Think back, if you can, to 1995. I’m 20 years old, and so far I’ve spent much of university life acutely depressed. I’ve somehow just about kept myself alive into my second year, and even managed to submit my essays on time, but there’s been little joy in my student experience. I don’t socialise much. I’ve spent most of my time at home, consciously squandering it on video games, trying not to feel. Eventually, I pluck up the courage to see the practice nurse at Student Health Centre; I really have no idea where else to go for help. She is all breeze and bustle, whisking me from reception with the words, “Right then! What are we suicidal about today?” I freeze. How can she tell? It is only when I manage to mumble, “I don’t know, I just am,” and see her face change, that I realise it was a line, an ooh, you students with your personal dramas! throwaway opener she uses with everyone who looks upset. I am quickly passed on to the GP, who listens for a bit and informs me that in her opinion, I ought to see a psychiatrist. She hesitates, however, adding that I needed to consider that if I do, a Psychiatric File will be opened up on me. I have no idea what she means by that, and whether it’s as grave an issue as her tone suggests, but frankly I don’t care. All I want is to see the person who will give me the pill to make me well. I want someone to fix me.
A few weeks later, I am sitting with psychiatrist. Only, he’s not fixing me. He’s asking me loads of questions I don’t want to answer, about my past and about my present (and writing down who knows what, presumably to go into the File). I really don’t want to answer his questions. I’m not interested in rehashing my childhood, I just want to be given the right drug, so that I can go away and take it, and feel better.
18 years on, I’ve taken plenty of drugs. I’ve tried every class of antidepressant; antipsychotics, old and new; beta blockers; hypnotics (sleeping tablets); benzodiazapines; mood stabilisers; anti-epileptics. I’ve taken one at a time, combinations of several, big doses, small doses, and I’ve swallowed some sort of psychoactive drug every day since the year 2000. And guess what – in all that time, I still haven’t found my magic pharma sticking plaster. Instead, I’ve learned why my attitude in 1995 was so misguided; what the different types of drugs do; how to talk about them with doctors; and where they fit within an overall treatment package. If you are newly diagnosed and about to take psychoactive drugs for the first time, or even if you’re an old hand but have a medication change in the offing, here are some hard-learned dos and don’ts of mental health medication.
Don’t expect your medication to be a magic bullet/wand. While it’s true that some people are lucky enough to achieve complete symptom relief from their medication alone, they are probably in the minority. Most people still have to actively work at keeping at least some of their troublesome symptoms at bay. For example, they might seek to avoid stress or other triggers; keep to daily routines; exercise or involve themselves in the creative arts; make use of cognitive, mindfulness or distress tolerance techniques; and so on. Good drug therapy will hopefully reduce or relieve your worst symptoms, but is likely to be just one component of your overall treatment or recovery plan. Maybe you’re not taking medication as longer term strategy, but have been prescribed “as required” drugs (for example, hyponotics, benzodiazapines or antipsychotics) for crisis situations. They can be a wonderful help, but remember that you are still going to have to manage your distress in the window between swallowing your med, and your digestive system processing it, and getting that drug into your blood stream.
Do ask questions if you’re not sure about anything. It’s easy think you’ve got all the information you need in the consulting room, only to find some major gap in your knowledge once you’re walking down the corridor with a prescription in your hand. Do you have any outstanding worries about side effects? Are you sure what time of day you should be taking your medicine, and whether you should take it with food or water? Do you know what to do if you accidently miss a dose? If you have any nagging questions about your meds, contact your doctor or ask a pharmacist, to get them addressed.
