Anti-psychotic drugs

[Guest swinkertint]

Hi all,

Just back after our long-awaited meeting with the psychiatrist, to assess my 16 yr old daughter for potential drug therapy. She was unable to respond to CBT alone, and now this is the proposed route, along with more CBT in a few weeks, if the drugs are helping. My worry is that as well as an anti-depressant, which I was expecting, they also recommend an anti-psychotic drug (Quetiapine) to be taken alongside it, this is to help with her lack of sleep. It's a scary term, and looking at the side-effects etc, I'm worried about the overall effect it might have on her. She's just started 6th form, and is not a socially confident person. Does anyone have any experience of these drugs? I know that they affect individuals differently, so I will bear that in mind. Also, I'm worried about what impact this medication use will have on her future, when applying for university, jobs, insurance, all sorts of things. Any experience of this out there?

[Tez]

Hello there.

Just a quick note to say that I take olanzapine, which is an atypical anti-psychotic, as well as the anti-depressant citalopram, for my OCD. I was put on olanzapine in October 2009, during a period of heavy depression and deep anxiety. And I have to say, it was a revelation and my mood has improved along with my ability to cope with my OCD thoughts. I have been back at work these 6 years, have gotten involved in the local community radio, and socialise much more. In terms of side effects of olanzapine, I have to avoid cake, chocolate, biscuits and I also try to minimise bread and pasta in my diet as I just pile on the pounds, although to be honest, I do come from a family which has always struggled with maintaining a stable weight. So the olanzapine just might have amplified those weight gain tendencies. Other than that, I have not experienced any real side effects. My GP takes my blood once annually to check that I am healthy and the my cholesterol is not rising, and is satisfied that I am in good shape.

That's my experience on an atypical anti-psychotic. It has been a really beneficial thing in my life!

Best wishes

Tez :original:

[Ashley]

Hiya,

First of all I am not trying to confuse or put you off medication, I wanted to throw something out there for you to ask yourself and your daughter.

When you say she was unable to respond to CBT alone, is that your opinion too, or is that the CAMHS opinion? Is it possible that the CBT being offered was not good enough to help your daughter? Not all CAMHS services offer good therapy, so it may be that therapy with a different, more knowledgeable therapist may bring different results.

Ok, now the meds. I would not worry too much about future impact on uni/career, lets be frank if OCD gets too bad (hopefully it wont) then OCD itself can be a bigger barrier to successful uni and careers. If she has not been on an SSRI already I am surprised the psychiatrist wants to jump straight into the augmentation with an anti-psychotic. Personally I would try and SSRI first alongside CBT.

There was a relatively large US study published two years ago which showed that CBT/SSRI augmentation was fairly effective compared to SSRI/Anti-psychotic which was no better than a placebo.

David Veale also published some data last year that suggested anti-psychotics may work for some people, but generally they see positive results within 4 weeks, and after that it is unlikely to be effective if not working by that point.

So personally I would either ask for CBT with a different therapist first and advise them you will consider meds later, or go down the SSRI/CBT route first.

Lots to think about there, and discuss with your daughter and if need be the psychiatrist again

[Guest swinkertint]

Dear Tez and Ashley,

Thank you for replying to my post. Tez, I'm very glad to hear your positive account of the drugs, and to know that they can make such a difference. I had also heard that they can cause weight gain, but only over the long term? Ashley, yes it's an interesting point about CAMHS. In her therapist's opinion, my daughter was holding on to her OCD, and had always had a sceptical view about the benefits of CBT, and I didn't disagree with her. However, her therapist is still in training for CBT, and another comment on here suggested that insufficient attention can often be paid to the cognitive part of CBT, whist focussing on the behavioural before being ready for it, or before the C part has been sufficiently challenged. I'm inclined to think this might be the case, because my daughter's therapist felt that her OCD was almost purely C. I'm trying to challenge my daughter's core beliefs about her OCD before we see the psychiatrist again in December, when we will make a decision on the drugs. To be honest, I think I would struggle to get her to take them if presecribed. In the meantime, he has prescribed melatonin for her, whilst cautioning that he didn't think it would work!

[Tez]

You are welcome. I think that with OCD, there are so many different subgroups and types, that therapies work differently for each individual, and in my experience, the trick is never to give up hope, that there will be something that can allevitate symptoms. During August and September of 2009, I became pretty bereft of hope and sank into a deep depression and very compulsive phase in my mental health. Not at all nice, and I had to rely on my mum, who has some experience of her own mental health issues, to hold on to that hope for me. In October, they tried me on olanzapine, and hey presto, as soon as I hit 7.5mg, my mood began to lift, I had more energy and my obsessionality began to diminish.

