Sunday, 19 April 2009

Coming off medication

This is an article I have written for Mental health today
Follow this link to find the original and feel free to place your comments below

Coming off medication

There are two main reasons for coming off medication – you no longer need it, or you are finding the side effects outweigh any benefits from taking it. In that case you are likely to be changing your medication either at the suggestion or at least with the approval of your consultant.

Coming off medication because you feel you no longer need it is trickier. And it is here the opinion of the “patient” or “service user” most often differs from that of their consultant or mental health team. “Patients” or “service users” are all too often told that he or she needs to take medication for life.

You may feel you no longer need medication because you have sorted out the difficulties that led to your mental health problems and your circumstances have changed. Nonetheless most mental health problems occur against a background of poor health in other areas.

Coming off medication safely means everything else has to be right. This includes being in the right surroundings or environment; being physically as healthy as possible, exercising, not smoking or drinking; having supportive relationships at home, and in the workplace; having good strategies to manage whatever life throws at you, having enough challenges but not excessive stress; and being able to be true to you. Under these circumstances the mind can heal, and with healing comes the possibility of a life without medication.

The nuts and bolts of coming off.

Make sure your life is as good as it can be and that your original problems have resolved.

Psychiatric medications are powerful chemicals that affect the brain. Over time the brain gets used to the presence of medication and adapts. This adaptation means that medication may become less effective and that person needs either more or a different medication to get the same benefit. Nonetheless, even if a medication no longer has an affect, it is in the clockwork and you need to take this into account.

If the supply of medications suddenly stops, the brain is affected. Therefore whatever you decide to do, do not suddenly stop your medication.

Psychiatrists and mental health teams are gradually coming round to the idea that people can come off medication. Not all of them but I am hearing of more psychiatrists who suggest people take for example, antipsychotic medication for “a couple of years” rather than lifelong. Before starting to come off your medication, it is best to talk to your psychiatrist and mental health team to see where they stand and what advice they can offer.

There are three main ways medication affects people
Drugs that are addictive. These cause cravings and severe difficulties when you come off them. These include benzodiazepines, such as Valium (diazepam), lorezepam, zopilclone, and most sleeping medications. They also include barbiturates and heroin or morphine based drugs such as pethidine, codeine and tramadol. Also in this group are for heavy drinkers, alcohol.

The choice with addictive drugs is whether to stop suddenly going “cold turkey” or gradually the dose over time. If you want to go “cold turkey” it is best if you do this under medical supervision because “cold turkey” can cause significant medical problems.
The alternative is to reduce the drug gradually. The difficulty with this approach is the cravings continue as long as you are taking the medication and for some time afterwards. Physically, gradually reducing the dose, is less demanding.

Drugs may have a “Withdrawal Syndrome”. This is less severe than for an addictive drug but is nonetheless unpleasant. Drugs with “Withdrawal Syndromes” include antidepressants, such as fluoxetine, paroxetine, cipramil and venlaflaxine, as well as atypical antipsychotics such as quetiapine. In these cases, it is best to reduce the dose slowly, over a few weeks and again, you are best to do this with the help of your psychiatrist

Finally there are drugs that do not fall into either group, yet still need to be treated with respect. Lithium is the most widely used example. No one craves lithium! But stopping lithium suddenly is dangerous. Up to 80% of people will have a sudden relapse within three months. The pioneering work on this subject was done by Balderassini in the 1980s where he showed that people who came of lithium suddenly were at greater risk of relapse than those who came off gradually. The difference in relapse rate between those who stopped suddenly and those who tailed off over six weeks were still there three years later.

Personally, I believe that if you want to come off lithium you must prepare to do so over at least three months, and ideally a year. Lithium more than any other drug gets into the clockwork and has its effect on the RNA of the cell (that is almost at the level of the DNA). Such a drug needs to be treated with respect and under almost no circumstances should you stop it suddenly.

In conclusion, brains have been around for millions of years, very few mental health conditions are due to of a lack of medication. Nonetheless, medication can help get us through bad times. If you want to come off medication, everything else in your life needs to be right from your physical health to being happy within yourself. Ideally, the more people you have to help you the better, and listen to their advice. Talk to your psychiatrist about it and whatever you do, take it slowly and carefully.


rob said...

Hi Liz,

thank you for this. Sometime ago (years in fact) I came off an antipsychotic drug that had been prescribed following a manic episode. The drug was the only one I was on at the time (I did not consider lithium or similar drugs).

your writing on this is spot on.I wish I had read it when stopping. I did however go very slowly over 18 months and whilst I had one further manic episode that meant hospital and more drugs (only for a two month period), I am now medication free and have been for some years.

Thinking about the reasons to stop, addressing any issues that may be unresolved and getting life in general as good as possible are certainly needed. I also think it essential that a person has an understanding that they have been ill in the first place.

Dr. Liz Miller said...

