BBC news - are you willing to share your story?

[VanessaC]

Good morning everyone,

 

I am wondering if you can help me. I work for BBC news and we are looking into a story on prescription drug dependency.  There is currently a review looking into prescribed medication that could be addictive, or difficult to come off. It includes antidepressants (and also GABAs, benozodiazepines, z-drugs, opioid pain medication.) I know they can be life saving for some but this story is looking at people coming off them and there seems to very little support for people trying to withdraw.

 

I am wondering if anyone trying to come off them at the moment is willing to share their journey with us. I know that this can be a really difficult time so no problem if not, we just want to show the reality of what people are having to go through.  If this is something you think you can help with, please PM me and I can send you my details.

 

Many thanks for your help,

Vanessa Clarke

[Shep]

Thanks for joining our site and writing about the difficulties of psychiatric withdrawal from the perspective of those with lived experience. 

 

Please note that there's not a lot of evidence that these drugs are "life saving", especially to the degree they're being touted. Here are two recent articles:

 

Suicide in the Age of Prozac

 

Antidepressant Use More Than Doubles Risk of Suicide Attempts

 

Not to mention the risk of developing dementia. 

 

And there many more articles like this over on the Mad in America website. 

 

Please note we also have a research article section on SA which you may find useful. 

 

From journals and scientific sources

 

[Onmyway]

Hi Vanessa, 

one aspect of withdrawal that I have found hardest to deal with in the UK system is the outright denial of GPs of withdrawal effects, in spite of recent evidence from scientific journals and even acknowledgement by pharma companies. As a result they refuse to prescribe medicine that is necessary for tapering - i.e. liquid version of the drugs or lower doses. Not to mention switching patients around the merry-go-round of drug changes and in the process worseing the situation manyfold. The withdrawal effects have been documented quite a lot recently in popular media and scientific journals but my GP *refuses* to read them, for example. 

 

I live in London and would be happy to talk in person though I would not appear on camera.

I hope you have already read the book "Anatomy of an Epidemic" by Robert Whitaker and "The Emperor's New Drugs" by Irving Kirsch (summarized pretty well here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172306/) 

 

As per Shep's point above - Robert Whitaker talks about how increased suicide ideation in the first prozac trials was then re-cast (as a marketing ploy) by the pharma companies as a danger of the underlying depression even though the placebo groups had less suicidal ideation). That's how "the  antidepressants save lives" idea came to be. How could you tell your friend not to be taking antidepressants? What if she commits suicide? Wouldn't it be your responsibility? Note that Germany refused to approve Prozac because of suicide issues initially. 

 

You can get a lot of personal stories also from reading through the Introductions forum as well. The suffering is heart breaking.  

Good luck on your project. 

Also happy to help with scientific research (I am a health care researcher who believed the serotonin hypothesis and all until withdrawal hit and opened my eyes). 

 

 

 

[AlanC]

56 minutes ago, Onmyway said:

one aspect of withdrawal that I have found hardest to deal with in the UK system is the outright denial of GPs of withdrawal effects, in spite of recent evidence from scientific journals and even acknowledgement by pharma companies. As a result they refuse to prescribe medicine that is necessary for tapering - i.e. liquid version of the drugs or lower doses. Not to mention switching patients around the merry-go-round of drug changes and in the process worseing the situation manyfold. The withdrawal effects have been documented quite a lot recently in popular media and scientific journals but my GP *refuses* to read them, for example.

 

This has been my exact experience: flat out refusal to recognise withdrawal can last more than a month, and an insistence that the symptoms must be the return of the original condition or the development of other, new conditions necessitating additional medication. This is, apparently, a common occurrence and has been identified by the Royal College of Psychiatrists and in the Government funded research by Davies and Read as leading to further, unnecessary medication.

 

I have personally been left without any support from either of my GP's because they refuse to acknowledge any of the recent research or the recommendations of the Royal College of Psychiatrists, and are openly contemptuous towards the suggestion that I could still be suffering withdrawal after 15 months.

