Saturday, 22 December 2012

Antipsychotics: What your doctor might not tell you

A few weeks ago, I saw an article on Twitter about a new antipsychotic drug that had just been approved in the USA.  Out of curiosity, I had a look at the article and while I can't remember the name of the drug itself, I was taken aback by the side effects listed.  Things like akathisia and weight gain were seemingly trivialised in this article and many of the 'common' side effects (affecting at least 1 in 10 people) were highly distressing symptoms!  I did mean to write a blog post about this drug but something came up and I now can't remember this drug's name or even find the article about it.  Even Google isn't helping me find this mystery antipsychotic so instead, I decided to write about another antipsychotic.  This is an antipsychotic that I was on a few years ago and although I won't name it, I can promise you this list of side effects is real.

Obviously, a person will not suffer ALL of these side effects.  Normally a person will get a few of them and if they're lucky, they'll 'just' get the less painful/distressing ones.  Although even the lesser painful and distressing ones can still be extremely painful and distressing to a person.  These side effects can vary in severity too, one person can be a little tired while another person can be absolutely exhausted.

These side effects affect anywhere from 1 in 10 people to 1 in 1,000 people.  I've described some of the lesser known ones as best as I can.  If I'm wrong with any of them, please correct me.  Here they are:

  • Drowsiness
  • Fatigue
  • Dizziness
  • Extrapyramidal symptoms - these are conditions like Akathisia (an inability to remain motionless), Akinesia (an inability to initiate movement) and Pseudoparkinsonism (Drug-induced Parkinson's Syndrome)
  • Allergic reaction
  • Application site disorder - I think this means pain or other abnormalities in the injection site but I'm not certain
  • Arthritis
  • Back pain
  • Chest pain
  • Precordial chest pain - intense and sharp chest pain
  • Conjunctivitis - also known as 'Pink Eye'
  • Faintness
  • Fever
  • Hot flushes
  • Toothache
  • Drug dependence - i.e. being addicted to the drug
  • Excitability
  • Irritability
  • Increased libido
  • Melancholia
  • Paroniria - I think this is terrifying nightmares but again, I'm not certain
  • Acute dyskinesia - this is usually involuntary movements like tics
  • Ataxia - a lack of motor coordination
  • Convulsions - seizures
  • Hyperreflexia - this seems to be things like muscle spasms, irregular heartbeat, headaches and anxiety
  • Hypotonia - I think this is reduced muscle strength
  • Migraine
  • Oculogyric crisis - this seems to be eye seizures
  • Speech disorder
  • Abdominal pain
  • Dysphagia - difficulty swallowing
  • Gastric ulcer - also known as a peptic ulcer
  • Glossitis - inflammation of the tongue
  • Meteorism - excess gas
  • Hypotension - abnormally low blood pressure
  • Dyspnea - breathlessness
  • Nasal congestion
  • Pharyngitis - inflammation of the throat
  • Rhinitis - similar to a stuffy, runny nose
  • Purpura - this is the rash that is normally associated with Meningitis; a purple or red rash that doesn't disappear when pressed with a glass
  • Mydriasis - a blown or excessively large pupil
  • Hyperacusis - oversensitivity to certain sounds
  • Tinnitus - usually a ringing in the ears but can be other sounds
  • Dermatitis - there are several different types, from eczema to rashes
  • Photosensitivity reaction - I thought this was an aversion to the light but it seems to be a symptom leaving a person more prone to sunburn
  • Abnormal pigmentation - this seems to be abnormal pale patches on the skin
  • Rash
  • Erythematous rash
  • Psoriasiform rash
  • Polyuria - passing excessive urine
  • Urinary incontinence
  • Urinary infection 
  • Urinary retention

As with all medications, there are serious side effects too.  These ones are extremely rare but can happen.  The last two have 'only' affected 5 people but in my mind, that's 5 people too many.

Sounds scary doesn't it?  And yes, I know, paracetamol can probably cause a lot of these symptoms too but I highly doubt that they cause these symptoms in as many people and cause these side effects to be as severe.  Many of these side effects may sound trivial but I can assure you they are not.  For example, drowsiness.  People can become drowsy with antibiotics but I doubt most are as drowsy as the morning after the first dose of Clozapine (this isn't the drug with the above side effects by the way).  This drowsiness can feel similar to being drunk.  Everything feels weird, you feel like you're about to faint and all you want to do is to go back to bed and sleep for a week.

Akathisia is one that I still experience despite being off this above drug for nearly three years.  I only have a very mild form of it at this moment but it is enough to drive me crazy.  I can rarely keep my feet or legs still, even in bed.  At its worst, it can cause a person to be unable to sit or lie down except when completely exhausted.  I knew a woman in hospital who had severe akathisia and she was unable to sit down at all and would walk around for about 20 hours a day.  She would only lie down when she collapsed with exhaustion and even the few hours of sleep she had was interrupted by having to walk around for a bit.  At my worst, I had a moderate form of it and this was enough for me to beg a student nurse to kill me.  It is a horrible side effect and I personally believe it to be worse than the worst schizophrenic/psychotic/bipolar symptoms imaginable.

