Avoiding a missed dose

Remember a little while back when I was talking about what happens when I miss a dose of my meds? [Tales of a Missed Dose, 22nd June, 2015]

It’s not a fun experience, and so I go a fair way out of my way to make sure that I avoid it as much as possible! Probably my motivation is just as much to avoid the unpleasantness as it is to keep on my prescribed regimen.

So, how do I do it? How do I manage my medications? What is my system?

strips, tablets, capsules

The strips. This is where the real stuff begins

Is it hard? Yes. Is it worthwhile? Absolutely! Does it get easier? Not so far.

Up until the last few months my medications have been all over the place, add one here, add one there, add one here…that went on for a while! Then the doses were changing and the psychiatrist was fiddling with timing and so on. But lately I’ve had the same meds at the same doses for a while, at least until a week or so ago, so at least I got into a bit of a rhythm with what I’m packing into my tablet box. Although then there’s the thyroxine which must be kept in the fridge, and you can only take 14 days’ worth out at a time. And there’s my lithium dose where I take two tablets every morning, but two and a half tablets on alternate nights with three tablets! That takes some keeping up with!

medication box, dosette

Blank canvas – my weekly medication box exhausted and ready to be repacked

Then there’s valproate which literally cannot be taken out of the foil stripping until you need the dose. I found this out the hard way! The problem arises because I take the lowest strength available which is soluble, and therefore designed to absorb water as fast as possible once exposed. So the first week that I packed valproate into my box, I went to tip out my tablets the next morning and had more-than-soggy valproate! In fact it was more of a glob of paste that smooshed on your fingers and fell everywhere all at once! So I had to fish out all the goopy bits from fourteen small sections of my box and throw out some of my other tablets that had also become soggy and learned my lesson. So NOW, I get out my scissors with my shaky fingers and cut out all the tablets of a ten tablet strip, fold each of the sharp corners of the square into the middle so that it’ll fit into the box compartment, then put it on top of all the other tablets, and try to jam the lid shut. P.S. DO NOT swallow the tablet still wrapped in foil! It has been done, but thankfully so far not by me. I think the sharp edges would give me the hint well before it got as far as my throat; or so I hope!

Epilim

So Valproate, I cut the strip into 10 squares, then fold the squares until they fit into the medication box with the other pills

But you’re a pharmacist, it’s probably easy for you?

I’m a pharmacist second, but a patient first. My systems and medication knowledge is invaluable in understanding my condition and sorting out my meds! In fact, I constantly wonder how people without that knowledge get by at all!! I say that because at times I feel like I’m barely keeping it together: what scripts do I need when I see the doctor (among all the other things I need to talk to him about!), what scripts do I have to take to the pharmacy to get dispensed this week, and when will I get there? What tablets are in low supply, do I have a current script for that? Have I got enough thyroxine downstairs in the fridge, an inconvenience to my medication box packing that the company did not consider strongly enough when developing their product?! Have I taken today’s tablets? Did I take the right time, like did I take the morning tablets in the morning or did I not look closely enough and accidentally take the sedating night time doses in the morning? Did I remember that I must not have fizzy drinks within two hours of taking valproate because it will dissolve much more quickly and make me drowsy? Loads of questions and loads of answers, and it’s still tricky matching them up properly!!

The many faces of scripts, handwritten, computer generated and the pharmacy yellow slip. And yes, my doctors have terrible handwriting!

The many faces of scripts, handwritten, computer generated and the pharmacy yellow slip. And yes, my doctors have terrible handwriting!

So here are my many systems.

A very short time into my Prep year, my teacher commented that I’d lose my head if it wasn’t screwed on! This wasn’t prophesy or prediction of how my life would turn out, but simply a comment on how I was then. I was only 5, but I remember it clearly. It was a kind of epiphany moment. She didn’t mean it maliciously, but it was a pretty apt saying at the time, and for quite a few years to come!

