Feedback from Radio 4 Saturday Live interview

Fi Glover and her team have kindly sent me some of the feedback from the interview which I did with them. I am posting it below as it is fascinating to hear other people's stories......

Dear Fi and team….,
Coming Off Antidepressants
I suffer from clinical depression and was on the infamous Seroxat for some seven years in the 1990s.
Getting on to them was a bit tricky, with giddy fits, dry mouth incidents of ‘electric head’, but this was as nothing to getting off them.

They did work to a certain extent, but they took the highs out of ones mood more than they took the lows, and I came to realise I could only deal with my depression if I could feel the whole range of my moods and not have them clouded by Seroxat.

So I came off them. Didn’t refer to my doctor, I just stopped taking them. A very bad thing to do, I learned later.
Coming off them the room would swim about before me I got periods of giddiness such that I could not get out of a chair. I live alone and I was not working at the time, so I just got on with it. My moods went up and down and my emotions were greatly heightened. I listened to the radio a lot and anything with a bit of pathos had me in tears and I reacted strangely to stuff I heard. Desert Island Discs never failed to make me weep!

The worst thing was the ‘electric head’ thing. I only heard the term afterwards but understood what was meant. ‘Electric Head’ are shocks a bit like having an instant hit of extreme pins and needles deep inside the head, with a sort of electric shock crackle in the ears. Alarming, more than painful, but something otherwise unknown in ‘normal’ life.

The whole coming-off-Seroxat experience lasted, for me, about a week to ten days, then I was through it.
I went to see my doctor. He was ‘alarmed’ at the way I’d taken myself off Seroxat, to say the least, but he accepted that I’d done it and let it go.

The controversy about Seroxat (a la Panorama programmes) is that it promotes suicidal tendencies. I dispute this strongly… I felt suicidal whilst on Seroxat. Now I’m off it, I still feel suicidal at times. I’m depressed for Chris’sakes… It makes you suicidal; ‘tis the nature of the beast!

Thanks for the show – I got a mention last week with my Saturday Live – An Audio Duvet. That one’s a bit weak. I like my Saturday Live – It’s a Morning Glory myself!

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I came off anti depresseants (Prossac) two and a half years ago after about five years on them.

I suggested coming off to the GP and he had to reluctantly agreed when he saw my determination. I'd had enough of being made to feel mentaly and physicaly inferior by the side effects. I don't think the drugs did anything to help anyway. If anti depressants work, why is there so much depression around the place? I had to do my own research and told the doctor how to help the process such as, prescribing medication in liquid form to make it easier to cut down dose slowly. Also when it comes to small amounts of medication making use of baby spoons or child despensers.

I have never regreted my decision and I imediatly began feeling better having made the decision. find groups or similar people to talk to and barrack the doctor for alternative therapies with no hidden agenda don't let them automaticaly reach for the drug company manual.

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Dear Fi
I can tell you with authority that there are 209 grains in every capsule of Effexor (Venlafxine). I know this because I spent 6 months opening capsules and counting them out so that I could reduce the dose by one or two grains per day, in order to get my husband off the dreadful things.

They seemed to help for about a month and then suddenly it was as if he had broken through the mood-containment they initially provide and suddenly, his mood swings up and down became even more extreme. I got used to receiving phone calls from him asking me to come and rescue him from somewhere as he felt unable to move and was terrified he was going to do something sudden like leap in front of a bus.

Stopping the drugs cold made his mood even more unhinged. He started self-harming, cutting his arms, saying it was only thing he could do that made him feel anything at all. He once played noughts and crosses with himself with a knife on his arm. This formerly gentle man would lash out at me at times, dragging me by my collar, tipping food over my head, and even threatening me with a knife.

Long story short, reducing grain-by-grain took 6 months. Even then, his depression through that time was worse than at any other time in his life.

He' doesn't take antidepressants any longer. He's still depressed but at least it's his depression, and he knows his feelings now are genuinely his own, not drug induced.

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I have just heard your interview with the lady who suffered PTSD. There are NICE guidelines which explain that anti-depressants are NOT appropriate treatment for PTSD - a course of expert counselling is appropriate, and the NHS are setting up centres that offer this around the country, although there is great ignorance among many GP's regarding the nature of PTSD and the effectiveness of counselling, and, sadly, we have, through our charity, many cases of victims of fatal and serious road crashes simply being prescribed anti-depressants, which can mask symptoms, not aid recovery, and be very difficult to come off. PLEASE ADVISE YOUR LISTENERS THAT THEY SHOULD READ THE NICE GUIDELINES ON THE NICE WEBSITE RELATING TO PTSD IF THEY THINK THEY ARE SUFFERING FROM THIS DEBILITATING CONDITION.