I agree Rob - illness is a response to your circumstances, not something that happens at random.

And illness is real! I am not a Langian who believes it is all in the mind. However, I also believe that the mind is the result of our highly developed brains and these can be damaged. In the same way as if you poured battery acid on your computer, not looking after your mind and body properly leads to malfunction or illness.

There are times when we have very little control over what happens to us, for example as children, or through poverty. These times pass and we have to help each other through the difficult times.

Well done

Anonymous said...

Lithium - just bad. Took it for little over 2 weeks and stopped cold turkey - drug is the Devil. Honestly. DON TAKE THIS DRUG EVEN IF YOUR DOCTOR SAYS TO. It ruined my life, you dont even know. NEVER take this drug. On it, I felt more depressed and lethargic in the last 2 years than anything. I was unmotivated. DO not take this drug.

Dr Liz Miller said...

You also need to work out what was going wrong that someone felt you needed lithium!

Lithium does work for some people, nonetheless I don;t think that we are born with a lithium deficiency. I do believe that things happen in life that we do not manage as well as we might and that can make us ill.

There is always a reason you feel the way you do, and part of the difficulty is finding out why you feel the way you do. Drugs may seem to help in the short term, but they are not the answer!

Also please note you were only taking it for a couple of weeks, if someone has been taking it for longer they must reduce the dose VERY SLOWLY! over months, even years, NEVER STOP LITHIUM SUDDENLY

Anonymous said...

I have recently (Jan) reduced from 1000 mg to 600mg as I was told I had toxic levels in my blood. After a blood tesy I was informed that I was not at a theruputic level and I should increase again. I was not happy to do this so remained at 600 mg and have been told that since Jan I have not been at a theruputic level and I feel fine. My Dr suggested I just stop it I had to tell him this would be dangerous as I have been on it for 15years. He googled it and agreed with me...idiot ..imagine the damage he could have caused had I followed his advice. I intend to reduce to zero over the next few months.Wish me luck guys it's a scary but good thing to have to do but I'm in a good place with my life ,both family friends and partner all support my decision and promise to let me know if I go off the rails.

Dr Liz Miller said...

Thank you for your excellent contribution - You are quite right to be cautious about coming off a drug you have been taking for 15 years. Balderassini's original papers showed that people who stopped lithium suddenly were still suffering higher rates of relapse two and three years later, when compared to people who came off more gradually.

When I stopped lithium, I did so over six months, even though I had only been taking it for two years. You cannot stop it too slowly. The trick seems to be to cut down very gradually 50 - 100 mg every two to four weeks depending how you are. If you feel "strange" in any way, stop reducing it, keep your dose the same or possibly fractionally increase it again, until you are back on an even keel for at least a month and then start reducing it again.

Most important, you need to get everything else in your life as good as possible
Health - exercise, healthy diet, inclding omega 3 fish oils, no alcohol or processed food
Relationships - good supportive people around you
Good and healthy surroundings
Strategies - know how to manage your mood
Self - make sure you are doing plenty of things you enjoy!!

and then - you can think about coming off medication. Good Health is the key to success, and good health is a combination of the above.

Good Luck and keep everyone posted on how you get on

Anonymous said...

hi liz
i have been on lithium for just over 20 years , the first 6 months was hard i felt sick put on weight .but i wanted to give it a go . and it has
been the best years of my life ,i have not been in hospital while on
lithium . iam only going off now as i have kidney failure . but i have
changed my life , i no longer drink or smoke and i move away from stress today . so iam praying all goes well mav .

Anonymous said...


This article has been very useful to me, as i dont think there is enough awareness/acceptance of mental illness in general. I Had a quick question, can tremours in the hands be linked to meds? im connecting the two because i didnt have this problem before i started (epilim chrono)

Other than that the meds help, but would like to be med-free in the future :)

Anonymous said...

I have been on lithium for over 2 years, and am coming off it because aswell as other symptoms, I have had major dental problems. Has anyone else had dental probs due to lithium intake.

Anonymous said...

Hi I Was taking 1400mg of lithium a day ,ended up in hospital toxic now I've stopped it ,its been a week I really don't feel well body pain sickness skin cralling hot flshes anprickly skin stumuk pain an pankicky feeling is this normal feel bit confused an tearful please help. Thanks Kay xx

Anonymous said...

How do I get the answer to my question Kay

Anonymous said...

I have been taking it for 8 years and I have alot of dental problems but I thought it was because my love for Mountain Dew lol I am tryin to get off it myself now but kind of scared to because I have heard of people having serious problems from quitting it

Francisco said...

I have been with lithium for 17 years. Although i didnt go to hospital or had any maniac episode, i do have problems with depressions and get frightened very easy.

I am thinking about coming off to lithium becouse i believe is not letting me dig inside myself and see what am i so frightened about.

Dr Liz Miller said...