This antipsychotic doesn't have the usual antipsychotic side effect listed here so I don't know if it is one for this drug.  Those who have taken antipsychotics will know which one I'm talking about.  Yes, it's weight gain.

Again, weight gain may seem trivial but the weight gain is almost always caused by an increased appetite.  When I say an increased appetite, I MEAN an increased appetite.  With Olanzapine, (not the drug listed above!) I felt absolutely starving 24/7.  And yes, I do know what it's like to be absolutely starving.  I've been without food for 6 weeks.  The pain from feeling this hungry can be intense but when it's coupled with pain from eating too much, it's screamingly frustrating.  Feeling starving and so full you feel you're about to burst at the same time is weird.  It's not an experience I'd like to go through ever again.

With this sort of weight gain, there is always the risk of developing diabetes.  I personally know 2 people who've developed diabetes as a result of antipsychotics.  With diabetes, there are so many other complications that can be severe and even fatal.  Even if a person doesn't develop diabetes, there is the risk of other illnesses developing.  High blood pressure and cholesterol, blood clots, strokes and heart attacks.  I've personally known someone to suffer a fatal heart attack from antipsychotics.  It was such a shock.  He was a lovely guy and was only just starting to get his life back.

With all that said, some people do find their antipsychotics to be useful and if you are one who finds it useful, please do NOT stop taking it!  If you are worried about these side effects, speak to your doctor or psychiatrist immediately.  They can put your mind at rest.  If you don't find your meds to be useful then again, tell your psychiatrist or doctor.  If they don't allow you to come off it, then negotiate a reduction.  Any reduction does need to be done slowly, especially if you've been on a drug for a while.

When I reduced sertraline, I reduced by 50 mg every 8 weeks.  I had been on 200 mg for over three years and wanted to come off it.  I admit that I was disappointed when the doctor said how slowly he wanted me to come off it but I am so glad now that he did.  I started on 150 mg and was fine.  8 weeks later I was on 100 mg and was again fine.  About 10 weeks later (because of circumstances, not problems with the drug) I came down to 50 mg.  I was still fine.  Then came the next reduction.  50 mg every two days.  On my first day without Sertraline, I was a bit weepy.  I didn't think much of it as I thought I was just hormonal.  Two days later on my next day without it, I was even more weepy.  Crying because moisturiser isn't absorbing into your face and then crying even more because the tears have mixed with the moisturiser which makes your face feel weird isn't good.  I started back on 50 mg every day the following day and saw my doctor as soon as I could.

So I would say to anyone who is on or about to start any psychiatric medication to research their medication thoroughly.  You will find negative reports about each medication but you will also find positive reports.  It is about weighing up the risks and the benefits.  The case of the young Neon Roberts is a good example.

Neon Roberts' mother doesn't want her son to have radiotherapy because of potential side effects.  Judges have said that the treatment needs to go ahead because if he doesn't receive it, he will probably die within six months.  One comment I read sums it up well: 'One can't enjoy a quality of life if one isn't alive' meaning that to suffer the side effects you need to still be alive.  Although schizophrenia, bipolar and other psychiatric illnesses may not physically kill a person, the symptoms can cause a person to do things that are fatal.  For example, at one point, I believed that if I ate, I would kill my family.  Had I gone without food for too long, I would have died.  Schizophrenia wouldn't have physically killed me but the things it made me do could well have done.

So if you are on a medication that causes horrible side effects, ask yourself 'would I still be alive and have a good quality of life without this medication?'  If the answer if 'No' then to me, that indicates you should continue to take your medication.  I would ask your doctor or psychiatrist for help with the worst side effects though.  If you would still be alive and have a good quality of life without the medication then maybe now is the time to ask you doctor/psychiatrist for a reduction, providing you have been on this medication for at least three months.  Some medications can unfortunately take three months to start working.  After these three months are up, if you have no benefits from your medication, be sure to tell your doctor.

If anyone is wondering, the only psychiatric medication I take now is 50 mg sertraline.  I take a couple of other medications to help with long term side effects; I have been on a total of 5 antipsychotics so far and have had numerous side effects from each.  I'm lucky to 'only' have the long term effects that I currently have!

After that depressing post, I hope you all have a great Christmas and New Year!


  1. I had many of this side effects, too many, it's been years and I still have akathisia, it's awful but at least now it's mild akathisia, doctors never told me anything, I didn't even need antipsychotics and they didn't helped me, my problems are more related to trauma, I couldn't start to recover at all because I was too numb to even care, if I died the next day I wouldn't care or notice.
    It's really about weighing the benefits and risks, but sometimes doctors don't let you do that. I get angry when meeting psychiatrist that say antipsychotics are completely safe and have no side effects, last one I went to gave me one for my sleep problems and talked about it like if it was candy.

  2. If a doctor ever tells you that antipsychotics are completely safe and have no side effects then they are either lying or completely naive. Antipsychotics all have numerous side effects, mostly very distressing. I would definitely research any meds you have been offered or are still on. Then speak to your doctor. They can at least give help with the side effects. Procycladine (might be incorrect spelling, I'm not sure) is really effective against akathisia. I've had it suggested to me recently but am staying off it while the akathisia is at a manageable level. If you still struggle with it, I would recommend researching Procycladine and asking your doctor for some. It really helped me!