Do expect things to take time. Lots of time. Prescribing drugs for mental health is in many ways a trial and error process. Most GPs and psychiatrists will take the approach of starting with a “frontline treatment” – a frequently used drug which is known to have a good track record in treating your particular diagnosis. This could well be a drug recommended in your NHS Trust’s clinical guideline, and/or the national NICE guideline, for your condition. You may initially be started on a relatively small amount of the drug (especially if it has a lot of side effects, or might make you very sedated) and be given a series of increasing amounts, so that the dose can be gradually and incrementally adjusted (“titrated”) up to the intended therapeutic dose. Once at the desired level in your system, it can still take 3-4 weeks to be able to tell whether the drug is working as your doctor hopes. It can be difficult to cope with this period of waiting for relief, especially if your symptoms remain severe, and/or the medication gives you side effects before you see any improvements. If after a few weeks you are not experiencing much benefit from your medicine, your doctor may consider increasing the dose to see whether this increases effectiveness, which means another wait. All in all, getting established on a new drug can feel like a very slow process.
Some people will respond very well to the first choice of drug; others may find that even after being patient and increasing the dose, it still doesn’t target their symptoms well enough, or has side effects which are just unacceptable. At this point, you and your doctor may wish to consider a different drug. Sometimes you can stop one drug immediately and start a new one right away, but some medicines are dangerous to suddenly stop, while others can’t be started while you have another drug in your system. This means you can find that you have to gradually come off Drug 1 before you can start Drug 2. Sometimes they can be “cross-tapered”, which means you can gradually increase Drug 2 at the same time as gradually reducing Drug 1. Each medication change will again take weeks, first to switch the meds and then to see if the new drugs are an improvement. Family members and employers can find it hard to understand how lengthy the whole process is; I often say that it’s so slow, I feel it’s a bit like turning a tanker ship around. It’s probably more useful for them to think in terms of a few months to achieve stabilisation, rather than days or weeks.
Don’t take risks with drug interactions. Certain drugs mixed together can have nasty, even life-threatening, interactions. Your doctor will know what you are taking and will make sure any meds s/he prescribes are compatible, but medicines sold OTC (over the counter) at chemists or supermarkets are also drugs, and it’s surprising how many commonplace household medicines can be a problem. For example, I’ve taken antidepressants which couldn’t be mixed with decongestants, so I couldn’t take any cold or flu remedy for years. I currently take lithium, which is unsafe when combined with non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen, which I used to take regularly for back pain. To be safe, it’s always advisable to check with a pharmacist whether your OTC med can be taken alongside your prescribed drugs.
Do expect side effects. Psychoactive drugs may be prescribed for their benefits to the mind, but the side effects (also referred to as unwanted effects) are often very much felt in the body. When a doctor offers you a particular medication, they should be clear with you about what the main side effects are. Known side effects are often expressed in terms of how many people taking the drug would be expected to experience them. For example, a side effect experienced by more than one user in ten would be considered a common side effect. Side effects occurring in fewer that 1:10 users are considered uncommon, while rarer side effects may affect only 1: 100, 1:1000 or even 1:10,000 people taking that drug. Of course, there is no way of knowing which of the known side effects you will experience – you could experience several, or none at all.
Ideally, you should be given a PIL (Patient Information Leaflet) which explains the benefits of the drug, as well as its more common side effects, before you have to make up your mind whether this particular medicine is right for you. Many NHS Mental Health Trusts also subscribe to Choice and Medication, an excellent online resource which should answer most of the questions you might have about a particular drugs. In addition, some Trusts have a telephone helpline you can call with any questions or concerns about your medicines. Drug company information leaflets (which should always be enclosed when you pick up your drugs from your pharmacy) will also provide information on the full range of side effects, including the much rarer ones. Drug prescribing is a balancing act; you and your doctor should be aiming to get the maximum beneficial effect with the minimum possible side effects. Sometimes people find that the side effects plainly outweigh any possible benefit, but mostly the reality of life on medication is a that it’s a trade off. For example, at the moment, I feel the control of my highs, the improved sleep and the decreased nightmares that my meds bring are just worth the discomfort and stress caused by the muscle twitches, hair loss, digestive problems, extreme thirst and sedation. But only just. If one more side effect were to be added into the mix, I might have to re-evaluate and consider whether I still felt the same way. Hence…
Don’t be a hero. Some side effects are to be expected, but there’s no need to put up with more than you can handle. Nausea and even vomiting is one thing; not being able to keep anything down is another. Feeling somewhat sedated might be manageable; being unable to cross the road safely is something else entirely. Online networks can be a great place to find tips and tricks from people who’ve been through similar difficulties (would I have persisted with lithium, without Twitter advice to alleviate the nausea by swallowing it with starchy foods? I’m not sure), but if nothing’s working, it’s time to seek medical advice. PILs often suggest that if you experience any of the rarer side effects, or there is no easing of more common side effects a few weeks into treatment, you contact your doctor as soon as possible (preferably whoever described the drug) to talk through whether that medication is right for you. Giving medications a chance to start working should never be confused with trying to tough it out with something very difficult or frightening.
