One of the things that consistently makes life more exciting around here is my case of New Bottle Paranoia Syndrome.
My present state of NBPS has reached its current form because of a long series of unhelpful surprises my body has delivered me with when presented with medication. Pretty much all my life, I’ve been one of those people who gets at least one prominent side effect with any substance, and more side effects than average. Nothing as scary as an allergy, mind you – just a reliable tendency for my body to seem to put the prescribing information up on a wall and throw at least one dart into it. Vengefully. Like the fact that I’ve introduced a foreign substance is a huge insult, because I’ve implied it’s not doing its job well enough (which it really isn’t by any reasonable estimate) and in response my body is all she thinks she can just feed me pills? well I’ll show her who’s boss around here.
The first manifestation I can remember of this is dealing with the side effects of my Ritalin prescription as a kid. Yes, I was diagnosed with ADD relatively early – 1984. The drug significantly suppressed my appetite at lunch, and when I got home from school I’d be absolutely ravenous and eat a huge quantity of whatever crunchy salty thing was at hand. And in consequence, I spent the next 20 years trying to put a stop to that 3:30 bad habit.
The next significant pharmaceutical in my life was the Prozac I took to deal with some pretty bad depression in high school. As I’ve mentioned previously, it made me feel like I was living on the inside of a hamster exercise ball, but that was what it was meant to do. What it wasn’t meant to do was give me the shakes, constantly. Once when I was having a particularly bad day and just needed to go home and pull the blankets over my head, I went to the nurse’s office, held out my nearly-vibrating hands, and the nurse signed a dismissal slip for me right there. (I swear to god, Mom, this is the only time I did this.)
On the heels of that came the trouble with cold medicine. I had always had to be sure to take the non-drowsy type, because anything that wasn’t non-drowsy resulted in me needing to clear my schedule for a couple days to sleep it off. Then the first year of college, I took some of my usual non-drowsy stuff, which had always been fine up to that point, and it made me feel terribly jittery. So that removed both major categories of cold remedy from my life, and since then I’ve had to snuffle through colds with nothing but cough drops and throat spray. Which is uncomfortable, but at least it’s sort of an excuse to eat candy.
Around the same time the trouble with the non-drowsy cold medicine began, I realized that my childhood Ritalin no longer helped me focus, as it always had – it just made me feel unpleasantly wired. Same thing, same time, with caffeine. The occasional Coke had never been a problem, but now I found that it made me snappish and grouchy. So I crossed those two off the list too.
Then in my 20s came the several consecutive months of nausea when I first tried to take oral contraceptives, the visual migraine with the same where half of my vision blacked out for an hour (“Stop taking them immediately,” said the doctor. You don’t have to tell me that, I thought), and the crazy discovery that the Xanax I’d been prescribed for blood draws because of my needle phobia made me more anxious and not less. (“Paradoxical reaction,” they called it. “Sheer unmitigated terror” was my take.)
So that – all of that – is where NBPS originally comes from.
Because of those experiences, when I arrived at the overwhelming dizziness and fatigue that eventually proved to be the beginning of my ME/CFS one day in Chicago lo these many years ago, I think I can be forgiven for having thought that I’d had those two side effects pretty badly when I started the anti-androgen medication I was on at the time for acne, and that maybe it was connected to that drug somehow. Thus my first move was to drop the all the things I was taking – anti-androgen, oral contraceptive, multivitamin, calcium – and see if the symptoms went away. They didn’t, of course.
But once I dropped all those drugs, the anxiety I developed as one of the symptoms of the illness (something that Dr. Cheney thinks is due to a lactate peak in the brain) meant that I just couldn’t talk myself into taking anything new. So I didn’t – I literally took nothing for my ME/CFS from 2004 until late in 2007. I was just too terrified to put a pill in my mouth and swallow it.
What was I afraid of? I think it was mostly the looming unpredictability of what being chronically ill meant, something I’d never experienced. Part of me thought that I would get well by myself, as I always had. I didn’t know what would happen if I took any particular pill, and I feared that if I tried to actively treat my illness I might be pressed to take a whole bunch of pills. The number of unpleasant side effects I might experience in taking a whole bunch of pills seemed like an impossible hurdle to surmount.
Even though the amount of information available on the internet about ME/CFS was much less than is currently out there, I was overwhelmed by the lack of consensus there was on how to treat the disease. I came to the conclusion that if there were as many factions as there were, and nobody was out there getting cured, that there was no sense in trying any of the regimens.
