Venlafaxine withdrawal - there is hope!

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I've previously posted on another discussion thread about coming off venlafaxine - I was about to take the plunge myself - but rather than re-post on that thread I thought I'd start a new one to give my account of my experience and I hope a chance of light at the end of that awful tunnel for others.

Diagnosed with clinical depression many years ago most of my adult life has been spent on one or another SSRI - finally arriving at venlafaxine ten years ago as nothing much else was helping. At this time my mood was scraping the bottom of the barrel - emotionally I was empty & swung between desolate and merely oppresively sad.

I can't completely right off vnlfx - it did lift me initially and give me motivation, but unfortunately over the years the efficacy weakened and therefore the dose I was taking increased - until at the beginning of 2012 I was on 300mg daily.

As I progressed through last year it became obvious that not only was vnlfx not helping me in anyway, it was also producing some alarming side effects - these had crept in slowly over the years and I had been so caught up with my mental health I hadn't noticed. Forgetting a dose resulted in the most debilitating nausea, dry mouth and brain zaps - I began to fear going away and forgetting my medication or not being abe to get to the pharmacy for a prescription and running out. All the time I continued presenting myself as a contented, together, capable professional woman, and as any of us who suffer mental illness know, this 24/7 act is absolutely exhausting. By the autumn of this year I was sleeping in huge chunks. The sedative effect of the drug combined with being asleep being an excellent way of hiding from my problems, I found it all to easy to succumb to sleep. I'd sleep for ten hours solid at night, then wake for a few hours in the morning, feel sleepy and give in - only to wake again briefly during the evening before the cycle began again. Luckily working a shift pattern as well meant I could get away with this, but my non-working hours were spent asleep & hiding from the world.

I don't know why the lightening bolt hit, but once day I became aware that this was no quality of life & went to see my GP about withdrawal from vnlfx. I must emphasise here that my GP has been wonderful during the entire time I have known her, and I'm aware that I'm lucky to be in this situation. She was aware of anecdotal evidence of vnlfx withdrawal syndrome and we made a plan for a very slow dose decrease - suffering such marked side effects when late taking my meds meant that we were expecting a tough ride.

I cannot emphasise too much just how important it is to go slowly slowly slowy, and to reduce your dosages by tiny amounts. Each time I cut down too quickly, or reduced the dose too quickly I'd be pole-axed by side effects and mental disturbance. A couple of times I did think about giving up, and remaining on vnlfx for life - but the thought of returning to that hideous emotional no-man's land was enough to motivate me to pick up & go back to the previous 'good' dose again & persevere. The key stage was probably getting down to a quarter of a 37.5mg tablet (told you the dose reduction needs to be minute!) and then my doctor adding in fluoxetine 20mg for two weeks before I took the plunge and took my last ever dose of vnflx. That was over six weeks ago and the relief I feel now is immeasurable. I now have clarity of thought and emotion to the extent that I can't ever remember having before. Don't get me wrong, I'm still clinically depressed, there is no magic wand, but I feel just like I have been released from venlafaxine taking my mind prisoner. I don' t think that unless you have experienced this drug first hand you can possibly imagine just how much it really ***ks with your mind - absolutely terrifying.

Key to my success has been managing to find a therapist that by some fluke I have a superb connection with and weekly sessions with her have been more valuable to me than any drug ever has. I expect to be seeing her for a very long time to come - to reiterate i'm by no means 'cured' but am happy at last to be back in control of my mind.

Happy to pass on further details of what worked for me on my withdrawal - I kept a diary, helps you have faith to get through the bad days - but please don't expect miracles, I know that just because it's worked for me it may not suit anyone else.

But - please do have hope! I was one of the many in despair on here a few months back not ever being able to see a way to get free of this hideous drug, but I've done it, so it can be done

xxxx

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  • Posted

    I was encouraged to read your post. I thought it was me being neurotic when I felt really weird after missing a dose of venlafaxine - but now I know it's not just me! I'm not ready to come off venlafaxine yet, but I've promised myself that I will eventually. It was a lifesaver for me, and luckily I haven't noticed any unpleasant side-effects. I also take mirtazapine and haloperidol, and my doctor has suggested I come off the haloperidol first. I open up the capsule and tip a little bit extra out each time before putting it back together and swallowing it. Slowwwwly does it!
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  • Posted

    I have never posted on a forum before and I am a bit nervous. However withdrawing from Venlafaxine is making me nervous and anxious about everything. Venlafaxine has been part of my life for about six years. 150mg per day taken each morning. (I am taking the capsules.) At the end of January 2013 I made the decision to get off these drugs as I no longer wanted to feel disconnected from my emotions, family, friends etc. I was mostly calm, sane and still breathing in and out but life was a mechanical function. Having missed capsules in the past I expected the withdrawal to be horrendous although nothing had prepared me for how truly awful I would feel.

    Day one - take 1 x 75mg and 1 x 37.5mg capsule when I would normally take my 150mg capsule. My doctor thought this was a good plan.

    The following is a list of the withdrawal symptoms that I endured:- anxiety, anger, sadness, thoughts of uselessness, impatience, frustration, inability to express myself, memory loss, fuzzy brain, severe headaches, nausea, diarrhea, jumpiness, hallucinations, vivid dreams, sleepiness, body aches and pains, clumsiness, mis judging distances, inability to focus, restlessness at night - the list goes on and on!!!