Don’t compare yourself with others. The same drug will affect different people differently – and not just mental health drugs, but prescribed drugs in general. You’re on 50mg of your antipsychotic and feeling totally zonked, while your friend’s on 1000mg and complains they still can’t sleep? Irrelevant. There’s no such thing as a “lightweight” where prescribed medicines are concerned. You’ve read of people with horrible side effects, but you feel physically normal? Doesn’t mean it’s not working, and there’s no definitely no need for “side effect survival guilt”. For every drug you can think of, there will be someone out there who thinks it’s saved their life, someone who thinks it’s ruining theirs, and someone else who feels ambivalent about it. As with childbirth, it’s probably best not listen to the horror stories of battle scarred veterans, if you can possibly help it, but to keep an open mind, and approach each new drug in a spirit of optimism.
Don’t fiddle around with the dose unless agreed with your doctor. Most people prescribed drugs for physical conditions probably keep taking them despite the side effects or restrictions on their lives (such as not being able to drink alcohol, drive, or stay up late). People with mental health difficulties, however, have a bit of a track record of tinkering with their doses and even just stopping their meds all together. One problem is the “Oh, I Feel Better Now!” Factor. Common in people with depression who start on a prescription for antidepressants, OIFBN! kicks in about the same time the drugs do. Rather than recognising that it’s the drug causing their mood to lift, people often tend to assume they have got better by themselves, and didn’t need the drugs in this place. I freely admit that I fell into the OIFBN! trap last year, when I failed to recognise that I had become hypomanic, and that if I felt wonderful it was because of mood fluctuations, not because I was “better”. Because I felt so great, I started reducing my medication, knocking me further off course, and the episode spiralled.
The opposite problem is the “They’re Not Working, So There’s No Point” trap. TNWSTNP also tends to occur in the early stages of treatment, at a point before many therapeutic benefits could even be expected. It’s always hard to wait several weeks for those benefits to kick in, especially if you’re in a lot of emotional pain. It’s also tough if you’re experiencing side effects, many of which are worst at the start of treatment. Couple that with the fact that we know depression skews people’s thinking, making us more likely to see treatment plan as hopeless and ineffective, and it’s no wonder then that so many people ditch the meds after only a few days or weeks, but – don’t! Hang on in there.
Do keep track of your prescriptions. There’s nothing more horrible that realising it’s a Bank Holiday weekend, or you’re away from home, and you don’t have enough meds. I’ve done my share of running round my local area looking for a pharmacy that’s open late at night, or on Boxing Day, in the desperate hope that they will give me a few days’ emergency meds until I can get to my doctor and obtain that Holy Grail: the repeat prescription. I don’t want that stress anymore. If you’ve a holiday planned, or there’s a Bank Holiday weekend coming up, check and check again if you’ve got enough meds to tide you over. One huge benefit of always taking your prescriptions to the same pharmacy, is that if you are caught short without a repeat prescription, they are much more likely to issue an emergency supply based on their records of your drug history.
Don’t stockpile meds if there’s a chance you might overdose. Not taking a particular drug anymore? Drop all those unwanted pills back to the pharmacy to be destroyed. If you’re worried about the overdose issue, mention it to your care team, and consider getting the minimum you can practically work around dispensed to you (a week? a fortnight?), rather than the standard 28 days or 3 months. If you’re still concerned, find someone you trust who can take anything more than a few days’ worth into protective custody, and give you more as and when needed.