In that no-treatment interval, there was an episode in the middle of one night where I was having cramps and took a couple of Advil, something I’d done plenty of times – well, plenty of times before I got sick. But this time, 20 minutes after I swallowed the pills, my heart rate zoomed up to 180 or so and stayed there – for two hours. Chimp and I sat in the car, in the garage, with the cabin light on, through the wee hours, because I was toying with the idea of going to the hospital, but I knew from experience, by then, approximately how helpful they were going to be at the ER. We sat there until my heart calmed down and we went back to bed. Scratch Advil off the list and add another log of unpredictability to the pill-fear fire.
I look back at those three and a half years that I took nothing because I didn’t think there was anything to be done, pushed myself to keep working, and regret so much all that lost time. When it came to the moment that I had no choice about whether or not to take drugs – the moment in fall of 2007 when one night, with no explanation, I simply stopped sleeping – that opened a channel for me to learn to take medication again.
I’m better about it in some ways now. I take a lot of pills. And I suppose that if anyone had tried as many pharmaceuticals and supplements as I have by now, they would have had some unexpected reactions. Plus, it’s not that everything has major side effects for me – I have a regimen of half a dozen soporifics I’ve arrived at that I deal with pretty well. Except for the fact that by 4 p.m., I don’t remember anything that happened before about 10 a.m.
But it has never come to be fun starting them, and NBPS still rears its head. Pretty regularly, when I am to try some new thing, I order it and sits on my dayroom table for a while, sometimes a very long while. Maybe I open the bottle, pull that long wad of stuffing out if it’s a supplement (and turn to Chimp and make my perennial joke, “They expect me to swallow this?”), look at what’s inside, and put the cap back on for another day.
When I do actually get around to starting something new, I only start one thing at a time, because if something unpleasant happens, I don’t want to have to wonder what is causing it. My routine is always the same: I take a tablet and take a chip off one end of it, or open the capsule and pour out a tiny portion of the powder, and take that minuscule amount, because I don’t want to take the full dose and find out I’m loaded with something that my system definitely dislikes. If the tiny amount goes okay, the next day I take a little more, and increase it bit by bit, until I reach a problem or get up to the whole dosage.
It’s not uncommon that even with all that, I’ll still have a panic attack somewhere along the way, and the fact that I sometimes have panic attacks with new substances sort of means that in the future I will still sometimes have panic attacks with new substances. They’re unfortunately self-perpetuating that way.
Like the Advil, sometimes unexpected things happen even with stuff I’ve taken for years – the old bottle was old, and the new bottle is stronger, or it’s a different manufacturer, or something unknowable has changed in my system since the last time I took it, and now it and I don’t get along anymore. And that’s the worst – the times I think “Oh, I’ve done this before, nothing to worry about, same stuff, no big deal” and – nope. It happened with both an antibiotic and a topical recently, and both times my body threw my most hated reaction: dissociation.
I suppose there are some people out there who would like to have a surprise mild out-of-body experience every once in a while, but I am not one of them. There is a very good reason that I have never taken any psychedelic drugs. I’m a bit of a control freak when it comes to staying in touch with reality, and whatever that trippy, dissociative area is that my brain opens up in response to some substances that makes me feel like I’m at a distance from the world, it almost inevitably leads to a panic attack.
In the end, despite all the weird experiences I’ve had in this vein, I don’t really know anything about what causes it or what it indicates. I don’t know if the truth is that I’m really sensitive to medication, really good at noticing the tiny changes it brings about, just a pansy, or some combination of those. Was my perpetual coalmine-canaryness a sign that my system had the potential to be deranged into just the sort of illness I developed, or is it just a coincidence? Whatever it is, I have to say it’s not optimal for someone whose career for the foreseeable future consists mostly of washing down pills. And I wish there was a way to keep my body from throwing the switch that lights up the big flashing SOMETHING IS DIFFERENT sign quite so often.
This is a great reminder that I need to start keeping a log of my weird medication reactions. When I’m sitting in my doctor’s office I usually forget everything I was going to say.
BTW, would you mind if I emailed you a few questions I’ve been having?
Go right ahead, Yocheved. I will warn you that depending on length, I’m not a terribly speedy correspondent – I just don’t have that much arm steam each day.