 

@VanessaC perhaps you could include the fact that some of us are being left without any form of support in this situation.

[MRothbard]

I'd be glad to share, but I'm a yank. Don't know if that matters.

[Sassenach]

Hi @MRothbard

 

Hi

I am in the UK and intend to participate.

The fact you a " Yank " will help to support the fact that this a worldwide issue.

The BBC may not be perfect but is unusual , I would say unique but I do not know that for a fact, in that it is publicly funded.

It has no commercial income and is governed by a charter to be fair, unbiased and accurate in it's dealings.

They have already run at least two radio programmes, one on a primetime chat show, on this issue.

These were before Royal Society's change of opinion.

They are regularly accused of being both left-wing and right wing, pretty clever don't you think.

They broadcast around the world.

Of course individual journalists and the professionals who will have an opinion can influence perception but overall they are better than most.

I would therefore encourage anyone around the world who is facing this issue to give them info.

We will eventually be heard.

Congratulations on being free from these poisons.

I hope you are well.

 

Sassenach

[DeeVee]

In response to the post from Vanessa Clarke from the BBC : Yes very much so! Currently still trying to get off an antidepressant, have been for several years. 

Edited July 11, 2019 by DeeVee

[MRothbard]

I'm not keen on government-run anything, but it's not a problem for me in this case. The fact that someone wants to do a story on this is a good thing.

[DeterminedAnna]

11 hours ago, VanessaC said:

Good morning everyone,

 

I am wondering if you can help me. I work for BBC news and we are looking into a story on prescription drug dependency.  There is currently a review looking into prescribed medication that could be addictive, or difficult to come off. It includes antidepressants (and also GABAs, benozodiazepines, z-drugs, opioid pain medication.) I know they can be life saving for some but this story is looking at people coming off them and there seems to very little support for people trying to withdraw.

 

I am wondering if anyone trying to come off them at the moment is willing to share their journey with us. I know that this can be a really difficult time so no problem if not, we just want to show the reality of what people are having to go through.  If this is something you think you can help with, please PM me and I can send you my details.

 

Many thanks for your help,

Vanessa Clarke

Hello Vanessa,

 

Thank you for joining the community. Even your very presence here, and the possibility of this massive story getting the exposure it deserves, means so much. As you're looking around SA, please keep in mind it has literally been a lifesaver for me, and no doubt many others. 

 

My experience is with Seroxat, an SSRI, so my thoughts relate to this class of drugs. Just to echo the above:

• The evidence that antidepressants are 'life-saving' is flimsy. In the case of SSRIs, there is much more evidence that they can bring on suicidal urges where there weren't any previously. I believe the early trials of sertraline had to be abandoned because too many healthy volunteers developed the awful condition akathisia, which is tied to suicidal urges. Many of those volunteers had to be sedated with benzodiazepines because of this. I wish I could remember where I read this – it was in a number of very credible sources.
• Now that SSRIs have been in use for decades, there seems to be more research into the effects of long-term use. The picture being painted by these studies is not pretty, as @Shep has referenced above. I worry that the overprescribing of antidepressants is a health time bomb.

One thing that doesn't seem to get much coverage is the repercussions these drugs have on people who want to start a family. Or, as in my case, the implications on people who, after starting the drugs, finally meet 'the one' and want to fulfil a lifelong dream.

 

I have been taking Seroxat since I was 22. I am now 39 and have tried to stop Seroxat at least three times during those 17 years.

 

I met my partner aged 30 in 2010, and by 2012, we realised we wanted to start a family.