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Shock and trauma needs to be processed through the body not the brain. The anti-depressants suppressed your symptoms until you came off them – the shaking and coldness is the body’s natural response to trauma – it is in fact the shock discharging.

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Re treatment of people with PTSD
There is at least one very good non-medical intervention, the Rewind Technique, which can be used by trained therapists. It takes minutes to do and is very successful as it works with the brain's memory-forming mechanisms. Unfortunately it is not widely available, and to have it recommended by N.I.C.E involves extremely expensive clinical testing which, as the technique doesn't involve big drug companies, is too expensive to do.

Poeple should read a book called "Prozac Backlash" if they want to know how drug companies have "lost" damaging info on addiction and serious long-lasting side effects caused by their products. We should always remember that these companies ARE NOT OUR FRIENDS - although very useful!

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I have been on 3 seperate kinds of anti depressants - the third time because the waiting list for counselling in the area I lived in at the time (Wirral) was over a year long, and I was in such a state that they were worried for my safety. I actually wanted counselling as it was obvious after 2 bouts that the anti depressants were only masking the problem. I ended up being off work for 6 months, as much because the side effects of the pills were so severe with fatigue and disorientation as the depression itself. Subsequently I was taken off the tablets, and received 6 mths counselling after moving area. I have been anti depressant free for a year and a half now, and they help I received has given me different ways to deal with the symptoms when they arise.

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I've just been listening to the story of Kirsty's experiences with PTSD after 7/7. You may like to investigate (and to pass on to Kirsty) a relatively new and effective non-pharmaceutical treatment for PTSD that has been developed by the 'Human Givens' school of therapy. Google 'Human Givens' (or 'Mindfields College') and contact Joe Griffin, Ivan Tyrell or Piers Bishop for further information about the 'rewind' method. At first it sounds like some sort of magical procedure, but there is plenty of evidence that it works!

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Listening to the sad story of the bad sad effects of anti-depressants, I wonder if anyone has tried alternative medicines? There are so many available now which do not have bad side effects. I have been using homeopathy for more than 20 years and am just now doing an 8 week evening class, which is of course not comprehensive but there are so many remedies according to the precise personal symptoms that under an experienced homeopathic doctor, I'm sure they could find help. I have also done a short course in Bach Flower remedies and maybe some of these could help with expert guidance. I have not heard any discussions about anybodies use of alternative medicines, perhaps it would be interesting to hear other peoples' experiences.

A completely different successful use of alternative medicine was my finding an Alergy expert who was able to test me and successfully prescribe the right diet and herbal pills which cured a very debilitating and excruciating skin itchy rash which I had had for 20 months. I had seen my doctor several times and seen the chief dermatologist at the Jersey Hospital and all they could prescribe was anti-histamines and steroid creams, which just soothed the symptoms slightly and were not good to take as a long term treatment. The dermatoligist wrote an article in which he said that there was a lot that is not known or understood about 'skin' and it is difficult to treat. So I would say try an alergy test with an expert!

I hope this isnt too long for my first email but I do believe in the efficacy of alternative medicines rather than fill myself up with chemicals that are alien to the body. I hope this may be helpful.

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Hello Fi Glover and Saturday live team,
I heard with interest your excellent interview with Kirsty, the woman who suffered post traumatic stress disorder after 7/7, and her experience of withdrawal difficulties from her antidepressant medication. At the risk of blowing my own trumpet, I hope you will take note of my latest book and let Kirsty know of its existence.

Although the book addresses the wider condition of depression rather than being specifically concerned with ptsd, I feel confident that she will find useful information and guidance from this modest but reliable book [see attached press release]. Plus, it has great cartoons!

Research frenzy

Thank you everyone for your encouragement & support, I am getting there slowly & dreaming of the sun!

I have wandered off into a frenzy of research and am now the country's leading authority on SSRI discontinuation sydrome (hardly!). Rambling research notes to follow....everyone should know this stuff....