Being organised probably comes from my Dad’s side. Every week he would strip back his tradie van to the bare essentials, remove all the Coke bottles and get it stocked, clean and ready to go again. Of course a lot of his motivation was listening to a footy match on the radio on his own without noisy kids! He would come home at night and the messy house was a constant trial to his patience!! He would get up a head of steam and do a week’s worth of chores before dinner! We all just vanished into the paint work and let him get it done; making any kind of noise meant you might get a faceful of steam!! When I was in primary school, he taught me how to pack for a holiday systematically, starting from the feet and working all the way up to make sure you don’t miss anything. Shoes, socks, tights, skirts, tops, dresses, hair ties, hats etc. I used this for packing, but the rest of my life was less designed and more accidental. Rushing from place to place having too many things to physically fit into the hours of the day and accidents happening all over the place! That came from my mum. Surprisingly, since my mum’s mum is uber organized. Forgot my lunch, forgot my jumper, left my USB with my presentation at home, missed a deadline etc! None of this really taught me the life lesson you would think it should!

boxes, bottles, tablets, capsules

The real deal, all of my many tablet boxes and one bottle…and there’s one box in the fridge

Studying pharmacy was a revelation to me, and it really has gradually changed my approach to life. So has the last 12 years with my now-husband, who is very systematic and had taught me a lot about being organised. Pharmacists have to be so systematic that there is almost no possible way that an error can occur. Each of us has to work out our own system that doesn’t fail when curveballs come out of nowhere, but is a failsafe as much as possible. I’m not going to go through that because its tedious from the outside, but next time you’re waiting in a pharmacy, and they’ve told you the script is going to be 10 minutes even though that’s not possible, and you’re wondering what they’re doing, distract yourself wondering how that pharmacist is ensuring your health and safety.

pink bag, surprise, treat

Bag of medications disguised as something pink and desirable! Cunning

So my medication taking has become a system. It didn’t start that way, because at the start I was on one antidepressant. That doesn’t take a lot of managing apart from remembering to take it! Then I was on two antidepressants, one in the morning and one at night. That took a bit more remembering. Then the pivotal moment when I was diagnosed with bipolar and started on a mood stabilizer, and another one, and another one. It got too much to keep in my brain, so I took the old person option and got myself a medication box so that I could make up a week’s worth of pills at a time, and stay ahead of the game, instead of waking up in the morning to get ready for work, and finding I didn’t have any more of a tablet! Having to squeeze a trip to the pharmacy into my already tight getting-to-work schedule was essential, but stress-inducing!

medication box

Nearly done, got to visit the fridge and fold the silver squares

I have an up-to-date medication list that I’ve written on the back of the box, and that I keep a copy of in my handbag, and a copy of in the NPS Medicines app on my phone, and which I update after every doctor’s visit if any medication changes have happened. This is vital. If anything ever happens, the first thing your hospital pharmacist will ask for is your medication list. Having it up to date means increased safety for you. That’s the most important thing. We don’t want to give you something that will make you worse by allergic reaction or by interaction with your current meds or your medical conditions.

medication list

The ‘official’ medication list, updated every doctor’s visit…maybe I should type it out to make it look less made up!

Every week when there are only a couple of doses left in my box, I repack it according to my list. I cross check each tablet as I pack it, i.e. I take venlafaxine 450mg, which is 3 capsules of 150mg, so I check the list and pop out that many tablets. It sounds so easy, but an error right there could be catastrophic. Cross checking makes sure every prescribed medication ends up in the box, in the correct amount, at the correct time of day, every day. So I sit up on my bed and surround myself with boxes and strips and bottles, my list and my box. It’s actually a satisfying job, ticking each med off one by one and ending up with a neat and tidy box of lifesaving pills. I end up with a massive pile of rubbish, mostly in the form of popped out strips. Pharmacy isn’t exactly a green industry; the medications demand certain wrappings and changing that order would be unsafe.

medication box

Ready to go! Time to concentrate, accidents do happen but good idea if they don’t!