I have heard it said (by OCDUK patrol Paul Salkovskis, I seem to recall) that there is a lot of "not very good" CBT out there, and the trick is to find someone who has the right experience and expertise in obsessive compulsive disorder and all its various manifestations and nuances. So, never give up on therapy. This organisation (OCD-UK) has transformed how the illness is seen and treated, and the position for sufferers is, I would say, much better than it was in 2004 when the charity started. Consult with the OCD helpline they operate if you are having difficulties finding a good therapist in your area.

Yes, you are right about weight gain, but the way I see it, if you have to watch your weight on the meds, then that's a small price to pay for alleviation from the worst of the OCD symptoms. I don't eat bread, pasta, cake or biscuits, and have cut right back on cheese, eating only lean meats and vegetables at the moment, yogurt and healthy drinks and I have managed to control the weight gain tendencies. I eat quite well too!! !

Best wishes

Tez

[SnookerTable]

I am also on Olanzapine, and have experienced large weight gain but hopefully with a correct diet the effects could be reduced as stated in the above post, or another type of antipsychotic tried instead

Of course you would need to talk to your doctor about this type of medication if the advice given by Ashley does not work first, but I want you to know that personally this type of medication for me has been a life saver, my ocd has probably been reduced by a good 80%, and yes when you first hear that it is an antipsychotic and look at the side effects one is very wary, but don't worry as these tablets are also purely used for people with anxiety disorders like ocd as well as other separate conditions

Edited November 4, 2015 by SnookerTable

[Guest swinkertint]

Many thanks Tez and Snookertable for your replies. It's really helpful to have a bit more detail on how the drugs are working for you, and indeed good to know that they can be effective for ocd.

[whitebeam]

Hi swinkertint

I don't want to rain on your parade - but my experience of an anti-psychotic (Risperdal/Risperidone) was really bad.

I was prescribed Clomipramine with an augmentation of Risperdal - it was a long time ago and I was pretty ill so I have no idea what the dose was.

After I had been on it for some time, I became extremely agitated both mentally and physically. I had to keep moving (I think the term is hyperkinesis). If standing I had to pace up and down; when sitting, I would either rock or have my legs marching on the spot; even lying down I had to rock. I hardly slept and was exhausted. Basically I got more and more distressed - it was very frightening.

I also made strange involuntary movements with my mouth. My psychologist did ask me about that but did not seem to link it to the medication.

Things came to a head and I stopped taking it ............. and my symptoms stopped. I never really had the discussion about whether it was the Risperdal that had caused it as I was so ill I had to spend time in a psychiatric unit and somehow the conversation was never had. I am pretty sure that it has an ingredient in it which can cause these symptoms.

http://www.rethink.org/diagnosis-treatment/medications/antipsychotics/side-effects this article lists the possible side effects.

I am not trying to put you off or discourage your daughter from taking these meds.......obviously they do help some people enormously. The trouble is we never know what will suit us or what will cause unpleasant symptoms. It is a case of trial and error.

I just thought by telling you my experience, if your daughter does show any of these signs - at least you will be prpared and able to go back to your GP or psychiatrist.

I need to add, I was put on a high dosage of Clomipramine (220mg) and an anti-anxiety Clonazepam (I can;t remember the dosage and after a while things started to improve. It still took some years for me to be completely well - but now I am well, happy and back in work in a job I love.

Good luck :clover: to you and your family - I know how distressing OCD can be - but do believe that things can get better.

whitebeam :original:

[Tez]

That's interesting Whitebeam. I became unwell in December 2008 (now that was a **** Christmas!) and bless the NHS, had a referral early in January to secondary services. They did try me on Risperidone as an atypical antipsychotic augmentor with my existing citalopram. I improved for a while ..... but in August, I suddenly developed more compulsions and slipped in to a deep depression. I was first tried with a higher dose of Risperidone for a while, but just was getting worse and worse. To make matters worse, I was also getting pressure from my father to get back to work, which was not helping. My mum (who understands more about mental health) intervened and we reviewed the situation with my psychiatrist..... she put me on olanzapine and three days later - when i hit the 7.5mg mark, my anxiety levels came down, and I began to be able to cope much better with my symptoms. So, Risperidone didn't work for me: olanzapine has. I mean, I do struggle from time to time, and every day I have intrusive thoughts, anxieties and doubts. But my mood is so much better than it ever was, and my confidence and abilities to cope are much better. I accept that I might always have OCD experiences and distorted thinking. However, I am so much better, and my life is the best it has ever been, I would say. That's my experience!!!

