OCD Action

Hi all,

FACTS ABOUT MEDICATION & BEING REFERRED OUT-OF-COUNTY

For over four years, I took a heavy cocktail of 60mg fluoxetine (upped to 80mg before clomipramine was added), 2mg risperidone, and 300mg clomipramine.
Since coming off all medication on 09 September this year, I am the happiest I have ever been in my entire life!

I thoroughly regret having taken any psychotropic medication.
However, my nice care-coordinator advises that sometimes you just need to.

I took fluoxetine because medical professionals advise that the most effective way to treat severe OCD is to have both CBT therapy and an SSRI medication simultaneously.
My side-effects included severe diarrhea, becoming manic in the evenings, and sleeplessness.

In addition I took risperidone (an anti-psychotic) because my CBT therapist and psychiatrist advised that I had "over-valued ideas", i.e. my fear of toilet tissue dust had become "delusional".
My side-effects included weight gain, memory loss, confusion, inability to concentrate, and becoming zombie-like.

In addition I took clomipramine (the older, original drug for OCD, which is not prescribed as a first-line treatment any more due to its many side-effects) due to my psychiatrist advising that we needed to "augment" the fluoxetine with clomipramine as a last resort.
My side-effects included a lot of weight gain, stretch marks, inability to concentrate, and becoming zombie-like.
They also included memory loss and confusion, which I still have to date, but with some improvement.

The main reason I resorted to medication was out of desperation, because my CBT therapist decided not to take me on for therapy.
She originally advised, after having assessed me for seven sessions, that (1) she could not engage me in therapy and (2) she could not work with my thoughts, as she could not push me on what toilet tissue dust actually meant to me.

My GP and care co-ordinator helped me to eventually have motivational interviewing and a small trial of CBT.
After this trial, my CBT therapist advised that she could still not take me on because, due to my OCD being severe, I needed intensive CBT therapy which was not available in my county.
Instead, my local NHS had funding for couple therapy, which (I discovered myself) OCD specialists advise is not appropriate for OCD.
Out of desperation my partner and I did this for a year, but I did not improve at all (though it did bring us closer together).

You have to exhaust local opportunities in your county before being referred out-of-county to a specialist, intensive OCD treatment clinic.
I was eventually referred to the Maudsley Hospital in London who assessed me as being "profound" and recommended I have 12 weeks' inpatient treatment with them.
However, I did not meet funding criteria due to not having had enough CBT therapy sessions in my county, and my local NHS decided not to pay the cost themselves (approx £22K!).

I am now glad I did not become an inpatient at the Maudsley as, instead, my local NHS referred me to India Haylor's private OCDCentre of London and New York and are paying for me to have therapy there.
India describes her OCDCentre as proven "non-medication treatment" for OCD.
I am so glad I have gone down this route and come off all medication - I just wish I had had the opportunity to do so years ago!

Throughout this I discussed the medication options with my excellent GP.
Due to the lack of local CBT therapy for me, in my distress we felt we had no option but to go down the medication route.

I hope this information will help others to (1) make informed decisions about whether to go down the medication route and (2) navigate the long route to being referred out-of-county for specialist, intensive help.

Good luck!

Best wishes,
Gemma

... there might be a story in this. On obsessive-compulsive disorder. Not as big a blip on the radar as cancer, maybe, but sufferers will tell you it's still some mighty scary shit.
Stephen King, 'N.', Just After Sunset

Shantih shantih shantih
T S Eliot, The Waste Land