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1Littlefoot

Experience of Pregabalin(Lyrica) as augementation with Sertratline + risperidone?

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Hi, My son has suffered with OCD now for 5+yrs -he’s now 21  and along with it depression. His OCD is now pretty much ‘pure O’ where he basically stops getting on with his life – including getting up in the morning for fear of not doing things / living  well enough – so he doesn’t do it ( by the way when he does do things he does them well – he’s academically very smart/ athletic i/loving and caring of humanity – others are envious of his capability  – but in his book he’s still not smart enough. I have lost count of the nos of therapists  / psychiatrists that have told him to ‘ feel the fear and do it anyway!’ If only it were so simple.

Although his condition has improved massively -  he’s managed to get to unie – but is now taking a year out (hopefully only that) to get his head sorted out as he puts it – except he’s not really – locked in his OCD as above.

It's recognised he has treatment resistance. At his worse he's had ERP therapy at Michael Rutter; CBT: and various other 'talking therapy; medication daily is now 200mg sertraline, 2 x 0.5mg Risperidone and when anxiety is  really high or daily  to sleep now 0.25mg clonazepam – which he’d rather not take as he knows this is addictive. 

It’s been suggested that he stops Clonazepam and tries augmenting with Pregabalin to bring down the anxiety – thus making him more able to handle talking therapy and practise what he’s been taught and use his great rational  brain and emotional courage (when he’s not strangled by anxiety) to beta up OCD and get on with his life.

Pregabalin seems to be a medicine that is little used in the UK – it is approved by NICE and is seen as a second line treatment for GAD – there’s very little work on its use for OCD – although what there is seems to show its use is helpful with low side effects.

 

Has anyone got any knowledge/ experience  of it please?  Or indeed ano ideas re medication – to get him off clonazepam ; to get anxiety down so he can access talking therapy and his own capability more to get on with his  life.  And hopefully one day not to have to use medication at all  to ensure he stays safe .   

 

Any insight at all very welcome. Many thanks

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We are not the people to ask about med cocktails that you are looking at. None of us are professionals with medical backgrounds.

Med efficacy is individual to each person. What works for one person may do nothing for another.

I take note of your claim that your son has treatment resistant OCD. I don't believe it exists. I think there is no such thing. There are treatment resistant people and not great therapists but all sufferers can get to a better place uf they are taught correctly and they do the hard work necessary to recover.

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I agree .... tell my son that all the time!! Understand  re meds comment   .... just wanted  to know if anyone knows anything at all re Pregabalin. any info welcome . 

Had a decent    psychiatrist  recommend it. 

Thanks   

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Hi Littlefoot,

As you know we're not drug experts, or qualified to give advice on what medication an individual should take, but I can give you some general information about pregabalin.

Pregabalin is a 'second line' drug used in depression when anxiety is present and for anxiety on its own. It can have side effects but is usually well-tolerated and works well in conjunction with other medicines. It's used quite a lot in depressed patients who haven't responded to the more commonly used antidepressants or who have severe side effects with the tricyclic group of drugs. I don't think you need to have any great concerns over your son trying it, especially when it's under the recommendation/supervision of a psychiatrist, but it's not a treatment for OCD, just for the anxiety/depression.

You mention 'pure O' but of course from being on the forum you'll know there's no such thing! The compulsions are simply hidden/mental rituals that can't be seen. Being able to 'feel the fear and do it anyway' is exactly what he will eventually need to do, but getting off the starting blocks typically needs some cognitive work first. Has he had cognitive therapy, or was it mainly ERP focused, do you know? 

Has he read any self-help books? I'm wondering how good his understanding is of what's going on in his head. For example, is he aware the 'rules' he's set that prevent him doing things are him trying to control things he doesn't need to control? Is he aware that not feeling smart enough isn't a barrier to living well etc? I'm not putting this well, but in short it's about tackling his crippling self-beliefs so he feels able to engage with the world without needing to know how the day will go. 

Since you mentioned Feel the fear and do it anyway Ill tell you I read the book of that name (by Susan Jeffers) over 20 years ago and even now I still use some of the advice to help me face up to things I want to put off or am fearful of doing. It's not an OCD book, it's about building self-confidence and living to your fullest capacity, but there are many wise words in it. Two of my favourites are 'No matter what happens, I'll handle it' and There's no such thing as a wrong decision, only different outcomes' - and of course you can handle either outcome whatever they transpire to be since you can handle whatever comes. :)  I still have my well read copy, but I hear there's a new edition out last year to celebrate the 25th anniversary of it's publication. Maybe consider the book as a present for your son some time?