Unfortunately the names of the days have rubbed off the box and remembering the order wasn’t working so I had to relabel the medication spots. I ended up writing AM or PM as well, because a couple of times I’ve taken the morning medications at night and ended up not sleeping for hours, or taken the night meds in the morning and been doped out all day! That was because I started checking on autopilot and not really checking. So now reading the label of the dose reminds me, hopefully, whether I’m meant to take that dose or not.

System change #71! Always updating and changing to improve my safety

System change #71! Always updating and changing to improve my safety

Forgetting is a big part of my life now. I start a story and can’t remember why I was telling it, I can never remember names, I forget a conversation from earlier that day, and many other things. Pity help me if I get to 80!! My husband will have gone mad by then! So I have alarms. I’ve always done this since I only had one med. First it was an alarm that you switched off. Then I’d forget all the same. So I changed my alarm to being able to be snoozed three times. I’d snooze it three times, and forget! Procrastination much?? So I found the NPS (National Prescribing Service) excellent Medicines app and put some alerts in there for the morning and night. These can be snoozed endlessly so I know that it won’t let me forget!

reminders, alarms

The cool app from the good folks at the National Prescribing Service – recommended!

When it’s time for my tablets, I go to the box and look for the day and the time. I tip out all the tablets, and take the foil off the valproate. I count the tablets against the mental dose list, or actual dose list if I can juggle the tablets in one hand and box in another. I check that each tablet for that time of day is there, and in the right dose then scull them! My husband hates this, he thinks that I should take them one at a time, but that would take forever! I’d rather just get them down as quick as possible.

20150520_093805

I’ve developed a new system now. My alarms go off at 8.30am and 8pm. I’m meant to take my tablets when the alarm goes off, but however systematic I am I’m still a procrastinator. I know that my tablets are keeping me in the good life, and that without them I’d be in all kinds of awful, but there’s still that little part of me that doesn’t want the tablets, because it doesn’t want the illness! A small part of me that has the hopeful thought that maybe if I don’t take them everything will just go away. Of course that’s ridiculous! But it’s just how it is. So I snooze, and snooze, and snooze. Ridiculous and childish but there you have it! I can’t imagine how much more difficult it must be for people who don’t acknowledge their illness, are in denial, believe the medications are evil or unnecessary or poison, or are being medicated against their will.

My husband does a good job of asking me if I’ve taken my tablets, but my memory is absurd and I remember taking my morning tablets and say yes I’ve taken my night tablets. A couple of times I said yes yes, and I hadn’t taken them. So now, once I’ve taken them, the lid stays up, I don’t clip it down again, and so both of us at a glance can tell if I’ve taken them or not, no confusion.

Some are empty, some are closed and it helps me keep track and avoid slip ups

Some are empty, some are closed and it helps me keep track and avoid slip ups

Well that’s about all my systems. I try to avoid anything that relies on memory, and try to have a clear, repeatable, systematic way of keeping well. At the end of the day, its fingers crossed and trust in all the steps that have been taken to take care of me.

Hope you enjoy the pretty pictures!

Tales of a missed dose

[Written 16th June 2015]

This is a story of what happens when I miss a dose of medication.

What happens depends whether I miss a morning dose or an evening dose. As I write this I’m suffering from missing an evening dose so let’s go with that.

At night I take several tablets: quetiapine, lithium, valproate, rosuvastatin, pantoprazole. Mood stabiliser, mood stabiliser, mood stabiliser, anti-cholesterol, antacid. Yes, it takes that many stabilisers to keep me going!

In the morning I take thyroxine, venlafaxine, Levlen, valproate, lithium. Thyroid hormone replacement, antidepressant, contraceptive, mood stabiliser, mood stabiliser.

