Category Archives: Medication

Side Effect Hell, the ‘I never noticed that until I came off it’ version

I’ve been off olanzapine (Zyprexa, to US audiences) for about two months now, and Ive noticed something interesting and different. I’m no longer constantly cold. I used to feel the cold badly, and would be seen wearing jeans and a jersey right into summer and layers and layers of jerseys and coats in the winter. Even well wrapped up on a midwinter day, I would be shivering.

In the last two weeks or so, I’ve notices that the weather is getting cooler, but my body is coping better. I’m not shivering when I have to emerge in the mornings, and I can cope with single-digit temperatures like a normal temperate climate dweller, not a tropical girl.

I don’t know why this has changed, and I can only link it to the olanzapine. It seems like such a bizarre side effect to have, but then, this is a medication that messes with your brain in some serious ways. messing with the way you perceive hot and cold is not in any way beyond the bounds of the likely with drugs like this.

It’s nice to be feeling more normal in another little way. Medication has changed so many things about me and my life, and while some of them are good, important, or even essential, there are small things that I’d rather like to reclaim. Surviving on less than ten hours’ sleep minimum would be nice (any less and naps become non-negotiable). Not shaking all the time would be downright awesome.

These things would be nice, but being sane and safe and able to function is even nicer. Having it all would be super, but I know that’s not going to be my reality any time soon. For now I’ll take the small victories.

Side Effect Hell, part dear god how many of these have I done?

Today is day 3 of amitriptyline, a word I can now spell correctly thanks to the University of Google. I have to say, I’m less than impressed.

I’m not really sleeping better, or at least not yet. But I am exceedingly grouchy, and struggling to not take it out on the people around me. Being really grouchy is fantastic right now, given that it’s my three-year anniversary today. Sigh. I spent the day snapping at people then apologising and crying. not winning.

My blood pressure has been a little kinky, so occasionally I’ll stand up and fall right back down again. I’ve been lucky so far, in that I’ve been getting out of bed and just fallen straight back down onto it.

My tongue tastes like I’ve been licking a nine-day-old corpse. It’s awful. It’s not all the time, just when I eat, and for about an hour after. Did I mention I suddenly have this overwhelming urge to snack on things? Is the universe cackling away back there while rubbing her hands together evilly?

I’ve been through so many side effect hells that I’ve actually forgotten what number I’m up to, and it doesn’t get any nicer. I’m fed up. Not much for it but to persevere and hope it gets better, and talk to the doc if it doesn’t, I guess. Now, if you could excuse me, I’m off to have my corpse-flavoured anniversary dinner with my husband and my daughter (no babysitter available = no romantic dinner for me!)

Medication hangover

For the first time in ages, I’ve started on a new medication. We’ve been gradually reducing my medication load, but removing one has had some shitty effects, including cancelling my subscription to a good night’s sleep. So we’re trying something new, because the drug I came off was my nemesis, olanzapine, and I would rather not sleep than take that stuff again.

So, to play with sleep a bit, we’ve started amytriptiline. It’s an old antidepressant, which is apparently pretty good but makes you really drowsy. That’s what I’m after, right? Right. A full night’s sleep, without waking up a couple of times for hours at a time.

Last night was the first dose. This morning? Holy hell, turn the sun down, swaddle the world in cotton wool, I have a stupidly nasty hangover. I’ve not have one like this since, well, ever. My keyboard is just a bit loud for comfort, at least until painkillers kicked in a wee bit and took the edge off.

Effects on sleep so far? Well, there was no feeling of drifting off to sleep last night, nor of slowly waking up. It was just awake, and then suddenly awake again. It’s a really disconcerting feeling. And . . . I woke up three times in the night, worse than most nights, for about the same amount of time, and I woke up an hour to an hour and a half earlier than usual. I’m not sure what kind of state I’ll be in this afternoon. It may be a nap kind of day.

This all isn’t unexpected. Starting a new med is always nasty. I’d just forgotten what it was like, after being on stable meds for so long.

Free GP visits for under-13s? Well, mostly.

One of National’s big promises this past election was free doctor’s visits for all children under 13. This is a pretty big deal for people in poverty, whose children often stop going to the doctor for anything less than an emergency department visit after they turn six. Free visits for under-13s has the potential to reduce diseases of poverty such as rheumatic fever, with early intervention preventing serious consequences.