 

So from early 2013, I tried again to stop taking Seroxat. But my psychiatrist-approved, supposedly slow nine-month taper from 40 to 0mg led to terrible withdrawal. So by early 2014, I had returned to 20mg. It took me another four years to build up the courage to try tapering again. And in February 2018, aged 38, I started a much slower taper from 20mg. I used the 10 per cent reduction as recommended on this site – it is really important to make percentage reductions of your last dose, rather than absolute cuts. See this explanation and this data, especially the graphs.

 

By late December 2018, I tapered to just less than 6mg, but then the horrendous withdrawal symptoms kicked in. I suffered those hellish symptoms for two months, but by early March 2019 had to admit defeat and increase my dose slightly. I had to do this again in early May, settling for 7.72mg. Both tiny increases helped immediately, but not significantly, and since that December 2018 crash, I have been in a nightmarish state of limbo, waiting for the withdrawal symptoms to abate or at least stabilise enough to continue with my taper. I want desperately to free myself from Seroxat, but given my experiences, when I resume my taper, I will probably have to go more slowly and make smaller percentage reductions.

 

I will be 40 this year, and my biological clock is ticking. However, I could not bear to get pregnant and subject our growing baby to the horrendous risks of Seroxat. Not only is it proven to increase the chance of heart defects, I am certain it would damage a developing brain – and I believe science will bear this out in the coming decades.

 

And then there is the issue of neonatal withdrawal. Having gone through withdrawal myself, I could not put my own child through this awful experience. Despite its claims to the contrary, the medical establishment doesn't really know the long-term implications of exposing developing babies – or people in general – to SSRIs, or many of the psychiatric drugs that are so casually given out. I am not willing for my child to be a guinea pig. I myself have been a guinea pig, thanks to a Seroxat prescription issued after a highly subjective survey in a 10-minute GP appointment. I refuse to let the cycle repeat.

 

My full story as a Surviving Antidepressants thread is here. If you'd like to know more, please message me. Feel free to lift anything I've written here or in my thread.

 

If you already have enough replies and are focusing on them, then that's brilliant, and I understand. I'm grateful you've come here and are doing this work.

 

Thank you,

 

Anna

 

PS. There are loads of fantastic resources on this site. Here's some of the things that have stood out for me, as well as other things I've found over the years:

• Work by Scottish government on prescribed drug withdrawal: http://www.parliament.scot/GettingInvolved/Petitions/PE01651
• All-Party Parliamentary Group for Prescribed Drug Dependence: http://prescribeddrug.org/
• A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: Are guidelines evidence-based?: https://www.sciencedirect.com/science/article/pii/S0306460318308347
• Tapering of SSRI treatment to mitigate withdrawal symptoms: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30032-X/fulltext
• NHS figures on antidepressant prescribing, 2015-16 and 2016-17: https://www.nhsbsa.nhs.uk/sites/default/files/2018-04/Antidepressant prescribing 201516 and 201617 FINAL v2.xlsx
• PHE’s Prescribed Medicines Review: update for the APPG PDD – 7th February 2019: http://prescribeddrug.org/wp-content/uploads/2019/03/APPG-7-2-19-PHE.pdf
• SSRI and SNRI withdrawal symptoms reported on an internet forum: https://www.ncbi.nlm.nih.gov/pubmed/29758951

 

[DeterminedAnna]

14 hours ago, VanessaC said:

Good morning everyone,

 

I am wondering if you can help me. I work for BBC news and we are looking into a story on prescription drug dependency.  There is currently a review looking into prescribed medication that could be addictive, or difficult to come off. It includes antidepressants (and also GABAs, benozodiazepines, z-drugs, opioid pain medication.) I know they can be life saving for some but this story is looking at people coming off them and there seems to very little support for people trying to withdraw.

 

I am wondering if anyone trying to come off them at the moment is willing to share their journey with us. I know that this can be a really difficult time so no problem if not, we just want to show the reality of what people are having to go through.  If this is something you think you can help with, please PM me and I can send you my details.

