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Today's guest post comes from Sheila Herd who authors the Prozac Withdrawal blog. Sheila, like many others, feels the need to share her experiences because doctor's, drug companies and medicine regulators seem far too busy burying their heads in the sand.
Here's Sheila's story:
Sertraline Sufferers Stand Up and Be Counted!
It can often seem like it’s all about seroxat (paxil) to us folk struggling with the other SSRI’s; Seroxat Mad, Seroxat Sufferers, Paxil Progress, Seroxat User Group, Seroxat Secrets and so on, which is how this post came about, someone piped up “hey what about us Sertraline sufferers?”, and then I commented about also being a Sertraline sufferer, we were both invited to do a guest post about Sertraline [Zoloft]
I was prescribed Sertraline in 1998 when I had postnatal depression. I went from deep depression/anxiety to euphoria in the space of about two weeks, I felt pretty damned fantastic and became super mum, there was nothing I couldn’t handle. As time went on I continued to feel well but my emotions were dampened down, so I was functioning well, no depression, but no “joy” either, my libido was totally gone but hell who has time for that anyway with a new baby?
After about five months I decided I was feeling so well I didn’t want to be on Sertraline anymore, didn’t read the patient information leaflet or talk to a doctor, not that that would have helped anyway (hollow laugh). I just stopped taking them. My head felt terrible, it began to feel water logged, if I turned my head there was a time lag between my eye balls catching up with the fact that my head had turned, so dizzy, gradually intense sadness would kick in, really really intense sadness and anxiety, oh the anxiety, pumping adrenaline and nerves shot to bits. I went back on the Sertraline.
The doctor told me to do the alternate day thing, alternate days for a fortnight, then every third day for a fortnight, then one tablet a week, I did this various times over the next few years to no avail. I tried a pill cutter and halving the tablet, it wouldn’t break down easily without crumbling so that was unsuccessful. Every time I tried something, I ended up in worse shape than the time before, it was all getting steadily worse. I tried meditation, healing, exercise, cognitive behavioural therapy, counselling, fish oil capsules, NOTHING touched it. I pressured my doctor to refer me to a psychiatrist for advice, but she had no clue and could only recommend switching to another drug. I did switch to Citalopram for a while, and Mirtzapine, I felt constant fatigue on Mirtzapine, and then back to Sertraline.
This is my description of how withdrawal felt from my blog, I only recently found out that what was happening had a name, akathisia:
“5am and for about the 3rd night in a row I’ve barely slept, I can’t stop the adrenaline pumping round my body, my stomach is tightly knotted, I’ve barely been able to eat properly it makes me feel sick. I’m clammy, sweating and crying and P is trying to reassure me, but he has to go to work. I get up and drag myself through all the motions of the day and making sure boys get to school, I feel like the living dead, I make sure they get fed and make sure they and no one else is aware of what’s going on, I don’t hang around at the school gates. Oh I do kind of tell a few people I’m not really feeling right but I play it down. The constant adrenaline is tormenting me on the inside and I can’t stop it. It’s been building up over a period of months and I’ve been fighting and fighting the feelings but it seems to have reached a peak of exquisite torture. It’s like being at the top of a roller coaster that never stops. Someone else mentioned birdsong, and it was a funny thing, the torture was worse in the mornings and over the summer months while it was slowly building, birdsong in the morning outside the window had become a kind of torture as well. I had to go to work only 2 days a week and God only knows how I managed it. I had taken my last Sertraline tablet months ago, and come off it as per the doctors instructions, and now my depression/anxiety was back tenfold to punish me for daring to presume I could stop taking it. I must be wired up wrong, no one else feels like this do they? What is wrong with me? Maybe I really am insane, maybe I just can’t cope with life without my tablets, how come everyone else can cope with life, and I can’t? There must be something fundamentally wrong with me. By now the Orwell Bridge was beginning to look a bit attractive and I just wanted to escape the adrenaline surges torturing me, my nerves were in shreds”.
This was 2003, at the end of 2003 I gave in and went back on the sertraline.
I can honestly understand how suicide happens on these drugs.
In 2006 I attempted another withdrawal, at the same time my father in law became terminally ill, I helped a lot with the hospital appointments and helping my mother and father in law to cope while Peter was working in London, I tried toughing out the withdrawals again, and gave in again. I spent my father in laws final days and his funeral in an unnatural state of euphoria from going back on the sertraline.
So here I was, several years later and no further forward, and not for wont of trying! Everytime I went in a book shop or library I would try and find anything I could about antidepressants and depression, but nothing really enlightened me. I rummaged around on the internet but couldn’t find the answers. Until one day, I was browsing around Waterstones, and “Coming off Antidepressants” by Joseph Glenmullen jumped out at me, I read it avidly, and discovered TAPERING!!! But, all the examples in the book referred to liquid Seroxat or Prozac, I was really upset to find Sertraline was not available in liquid form. Armed with my new information about the simple concept of tapering, further digging led me to Dr Healy’s protocol of switching to the equivalent dose of liquid Prozac. These two pieces of information became my secret hope, I latched onto them. I decided to take a leap of faith and switch to liquid Prozac. At the beginning of 2007 I marked up my calendar with a schedule, I was going to go down from 5ml to 4.90ml the first week, 4.80ml the next week and so on, as my sons would say “epic fail”. By about mid February the nightmare was unfolding again and I had to give in and go back to the top of my Prozac dose, I was devastated.
Still I hadn’t given up hope, Peter was sympathetic but he couldn’t understand why I didn’t just give it up and accept I “needed” the drugs like a diabetic needs insulin.
After lots more research, and Peter having interesting and enlightening conversations with a client who was a pharmacist about my problem, I started my taper again in May 2008, this time much much slower and here I am four years later down to 1ml liquid Prozac and still tapering. It has needed a lot of self-discipline. I kept a blog of my progress; I’ve been amazed to meet a few others who have been tapering longer than me.
My blog gradually opened up a whole world of people to me, and many heartbreaking stories of careers ruined, relationships broken and lives destroyed through these drugs. Seems I got away relatively lightly. Every time I hear a story on the news about a high school shooting, the shootings in Cumbria, violent suicides I wonder what the “hidden” story is. There is a huge assumption that these drugs are benign and harmless, they are not; they can cause extreme agitation and internal torture. They are dished out like smarties and people left to deal with the results. Starting them is like playing a game of Russian Roulette, you might be a lucky one who can take them and come off them with ease, or you might not. My understanding was that they were meant to be taken for only a year or so after you feel “well” but many many people are stuck on them for years or forever, I know many people who’ve given up hope of coming off SSRI’s and I hear many people say “oh I’ll be on these the rest of my life”. There is NO support or advice in place through doctors or psychiatrists on how to taper safely off the drugs. I know Bob has been looking for it as well and has yet to find it....if anyone does find any help in the UK, please let me know, although it’s a bit too late for me now as I’ve almost done it myself bar the last 0.90ml but I know a lot of other people who might like to know!
Thanks Bob for inviting me to write a guest post here, huge admiration for the work you do, keep on keeping on!
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Sheila's blog can be read HERE
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