent me to who had far more experience with, and respect for, the treatment.
I then thought back to 2012 when he prescribed high doses of ibuprofen for my ‘Joshua Knee’ which left me with permanent tinnitus (ringing in the ears). “Not possible” was his quip. “OK, then the tinnitus onset and ibuprofen use were correlated in time” I thought. I had decided to totally abstain from ibuprofen until the tinnitus resolved, which it never has. But when I asked him if I should resume using ibuprofen for my finger osteoarthritis or other issues, he advised not to. “Ummm. I’m crazy because my tinnitus should only be transient with ibuprofen usage but he doesn’t think I should use ibuprofen. Which is it? It seems he wants it both ways.”
Somewhere in there when discussing my HBP this April, he tossed in “It’s your ketogenic diet and high salt intake, that’s what’s giving you high blood pressure.” Another snipe, another lie, another manipulative game. He saw my numbers. My blood pressure had been rising for almost 20 years; I went keto 4 years ago; and my numbers jumped higher a year ago. His conclusion didn’t add up; it was just more convenient blame; another controlling attack.
More importantly, reducing salt intake usually only makes single-digit reductions in blood pressure and my upper number, the systolic, needed to drop by 30-40 points according to some, far out of the range of sodium's influence. Thank goodness I’d worked through and dispatched the self blame before raising my HBP issue with him because he was heaping it on me.
Drug 2: Amlodipine (5 mg)
Five days after being on the 2nd medication, amlodipine, a calcium channel blocker (CCB), he again chastised and blamed me, this time for making my blood pressure go up on the drug—based on the BP reading in his office. I comforted myself “He is retiring early, I’ll be leaving for the summer in a week, so this will be the abrupt end to our relationship."
While we talked, I was overtaken by a first, massive, medication-induced hot flash that lasted for about 4 hours. He noticed as my flushing spread and I commented “Oh, here it is, now I’m starting to have difficulty organizing my thoughts and with word finding” as I verbally stumbled. His mouth was agape while I explained that even with a double dose of HRT and without this HBP medication-induced hot flash, that I was currently sleeping with 3 fans running, including the small one inches from my head. I don’t think he ever believed that menopause systems were real and perhaps he still didn't.
His response to my latest side effect was “Double your dose.” “Really??” I thought. I had no intention of doing so but kept silent. I hadn't been able to start packing for our 4 months abroad because of the drug side effects and now the amplified hot flashes and brain fog made packing seem even riskier.
Again, I felt gamed. He stated that I was making my BP go up on this 2nd medication; it was my psychogenic response. But if he really believed that, wouldn’t it be malpractice to double my dose? Could it be that it was going up because I’d been continuously ill for 12 days? Could it be that 5 days on the medication was too soon to draw any conclusion?
When I inquired about other contributing issues, like my low kidney function, he shook his head “No.” Clearly in is mind, the only explanation for any issue I was having was my psychogenic reaction. Surprisingly, there was never any mention of a plan to deal with this new diagnosis of a psychogenic response. That absence suggested that he didn't really believe his own diagnosis, that he only enjoyed the control it handed to him. It seemed to be a gratifying, ironclad weapon to blame me for my poor response to HBP medications. His schedule was very tight because of recently cutting back to working 3 days a week and I was making it even tighter with these extra appointments squeezed into his lunch time.
After my disgust with his latest accusation diminished, I was intrigued by this interesting question of my BP going up on HBP meds—even though I thought it silly to label it as such so quickly. I wondered if rising BP was a known outcome of HBP medications, independent of psychogenic responses.
I did some online reading about that real phenomena, online ordered a blood test to rule-out a condition that can cause HBP medications to increase BP, and learned by the end of the week that I didn’t have that disease. But why wasn’t he pursuing other issues like this? It seemed too convenient, perhaps too much fun, to dismiss everything as psychogenic. Now, in his mind, not only was I to blame for having HBP, I was to blame for having side effects and for disabling the treatment.
The Knock-Out
At the end of my 3rd appointment, while my brain was fogging over with a massive hot flash, he set me up again. At the 2nd appointment, he’d asked me why I thought I was having side effects, which is when he lashed out with the psychogenic label after I answered his question. The first thing he said to me on my third appointment was “Why do you think your blood pressure is going up on medication?”
I decided that it was best to stop answering his questions that began with “Why do you think….?” I had foolishly taken them as authentic questions, that he was genuinely interested in my opinion. But I clearly had been duped. The requests for input were bait for the trap that he would close as soon as I answered; he instantly dismissed my replies as worthless, probably before I spoke. Now, at the end of this 3rd brief appointment, I recognized the tone he used for the set-ups when he asked “When are you leaving on Monday?”
I knew what was coming. He wanted me to detour to his office on our way to the airport for a 4th appointment, which would accomplish nothing. I would sit for who knows how long thinking about this delay, the nurse would take a BP reading, he would come into the room angry after again joking with the nurses in the hall, he’d humiliate me, and then I’d leave. It would be too late to do anything other than berate me. Even in the muddle of the flushing, I could see the bait. I could see that this round was only for gratifying his dark side, not for my care.