 

Many thanks for your help,

Vanessa Clarke

Hello again Vanessa,

I've found it... One of the things I read about the sertraline (Zoloft) trial: https://davidhealy.org/zoloft-study-mystery-in-leeds/ 

 

Dr Healy has been a leading light in championing and exposing the issues related to antidepressant withdrawal. He has already worked with the BBC.

 

There is much, much, much more than meets the eye when it comes to the 'benefits' of antidepressants. And although it's still touted in many places, the low serotonin theory for depression has long been disproved and exposed as a marketing gimmick by Big Pharma.

This tragic, fairly recent, story also rings alarm bells – antidepressants can often prompt suicidal urges or activate pre-existing urges, especially in the first few weeks when they are taken. Obviously I'm biased, but it concerns me that, to my knowledge, there hasn't been any investigation into, or discussion of, the possibility of antidepressants  tipping this young woman over the edge. As I understand it, all antidepressants carry explicit warnings about increased suicidal urges in their packaging in this country.

 

Finally (promise), earlier this year, this Seroxat group action case finally made it to court. Sadly, there was no media coverage and I can't find any follow-up pieces on the hearing.

 

Hope this is all useful. Thank you again.

[Linus]

On 7/11/2019 at 11:11 AM, VanessaC said:

Good morning everyone,

 

I am wondering if you can help me. I work for BBC news and we are looking into a story on prescription drug dependency.  There is currently a review looking into prescribed medication that could be addictive, or difficult to come off. It includes antidepressants (and also GABAs, benozodiazepines, z-drugs, opioid pain medication.) I know they can be life saving for some but this story is looking at people coming off them and there seems to very little support for people trying to withdraw.

 

I am wondering if anyone trying to come off them at the moment is willing to share their journey with us. I know that this can be a really difficult time so no problem if not, we just want to show the reality of what people are having to go through.  If this is something you think you can help with, please PM me and I can send you my details.

 

Many thanks for your help,

Vanessa Clarke 

 

Hi Vanessa,

 

I think it is wonderful you are going to do a story on this, and that you are willing to listen to people who are suffering form prescribed harm. May I also suggest there are some very good experts who could give you valuable input for your story. You can find them on Twitter, I will just mention a few: David Healy (psychiatrist and psychopharmacologist), Joanna Moncrieff (psychiatrist), John Read ( Professor of Clinical Psychology ), Christopher Lane (professor with an interest especially in side effects) and Michael Hengartner, Phd, researcher in evidence-based medicine.

 

You may also be interested in a recent re-analysis (see link below) of the Cipriani meta-analysis published in the British Medical Journal. Several media outlets (see for example https://www.theguardian.com/science/2018/feb/21/the-drugs-do-work-antidepressants-are-effective-study-shows) last year claimed antidpressants were effective based on this meta-analysis, a case of bad science reporting, because this meta-analysis may have shown a statistical difference in comparison with placebo, many experts have shown there to be no clinical significance. The re-analysis basically shows Cipriani inflated his results (results that already implied antidepressants only have a minimal effect), pretty much showing antidepressants are no better than placebo, however unlike a sugar pill, they can cause serious side effects and one in four will experience serious withdrawal effects (see https://www.sciencedirect.com/science/article/pii/S0306460318308347), as people on this forum can attest to.

 

Thanks again.

 

 

[Sassenach]

Thanks Linus.

 

Good post

 

Sassenach

[Bellamy]

Hello Vanessa,

 

Thanks for your interest. I'm not too far from you and would dearly love to take part, however I am currently bedridden and not well enough thanks to withdrawal from paroxetine - it's been over five months now with no remittance. I didn't even try to come off the drug - I was just doing an extremely slow taper to get to a point where the side effects were more manageable. The main issues for me are a lack of acknowledgement by the medical profession for what sufferers are going through, the lack of any kind of help for us, and the difficulty of getting disability benefits when we become too ill to work.

[ChessieCat]

Are you aware of this?