Starting recovery often just needs a few words that 'click' with the individual. I've collected words of inspiration from many sources over the years, from films, novels, tv documentaries, people I've met and even study courses on all manner of subjects that having nothing whatever to do with OCD. They are easy to remember one liners that have stayed with me and guide me when I'm struggling with my OCD, yet only one of them came from someone working in the field of OCD. What I'm saying is think outside the box, don't just look for OCD treatments, but also consider anything that boosts mental wellbeing and self-confidence from any conceivable angle. 

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Thanks Snowbear - that helps ... he has had CBT, ERP etc .... as per the correct OCD protocols but he does have the other illnesses - depression,- he has baffled the medics - Dr David Veale has seen him and hasn't been able to make much progress. He won't read much - what he does is what I've trawled from the ODD books/the forums /conferences / world experts   ... and all the other 'anxiety' based stuff .... things that anyone can benefit from even if well - analogies to physical physio therapy ... all sorts ... and clipped them into bite sized chunks hoping something might ' click ' with him. Some he has used ... it has helped ....it's keeping him at it ... effort in - results out!    Oh well .... onwards step by step. Will get him to speak ot this doc on

Pregabalin ... even without the meds he might get him to click on something ... so a few more steps forward. 

x fingers ...

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On 08/02/2018 at 09:21, 1Littlefoot said:

Hi, My son has suffered with OCD now for 5+yrs -he’s now 21  and along with it depression. His OCD is now pretty much ‘pure O’ where he basically stops getting on with his life – including getting up in the morning for fear of not doing things / living  well enough – so he doesn’t do it ( by the way when he does do things he does them well – he’s academically very smart/ athletic i/loving and caring of humanity – others are envious of his capability  – but in his book he’s still not smart enough. I have lost count of the nos of therapists  / psychiatrists that have told him to ‘ feel the fear and do it anyway!’ If only it were so simple.

Although his condition has improved massively -  he’s managed to get to unie – but is now taking a year out (hopefully only that) to get his head sorted out as he puts it – except he’s not really – locked in his OCD as above.

It's recognised he has treatment resistance. At his worse he's had ERP therapy at Michael Rutter; CBT: and various other 'talking therapy; medication daily is now 200mg sertraline, 2 x 0.5mg Risperidone and when anxiety is  really high or daily  to sleep now 0.25mg clonazepam – which he’d rather not take as he knows this is addictive. 

It’s been suggested that he stops Clonazepam and tries augmenting with Pregabalin to bring down the anxiety – thus making him more able to handle talking therapy and practise what he’s been taught and use his great rational  brain and emotional courage (when he’s not strangled by anxiety) to beta up OCD and get on with his life.

Pregabalin seems to be a medicine that is little used in the UK – it is approved by NICE and is seen as a second line treatment for GAD – there’s very little work on its use for OCD – although what there is seems to show its use is helpful with low side effects.

 

Has anyone got any knowledge/ experience  of it please?  Or indeed ano ideas re medication – to get him off clonazepam ; to get anxiety down so he can access talking therapy and his own capability more to get on with his  life.  And hopefully one day not to have to use medication at all  to ensure he stays safe .   

 

Any insight at all very welcome. Many thanks

Hi 1Littlefoot,

I'm really sorry to hear about your son's struggle with OCD. How have his previous attempts at CBT gone? Does he feel that the Sertraline and Risperidone are working for him?

I don't have personal experience of Pregablin but have heard from friends and relatives who have had persistent trouble with insomnia after they have stopped taking Pregablin (even months after withdrawing from it.)

 

Edited by BelAnna

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TThanks BelAnna. knowing info like that is helpful ... gives us the questions to ask the medics - rather than just take their word for it willy nilly. 

On the CBT side- yes he's had several 'courses' all from highly qualified OCD specialist clinical psychologists  s  - linked with Kings /Maudsley.

He has seen  Dr David Veale who also recognises that our son is resistant to the talking therapies as part of his OCD - the OCD makes him question everything - he wants to work it out for himself / won't accept accepted best practise expertise cart blanch  - which is sort of right as treatment needs tailoring for the individual and the solution in the end is within himself  - but he takes it too far as to make the help he's getting less useful - so he shoots himself in the foot . It's OCD talking  - not his real rational self.  Added to this he says the therapy hasn't 'cured him ' so therefore he has no evidence that the therapy works     .... it makes using rational thought very hard to get through to him!! I end up going around ina whirl trying to make him see rational sense. 

So far the Michael Rutter clinic were the most successful - using ERP and CBT but it removed circa 70% of the external behaviours of OCD that were harmful - enough to get him functioning to do A levels/go to unie ( for a year)   ..... but as he said himself ... he went along with it ... it didn't get rid of OCD ..OCD  sort of went underground  ...... ie is now ' mental rituals etc' only ... is why I use the term 'Pure O' as a convenient  label .. as there are no visible physical OCD signs now  - other then retreating to his bed with OCD exhaustion  - he'd spend all day in bed pretty much is left alone to do so. 