I carefully answered his exact question: “We are leaving at noon.” “What time is your flight?” he then asked. There it was: the trap. I dodged this specific question: “We are leaving to put our truck in storage at noon.” It was a true statement and there was no way I would reveal that our flight was at 5 pm. “Game over! The knock-out.” I shrieked inside, and he knew it. I was in control now. I wouldn’t have the opportunity to consult with him ever again and didn’t want to. Whatever his agenda had been, he was permanently off of my game board. I was free; I was on my own; I was in a better place; I had one less problem.
Right for the Wrong Reason or A New Low
The good news/bad news was that I had so much brain fog after that last appointment that I messed up my meds. For either 4 or 6 days, I’m not quite sure, I inadvertently switched back to my first med, the lisinopril, but at half of the original dose.
After picking up yet another prescription, Bill had suggested cutting the pills in half so I’d know if cutting them was really an option when mixing and matching drugs over the summer. I did cut a few, with half of each one disintegrating in the process. The thrifty side of me put the intact half pills in with the whole ones and I neatly placed the crumbs in a small dish, deciding I’d use them up before we left town. They were however the wrong drug and I was totally oblivious to that fact.
Worse yet, it took me over a week to notice the mistake. I merrily went along, taking the wrong drug at the reduced dose for days. Then in flight, again unwittingly, I switched back to the correct med that I’d previously set aside for our flight and the following day so that sleeplessness of overseas travel wouldn’t result in a medication error.
After we’d arrived in England and I’d cluelessly stumbled back to taking the correct drug, the 2nd one, the hot flashes returned. Only then did I recognize my series of errors. I was totally humiliated. I failed the test for assessing if seniors can live independently: “Can she manage her own medications?” “Nope.” I switched to the wrong drug at half of its prescribed dose, switched back to the correct drug, and didn’t even know it. It took side effects from restarting the 2nd drug to sort it all out. How shaming! I was totally demoralized. Now I was an incompetent nut case.
The good news was that even though I did not feel well, my thinking improved and I attributed it to finally adjusting to the drug, not from mistakenly taking a half dose. The timing however had been excellent for packing. I finally could think clearly enough to embark on packing for our flight. I later discovered that did make some annoying packing errors, but nothing insurmountable.
Drug #3
My original intent after I started having HBP medication side effects, was to leave town for the summer with 3 different products. Years ago I’d been told that unless you were obese and lost weight, that HBP was a 2 drug condition. My internist confirmed that it was fine to mix meds to dilute the side effects and based on my life experience, “3” was my usual number of desired options when problem solving. My internist denied my request for a 3rd drug to fiddle with, but luckily for me, I had been playing my own games.
The naturopath (NP) I’d been seeing since 2012 had urged me to see NP specializing in cardiology for over a year and I’d finally, coincidentally, relented. I’d set up 2 appointments with her when I’d booked the initial appointment with my internist and I had been seeing both during our brief stay.
She fortunately had a 3rd product, an herbal equivalent to my first prescription medication. She said they had the same action, the same side effects, and in her mind, were interchangeable, so it wasn’t a great 3rd product, but a third one nonetheless. In addition to dealing with the issues for which my primary NP had sent me to her, she answered all of my questions that the internist hadn’t had time for about HBP medications. So, I did leave town with my desired 3 treatments. My internist had left me feeling like I was alone in a dark box but the NP had given me a key that might possibly open a back door he did’t know about.
After discovering my multiple medication errors early in our trip, I decided to test my 3rd and last option, the NP’s over-the-counter Carditone herbal product. I was reserving it for later in the summer after I’d had a good run with each of the 2 prescriptions products but since they were both a hazard to my safety, I threw in the towel. I had just enough of the Carditone to test it at its lowest dose, 1 tablet a day, until our return home in September. I crossed my fingers that even though the NP said any side effects with it would match those of the lisinopril, that she was wrong. If it was no better, I’d be pill cutting in earnest, trying smaller amounts of 2 different drugs at a time.
My preliminary assessment was that the Carditone was indeed the key to the back door—the way out of this jam I was in with the best 2 HBP medications from my internist. I did experience mild side effects with it the first 2 weeks: a little headachy, a little dizzy, and a sense of being overly hot without the brain-crippling hot flashes. After 2 weeks, I felt on my way back to normal, though at a month I began having GI distress and attributed my new pattern of sleep disruptions to the medication. It was far from perfect but it was tolerable and did appear to be putting a lid on my HBP. I might need to increase my dose in September to achieve better control, but at least I had a drug I could work with.
As crazy as it seems, it is challenging for me to get accurate BP readings. My systolic frequently varies 15-20 points when taking readings over a 10 minute period. I aim to sit quietly for 10 minutes like my internist recommended, then take 5 to 6 readings over about 10 minutes. My BP spikes with noise, so I need to be in a setting with a minimum of horn honking, sirens, and other danger alerts to which my overly active surveillance system reacts. And since the best readings aren’t to be taken after eating, exercising, or a hot shower or bath, I have to wait for a rest day or relative rest day. And to make it a little more complicated, it looked like my BP increased when we start sleeping at higher elevations. There were no quick and easy answers on this journey.