Selective serotonin reuptake inhibitors (SSRIs)

The first anti depressants were introduced in the 1950’s. It was not until 1987 that the first SSRI, Prozac, hit the market. By 1991 Prozac was the biggest selling AD in the world with a market worth $1 billion.

A group has now been developed: fluoxetine (Prozac), fluvoxamine
(Faverin), paroxetine (Seroxat), sertraline (Lustral) and citalopram (Cipramil).

On their introduction they were hailed as a miracle cure. They were thought to be safer and have less side affects than the older models and were said to be non addictive. They are also used to treat illnesses other than depression, such as OCD, Bulimia and PTSD. No-one really understands why work but they are still prescribed.
Dr Timothy Petersen (Clinical psychologist at Harvard) says ‘despite there being a lack of evidence in efficacy between old and new (AD’s) clinicians perceive the newer agents to be more efficacious than the older drugs’. He believes that the general perception is that the side effects of the newer drugs are less and that this perception is fuelled by marketing.

SSRI’s work on the chemical systems in the brain (neurotransmitters) which carry messages between nerves, muscles, glands and other organs. They boost activity in these systems and increase the levels of serotonin in the brain by preventing its reuptake. This in turn improves the patient’s mood.

It has since been found that they are associated with a withdrawal reaction on discontinuation after regular use. This usually occurs when treatment is stopped abruptly. But can also happen when it is reduced slowly over time and even if a dose is missed for just one day.

The exact mechanism is unknown, but one explanation is that it is a result of the brain attempting to reach neurochemical stability after an abrupt change. The drug increases levels of neurotransmitters which can reduce the number of receptors present in the brain. Once the drug is withdrawn there may not be enough receptors left which can reduce the amount of seratonin in the brain.
The clearance of the drug can occur faster than the brain can readjust to the absence of medication. The down-regulated receptors will remain in a relatively hypo active state for days to weeks.

Symptoms usually occur 1-10 days after discontinuation. The time of emergence depends on the half-life of the drug. The half-life is defined as the amount of time it takes for the quantity of the drug in the bloodstream to reduce by half. These times vary from 10-21 hours for paroxetine (the shortest) to 2-6 days for fluoxetine (the longest).

Symptoms are usually mild and last an average of 10 days. They can also be severe and last for much longer. They respond rapidly (usually within 72 hours) to the readministration of the same SSRI. They are sometimes confused for a recurrence of the disorder being treated. The symptoms are often mistaken for illnesses such as ME of Glandular Fever. Patients can go through months of tests before SSRI’s are found to be the cause.

In 2006 Dr Black (from Dept of Psychiatry at Dalhousie University in Halifax Nova Scotia) developed a system of diagnosis. SSRI discontinuation disorder was defined by 2 or more of the following symptoms occurring within 7 days of stopping: dizziness, lightheadedness, vertigo, feelings of fainting, nausea, headache, visual disturbances, anxiety, shock like sensations, tremor, fatigue, insomnia, irritability, gait instability and diarrhea.

These symptoms are reported to range between 35% - 86% of patients in controlled studies. This is much lower in databases based on reported cases as the majority of patients do not report them to their GPs.

72% of psychiatrists & 30% of GPs were aware that patients might suffer. Only 20% of psychiatrists & 17% of doctors in a survey of 100 said that they always warned patients of the possibility withdrawal effects.

Out of a study of 42 patients in 2000: 82% suffered after 1-2 days, 94% after a week and 100% after 2 weeks.

60% of people who talked to MIND said that they had difficulty coming off their medication, of all the psychiatric drugs SSRIs caused the most difficulty.

Most people (50%) recover within a week, however some can take longer and a small percentage still report symptoms after 18 months.

If symptoms persist patients will usually be put back onto their original SSRI. They can, however, be put on one with a longer half-life which may reduce the chance of symptoms when they stop.

There is much debate and disagreement over the terminology of this syndrome. The pharmaceutical companies argue that ‘dependence’ is a syndrome involving various features and certain of these don’t apply here. Patients don’t, for instance, develop tolerance to the drugs or cravings and they don’t use them for non-medical (recreational) purposes. Therefore (the pharmaceutical companies say) they are not ‘addictive’.

Critics argue that the pharmaceutical industry has a vested interest in creating a distinction between ‘addiction’ and ‘dependence’. They say that the arguments against the term ‘withdrawal’ are used primarily so as not to frighten patients or alienate potential customers. ‘Withdrawal’ is a symptom of ‘physical dependence’, they say, not ‘addiction’.

