12: Carol’s story

Introduction [KG]

As readers might suppose, we hear many stories about patients whose long illnesses have been substantially improved once they have been treated with MAOI depressants.
I select those stories that illustrate particular points about treatment.
Carol’s story shows how odd it is that doctors switch patients from drugs which have been successful, onto drugs which are not successful, and then persevere with those despite poor response, and knowing patient previously responded well to an MAOI. This obviously illogical course of action is driven, one supposes, by ignorance and fear about the largely non-existent ‘dangers’ of MAOIs.
Her treatment with Fluanxol, which was an antipsychotic that was popular when I was in the early stages of my career, shows that the delusion that antipsychotics treat depression goes back much further than many people seem to recognise. Her treatment with a sub-optimal dose of TCP shows that it sometimes works well, even at lower doses, but that full remission usually requires at least 30 mg daily. The idea of reducing it to a maintenance level when people have enjoyed an initial improvement is frequently not successful, but doctors do it without recognising that subsequent illness-response has been unsatisfactory. It is highly likely that this lady would have enjoyed years of complete remission had she been treated with an adequate dose all the time.
The idea that it is not suitable for older people is mistaken: indeed, many older people have less side-effects with it than those who are younger, and they often, in fact usually, have less side-effects than with the alternative antidepressant treatments [see ‘Bruno’s mother’].
‘I sought out a private , partially retired psychiatrist … who knew all about MAOIs’ — the mission of my group at MAOI experts is to make sure there are more young doctors who know about MAOIs — so consider making a donation to help our efforts.
“My meds were stopped for surgery and chemo…”. This illustrates how common it is for MAOIs to be stopped unnecessarily for various reasons, including other doctors lack of up-to-date knowledge.
Lastly she correctly notes that she has subsequently remained well, despite all sorts of sad and distressing events — if you are well, you are well. You are able to cope with the ups and downs of life as you would normally expect. This illustrates that, in many cases, the illness is not worsened or precipitated by stress or upsetting events.

 

Born Christmas I958 I am the 3rd of 4 children from a lovely working class family in Dublin, Ireland. As a toddler I experienced severe illness and then separation for almost a year from my mother who got TB. There was some neglect in my care at that time by a grandmother who was very fond of a drink. So, nature and nurture played a role in my mental health issues throughout my life. Overall though I had a good childhood with loving parents but definitely had ‘episodes’ of feeling lost at time throughout childhood and not even knowing how to seek help. It was my ‘norm’.

At age 23 I had a complete breakdown as it was called then. I was so ill I was hospitalised for 5 weeks, thankfully in a general hospital. I was put on Prothiadin, a Tricyclic antidepressant for the 5 week. It literally had no effect. I was discharged feeling no better and just felt like a lost soul going through the motions of life. In a follow up outpatient appointment, the psychiatrist prescribed Parstelin, a compound antidepressant composed of 10mg of Parnate (Tranylcypromine) and 1mg of Stelazine, an anti-psychotic med (Trifluoperazine) . Within a week I felt better than I ever had in my entire life. 20 mg was the dose and after a few months I was weaned off. I was back in my Civil Service job in no time after the improvement and living well.

Over the following years I still experienced episode after episode of depression and always had high levels of anxiety. The GP would prescribe Parstelin then take me off it when I’d level out. I’d moved to Wales and married, was working in the UK Civil Service. The episodes continued to come and go. A referral to a psychiatrist resulted in a trial on Fluanxol, which again did absolutely nothing for me, so eventually I was back on Parstelin. When production of that ceased I was put on Parnate and Stelazine separately, 10mg Parnate to 1 mg Stelazine. The drugs enabled me to live a fairly normal life overall and to work but the episodes continued, often accompanied by suicidal thoughts and a desperation for the awfulness of the depressions to end. I also used lots of other non-medical therapies which helped a bit and taught me a lot but it was only ever the MAOI that helped me to be well enough to engage in other therapies.

Six months following a drug free pregnancy when I was well, I dipped again and was tried on Prozac. This caused unbearable extreme anxiety and suicidal thoughts to a level where I only lasted a couple of weeks on the drugs. Back to the odd regime of Parnate and stelazine and I settled down again. I’d start on 20mg Parnate and 2 mg Stelazine daily and drop back to a maintenance dose 10mg Parnate 1mg Stelazine as prescribed by the psychiatrist. I’d recover but the episodes would still come around.

Fast forward a few years and at 47 I had ovarian cancer and my meds were stopped for surgery and chemo. I lasted a few months feeling mentally reasonable then dipped horribly into clinical depression. I was put on Seroxat. This again caused such extreme anxiety, and coupled with the exhaustion from the chemo, literally made me want to die, despite having a husband, daughter and worklife that I loved. Once chemo was finished, and thankfully I’ve been clear since, I started back on the Parnate and Stelazine regime as prescribed and stabilised again.

Even through my best, happiest and most stable times on the maintenance dose I would still experience very high levels of quite irrational anxiety. It was my norm and I lived and worked with it. The depressions used to feel like an electrical fuse had blown in my head and it would take weeks and weeks on a higher dose of meds for the ‘power’ to switch back on. Then I’d drop back to the maintenance dose.

At age 60 I was very concerned about the effects of Parnate. The leaflet says it’s not suitable for older people1. The UK NHS psychiatrist refused to see me to discuss possible alternatives that might be available now, saying ‘she knows what to do’ i.e. increase on a dip, drop back to maintenance when well. I sought out a private, partially retired psychiatrist, older than me, and was delighted to find that finally I’d met a doc who knew all about MAOIs. He said it was clear the drugs really suited me but that the regime was all wrong. He said I should be on 30mg per day minimum permanently. He said I needed the drug like a diabetic needs insulin. He said ignore the leaflet, that he’d prescribed up to 120mg of Parnate in his career. He said to wear a medibracelet in the unlikely event of an accident and that modern docs, who know nothing about MAOIs could then easily access the info the need in the unlikely event of an accident requiring drugs or surgery.

It took a few weeks on 30mg daily to settle down and here I am 5 years later and I haven’t had a single episode of clinical depression. We’ve had some pretty sad and stressful events in the last few years where I’ve been sad and stressed at times and understandably a bit down after family bereavement etc, but I still haven’t dipped into a clinical depression. These drugs have enabled me to live life even more fully now.

Thanks so much to Dr Gillman and his team for the amazing work they’re doing to protect production of MAOIs.

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– Dr Ken Gillman

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Dr Ken Gillman