The Plan for September
Nut Case
When I see my new doctor at the same clinic in the fall, I will outright ask her if the diagnosis of "psychogenic reaction" was noted on my chart or any comment that would similarly undermine my credibility. I need to know. I won’t leave that diagnosis behind if I change doctors or clinics because the new ones will ask to have my chart transferred. I need to know if I will be branded as a nut case the rest of my life and do what I can to navigate around that.
Hypnotherapist
Before we flew to England in mid-May, I touched base with a hypnotherapist who was confident that she could deal with my psychogenic reaction to HBP meds, if it existed, and also considered reducing my blood pressure a possible outcome. I was thrilled to finally feel some professional support. But of course, revealing that I’d used a hypnotherapist for either or both of these issues to an MD could further anchor my diagnosis as a nut case. If I do see her and she does dispatch my HBP, I’ll probably not share that with an MD. Any questions about “Why do you think your HBP disappeared?" will be answered with “I took care of it in my own way.”
Making My Case
Bill and I agreed that concisely presenting my HBP history to my next and future doctors needed to be improved. At my request, Bill spent hours looking for a combination of software products to customize a database that would graphically present my almost 20 years of data. A graphical presentation would more quickly make the case about my HBP being independent of my ketogenic diet as well as highlight the abrupt increases over the last year. Hopefully that would increase my flagging credibility a tad.
Re-Evaluating Disclosure
I’ve sought to be fully disclosing in the face of using parallel treatment systems. I’ve always told the NP and MD what I’m doing with the other. I will disclose that I’m using an over the counter HBP product to my internist when I honor his request to send some BP readings to him over the summer. But I suspect that being honest with the internist about seeing an NP for the last 6 years added evidence to his nut case diagnosis. I certainly got beat up for revealing that I use NP services when I had an endoscopy by someone other than my usual GI doctor. One of my summer projects is to re-evaluate my ‘full disclosure’ policy and to consider be more armored in the beginning of the next relationship to maintain my credibility, if it still exists.
Disengage?
And “Should I disengage a bit from the medical system?” is another question. We can order our own labs now to track the wellness issues we care about; many of the screening procedures like PAPs and mammograms are not longer supported by the research; and we don’t really get much from annual visits. Our main need for a primary care physician is if something more catastrophic happens or one of us needs to be hospitalized. It’s important to have an established relationship for those eventualities but for me, the price of doing so was feeling questionably high. My first career was in health care and it is now very odd to be alienated from it. This option of being a bit more detached from medical care is another issue to contemplate over the summer.
Bullying
I’ve been too slow to fire employees and service providers in the past and this was another good lesson on the importance of not making that mistake in the future, especially with health care providers. This situation with my internist degraded so quickly—over about 2 weeks--that there wasn’t a realistic possibility of changing doctors. BUT ending the relationship was clearly was the right solution and I’m not sure that I would have done that in the fall if he hadn’t already been on his way out the door. Note to self: Don’t hesitate to fire if it’s not going well.
By definition, bullying occurs when the victim feels that there is no way out. I need to be vigilant that should I feel bullied again, to implement an escape route as quickly as possible, to not make excuses for the situation or consider it too much of a nuisance to confront it.
The Way Forward
Aging has its challenges and friction like this with my internist hadn’t been one of my top concerns, but it certainly is now. Being alert, being willing to cut-and-run when the relationship isn’t right, is now on my radar for managing my health care. It’s a huge disappointment, but there is a lot about aging that’s disappointing and that catches one off guard.
Surviving vs Thriving
At the end of June when I finished writing this piece, I thought the worst of this HBP treatment journey was behind me, but I was wrong. Dealing with my internist was over but I had new problems demanding resolution.
I’d carefully been dismissing my recent hiking difficulties as due to my worsening, chronic, GI issues on the HBP meds; the lack of altitude acclimation; and other little things, but then the denial was revealed. On a familiar hike starting from our Passo Sella hotel at 7,100’ to the hut and saddle at 8,800', it was perfectly clear to both of us that I just couldn’t access my well developed CV fitness. It was like I was going uphill during an asthma attack, but I didn’t have asthma. The power was in my legs but I was hitting a wall in my chest. I could breath in but it felt like the air wasn’t going anywhere.
I watched Bill again zoom far ahead of me and again watched my altimeter’s rate of gain hardly budge. I should have been speeding up at 30’, 33', or 36' per minute and instead I was primarily seeing 18’ and 21’ per minute. (Yes, it only registers in multiples of 3). That had also been the case the previous week on several high hikes out of Ortisei—the altimeter had confirmed what I felt then—what wasn’t happening in my body that should have been.
We’d arrived at Passo Sella with a higher level of fitness than the previous 3 years, we'd had the same 2 weeks of altitude acclimation at the same 2 locations as before, and I’d always been able to charge up that very trail and revel in the extreme output. It was a game, it was fun, we delighted in the luscious feeling of blood and air surging with ease to support our play but now, for me, it was gone. I was performing like an out-of-shape old woman, struggling with every step, experiencing oppressive distress instead of bountiful joy.