All done! Hopefully...I'll still count the tablets out every morning and night to double triple check

In terms of missing a dose, lithium and valproate aren’t the worst to miss as a patient because I’ll be taking some again soon. This is not an official pharmacist, GP or psychiatrist recommendation! Lithium and valproate should ALWAYS be taken twice a day, as close as possible to 12 hours apart for the best effect! And I repeat! This is because for lithium a healthy person’s kidneys clear it out of you in that time frame so to keep a steady level you should take it consistently. And for valproate it’s your liver. That’s why you should respect these two organs very highly! They are very important. But what I’m meaning is its not the worst in terms of the adverse effect of missing a dose. If I miss taking lithium at bedtime, I take it first thing the next morning which gets it back in my system before I physically notice that it even left. My overall level will be a bit lower for a few days which isn’t ideal, but it will work back up to speed soon enough. And I do have a level at least.

Whereas for medications that I take once a day, I’ll miss the effect for 24 hours. Which sucks. Plainly and simply!

boxes, bottles, tablets, capsules

Quetiapine is one of the once a day tablets. It is prescribed to me to prevent mood swings, reduce my anxiety and has the handy effect of giving me a good night’s sleep. It was doing this a bit too well for some months there and I was doped out all of the time, but my awesome psychiatrist recommended a change in the times I take it and we’re back up to speed. Yes!

So, do I get a mood swing if I miss one dose? No. Really not. The chemistry isn’t that reactive. In the same way that it takes weeks of first taking the medication to get the benefit, it takes longer than one day to mess up the whole thing. But I do have a rough day afterward, and a rough night too! It’s a bit like I’m sitting in my car going along nicely and I know where I am and where I’m going and how I am and suddenly another car rear ends me, or bumps into the side of my car at a right angle. Slowly of course, not fast. So my mood just takes a hit, a bump and suddenly I’ve jumped along or across and I find myself somewhere other than where I just was, a bit disorientated about how I got there and sort of catching up with what just happened and where am I now and how I am and are we still okay? That following day I may be in quite a different mood from the one before, either peppy and edgy and anxious and manic, or slow, and silent, and flat and a bit away with the fairies. But that doesn’t qualify as a mood swing, just a sudden small change that affects my day.

After missing a dose here and there I have now gotten the side effects of missing my nightly dose of quetiapine down in a pretty clear timeline. Yes, there are side effects from NOT taking your tablets, as much as taking them. Something to consider.

So here’s the quetiapine absence timeline.

strips, tablets, capsules

10 to 11pm: I can’t get to sleep.

This is a terrible thing. I need my sleep. Always have, and always will I guess, but especially since I’ve been sick. So does everyone, I realise. If I don’t get a good night’s sleep the next day is a struggle, emotionally. So I toss, and I turn, and I turn, and I toss. After an hour of this, if I’m alert enough, I’ll think to myself, self, why can’t I get to sleep? I usually go straight to sleep! Then I’ll look in my pill box, see my tablets, mentally or physically hit myself in the head, take them and all is good in the world. Just like that. If I’m not thinking too clearly, I might think to take a Valium and at least get some sleep. If I’m dull-witted, which is at least half of the time, I’ll eventually wrestle myself to sleep. It sounds funny to say, but I’ve become very good at putting myself to sleep. I nap most days from necessity, and there is a skill involved in going from activity to sleep in a short space of time. I guess shift workers eventually excel at this sort of thing. So I’m quite adept at getting myself in a comfortable position, getting the temperature right (cannot sleep well unless it is right!), darkening the room, doing a conscious relaxation of as many muscles as I can, and stilling my mind into sleep.

Say I managed that. Next time check?

3am. Yep, wide awake, fresh as a daisy, ready to go at 3am. I toss, and turn, and can’t get comfortable, and I’m restless and my poor husband is rocking and rolling every time I turn and I’m messing with his sheets, and he has to go to work tomorrow even if I don’t, so I try to lay still and physically can’t! Why am I awake, I’m usually asleep, what is happening, oh….ahhhh! Tablets! I forgot them! Duhh! I hate that moment! I try to do my utmost to prevent it, but it still happens and it does feel like a failure every time I somehow mess it up! So, should I take them now? The dilemma! It’s 7 out of 12 or 24 hours through the medication time period. So I can’t take all of them. Maybe just some of them. Can’t take quetiapine, I’ve missed the boat on that one otherwise I’ll sleep all day. And I’ll be taking lithium and valproate soon anyway, and can’t double dose. What about the rest? Which are nothing really, in the scheme of me being wide awake at 3am! Cholesterol and stomach medication. Sure I can take them, they should be taken regularly but it’s too late for my sleep. The next dilemma then: try to force myself to sleep again, or just get up, take my laptop to the spare room and do something else? Who knows? Depends what I’ve got on the next day really. I can never decide!