 

PE01651: Prescribed drug dependence and withdrawal

 

Calling on the Scottish Parliament to urge the Scottish Government to take action to appropriately recognise and effectively support individuals affected and harmed by prescribed

 

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

 

There are submissions of both medical professionals as well as sufferers from around the world.  My submission was accepted.  Two weeks after reducing my 100mg Pristq to 50mg, I couldn't type (typist for 40+ years) and only about 4 hours after updosing I was able to type again.

 

There are about 300 public submissions available to read.  They are concise case studies of people who have suffered from withdrawal and adverse reactions from psychiatric drugs.

 

You are welcome to share my story.  I am now down to 2.75mg Pristiq (compounded).  This is what I submitted to the Scottish Parliament:

 

On 2/26/2018 at 10:07 AM, ChessieCat said:

My submission to the Scottish Parliament:

_______________________________

PE1651/TBC

Submission of 5 February 2018

 

I am a 60 year old female.  Antidepressants for approximately 25 years.

 

I now believe that if I had received appropriate counselling and support and been taught, and used, non drug coping techniques that I would never have needed to take a psychiatric drug.

 

My background, year and age:

 

1976 – 19 – father died, broken engagement

1977 – 20 – mother remarried

1980 – 23 – married

1982 – 25 – 31 year old husband had mild heart attack

1985 – 28 – unexpected emergency caesarean

1987 – 30 – husband open heart surgery for 4 by passes, ended up having 7

1988 – 30 – caesarean after trial labour

1992?  35 – first antidepressant use

1994 – 37 – husband home permanently – Wegners Granulomatosis

1999 – 41 – husband’s death

 

Originally prescribed Prozac which caused weak muscles.  I ended up having trouble walking because it affected my hips like when you are pregnant and your ligaments loosen.

 

Long term citalopram prior to current one.  Late 2010 to late 2011 I had about 5 major life stressors.  I had a major breakdown at my daughter’s wedding.  From what I now know about ADs I think that the citalopram may have reached tolerance.

 

During 2012 I decided to cold turkey citalopram.  I felt great for a few months but then became very sick, basically bed ridden, for about 2 and ½ weeks with what felt like the flu with aches and pains but was not the flu.  I had no appetite and had trouble eating and lost 8 kgs in weight.  From what I now know I believe that this was withdrawal from the cold turkey of citalopram.

 

Not long after this I was prescribed Pristiq 50mg.  I was told by the psychologist that I would be on an antidepressant for life because it was like a diabetic needs insulin.  I felt okay and had incredible focus but felt no pleasure in anything.  The Pristiq dose was increased to 100mg.  I started feeling more pleasure.

 

My diastolic blood pressure rose after increasing to 100mg Pristiq and my regular doctor did not make the association between the two and increased my BP medication.

 

Every now and then my heart would feel like it “flipped”, which other people may use the term miss a beat.

 

Almost every day I would have a 2 hour sleep and still sleep through the night.

It wasn’t until my dose got lower that I realised that I had been feeling constantly on edge and unsettled.

 

2015 I realised that I was sweating a lot in the middle of winter.  I also had aches and pains.  I began researching Pristiq side effects and realised that I was most likely suffering serotonin toxicity.  

 

October 2015 I reduced my dose from 100mg to 50mg Pristiq.  I experienced extreme cog/brain fog for 2 weeks and everything I did required my undivided attention, even walking.  I began researching antidepressant withdrawal.  That was when I discovered the website survivingantidepressants.org.  Several days later  I was unable to type.  Being a professional typist since the age of 16 I knew that something wasn’t right.  It had been suggested by the website moderators that I increase my dose of Pristiq.  When I couldn’t type I took extra Pristiq and after about 4 hours I was able to type again.  Because I had a benchmark I knew that it was because I had reduced my Pristiq too quickly. 