On that day, like the previous hikes where I couldn’t perform, I told Bill to go on without me. For years I’ve insisted that we not acquire each other’s disabilities and I wouldn’t stand for Bill diminishing his fitness because of my medication side effects. He always resists, but I insisted each time as a part of damage control. At the end of this hike, I told him to start packing warmer clothes and to bring something to read on our high elevation hikes so he could wait for me in reasonable comfort. It was a sad image for both of us to see our summer of fun together in the mountains be fractured by my suddenly compromised health.
On the trail, I began rallying my over-worked problem solving skills. I don’t ‘go gently’ and had no intention of surrendering my glorious, late-bloomer, endurance athlete kicks without a fight. We talked about seeing if my asthma inhaler might help, but as the day went on, it was clear that my difficulties weren’t with breathing. Then we decided that trying ibuprofen that works so well for Bill at altitude—help I’d never needed--would be worth a try. Or perhaps I would occasionally reduce my HBP medication dose for a day over the summer with an eye on doing the Grand Canyon’s Rim-2-Rim-2-Rim hike. It tops out at over 8,000’ and maybe having less medication on board for a day would help me up the hills without too much loss of BP control but only experimenting in advance would answer that question.
The next day, I began fantasizing about finding a HBP clinic in Denver, CO that had experience with difficult HBP control in athletes at altitude. Nothing popped-up in my initial online search to support that fantasy, but we were both focused on thinking big to solve this new performance issue and perhaps find a more satisfactory treatment for my overall HBP issue or the real underlying problem.
Also online, I read that the supplement CoQ10 can lower BP in some, so we ordered a bottle from amazon’s Italian site. A comment turned up in my extensive notes about all things that CoQ10 can help with altitude acclimation, making it more hopeful to try. I so much do not want to yield, I so much do not want to be a couch potato in front of a TV, and Bill doesn’t relish living a sporting life alone. Another seemingly impossible new project for my already busy summer would be finessing a balance between my blood pressure control and my fitness fun.
I have no answers but we do have ideas. I hadn’t anticipated a Part II to my story, but I’ll be sharing it as I learn more.
This is a bit of a self indulgent rant about a recent jam I got into with the medical system. I hope it gives voice to the unspoken frustration of others and provides assurance to them that they are not alone.
Taking Responsibility
It all started innocently enough. My blood pressure had been slowly rising for about 20 years (90/60 to 160’s/90’s) and one year ago it popped up and stayed up; it did so again 3 months later in the fall. Over the winter, I periodically checked it and decided to act even though my internist hadn’t. I decided to intervene this April.
For years, I’d hoped to avoid the control drugs because I usually discover almost all of the given side effects of any medication on my own. I generally do best on 1/2 to 2/3’s the regular dose of medications or anesthesia. And it also felt like a personal failing to have high blood pressure (HBP).
I’d been excessively diligent about all the lifestyle issues related to HBP but still had it. Over the winter, I made peace with my plight and accepted that it might be a genetic issue, even though my older brother had escaped. Later, I learned that HBP is also related to menopause and that by age 75, 80% of all women have HBP. But regardless of whether I was to blame or not, it was time confront the health issue and to lead, not follow; to set aside my childish pout and to deal with it as an adult.
I had made a special appointment with my internist for a few days after we arrived home from the SW in late April to start taking HBP medication. I brought BP numbers for almost 20 years with me to the appointment.
It seemed straight forward, but we did not get off to a good start. I wanted to discuss 3 lingering issues, the HBP being the important one, and he commented that the appointment wasn’t long enough. To the best of my understanding, it is Scheduling that is in control of appointment length, not the patient. He clearly wasn’t in a good mood; perhaps he had been on call all night. I did my best to manage the pacing and wrapped up all 3 issues in the allotted 15 minutes. I was out the door with little guidance about my new prescription but trusted the process.
I recently learned that my internist had just cut his schedule back to 3 days a week and would be retiring early, at the end of the year. Over the last couple of years, it had seemed that burn-out was taking its toll and I had to wonder if other factors had accelerated his exit; I wondered if his frustrations were spilling over into patient care—as in mine. But I was motivated. I wanted this to work. I was now 3 days into our 3 week stay before we flew to Europe for the summer and I needed this to quickly become a background issue.
Drug #1: Lisinopril (10mg)
"Playing dead to stay live" is a useful strategy for a number of mammals and I found labeling that approach to coping with the medication side effects with this ACE inhibitor during my first days helpful. At that point, any humor, even dark humor, was better than none at all.
The side effects of the lisinopril, the preferred, first-drug-to-try, started hitting in a little over an hour. Headaches and dizziness on Day 1 aged me by about 15 years: I was slowly shuffling and hanging on to walls in our apartment and railings in the stairwell to avoid face plants. Driving was out of the question.