He is giving up a bit and that worries me ... as be becomes at risk when he gets so low.  So I find myself exploring new ideas ... as he's tried so many already over the last 5 yrs .... from the UK's top experts..........where do you go for help after that ?  ! 

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Hi there,

Your sons story resonates so much with my own journey tackling OCD, mine used to be more overt and is now mainly mental obsessions. I also have the all or nothing thinking which is a common trait in OCD, mostly doing the nothing so struggling to even leave my bed. I’ve had lots of different therapies/therapists even intensive in-patient treatment at the specialist centres and been under pharmacologists trying pretty much everything with little or no results so I do believe that there are certain individuals who are treatment resistant.

As for the Pregabalin I take that atm and I find is very helpful anxiety wise and is a great alternative to benzodiazepines, although as said before everyone is different when it comes to what works an what doesn’t.

 

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On 13/02/2018 at 09:54, 1Littlefoot said:

TThanks BelAnna. knowing info like that is helpful ... gives us the questions to ask the medics - rather than just take their word for it willy nilly. 

On the CBT side- yes he's had several 'courses' all from highly qualified OCD specialist clinical psychologists  s  - linked with Kings /Maudsley.

He has seen  Dr David Veale who also recognises that our son is resistant to the talking therapies as part of his OCD - the OCD makes him question everything - he wants to work it out for himself / won't accept accepted best practise expertise cart blanch  - which is sort of right as treatment needs tailoring for the individual and the solution in the end is within himself  - but he takes it too far as to make the help he's getting less useful - so he shoots himself in the foot . It's OCD talking  - not his real rational self.  Added to this he says the therapy hasn't 'cured him ' so therefore he has no evidence that the therapy works     .... it makes using rational thought very hard to get through to him!! I end up going around ina whirl trying to make him see rational sense. 

So far the Michael Rutter clinic were the most successful - using ERP and CBT but it removed circa 70% of the external behaviours of OCD that were harmful - enough to get him functioning to do A levels/go to unie ( for a year)   ..... but as he said himself ... he went along with it ... it didn't get rid of OCD ..OCD  sort of went underground  ...... ie is now ' mental rituals etc' only ... is why I use the term 'Pure O' as a convenient  label .. as there are no visible physical OCD signs now  - other then retreating to his bed with OCD exhaustion  - he'd spend all day in bed pretty much is left alone to do so. 

He is giving up a bit and that worries me ... as be becomes at risk when he gets so low.  So I find myself exploring new ideas ... as he's tried so many already over the last 5 yrs .... from the UK's top experts..........where do you go for help after that ?  ! 

Hi 1LittleFoot,

It's great that you've organised all of the best treatment for your son and it sounds like the Rutter Clinic did help for a while. I had some inpatient treatment at the Anxiety Disorders Residential Unit from David Veale's team and I was going to suggest that your son request a referral for treatment there but if he has already received treatment at the Maudsley and not found it very effective for his condition then there might be a better option.

I'm sorry but I'm not sure what the answer is at the moment! Would he find it helpful to join the forum himself so that he can discuss some of his thoughts to feel less alone and allow him to process the intrusions? 

 

 

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Thanks BelAnna and DRFCno1

We tried getting him into David's unit but after him being assessed it was deemed not appropriate by the doctors.Still don't get why.   

I'll keep trying to get him to look at the forums - and get him along to other events where others are . trouble is he feels that on both of these he'll see/hear form the suffers - don't get to spk to those that have moved on and overcome tor at least are managing the illness well as they just get on with their lives! He feels mixing with others who suffer will just make him feel worse - and add to him feeling there's no end.  

I took him and his Dad and his twin brother to an OCD group - dad ended in tears in public   .... although think all three  benefited  in the end  if only to give added impeteus to son to get better and the rest of us to help!  !   

A few things coming up I can involve him in .... with OCD UK and others one at Kings -- just hoping some where along the line something will just unlock his thinking enough to help him find his own way to being happier with life and not so tortured.  He's such a happy chappy when feeling good! 

So I'll keep coming on the forums until he does and see what I can find out and tell him .... !!  Happy days!!!  .

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Sorry to hear your Son is struggling so much at the moment.  Remember that he is only 21 and the struggles of adolescence will still exacerbate the problem, as he matures his mindset towards the situation will probably alter.

Pregablin does have good reports for lowering anxiety and this in itself may help him to deal with the OCD more effectively.  He sounds to have a very supportive and proactive family and this really helps.

Good Luck :)

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Good point! Keep forgetting he's still so young ! 21 these days is not quite what it was when I was 21 . 

haha  

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3 hours ago, 1Littlefoot said:

Good point! Keep forgetting he's still so young ! 21 these days is not quite what it was when I was 21 . 

haha  

I know, me too!!!  It was on the news only the other day that adolescence has been redefined as being between the ages of 10 to 24

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