Today it was revealed that this promise is being broken. Yes, there will be ACC funding for injured children. No, it won’t be enough to cover everyone. Perhaps 90% of injured children will be covered by the $24 per injured child of funding, but that still leaves 10% having to pay a co-payment for their care. Incredibly, Health Minister Jonathon Coleman suggests that if your child is injured and your doctor’s receptionist states that they ask for co-payment, you should take your injured child on down the road a couple of hundred yards to the next doctor’s practice. I shit you not, that’s what he said.

There are a few issues with this. First is the rural issue. If you’re in a smaller town, you don’t have the option of waltzing down the road to the next place. There is no next place. You take what you get, and you deal with it. From that perspective, this is an incredibly privileged townie idea. It denies the reality of rural and small-town life. Many poor people live rurally or in small towns, making money when shearing time or the grape harvest comes around, and living on very little in the meantime. These people often live an hour or more from the nearest emergency department, so primary care is very important in this setting.

Then there’s the issue of having a regular GP, one that has known your child since they first came in for immunizations at six weeks old. Not only do they know your child and hold al their medical records, but you are also enrolled as part of their PHO, and if you go to another practice that’s not an urgent care clinic, you risk having your whole family deregistered. Which brings me around to the next problem . . .

Trying to find another GP to take you on is next to impossible. In small towns there’s no-one else. In cities the waiting lists are horrendous, to the point where some people don’t have GPs and have to cobble together care from urgent care clinics, youth one-stop shops, outreach clinics, and emergency services. Even if you’re just looking for a one-off appointment with a doctor, rather than enrolling with them, it’s likely to be hard. Doctors are crazy-busy, and they’re likely to be filled up with their own patients.

Finally, there’s the ridiculousness of having an injured child and being told at the clinic that they don’t do free visits, and taking your child, who is in pain, and cruising off to the next place to try again. Who’s going to do that? Well, people who really don’t have any money available will have to. Yeah, you should probably know before the crisis what your GP charges, but for people that don’t go very often that’s not necessarily assumed knowledge.

Funding 90% of ACC visits isn’t that terribly bad, in that most children will be subsidised, and it is likely that most urban poor will be covered. I don’t know what it’s going to be like for those outside the main cities, though. I remember rural GP care being quite expensive when I lived rural, and I wouldn’t be terribly surprised if it’s clinics in the middle of nowhere, as well as expensive town clinics, that impose a co-payment.

Something that hasn’t been raised that interests me is that this is talking about ACC funding. What about non-ACC stuff? Is that going to be funded? Where will that funding come from, and who will it cover? I would love to know. And prescriptions were supposed to be free. Is this happening?

This is a broken promise, and one that has the potential to keep kids that desperately need primary care intervention locked out. New Zealand kids deserve better.

Depression is an avoidable cost for individuals and society . . . huh?

Back to the National Depression Initiative Q&A that I complained about yesterday, and in Question 6 we have the wee gem:

Depression is an avoidable cost for individuals and society.

Huh. So, I can see what they’re saying maybe, if we’re talking about mild to moderate depression that responds well to early intervention and treatment. The burden of disease  for these people can be, for the most part, avoided. Ten points for the health system! Cheap effective treatment. It’s a health budgeter’s dream.

This isn’t talking about mild to moderate depression. It explicitly talks about people with major depression, talking about the quality of life issues that severely depressed people have. Saying that depression is ‘an avoidable cost’ for people who have depressive episodes like mine is a cruel joke.

The thing about major depression is that it seriously affects people who have it. It’s called major because it has a major effect on people’s lives. By definition, it’s rather a big deal.

It can be mitigated by early treatment, and those who suffer from it can suffer less and lose less quality of life from this prompt treatment. People who respond well and quickly to SSRI treatment have the potential to continue to live relatively normal lives. But that’s not avoiding the cost to people – it’s mitigating it. Maybe it’s still an acceptable way to word it, I guess.

People with treatment resistant depression can look at that statement up there and laugh bitterly. for them, for me, it’s not avoidable. To suggest that it is discounts our lived experience. It doesn’t matter how early anyone caught my depression – standard treatment with SSRIs didn’t work, and trialling two or three is three to six months of getting steadily worse. Then there’s another six months of throwing everything at the wall and seeing what sticks. Then another however many months of recovering from the worst of it. It’s not avoidable. It’s just hell.

