NAVEL-GAZING CAN SAVE LIFE OR SANITY
****CAUTION: NOT medical advice – I’m not that kind of doctor ****
Written a week ago (Feb. 26, 2017); I didn’t dare post until I knew how this ended
I thought it was just me, by now a neurotic, introverted person overwhelmed by being in a scary situation (chest pain) and a not-safe-feeling place (ambulances, doctor’s offices, hospitals, and ERs, where EVERYONE but you seems to be healthy, loud, bossy, and telling you what to do).
But as I try to recover my sanity and my health from the three stents + angioplasty, and all that implied/implies, I ALSO finally realized that I’m having a major DRUG REACTION to a blood pressure medication called metoprolol (like Toprol), a beta blocker; amlodipine (like Norvasc), a long-acting calcium channel blocker; and/or atorvastatin (like Lipitor).
I never had high BP before (except doctor-induced), and I’ve not been on any BP meds, and as soon as I hit the first ER they start pushing drugs on me. I resisted most of the drugs the first time (and they only had me for an ER day, and then a cath lab in PA day), so it wasn’t until the SECOND ER VISIT, again with chest pains, that they started pushing harder, and I just gave in and let them make me swallow and inject whatever they thought was necessary, whatever was their ‘protocol’ for everyone the same.
The adult drug: metoprolol – an iffy, volatile beta blocker (my opinion)
And that’s when the metoprolol came into my life. For days, I got it twice a day (25 mg. dose). I took it – I wasn’t in a position to argue.
When I left the hospital, they gave me my very own set of everything, which I dutifully took every day – BP med (metoprolol) and emergency BP med (amlodipine – for that BP spike), statin (don’t even get me started about those), and the two drugs I PROMISED, before they gave me the med-imbued stents, to take every day for a year: Effient (a platelet-control thingy like Plavix but better, which is supposed to keep the stents from clogging while they become part of you – epithelialized) plus a baby aspirin (81 mg.). The last two I promised to take; I won’t break that promise if I absolutely can keep it.
Saw the doctor the day after I got out of the hospital, reviewed meds with her (but not problems), reminded her that because of the CFS, and by long experience, I DON’T TOLERATE MOST DRUGS, even in small quantities, and can never take enough to get to an actual therapeutic dose of them. Decades of experience trying to take various things suggested for the CFS had proven I could rarely tolerate something.
For example, it took over three years, and every pain-killing drug in the book (except for the opioids and narcotics, which I wouldn’t take after I found out how much they messed with the little mind I have left – not even for pain). Eventually, we found one that worked most of the time, Celebrex – a cox-2 inhibitor – which is an arthritis drug, and which I’ve been taking, 200mg twice a day, for 15 years. Regular blood tests didn’t show any problems, and I prayed it wouldn’t be removed from the market (like Vioxx – which had problems).
I had explained that I would need to continue this drug for a weird pain which makes all muscle fibers, nerves, and joints burn simultaneously. I KNOW when I’m off it, I KNOW when I’ve gone to bed without a dose. I never need more, can’t manage to reduce what I take to less than 2/day.
She was listening, but I left with no drug changes, and started journaling every single day every single thing that happened to me (the experience kind of focuses your attention on yourself).
And wondered why I was still a zombie
The thing that keeps me sane is writing fiction. I gauge my days by whether I got a bit of the ‘good time’ which allows me to write the insanely complex and layered novel I’m working on.
I journaled every bit of brain activity, food, anything out of the ordinary – and ability to write fiction.
It took me four days to figure it out: late two nights ago, with the worm of certainty gnawing at my gut (along with whatever was making my gut do that wave thing continuously), I looked up the side effects of metroprolol, and some of the inevitable internet comments of those who have gone before (which one has to be very careful with, for obvious reasons).
And convinced myself (I’m not going to bias you by listing them) that the powerful drugs they had me on, the metoprolol plus the statin plus calcium channel blocker, was the cause of me being a zombie AND having the gut symptoms and all the rest.
My solution: don’t take that crap
All I wanted to do, which I could NOT do – I completely lost the ability I’ve had for YEARS to meditate, rest, nap, and calm my heat beat – was get back to the place where I was in charge of my blood pressure and heart rate again.
