I was prescribed Sertraline (Zoloft) in 1998 when I had postnatal depression. I was told to take it for a year to 18 months. I went from deep depression/anxiety to euphoria in the space of about two weeks, I felt pretty damned fantastic, 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. After a few months of feeling well I decided 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. 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 surgery to refer me to a psychiatrist for advice,but the psychiatrist 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. Yet another psychiatrist recommended halving my dose of Sertraline and taking diazepam to mitigate the withdrawals, so replace one powerful drug with an even more powerful addictive drug.
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.

In 2006 I attempted another withdrawal, but at the same time we found ourselves going through a stressful life event, I tried to tough it out but ended up back on the Sertraline again.
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, P 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 P 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 sucessfully tapering. It has needed a lot of self-discipline. I kept this blog/diary of my progress; I’ve been amazed to meet a few others who have been tapering longer than me. Nowadays my withdrawals are fairly benign, but I still feel a bit scarred from the experience,the akathisia has left me still feeling like my nerves are quite raw and very close to the surface but I can live with that now.
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.....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, but I know a lot of other people who might like to know!

Friday, 22 March 2013

1.30ml (5mg) - Remember that Light at the end of the Tunnel?

Well I think in the end it was an oncoming freight train. I never really seemed to get any better, many insomniac nights and anxious low level depressed days, so hard to keep functioning and so very exhausting. It’s in my nature to soldier on regardless, I’ve always been Mrs Reliable, always turn up when I say I’m going to turn up, never off sick, whole years with no sick leave, always do what I say I’m going to do. Now I feel like Mrs Flaky and unreliable. I never know from one day to the next how I’m going to be. I must be a great actress though, no one seems to believe me and everyone tells me I always seem the same and I hide it well. Either I should be on the stage or they’re being polite I can’t work out which.
P has been trying to persuade me for ages to go for another up dose, so since nothing else seems to be working, and I’m desperate to feel better, we settled on 1.30ml (5mg), this could either go well, or totally backfire, anyone who knows anything about drug withdrawal or reinstatement knows that recovery comes in "waves" and "windows" and as I've had a lot of lovley "windows" this week I'll choose to be optimistic that the "windows" of getting better will increase and the "waves" will decrease.

I’m one week into the up dose and it’s been a bit of a roller coaster week, initially I felt like a plant that’s been starved of water coming back to life, all the anxiety and dread cleared, as though someone had waved a magic wand, I felt so well the contrast made me realise just how “unwell” I’ve really been feeling the past 6 months. On day 3 in the evening I had intense anxiety and dread kick in, had a poor night and woke to very very intense anxiety, it can be so intense and physical it can reduce me to tears.  I was working with P that day and decided to soldier on, as the day wore on the intense anxiety lifted again and I was well again. The next day at my other job was all good, I felt great, the following day was ok and then last night moderate anxiety kicked in again and I was wired and awake all night. I need to give it a few weeks and see if I settle down. In any case I’ve almost come to the conclusion that I might never achieve my goal of all the way off the drug without being so ill that my whole life goes down the pan, and I might just have to find a permanent stable dose and stick with it. 

In other news I have my new piano at last, electric so I can practise with headphones and not disturb anyone; this is a great way of just getting lost in the moment and so relaxing.

At this point here, I want to say thank you to my husband, my parents and a couple of friends in real life who’ve  been so supportive and been there for me going through this, I think they’ll know who they are if and when they read this.


a mental mum's little world said...

You're def not alone!
My depression has got worse since my daughter arrived in Jan and my meds were upped from 30 to 40 :(
I've had patches over the last 13 years since getting depression when have been totally free of meds, but the last 7 years I have been on the same one at the same 20 dose and was doing fine - balanced you know?
I think I'm one of those people who will be medicated for life.
Such a low dose is maybe not what you wanted, but it's really brave to try.
Will keep thinking of you and hope you find your balance soon! xxx

SM H said...

Hi (I can't call you "mental mum" can I, what is your name? LOL)
Thank you for your comment, I'm off to look at your blog now!

Mrs No Spend said...

I am on Prozac liquid have been for years now. I think about coming off , and then scared how I will feel(feel pants & emotional sometimes on it!) I think sometimes
too much. I can totally relate to anxiety & I think it is not until people experience it that anyone can begin to understand the feelings & dread of how it feels.
You hang in there & don't feel bad. If we could get new brains I would be first in the que ! xx

SM H said...

Thank you Mrs No Spend, long time no speak!

Peter said...

My wife is the bravest person I know and I love her to bits.

Living with any illness is harder enough but depression is a illness that is unseen by many and so many do not truly understand what people go through.

I love you to bits love and will always be here for you.


Anonymous said...

I am trying to get off these horrible drugs too. I think your story is amazing and you are so brave. I hope I can do it. I gave in and went back on Fluoxine after being off Effexor for 6 months. But now after reading this and finding the website support group, I plan to get off again and do my damndest to stay off them. God be with us all, we cannot do this alone.

SM H said...

Thank you for you comment Anon, most of us do end up doing this alone, or at least without medical support sadly. I think your best plan is to stabilize for a good amount of time on the Fluoxetine then when your ready taper incredibly cautiously and slowly using the 10% method and liquid Fluox. Loads of information and support here:http://survivingantidepressants.org/index.php?/index