The Ministry specifically talks about those that suffer worst from depression, then ignores the ones that do not respond to the prescribed treatment they lay out. And there are a lot of people with major depression that don’t – depending on who you ask, response rates are around 40-60%, with a 30-45% remission rate (so 40-60% of people will see some change, and 30-45% will actually get better). Other sources state that up to two thirds of people with major depression do not achieve remission on SSRIs. Those are pretty big numbers, and given that the first-line treatment is SSRI therapy . . . well. That doesn’t seem to me like people who are really unwell, who don’t respond to SSRIs, are avoiding the cost to themselves, nor does society avoid the cost of their illness.

Again, the National Depression Initiative is trying to paint a positive picture, but its not an inclusive one. It makes the really unwell feel like they’re an unnecessary burden, like if they just did treatment properly and hurried up and got better, they wouldn’t be such a problem. It’s another poisonous message.

Insulin pumps – a question of access

Being a teen with type 1 diabetes is hard. Onset and diagnosis often occurs when you are young, but not so young that you don’t remember what it was like without all the pokes and prods and appointments and illness and eternal worries about management. With these memories of ‘normal’ life, combined with teenage issues like hormone changes, increasing appetite, and general pig-headedness, managing diabetes can seem impossible at times, and really bloody hard the rest of the time.

Treatment for type 1 diabetes is injecting artificial insulin frequently, as a diabetic’s pancreas no longer makes insulin. No diet or exercise will cure it, and no combination of coconut oil and flax seed will make it go away. There’s no alternative treatment. Insulin keeps a diabetic alive.

Administering insulin is not a pleasant experience. It’s not a drug that you can swallow with a mouthful of water. It requires subcutaneous injections several times a day. Blood glucose tests, using a finger prick, are also required several times a day and add to the feeling of being a human pin-cushion. Each day requires one or two injections of long-acting insulin, plus an injection of short-acting insulin with each meal, a dose carefully calculated to take into account every gram of carbohydrate in the meal and counter it with the right dose of insulin. It means that meals have to be carefully planned and snacking is right out. It’s a rigid kind of life, one that doesn’t suit the average teen, but it’s what has to be done to stay alive.

There is a newer, more awesome way to treat diabetes, though, that involves much better control of the condition and many fewer injections. Finger pricks don’t go away (yet) but the pile of needles to cart around does. The official name is ‘sub-cutaneous insulin infusions’; regular people call them insulin pumps. They have the potential to change people’s lives.

An insulin pump is a neat little device that clips onto your belt, which controls the amount of insulin that’s being dispensed. It’s connected via a thin tube to a cannula that is inserted under the skin, then stays in for two or three days. One needle, two or three days – that’s a huge improvement to a diabetic’s quality of life. It works a bit differently to the older injection routine, with long-acting insulin dispensed with in favour of a constant background dose of short-acting insulin. It’s much easier to tweak to account for snacks or bigger meals, and it can be adjusted to deal with teenage hormone cycles.

Insulin pumps are pretty amazing, and the change in people’s lives is huge. It gets rid of the embarrassing routine of having to inject in public and the hassle of trying to inject at school, the rigidity of eating patterns and exercise, and much of the worry of managing a difficult condition. It allows diabetic kids and teens to live a much more normal life, and reduces their chances of complications.

In New Zealand, we have about 2,500 under-18s living with type 1 diabetes. Across the country, there are a total of about 60 funded insulin pumps. In the UK, almost 20% of children with type 1 have a pump, and advocacy groups are working to increase that. In the US, the number is up around 35%. Anecdotally, European countries aim to have a pump available to every child diagnosed with type 1. We’re lagging behind. A long way behind.

These are life-changing devices, particularly for young people. They cost around $6,000 each, plus around $2,000 in consumables each year. How many could we fund if we didn’t have a flag referendum? How about if we canned support for Team New Zealand? Hell, we could knock $10,000 off each MP’s pay and more than double our supply of them. We could even steal some from the health budget, as better controlled diabetes now means less serious complications in the future, including savings in kidney, heart, and stroke care. It’s worth finding some room in the budget for them.

Next step forward

I went to the psychiatrist yesterday, and we’re raising the dose of one of my medications. At least it’s not a new drug to trial. I hope it works.

Things are still going downhill. I’m getting intense anxiety when I drive again. I thought I was getting over that, but it’s back with a vengeance.

I’m struggling to cope with everyday things, like cooking a meal. I melt down more often than I have in months. If two people talk to me at once, it’s hard not to curls up into a ball and scream.

The answer to everything is ‘I can’t. Please leave me alone’, but I can’t say that. I have to keep going and trying to do things, or I might get even sicker. Or something like that.

Things aren’t good, but I’m sort of holding it together. I hope I get better soon.