Day 2 the “playing dead” strategy, as in minimal movement, especially of my head, became useful. After 3 hours of rolling stomach cramps and 2 episodes of nearly 'losing my cookies' that I hadn’t eaten, I decided I’d have to start carrying a barf bag with me after my weekend sequestration. Of course, by then, being dead, not just playing dead, was sounding more attractive.
I’m sure that many would have sensibly spent the day in bed but I feel less defeated out in the open spaces, even if I’m slumped against a wall, than being in bed. Crawling on my hands and knees was the safest way for me to move around our apartment for part of 2 days. At times like this, I always bolster myself by remembering that whatever I’m experiencing is nothing compared to what folks on chemo endure and that there is supposed to be a light at the end of my tunnel.
Fortunately, Day 3 that seemed poised to be a discovery day for yet another show-stopping side-effect, actually went better. I voluntarily delayed breakfast by 6 hours like I had been forced to do the day before. It was an easy decision to make because my first sips of water ballooned my belly. I was far from being well but it looked like I’d gotten over the hump for adjusting to the medication. To be safe, I spent another day indoors, literally laying low, hoping to find the person I left behind a few days ago.
Nut Case
After a rocky week on the lisinopril, my doctor changed my medication, angrily labeling me as having a psychogenic reaction to the medication that in his mind, had no side effects other than a dry cough. He believed that I’d programmed my body to reject the drugs because I didn’t want to go on them. Psychogenic is slightly different from psychosomatic, but they both put you in the same place. Pretty much any diagnosis that begins with “psycho-“ is a loser for the patient.
He was totally dismissive of all of my side effects and sternly said that they just don’t happen to anybody. However, the Mayo Clinic, the FDA, and others have long lists of side effects and my several bad reactions to this and my next medication were on these lists. I was suddenly in a terrible bind: my doctor was angry and he wasn’t playing straight with me. My presumed advocate was instead an adversary that couldn’t be trusted to tell the truth.
Not only was I feeling terrible, now my credibility and self esteem tanked. I now had 4 problems: high blood pressure, medication side effects, no professional support, and being dismissed as a nut case. Plus, I felt like I was being ‘gamed’ with no-win dialogues he was controlling.
He was right, I didn’t want to go on HBP meds for the rest of my life but I had made peace with the necessity of doing so months ago. And besides, who WANTS to go on medications? Wouldn’t one be classed a nut case if you said “Yippee, I’ve always wanted to take these meds!"
I had to wonder if this was a new opinion or if had he labeled me as a wing nut earlier in our 9 year relationship. When I first started with him as a patient, he strongly disapproved of my use of hormone replacement therapy (HRT) and sent me to another physician to continue my prescriptions. And annually for years, he would snipe at me for being on a double dose of HRT, which is what I still need. I shrugged it off, deciding he was ‘old school’ and didn’t believe that severe menopause problems were real. A couple of years ago he offered to take over the prescribing but I declined, siding with the OB/Gyn he had sent me to who had far more experience with, and respect for, the treatment.
I then thought back to 2012 when he prescribed high doses of ibuprofen for my ‘Joshua Knee’ which left me with permanent tinnitus (ringing in the ears). “Not possible” was his quip. “OK, then the tinnitus onset and ibuprofen use were correlated in time” I thought. I had decided to totally abstain from ibuprofen until the tinnitus resolved, which it never has. But when I asked him if I should resume using ibuprofen for my finger osteoarthritis or other issues, he advised not to. “Ummm. I’m crazy because my tinnitus should only be transient with ibuprofen usage but he doesn’t think I should use ibuprofen. Which is it? It seems he wants it both ways.”
Somewhere in there when discussing my HBP this April, he tossed in “It’s your ketogenic diet and high salt intake, that’s what’s giving you high blood pressure.” Another snipe, another lie, another manipulative game. He saw my numbers. My blood pressure had been rising for almost 20 years; I went keto 4 years ago; and my numbers jumped higher a year ago. His conclusion didn’t add up; it was just more convenient blame; another controlling attack.
More importantly, reducing salt intake usually only makes single-digit reductions in blood pressure and my upper number, the systolic, needed to drop by 30-40 points according to some, far out of the range of sodium's influence. Thank goodness I’d worked through and dispatched the self blame before raising my HBP issue with him because he was heaping it on me.
Drug 2: Amlodipine (5 mg)
Five days after being on the 2nd medication, amlodipine, a calcium channel blocker (CCB), he again chastised and blamed me, this time for making my blood pressure go up on the drug—based on the BP reading in his office. I comforted myself “He is retiring early, I’ll be leaving for the summer in a week, so this will be the abrupt end to our relationship."
While we talked, I was overtaken by a first, massive, medication-induced hot flash that lasted for about 4 hours. He noticed as my flushing spread and I commented “Oh, here it is, now I’m starting to have difficulty organizing my thoughts and with word finding” as I verbally stumbled. His mouth was agape while I explained that even with a double dose of HRT and without this HBP medication-induced hot flash, that I was currently sleeping with 3 fans running, including the small one inches from my head. I don’t think he ever believed that menopause systems were real and perhaps he still didn't.