 

In Australia Pristiq is only available in doses of 50mg and 100mg and the advice by Pfizer is that tablets should be taken whole.  Thankfully other members on the Surviving Antidepressants forum had successfully cut Pristiq tablets and also had them compounded with slow release formula and experienced no problems.  I was fortunate enough to locate a compounding pharmacy which has been compounding my Pristiq for me since November 2015.  Surviving Antidepressants recommends tapering by no more than 10% of the previous dose every 4 weeks.  I have been using this recommendation as a guideline for my taper.

 

After I updosed I held at 75mg for 2 months.  I then attempted a 10% reduction.  By the 3rd day I had intense and painful ear pressure and a front of brain headache.  I realised that I could not continue to tolerate the pain and pressure and I updosed by 2.5 mg to 70 mg.  This made a big difference.  Again within a few hours I felt relief as the pressure subsided and I only had a very mild headache which lessened over the next few days.  After 3 more weeks I reduced by 2.5 mg to 67.5 mg and only suffered tolerable ear pressure for a few days.

 

When I got to 50mg I held for 3 months.  I did a 7 week hold at 20mg.

 

As my dose got lower I started to feel more like my old self.  I started to realise how numbed my emotions had been over the many years on an antidepressant.  In May 2017 I bought a new car and felt some excitement (25mg Pristiq) but it wasn’t until September 2017 (19mg Pristiq) that I experienced real excitement and realised that back in May it had been a dulled excitement. 

 

As at the beginning of February 2018 I am down to 13mg.  Even though I have been tapering carefully I have still been experiencing withdrawal symptoms.  Thankfully they are mild but there are times when I am unable to do certain things.  It is mainly cognitive things which are affected but I do experience physical withdrawal symptoms as well.  Trouble concentrating and reading, mild anxiety, random thoughts, appetite changes, muscle cramps, occasional sleep issues.

 

I appreciate the opportunity of relating my experience.

_______________________________

 

 

 

[Altostrata]

@VanessaC you may reach additional people if you post on our Facebook page https://www.facebook.com/survivingantidepressants/

[VanessaC]

Thanks everyone, it’s great hearing all your experiences and the additional information, we are filming in the Uk so I’m only contacting people that are based here but I appreciate all your replies. Thanks,  will look at the Facebook page now. 

[Skyroxy]

Hi Vanessa

I would be wiling to help you with your programme

I have just joined this forum and only just found out there is support for withdrawal from antidepressants. I have been struggling without any help for the last year.

I was a creative arts teacher working in a mental health unit/ Recovery College NHS. I had a breakdown last July and was off sick until February this year. I have left my job as unable to work in such a stressful environment.  I have been on citalpram for 13 years and had no idea about withdrawal protocal or that the drug can stop working. I was having brain zaps that were so bad I was referred to brain scan as nurologist though it was a brain tumour. Last July when I became too unwell to work my dosage was upped to 40mg but after a month I became much worse, panic attacks, agitation, terrible mood swings so my doctor told me to come off in three weeks as my tablets were not working any more. I did not even know that happened. This was in October, I then felt sick for 4 months, and everything became a lot worse. I had no help what so ever. I did not know that withdrawal could be so long or be effected by coming off so quickly. I only know this when I heard about CEP a group that campaigns for better awareness of drug withdrawal last week. This information has really helped knowing that I am not alone and that my doctor has made mistakes. I feel some hope that I will get better but also angry that a year down the line I am still not well enough to work and that it was so hellish to come off these drugs with no support or understanding from my doctor. I am willing to share my story to help others and raise awareness.

[Katy398]

Hi @VanessaC

How did your programme go?  I’m very interested where you are at with it. Best wishes with it all Kind Regards Kx

[sunnysideup69]

Hi @VanessaC, this may be too late but I'd consider talking to you about my experience of WD. 

Best wishes,

SSU

[Katy398]

I would also consider talking to you. I really want this terrible situation to be made public the more people who know about this the easier it will be for sufferers to live with it.