The first, necessary part had been accomplished: get the hell out of the hospital. I’m trying to NOT be ungrateful for them saving my life and avoiding a heart attack sometime in the future, and chest pains now. Understand that. But getting out of the hospital, and back to a quiet, self-controlled place was not doing what I had expected it to do.
With the new stents, I figured I’d be in the best possible condition for someone like me – able to slowly start my little bits of bed exercise again, lose weight, and start the walking with a heart monitor which I had been unable to build up (probably because of the restricted blood flow making my heart rate go up above the aerobic limit too quickly, even before the chest pain – but I’ll never know that for sure).
So I was optimistic – and I was making NO progress in spite of that.
You might say – and I did – that I was being premature, that I should rest more, that I shouldn’t expect to write fiction for at least a couple of weeks.
Which would have been fine, except that the symptoms I’d been trying to ignore were getting worse, not going away. Sigh.
From my journal:
I made the decision around 4AM that I’m not taking anything but the Effient and the baby aspirin, because I literally promised I would take those for a year.
My gut hurts. Waves of intestinal rolling literally make me feel sick.
My left hip hurts.
I’m queasy – and have been for weeks now.
The beta blocker and statin are NOT required.
I never agreed to a blood pressure medication, because we ALL agreed I don’t have high blood pressure.
I understand keeping my BP down (illegitimi non carborundum) – but I can’t even calm myself down with my breathing right now. If it rises, we’ll talk about that then.
I understand they are more comfortable with a certain LDL target – I am committed to losing some of this weight, but have the feeling I should not be having this much trouble.
My HEAD is soggy and useless, and I can’t live that way. I can’t write that way.
And right now the pain in my universal joint is pretty bad – and I don’t dare take the appropriate painkillers.
Even [hubby] takes ibuprofen when he needs it! But he’s not on Celebrex.
Can’t do this. Won’t do this to myself.
The actual decision was to not take the daily dose of metoprolol+statin with breakfast.
Talk about trepidation!
And the results were weird. My head cleared for the first time in as long as I can remember.
The gut was still doing the wave – I shrugged: it wasn’t getting worse. And gut muscles and heart muscles are both smooth muscles – the drug affecting both made sense, and might take some time to wear off completely.
I finally got the timeline of events clear in my head. I know I blogged about it already, but there are significant mind warps with what I wrote (though the two segments, ER to PA and catheterizations are correct, there was actually a SIX DAY GAP between them when I was at home, dealing with chest pain I had been told was not cardiac, before I went to my own doctor to get some help with that…and the second ER to PA and catheterizations started).
Huh. I completely lost six days out of my life.
Yeah, stress. But more yeah, drugs cause memory problems – and confusion.
The day went along, the best day in ages
I almost wrote (I had to get back up to speed). I remembered why I loved this particular scene (22.1 if anyone is keeping track – first scene of second chapter in NETHERWORLD).
I got all enthused. I blocked the internet for 5 hours, and didn’t even mind not surfing – I don’t waste my good time on surfing.
I took my naps – and could do my meditation breathing and calming and even sleeping, just as ‘normal’ from before on a good day. It was still there; the drugs had blocked my abilities.
I had obviously made the right decision.
Hey, I’d only been on the stuff for a couple of weeks, it was supposedly a small dose (50 mg), and it shouldn’t be too hard to cut it out completely, and then discuss the thing later with the doctor (it’s a Saturday, and I’m sure I won’t be able to get through to her then).
I don’t want to be diverted – so I don’t even tell my husband (not such a hot idea in retrospect, but, hey, I’m fine, BP (I measure several times) is rock steady – and I’m feeling HUMAN for the first time in so long.
All I needed was to stop taking the drug which was causing the problem! Problem solved.
You see where this is going, right?
Husband has picked up a cold (I’m sure it’s all that stress of holding it together and driving to PA twice a day for me in the hospital), and is miserable, and I don’t want to bother him.
I am having absolutely no problems. He heads to bed at ten, early for us, and I stay up to surf a bit, feed the chinchilla, and put the house to bed for the night. With a still-working brain.
And the blood pressure spike HITS.
The short version (as if anything I ever write is short):
I take the emergency BP med (amlodipine).