His response to my latest side effect was “Double your dose.” “Really??” I thought. I had no intention of doing so but kept silent. I hadn't been able to start packing for our 4 months abroad because of the drug side effects and now the amplified hot flashes and brain fog made packing seem even riskier.
Again, I felt gamed. He stated that I was making my BP go up on this 2nd medication; it was my psychogenic response. But if he really believed that, wouldn’t it be malpractice to double my dose? Could it be that it was going up because I’d been continuously ill for 12 days? Could it be that 5 days on the medication was too soon to draw any conclusion?
When I inquired about other contributing issues, like my low kidney function, he shook his head “No.” Clearly in is mind, the only explanation for any issue I was having was my psychogenic reaction. Surprisingly, there was never any mention of a plan to deal with this new diagnosis of a psychogenic response. That absence suggested that he didn't really believe his own diagnosis, that he only enjoyed the control it handed to him. It seemed to be a gratifying, ironclad weapon to blame me for my poor response to HBP medications. His schedule was very tight because of recently cutting back to working 3 days a week and I was making it even tighter with these extra appointments squeezed into his lunch time.
After my disgust with his latest accusation diminished, I was intrigued by this interesting question of my BP going up on HBP meds—even though I thought it silly to label it as such so quickly. I wondered if rising BP was a known outcome of HBP medications, independent of psychogenic responses.
I did some online reading about that real phenomena, online ordered a blood test to rule-out a condition that can cause HBP medications to increase BP, and learned by the end of the week that I didn’t have that disease. But why wasn’t he pursuing other issues like this? It seemed too convenient, perhaps too much fun, to dismiss everything as psychogenic. Now, in his mind, not only was I to blame for having HBP, I was to blame for having side effects and for disabling the treatment.
The Knock-Out
At the end of my 3rd appointment, while my brain was fogging over with a massive hot flash, he set me up again. At the 2nd appointment, he’d asked me why I thought I was having side effects, which is when he lashed out with the psychogenic label after I answered his question. The first thing he said to me on my third appointment was “Why do you think your blood pressure is going up on medication?”
I decided that it was best to stop answering his questions that began with “Why do you think….?” I had foolishly taken them as authentic questions, that he was genuinely interested in my opinion. But I clearly had been duped. The requests for input were bait for the trap that he would close as soon as I answered; he instantly dismissed my replies as worthless, probably before I spoke. Now, at the end of this 3rd brief appointment, I recognized the tone he used for the set-ups when he asked “When are you leaving on Monday?”
I knew what was coming. He wanted me to detour to his office on our way to the airport for a 4th appointment, which would accomplish nothing. I would sit for who knows how long thinking about this delay, the nurse would take a BP reading, he would come into the room angry after again joking with the nurses in the hall, he’d humiliate me, and then I’d leave. It would be too late to do anything other than berate me. Even in the muddle of the flushing, I could see the bait. I could see that this round was only for gratifying his dark side, not for my care.
I carefully answered his exact question: “We are leaving at noon.” “What time is your flight?” he then asked. There it was: the trap. I dodged this specific question: “We are leaving to put our truck in storage at noon.” It was a true statement and there was no way I would reveal that our flight was at 5 pm. “Game over! The knock-out.” I shrieked inside, and he knew it. I was in control now. I wouldn’t have the opportunity to consult with him ever again and didn’t want to. Whatever his agenda had been, he was permanently off of my game board. I was free; I was on my own; I was in a better place; I had one less problem.
Right for the Wrong Reason or A New Low
The good news/bad news was that I had so much brain fog after that last appointment that I messed up my meds. For either 4 or 6 days, I’m not quite sure, I inadvertently switched back to my first med, the lisinopril, but at half of the original dose.
After picking up yet another prescription, Bill had suggested cutting the pills in half so I’d know if cutting them was really an option when mixing and matching drugs over the summer. I did cut a few, with half of each one disintegrating in the process. The thrifty side of me put the intact half pills in with the whole ones and I neatly placed the crumbs in a small dish, deciding I’d use them up before we left town. They were however the wrong drug and I was totally oblivious to that fact.
Worse yet, it took me over a week to notice the mistake. I merrily went along, taking the wrong drug at the reduced dose for days. Then in flight, again unwittingly, I switched back to the correct med that I’d previously set aside for our flight and the following day so that sleeplessness of overseas travel wouldn’t result in a medication error.
After we’d arrived in England and I’d cluelessly stumbled back to taking the correct drug, the 2nd one, the hot flashes returned. Only then did I recognize my series of errors. I was totally humiliated. I failed the test for assessing if seniors can live independently: “Can she manage her own medications?” “Nope.” I switched to the wrong drug at half of its prescribed dose, switched back to the correct drug, and didn’t even know it. It took side effects from restarting the 2nd drug to sort it all out. How shaming! I was totally demoralized. Now I was an incompetent nut case.
The good news was that even though I did not feel well, my thinking improved and I attributed it to finally adjusting to the drug, not from mistakenly taking a half dose. The timing however had been excellent for packing. I finally could think clearly enough to embark on packing for our flight. I later discovered that did make some annoying packing errors, but nothing insurmountable.