Oh, and these Forums are superb. Always full of support, advice and friendship. Really find these of value.

Tez

[whitebeam]

However, I am so much better, and my life is the best it has ever been, I would say.

Hi Tez - I am so glad that you are so much better. The right medication and/or treatment can make such an amazing difference.

For anyone battling OCD I really think you need to pursue all avenues. You never know what it may be that may help you.

[Caramoole]

I am not trying to put you off or discourage your daughter from taking these meds.......obviously they do help some people enormously. The trouble is we never know what will suit us or what will cause unpleasant symptoms. It is a case of trial and error.

Good info from Whitebeam. It seems that for some these medications can make a beneficial difference......for others there are intolerable (sometimes permanent, it seems) side effects. It is important that the patients feedback is taken seriously.....or that their close family intervene on their behalf if such problems occur....because sadly, they are often pushed to persevere regardless of how badly they may be experiencing side-effects. Something I have yet to comprehend but have experienced on many occasions

By all means try the recommendations but have someone on your Daughters side prepared to intervene (forcefully) if they think necessary

[Tez]

Yes, I would also say that it is important to hold hope for the person you are supporting with OCD. Sometimes our own hope goes down the plughole, particularly when we are stressed or in the midst of an OCD type thinking period. It is especially important when someone has a "belief" in the context of their OCD thoughts - something the experts call "Overvalued Ideation".

As other posters have said, persevere: it is worth it. Indeed, not pursuing treatment and therapy is not really an option, as OCD will probably become progressively worse until it takes over the whole of the family's life. But, with treatment and (sometimes) medication, people do improve. There is a lot that can be done, and a lot of exciting research into areas like deep brain stimulation and other treatments. For those of us with OCD, these are always hopeful days, that there is a lot of stuff happening on the research front.

So, keep fighting for good treatment, and share experiences with other people affected by OCD: that's my advice.

Have a good weekend.

Tez :original:

[Guest swinkertint]

Thanks Tez and all for your very helpful comments. The psychiatrist is chiefly suggesting the antipsychotic to help my daughter sleep in the short term, whilst the anti-depressants kick in and the CBT is getting underway. But I'm wondering why not prescribe an actual sleeping tablet for this? I also worry about the effect of something like Quetiapin on a developing teenage brain. Are these drugs licensed for use in children? All things I should have asked him but occurred to me later.

[Tez]

Hi there. I am certainly no expert on teenage psychiatry, but I can tell you that I was a teen once with OCD. [strangely, OCD develops in boys earlier than girls according to most research and this is probably to do with the structure of the male and female brain]. I had full blown OCD symptoms when I was 17 going onward. I think I would definitely have taken olanzapine then if it had been offered to me.

As I understand it, olanzapine and other atypical anti-psychotics are used "offlicense" for OCD. This means that their approval by the (USA) F.D.A. (Food and Drugs Administration) is for schizophrenia and hearing voices, but researchers have found that at lower doses, these drugs also stabilise mood and increase rational thinking, taking away some of the worst obsessionality.

In terms of sleeping tablets, yes, there is that question, but sleeping pills can bring with them their own set of problems and side effects. Certainly, your daughter will be able to sleep well with an anti-psychotic. You might find that she is a little drowsy, at least whilst getting used to the drugs. I have occasional what I called "Olanzapine moments" (a term I nicked off a friend with HIV who used to have "efaverenz moments" when he was spaced by one of his meds). This means that I get drowsy at work occasionally, and have been known to nod off in meetings!! I usually find that an energy drink and strong coffee counteracts this.

I do not know what classes of drugs are licensed for use in people under the age of 16, but there is growing awareness of OCD in children - again, as I say, boys tend to develop symptoms earlier than girls. If in doubt, try the OCD UK switchboard (details on the charity's website), and they may refer you to the charity "Young Minds" (for adolescent mental health) or Sane Line.

Keep the faith. OCD is a ****** illness, but it can and does respond to treatment, therapy and long term support.

Tez :original:

[Guest swinkertint]

Tez, you've been really helpful. Thanks for all your input, and best wishes.

Emma