Hugh James Solicitors are investigating compensation claims on behalf of 550 patients in the UK who have experienced adverse reactions to Seroxat. It can be very difficult to come off after as little as 2 days. They are bringing litigation under the Consumer Protection Act. This can, at the moment, only be based on it being the ‘worst in class’. Prozac actually rates as the worst for incidents of suicide and aggression so they can only bring action against Seroxat for withdrawal. They are currently trying to overturn this ruling so that they can take action for other SSRI’s. They told me that they constantly had people contacting them about other drugs such as Citalopram. Their medical experts agree that it is very difficult to get patients off Citalopram.

History:

Dr Breggin was the first to warn about SSRI withdrawl in his book ‘Talking to Prozac’ published in 1994.

In 1999 David Taylor (head pharmacist at the Maudlsey Hospital) published a paper called ‘Truth Withdrawal’. He had not only studied withdrawal symptoms of SSRIs but also had first hand experience of them. He dismissed the claims of the pharmaceutical industry and wrote ‘the real truth is that, for many people, antidepressant withdrawal syndrome is neither mild or short lived’. He raises the question that clinicians might be blinded to the negative aspects of new drugs by the wish to find harmless new cures. The selling point of SSRIs had been that people were not supposed to become physically dependent on them, unlike older drugs.

In 2001a US jury ordered GlaxoSmithKline (the manufacturers of Seroxat) to pay £4.6million to the family of a man who killed his wife, children and himself after taking Seroxat for 2 days. David Healy was an expert witness in this case. He showed that studies indicated rates of problems on discontinuation of paroxetine in over 30% of patients. Hence he argued that for GSK to ‘characterise paroxetine withdrawal reactions as very rare, transient, mild and/or virtually impossible to detect and distinguish from underlying psychiatric illness is simply an untenable position’

In 2001 GSK updated their label for Praxil (Seroxat) to include a specific mention of withdrawal reactions.

In January 2002 Br Peter Breggin published clinical evidence that all of the SSRI’s can cause serious withdrawal problems.

Some effective headway was made in 2003 by Dr David Healy and Charles Medawar of Social Audit, assisted by reporters at the Guardian, BBC Panorama and Richard Brook of MIND. The struggle is still ongoing.

In June 2003 the first Panorama programme was aired, this led to the Government stating that under 18’s shouldn’t take Seroxat and to the MRHA saying that adults shouldn’t suddenly stop.

In the programme Dr David Healy, an expert on Seroxat, said ‘If they aren’t the right drug for you they can cause a range of problems, they can make you suicidal, they can throw you into a state of mental turmoil and even if they are the right drugs for you, in some cases they can leave you hooked’.

The MHRA have issued warnings to prescribers about withdrawal reactions for SSRIs in 1993 and 2000 and warnings were added to patient information leaflets regarding suicidal thoughts in the early stages of treatment.

In 2003 the warnings were sent to all doctors and pharmacists in the UK however they added ‘the benefits of paroxetine in adults are well established in the treatment of depressive illnesses and anxiety disorders and are considered to outweigh the risks’. The MHRA are paid by the pharmaceutical industry who are in effect their employers.

In 2003 Seroxat was banned by the MHRA for under 18’s. They were the first regulator in the world to do so. Shortly after the US FDSA issued similar warnings.

In 2004 the MHRA issued a warning about sudden withdrawal of Seroxat.

2 months ago David Taylor (of the Maudsley) contributed to a paper published in the Journal of Affective Disorders which stated that it is not only Seroxat which causes withdrawal. The pharmacists information line for people with concerns about psychiatric medication told me my symptoms were ‘quite normal’. They said it doesn’t matter how slowly you taper off them you will still have effects. The symptoms will start any time within the first 2 weeks of stopping and last, they say, up to 7 days (although there are countless individual stories of them lasting substantially longer). If I had called 2 months ago (before the publication of Taylor’s paper) they would have told me that I had probably caught a bug.

MIND are still calling for other SSRIs to be looked into.


Yet the manufacturers still refuse to admit that they are ‘addictive’. User groups are not looking for a ban, as they agree that the drugs help millions of people, they are just looking for better information to accompany the drugs.

The information notes accompanying my particular brand of Citalopram contain no mention of withdrawal affects, only possible side affects during administration. In fact there is no mention of how to come off the drugs at all, not even a warning to do it slowly.