Drug #3
My original intent after I started having HBP medication side effects, was to leave town for the summer with 3 different products. Years ago I’d been told that unless you were obese and lost weight, that HBP was a 2 drug condition. My internist confirmed that it was fine to mix meds to dilute the side effects and based on my life experience, “3” was my usual number of desired options when problem solving. My internist denied my request for a 3rd drug to fiddle with, but luckily for me, I had been playing my own games.
The naturopath (NP) I’d been seeing since 2012 had urged me to see NP specializing in cardiology for over a year and I’d finally, coincidentally, relented. I’d set up 2 appointments with her when I’d booked the initial appointment with my internist and I had been seeing both during our brief stay.
She fortunately had a 3rd product, an herbal equivalent to my first prescription medication. She said they had the same action, the same side effects, and in her mind, were interchangeable, so it wasn’t a great 3rd product, but a third one nonetheless. In addition to dealing with the issues for which my primary NP had sent me to her, she answered all of my questions that the internist hadn’t had time for about HBP medications. So, I did leave town with my desired 3 treatments. My internist had left me feeling like I was alone in a dark box but the NP had given me a key that might possibly open a back door he did’t know about.
After discovering my multiple medication errors early in our trip, I decided to test my 3rd and last option, the NP’s over-the-counter Carditone herbal product. I was reserving it for later in the summer after I’d had a good run with each of the 2 prescriptions products but since they were both a hazard to my safety, I threw in the towel. I had just enough of the Carditone to test it at its lowest dose, 1 tablet a day, until our return home in September. I crossed my fingers that even though the NP said any side effects with it would match those of the lisinopril, that she was wrong. If it was no better, I’d be pill cutting in earnest, trying smaller amounts of 2 different drugs at a time.
My preliminary assessment was that the Carditone was indeed the key to the back door—the way out of this jam I was in with the best 2 HBP medications from my internist. I did experience mild side effects with it the first 2 weeks: a little headachy, a little dizzy, and a sense of being overly hot without the brain-crippling hot flashes. After 2 weeks, I felt on my way back to normal, though at a month I began having GI distress and attributed my new pattern of sleep disruptions to the medication. It was far from perfect but it was tolerable and did appear to be putting a lid on my HBP. I might need to increase my dose in September to achieve better control, but at least I had a drug I could work with.
As crazy as it seems, it is challenging for me to get accurate BP readings. My systolic frequently varies 15-20 points when taking readings over a 10 minute period. I aim to sit quietly for 10 minutes like my internist recommended, then take 5 to 6 readings over about 10 minutes. My BP spikes with noise, so I need to be in a setting with a minimum of horn honking, sirens, and other danger alerts to which my overly active surveillance system reacts. And since the best readings aren’t to be taken after eating, exercising, or a hot shower or bath, I have to wait for a rest day or relative rest day. And to make it a little more complicated, it looked like my BP increased when we start sleeping at higher elevations. There were no quick and easy answers on this journey.
The Plan for September
Nut Case
When I see my new doctor at the same clinic in the fall, I will outright ask her if the diagnosis of "psychogenic reaction" was noted on my chart or any comment that would similarly undermine my credibility. I need to know. I won’t leave that diagnosis behind if I change doctors or clinics because the new ones will ask to have my chart transferred. I need to know if I will be branded as a nut case the rest of my life and do what I can to navigate around that.
Hypnotherapist
Before we flew to England in mid-May, I touched base with a hypnotherapist who was confident that she could deal with my psychogenic reaction to HBP meds, if it existed, and also considered reducing my blood pressure a possible outcome. I was thrilled to finally feel some professional support. But of course, revealing that I’d used a hypnotherapist for either or both of these issues to an MD could further anchor my diagnosis as a nut case. If I do see her and she does dispatch my HBP, I’ll probably not share that with an MD. Any questions about “Why do you think your HBP disappeared?" will be answered with “I took care of it in my own way.”
Making My Case
Bill and I agreed that concisely presenting my HBP history to my next and future doctors needed to be improved. At my request, Bill spent hours looking for a combination of software products to customize a database that would graphically present my almost 20 years of data. A graphical presentation would more quickly make the case about my HBP being independent of my ketogenic diet as well as highlight the abrupt increases over the last year. Hopefully that would increase my flagging credibility a tad.
Re-Evaluating Disclosure
I’ve sought to be fully disclosing in the face of using parallel treatment systems. I’ve always told the NP and MD what I’m doing with the other. I will disclose that I’m using an over the counter HBP product to my internist when I honor his request to send some BP readings to him over the summer. But I suspect that being honest with the internist about seeing an NP for the last 6 years added evidence to his nut case diagnosis. I certainly got beat up for revealing that I use NP services when I had an endoscopy by someone other than my usual GI doctor. One of my summer projects is to re-evaluate my ‘full disclosure’ policy and to consider be more armored in the beginning of the next relationship to maintain my credibility, if it still exists.
Disengage?