Ten minutes later, and having argued with myself the whole time, I cut one of the metoprolol tablets in half (it’s late in the day), tell myself I should have titrated down more slowly anyway; remember someone on the internet saying that you COULD split these, even though the are extended release (tablet, not capsule – makes sense – or maybe I saw that on one of the side effects pages online); and swallow the damned thing.
And spent the next two hours taking my blood pressure every ten-fifteen minutes, journaling all this stuff, and wondering:
- should I call paramedics and go to the ER again. For a drug adjustment? They don’t do that kind of stuff, and besides, I have neither had chest pain, nor gotten to the place where I even though of trying the nitroglycerin. I wasn’t stupid enough to even consider driving MYSELF to the ER (five minutes away).
- should I wake the husband who is sick, who I didn’t tell about my little experiment, and who won’t have any particular ideas except to take me to the ER – why would he have any ideas on how to manage this little crisis?
- should I take a SECOND amlodipine emergency blood pressure tablet? No one ever mentioned what to do if the first didn’t work! I have no data. Even the internet is silent on the topic.
- was I feeling anything alarming – other than BP and pounding heart rate – and didn’t people live for years not even knowing they HAD elevated blood pressure?
- would a short period of this damage my kidneys?
I KNEW calling someone (the Aetna 24 hour nurse, or the cardiologist’s on call person if they had one) would put me in the ER overnight for ‘observation.’ I KNEW that, the same way I know my own name (and birthdate, which I’m going to change, since they used it for ID about a million times in the hospital, and I’m tired of it).
So, what did you DO, Alicia Guadalupe?
But watched myself like a hawk, and wrote it all down for posterity. To go with the autopsy.
When the BP spike was more or less over, around midnight, two hours later, I added it to the list of dodged bullets, was mad that I still had metoprolol in my body – had that really been necessary? – and went to bed next to sleeping husband (who had now at least had a couple of hours of sleep and of course woke up).
I told him the whole stupid story.
He said I should have woken him. I told him why I hadn’t.
He was calm, calmer than I would have been.
We chatted for a while, and he reminded me (I had forgotten – it was 18 years ago) that he had had problems with the SAME drug, metoprolol, after HIS quadruple bypass, which had landed him in the hospital within a week of coming home.
We were awake for a while. The gut is still doing the wave – I’m ignoring it. And actually managed, both of us, to get to sleep before 2 AM and make it through to around 8 AM with only minimum breaks in sleep.
What do I do now?
Play by ear again.
Don’t take anything unless I feel I have to, and then try a one-QUARTER dose of the nasty drug later today if something happens again. And the emergency stuff.
I feel fine. I feel normal. I blogged – that’s something.
Yeah, yeah, I know. Call the doctor’s office. I would, if I could figure out how to phrase the statement of what I want:
Could you please tell me how to get off metoprolol properly?
I’ve done the following… – how do I finish the process?
I’ll call during the week, but is there anything I need to do meanwhile?
I’ve done something possibly stupid, but am okay – what should I expect next?
You see my dilemma, right? They HAVE to respond to ANY question like that with either ‘GO TO THE ER’ or ‘TAKE THE FULL DOSE NOW AND WE’LL DISCUSS IT AT THE OFFICE.’
THEY have no choice. THEY have protocols they must follow or be accused of malpractice.
These are, however, the same THEY who took three catheterizations and a lot of luck, for whatever reasons, to find the thing that actually needed stenting, and have put me through hell (and saved my life – I’m grateful).
THEY put ME into the situation by giving me drugs I never agreed to long-term, in the hospital, and then NOT discussing any of them with me in the after-hospital visit.
No warnings. No ‘Call if this happens.’ No ‘You can take X for pain.’ Nothing beyond ‘If you have chest pains, go to the ER.’
But I’M at least half-way off the stuff, half-way to freedom.
It was a reasonable thing to try (I tell myself). And write it all down in case it is ‘for posterity.’
I’m thinking about it.
I took a shower. I hadn’t had one except the crappy one when I left the hospital five days ago. I figured out how to take one sitting – very low stress – and my hair is now clean, my toenails now trimmed, for the first time in WEEKS.
I’m not worried – but then I wasn’t worried yesterday when I had my first good day, either. (Fool’s comfort.)
My MIND IS CLEAR. Do you have any idea how valuable that is and how horrible it’s been without my tiny bit of brain? Day after day after day?