Coming off lithium can be tricky - it gets into the clockwork.

You need to be sure that everything in your life is going well and that you have strategies to cover any eventuality - I have to recommend my book
MoodMapping by Dr Liz Miller - because it gives tools to help measure your mood objectively and strategies to manage your mood

Everything in your life needs to be as sorted as possible with no major stresses

You must do it slowly - dropping by as little as 100mg a month - breaking the tablet into pieces if you need to
if you start feeling "odd" keep on the same dose until you feel normal again

Any haste at this stage risks a recurrence, regardless of how stable your life is in every other area - also you may want to keep on a tiny dose for ever - Lithium is an essential mineral!!!

Also in dealing with anxiety - read the first part of the book Spark - which is about the role of exercise in managing exercise - brilliant first half, rubbish second half ;-)

Anonymous said...

I have recently had an experience with lithium which has made me question all my assumptions. I have been on lithium with Clilift / citalopram for about 11 years and believe lithium saved my life. I mainly suffered from cyclical clinical depression one week on, week off with a past history of hypomania. As far as I know I have never been delusional. So far, so type II. When hypomania I can get irritable, defiant, mildly grandiose, never shopping binges or hypersexual.

For the past 2 years I have described myself as in recovery or in remission and generally happy and resilient. I have nonetheless been comfortable and accepting that I would take chronic meds for life. I am also in therapy, with the same therapist for seven years, frequently mood map, using the app Optimism. In the last month I have had to walk my dog every morning before work because he is young and boisterous. For the past 18 months my teen sons have lived majority time with me and i have managed that tricky equation. I feel myself to be a person with resilience and agency again.

Well to cut a long intro short, about 2 weeks ago I had a terrible bout of gastro, longer than a 24 hour bug. Followed by an unsettled digestion and no appetite. I hate taking my meds without a proper meal as it makes me feel nauseas and so avoided my meds as I was already feeling queasy. Well I ended up not taking my meds for 5 days which really surprised me. I started wondering about whether I could start coming off them. I feel at this stage I can't discuss it with my gp whose care I am under or my therapist who I feel will crap on me from a dizzy height. I have been searching online for info on whether bipolars ever come off lithium or alternatives but only found snippets until I found your site.

What I am now doing is taking my full dose every 2 - 3 days which I realized is not so wise and brought me online. I have generally been doing well but felt my mood today was maybe a little too bouncy.

So thanks for the advice about tapering down rather but I would welcome your comments on my experience.

Anonymous said...

I was on Lithium 1000mg daily for 5 years for Bipolar Disorder. I have gone cold turkey and stopped taking it, it is now day 18. I was sick and tired of being manic, high as a kite , never down, never sad, no sleep, well no more than 2 hrs or none at all some nights. I spent $2000 NZ in 3 days,I find my sexual appetite has never decreased while on lithium. These are but a few of my continued symptoms!!! So I went cold turkey, thus far I am now showing signs of real emotion, have cried some tears, real tears not just crocodile tears...I hope this is not the beginning of a decline or beginning of an episode???

I am soon to be 53 years old and cannot truly begin to understand the workings of this illness (Bipolar)that has consumed my life for many many years!! Therefore have chosen to go with the cold turkey choice and hope and pray it is the right path!!

Any thoughts would be greatly appreciated.


Anonymous said...

I have been taking Lithium for 8 months now and just stopped (cold turkey) 5 days ago. I heard that Lithium has a risk of causing birth defects and I am worried that I might be pregnant. I decided to stop taking the Lithium until I find out if I really am pregnant or not. If not, than I will start taking it again. However, it has been 5 days, and according to what I've heard, it takes about 5 days for it to leave your system.

I am not feeling any different (not manic, or depressed, and I have been in an "even" mood ever since I got on it), and I am experiencing no withdrawal. I am starting to think that I might be okay without it, but I really don't want to relapse down the road.

I'm also nervous to talk to my psychiatrist about it since she believes I should be on lithium for the rest of my life. Any suggestions?

Anonymous said...

I have been taking Lithium for 8 months now and just stopped (cold turkey) 5 days ago. I heard that Lithium has a risk of causing birth defects and I am worried that I might be pregnant. I decided to stop taking the Lithium until I find out if I really am pregnant or not. If not, than I will start taking it again. However, it has been 5 days, and according to what I've heard, it takes about 5 days for it to leave your system.

I am not feeling any different (not manic, or depressed, and I have been in an "even" mood ever since I got on it), and I am experiencing no withdrawal. I am starting to think that I might be okay without it, but I really don't want to relapse down the road.

I'm also nervous to talk to my psychiatrist about it since she believes I should be on lithium for the rest of my life.

Any suggestions?

Anonymous said...

Re: dental issues related to sister has been on Lithium for 7 years and has had major dental issues. The dentist says the dry mouth contributes to dental decay.