And “Should I disengage a bit from the medical system?” is another question. We can order our own labs now to track the wellness issues we care about; many of the screening procedures like PAPs and mammograms are not longer supported by the research; and we don’t really get much from annual visits. Our main need for a primary care physician is if something more catastrophic happens or one of us needs to be hospitalized. It’s important to have an established relationship for those eventualities but for me, the price of doing so was feeling questionably high. My first career was in health care and it is now very odd to be alienated from it. This option of being a bit more detached from medical care is another issue to contemplate over the summer.
Bullying
I’ve been too slow to fire employees and service providers in the past and this was another good lesson on the importance of not making that mistake in the future, especially with health care providers. This situation with my internist degraded so quickly—over about 2 weeks--that there wasn’t a realistic possibility of changing doctors. BUT ending the relationship was clearly was the right solution and I’m not sure that I would have done that in the fall if he hadn’t already been on his way out the door. Note to self: Don’t hesitate to fire if it’s not going well.
By definition, bullying occurs when the victim feels that there is no way out. I need to be vigilant that should I feel bullied again, to implement an escape route as quickly as possible, to not make excuses for the situation or consider it too much of a nuisance to confront it.
The Way Forward
Aging has its challenges and friction like this with my internist hadn’t been one of my top concerns, but it certainly is now. Being alert, being willing to cut-and-run when the relationship isn’t right, is now on my radar for managing my health care. It’s a huge disappointment, but there is a lot about aging that’s disappointing and that catches one off guard.
Surviving vs Thriving
At the end of June when I finished writing this piece, I thought the worst of this HBP treatment journey was behind me, but I was wrong. Dealing with my internist was over but I had new problems demanding resolution.
I’d carefully been dismissing my recent hiking difficulties as due to my worsening, chronic, GI issues on the HBP meds; the lack of altitude acclimation; and other little things, but then the denial was revealed. On a familiar hike starting from our Passo Sella hotel at 7,100’ to the hut and saddle at 8,800', it was perfectly clear to both of us that I just couldn’t access my well developed CV fitness. It was like I was going uphill during an asthma attack, but I didn’t have asthma. The power was in my legs but I was hitting a wall in my chest. I could breath in but it felt like the air wasn’t going anywhere.
I watched Bill again zoom far ahead of me and again watched my altimeter’s rate of gain hardly budge. I should have been speeding up at 30’, 33', or 36' per minute and instead I was primarily seeing 18’ and 21’ per minute. (Yes, it only registers in multiples of 3). That had also been the case the previous week on several high hikes out of Ortisei—the altimeter had confirmed what I felt then—what wasn’t happening in my body that should have been.
We’d arrived at Passo Sella with a higher level of fitness than the previous 3 years, we'd had the same 2 weeks of altitude acclimation at the same 2 locations as before, and I’d always been able to charge up that very trail and revel in the extreme output. It was a game, it was fun, we delighted in the luscious feeling of blood and air surging with ease to support our play but now, for me, it was gone. I was performing like an out-of-shape old woman, struggling with every step, experiencing oppressive distress instead of bountiful joy.
On that day, like the previous hikes where I couldn’t perform, I told Bill to go on without me. For years I’ve insisted that we not acquire each other’s disabilities and I wouldn’t stand for Bill diminishing his fitness because of my medication side effects. He always resists, but I insisted each time as a part of damage control. At the end of this hike, I told him to start packing warmer clothes and to bring something to read on our high elevation hikes so he could wait for me in reasonable comfort. It was a sad image for both of us to see our summer of fun together in the mountains be fractured by my suddenly compromised health.
On the trail, I began rallying my over-worked problem solving skills. I don’t ‘go gently’ and had no intention of surrendering my glorious, late-bloomer, endurance athlete kicks without a fight. We talked about seeing if my asthma inhaler might help, but as the day went on, it was clear that my difficulties weren’t with breathing. Then we decided that trying ibuprofen that works so well for Bill at altitude—help I’d never needed--would be worth a try. Or perhaps I would occasionally reduce my HBP medication dose for a day over the summer with an eye on doing the Grand Canyon’s Rim-2-Rim-2-Rim hike. It tops out at over 8,000’ and maybe having less medication on board for a day would help me up the hills without too much loss of BP control but only experimenting in advance would answer that question.
The next day, I began fantasizing about finding a HBP clinic in Denver, CO that had experience with difficult HBP control in athletes at altitude. Nothing popped-up in my initial online search to support that fantasy, but we were both focused on thinking big to solve this new performance issue and perhaps find a more satisfactory treatment for my overall HBP issue or the real underlying problem.
Also online, I read that the supplement CoQ10 can lower BP in some, so we ordered a bottle from amazon’s Italian site. A comment turned up in my extensive notes about all things that CoQ10 can help with altitude acclimation, making it more hopeful to try. I so much do not want to yield, I so much do not want to be a couch potato in front of a TV, and Bill doesn’t relish living a sporting life alone. Another seemingly impossible new project for my already busy summer would be finessing a balance between my blood pressure control and my fitness fun.
I have no answers but we do have ideas. I hadn’t anticipated a Part II to my story, but I’ll be sharing it as I learn more.