medication list

8am: I’ve finally given up the ghost on sleep so I’m up and peppy and full of life and only just partially anxious and ever so slightly manic and energetic and going to run the world! If I haven’t already taken one to sleep, now is the time for a Valium to wind back the jets on being super woman and achieving all my life goals in one sweet day! And talking my husband’s ear off and planning one hundred chores like a complete going through of the entire kitchen plus 3 loads of washing on a rainy day and lunch with girlfriends and all kinds of magical things. ‘Woah, says my husband, that’s too many things for today. No do that another day, you’ve got enough things for today. How about you sit down for a minute, what about some mindfulness? I think you should do some mindfulness…how about you go and do that now?’ At around about this point I have now blown my nose for literally the THIRTIETH time since waking for the final time. THIRTY. You just can’t blow you nose till it feels empty; there’s always residual. And it’s pretty much like a tap. The medical term is rhinorrhea, like diarrhea but your nose is melting and there is a constant liquid dripping, dripping, dripping!! Quetiapine dries you out like anything so you get dry mouth (and want to drink Coke all the time!), dry nose which leads to sores and blood noses, some degree of constipation which no one wants to know about and some urine retention. The last one isn’t noticeable on any other day, until the missed dose day and then I realise that yes I really have been holding back! TMI I know, but you wanted the whole story right?

But the nose thing really gets me! If I notice nothing else in the middle of the night, I do notice my nose dripping incessantly! It’s an instant giveaway! It’s different to regular waking up in the morning and blowing your nose. It’s more like hay fever without the sneezing but the medication to stop it cannot be taken til nighttime!!! Cue fierce under breath bursts of ‘idiot’!

And then it’s just getting through the day like usual, but bearing well in mind that you’re a bit high today, a bit edgy, a bit fiddly, a bit anxious, a bit overstrung so remembering to breath, relax, calm, easy, gently does it. And I should mention that the other things ease off too, just not in such an obvious diagnostic way. I have the right amount of saliva in my mouth (who knew that was a thing!) and going to the toilet is a breeze, like really easy, like maybe a bit too much and too many times! So happy thoughts!

medication box, tablets

Now the morning lot and venlafaxine. Anyone who is involved in the prescribing, dispensing, and before too long taking venlafaxine knows about the withdrawals. It’s described in the textbooks and it happens like the textbooks. Exactly like. I used to think this was pretty cool. I still do theoretically, but in practice I either love or hate that they’re so reliable and unavoidable. I love them if I notice it before I’ve left the house for a work day because I immediately fix the shortcoming. I hate them if I notice once I’m already on the way to the bus stop and I don’t have time to turn back, or I’m on the bus, on the train, on the tram, in the building. Then it sucks because I know what’s coming and I can’t do a thing about it! Unless I can get to my doctor for an emergency script but that means paying full price, and after all it’s nothing life threatening. Not bad enough to pay three times the normal price! And believe it or not borrowing stock from the shelves is not strongly encouraged by my employers nor is it in any way legal!

What the symptoms/adverse effects of missing venlafaxine are: electric shocks/tingling in your fingers, light headedness/feeling like my head is spinning/wondering if I’ll faint, nausea. Nothing fun. Nothing dangerous. They don’t make for a good day, and I have to wait til the next morning to fix it! More banging of palm to forehead and severe muttering to oneself!

So that the what. The why is a whole other adventure and I don’t have time today, but hang in there and soon we’ll have another chat and look at the other part of the problem. Chat soon!