I have and have had NO CHEST PAIN. The gut might even be slowing down.
Husband is home, seemed surprised when I asked him if it was because of me. No, he said – he didn’t take his cold to church to share with the congregation. Love that man.
I also tell myself that anxiety probably pushed a huge load of adrenaline, the adrenaline I don’t allow myself because my body take days to clear it, into my system, so I probably made it worse than it was. Hindsight allows you to do that.
And there you have it.
If you lived through this little misadventure with me, you have now probably decided what you might do in a similar circumstance – and thus may have learned something.
Most of ‘you’ do not have CFS, and cannot imagine the difference between being a zombie 24/7 for WEEKS, and having a few clear hours, that makes my life bearable. You probably think I’m a total idiot. You would have called. Someone. Anyone.
If you HAVE CFS or a similar chronic invisible illness, this may be more your life as usual than you really care to think about. The drug overreactions, the fear, the lack of understanding among ALL medical personnel, even the ones who seem to understand and agree you’re delicate. You might have done the same, or not, but the thought processes might be similar.
Or you might think: What’s the big deal? She had a BP spike. They happen.
Feel free to weigh in. Politely. I’ll listen, even if I don’t change my mind. I can still take that dose of poison: full, half like last night, quarter. It’s noon, and I really should eat something.
The upshot? A week later I am ready to share the adventure (Mar. 6)
I ignored the third spike, smaller, Sunday night (Feb. 26) – and BP came down on its own, no emergency drugs.
Monday morning (Feb. 27) I called the doctor’s office, told them I’m off their drugs and won’t take them. Told them I am trying very hard not to have to get off the one they really want me to take, the Effient to keep the stents open.
I asked if I could switch cardiac rehab somewhere else more convenient (they really want me to try that).
And I asked how long it would take the huge bruise and tissue damage area to resolve.
They tell me I can switch the rehab to a closer location; ask me to consider taking a different drug after these are out of my system (Zetia, a cholesterol lowering drug); and send me for an ultrasound of the damaged area.
The internet supplied the lovely information that it can take six days for a normal person to clear the drugs I’ve been taking and their lovely side effects; I’m giving it far longer, as CFS people don’t clear things as fast as ‘normal’ people.
It’s far better now (Mar. 6) SEVEN days after the last day with a half dose. The symptoms are subsiding. The head is even clear for periods of time – and I wrote yesterday for a while.
The BP runs 120-130/60-80 just fine with no help. The spikes stopped. The gut is calming down. Every symptom is dropping slowly toward what I’m used to. (There were some interesting sensory hallucinations – I won’t miss those.)
I’m ‘authorized’ to use ibuprofen ‘lightly’ – which helps with the new back pain.
And the ultrasound shows damage, but not to the artery – I haven’t been told how long it will take to heal. The bruise is spectacular, belly-button to mid-thigh on the right, and leaking down like a Dalí painting of a clock on a hot day.
Medical research and you – reading the literature
And I have spent a very ‘interesting’ week reading a ton of research papers on all this stuff.
The more I read, the more I am convinced I will probably not take these drugs – and that prudence would have advised not even starting them, or getting off of them the minute I was out of the hospital. I shouldn’t have had to find that out on my own. Even if they do what they say, my body can’t handle them, so it won’t matter if they do what they say.
I won’t summarize what I found out, but it wasn’t pretty. There is a LOT of it. It gave me a lot of ammunition IF I can keep my BP in a good range as I have been doing for years with meditation, de-stressing, and biofeedback of a sort.
The statins will most likely not be something I can tolerate – I’m guessing the liver enzymes would have shown this in six weeks anyway, but I’d rather avoid the damage.
My conclusion: I am now a ‘cardiac patient,’ which I wasn’t a month ago
That does NOT mean I lose all choices.
I am grateful the blockages have been stented, hope they got them all, still wondering what really went on, and why it took over two weeks to find them all. Hope it lasts, and I don’t need more. Hope it was a quirk of anatomy.
Am pretty sure the relative immobility of a chronically-ill person didn’t help any.
I expect to be monitored, and there will probably be more tests.
But the drug-induced hell wasn’t really necessary: I told them about me, they didn’t listen, I paid. And I learned. ASK A LOT OF QUESTIONS, and if you have time, go to the primary sources.