Love the picture choice 🙂 Thankfully I’ve been pretty lucky so far when it comes to side effects, but I still know that unhappy feeling that comes with new drugs (I swear they write those ‘potential side effect’ lists just to keep people from taking them unless they have no choice…). And when you realise that something doesn’t agree with you and you have no alternative till you can get another appointment…that truly sucks.
Somebody at someecards has our number for sure. They’ve had quite a few good ones for sickies! Glad to hear you’ve been mostly lucky. I have mostly tried not to read the side effects on mine in the last few years…I figure if I read them I’m just going to worry about them, and I do enough worrying about things I can’t change as it is!
That sounds like so much fun! 😉 I have read though that both fluctuating and new intolerances are common in ME, I mainly see to suffer when it comes to food rather than medicine. I’ve also read of increased sensitivity to doses and that taking wee amounts and building up is often the best way to go. It’s the unpredictability of the whole thing though which is the hardest thing to cope with, no wonder you’re wary and suspicious. I hope one day these things also settle down for you and let you lead a less anxious medical life! 🙂
Oh, IE, I would hate it if I had food troubles. That’s my one real daily joy (besides Chimp, of course). Although I can’t have hardly any salt…or caffeine, as mentioned…or alcohol, sigh, or very much refined sugar…oh well.
At least there’s always dark chocolate! 🙂
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Just a week ago I posted about a bazaar reaction I had to my codeine painkiller ( http://elizabethmilo.com/2013/01/24/codeine-allergy/). Thanks for making me feel like I’m not alone!
Also, I can’t tell you how many times my husband and I have sat in the car thinking about going to the hospital or sat in the car in the parking lot of the hospital, waiting for a reaction to either go away or get worse!
And sadly, that calculation we have to make includes not only $$$$ and energy but how we will be treated/mistreated inside that building, too.
I’ve learned in my CFS career, that our bodies are sensitive to a lot of chemicals and things in general AND those sensitives CHANGE all the time! CFS is such a more complex illness than anyone can ever understand, even US who have it and live with it everyrday!
It would be a lot easier to deal with if we could depend on some stable responses, for sure.
EXACTLY! Our bodies don’t always respond exactly the same each time.
And it stinks not to be able to reason with them!
NBPS is something I can definately relate to! I think my body is struggling with its toxic load anyway and new medication might help one symptom but it nearly always adds another stress to many other systems. My approach to medication is can it get me somewhere if used short term? How can I avoid having to use something long term? I always fear that long term medication will just prolongh my illness as my body will never get itself together to heal if its bombarded with too many foreign substances.
I feel a little bit that way myself – sort of that anything that does anything changes something…and all of us have to do a lot of weighing of what helps/what we can put up with.
I’m a side effects magnet too. Huge, unpleasant, debilitating side effects. Something is most definitely not working the way it’s supposed to. I’ve shied away from most of the medications so far, because even the supplements/herbals messed with me pretty badly. Even zinc supplements debilitate me. Sigh.
I haven’t heard many patients piping up over the years to say “Oh, I can take any old thing,” so I think we’re in plenty of company.
Yes. I’m in good company here. Paradoxical effects? Yup. Often. I’ve ended up in an ER with a rapid heart beat. I had to stop taking a medication a year ago, which I took one-half of for sleeping; it made my heart beat race. I fear this is happening to me with a lot of medications.
I have one painkiller. I can only take half a pill and I’m still up all night wired, at the computer, doing things. So now I have to decide: wired and up all night or suffer with awful muscle pain.
I remember years ago when I had to take strong painkillers and a doctor told me to take one at 9 p.m. before bedtime. I had to tell her, sorry but I have a paradoxical reaction to that. First of all, I don’t see bedtime for many hours as I’m up until the middle of the night and second, that medication makes me hyper and not sleepy. And the last time I had taken that medication I had painted my window sills! I think that doctor was shocked.
My internist, to whom I explain these phenomena, just says he can’t believe my reactions to medications — and he’s known about some awful ones.
I take halves of pills, even Allegra; otherwise, I get hyper. Pills that cause drowsiness in so-called normal people don’t really do that to me. And reactions last a long time with me, too.
So I’m down to very few medications.and I take halves.
I can’t use any steroidal nasal sprays any more. I used to use one dose on one afternoon and the following night I was still wired. The doctor’s office staff would say now spray two times twice a day, and I’d reply I can only use this once every three days. But I stopped; it was too ridiculous.
But I’m not giving up sweets, especially muffins and chocolate. Chocolate and tea are my treats and get me through the week, those and reading mysteries.
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