    Anyway I carried on and somehow reached a point last weekend when I felt ready to drop my dosage again. Now I am taking only 75mg per day, first thing in the morning, and all of the above symptoms have fully returned with a vengence. On Tuesday I went back to my doctor and she admitted it was totally beyond her scope to help me through this nightmare. All she could suggest at the time was upping the dose until she could get some advice from a specialist. Me being the person I am agreed to increase the dosage again but I haven't done that. It must just prolong the inevitable. Surely all of us coming off this drug are going to experience withdrawal but I don't know what will be left of my life by the time I am free of it.

    I guess I am going to have to start opening capsules and taking out the little bits inside. The most important thing must be to not go up and down with the amounts as this really messes up the brain. Ask me about the time I started taking a capsule every second day. Not my best plan.

    People that don't understand mental illness and have never taken this medication do not understand how bad it is. My partner doesn't want me to come off the medication at all so is totally unsupportive so I can't even share what I am going through with him. I now have my own room and we barely communicate.

    Oh well, at least your post has made me believe that there is light at the end of the tunnel but it looks like a bloody long tunnel. sad

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  • Posted

    thank you all for your openess and honestly,, i was told just over 2 and half years ago, 6 months you will be fine and off these!!!!! No chance am in a terrible state, depressed,suicdal thoughts, sleep pattern messed up, no sex interest, has any one else experienced this?? thanks
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  • Posted

    I can agree with you about lack of sex interest, but by trial and error I did find ways round it - like timing my sex activity to certain times of the day, and I was very fond of my husband in other ways too. I was too embarrased to mention it to my (male) psychiatrist. Sleep pattern was also disturbed - it did improve when I gradually started to feel generally better , so there is hope. I can't advise you what to do, but I've found an attitude of "if you can't have what you want (ie great health) then take pleasure in what you've got" and be thankful for every day you get through. But I do know how difficult it is.
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  • Posted

    Hello, I've just come across this whilst doing some more research on withdrawal, and wanted to thank you for your posts and sharing your experiences. Its a real comfort to me to know there are other people out there (and in the Uk!) who understand the complexity of ven and the side effects (which you're not really warned about). I've been on Ven for about 10 years (175mg) and am starting to gather strength to face the withdrawal.. I am in fact terrified, having experienced over this time the various withdrawal symptoms when I've missed my dosage. Ive spoken with my GP about my intentions and feel i'd get the support which is good, but I also have a partner who is really not at all supportive of 'my emotions' and 'depression' and doesn't at all understand why people are depressed etc, so anticipating the vile mood swings, headaches, sweats and head zaps that will accompany the process is going to be tough. I'm scared about feeling really ill and having to pretend Im ok...which may stress me out and trigger depression sad

    Can anyone tell me how they coped with holding down a job and going to work whilst withdrawing?

    Rather naively i thought that after reducing the dose very slowly ( removing beads ec) to a certain point your body and mind would have adjusted over the period and you would in fact be starting to feel better !

    Any additional advise would be very welcome.

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  • Posted

    ps,, forgot to say that ive only just equated my lack of sex drive to Ven ... thanks Pixie22 and vanessa for sharing your experience so I know its not in my imagination !.. I know it sounds silly but i had an ingling, but in the last 2 years say its dropped right off a cliff... I used to think it was other stuff like work stress, tiredness etc...
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  • Posted

    Wow, what a great help these forums are! I've been on anti depressants for 20+ years now, but only on venlafaxine for about 18 months of that time. I am now ready to come off the tablets and have spoken to my GP about it. She advised me to half my dose (from 150mg to 75mg), which I did yesterday. Today, I have a pounding head, but seem to be ok otherwise. Reading your stories and questions is encouraging me, knowing that I'm not the only one going through this.

    I'll get my husband to read about the side effects so that he knows what he's in for. Bonus for him is, my sex drive should be back! smile

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  • Posted

    this forum could be really helpful to me. i have only been diagnosed with depression for 41/2 years but for most of that time i have been harming. i have horrible thoughts as well. my antidepressant has been changed many times. i am on venlafaxine and i think this is my fifth different antidepressant. i am also on buspirone, lamotrogine -as a mood stabiliser- and mirtazipine. previously i have had quetiapine and lithium. think lithium did me some good but i was taken off it because i developed under active thyroid.

    i have a good gp and use to have a good cpn and psych but both left unexpectedly last year and i was given another cpn who i just didnt get on with and she has now pulled out. i have also seen six locum psychs in 15 months and none of them have wanted to look at my medication - though i think the one i saw a couple of weeks ago is going to be better but he is prob only here for three months. he said he will add an anti psychotic to my meds - im not psychotic but know they are used as mood stabilisers as well -

    i think he is looking to add quetiapine because my sleep is really poor but hope he is taking me off something else. i feel pretty much like i have lost hope that i will get better but i know that meds can really affect your mood as well as trying to improve it. i try and explain to the people involved in my care that i cant think clearly and cant let any positive thoughts in my head because it seems to full to be able to rationalise anything. i do wonder if this is a side effect of venlafaxine.

    i also have a very poor memory and put this down in part to my depression but also to the ECT i was almost forced to have. i am thinking maybe i should cut my venlafaxine down and see if i would be better on no tablets and starting out again. at present i take 300mg of the normal venlafaxine. 2x75 in the morning and again at tea time. the last two mornings i have forgotten to take it and not realised until the evening. i have taken it this morning but am feeling awful. headaches, not sleeping, sick, diarrhoea just really zonked out. ive really struggledto type this as well because my fingers dont seem to do what my brain wants them to do. it does worry me how i will be able to manage to come off venlafaxine when i dont really have any professional support for this

    i know i said i have a good GP but she has indicated she has difficulties with me because i still self harm (well this is according to the cpn i didnt get onwith) even though they will provide additional support but its not as easy as seeing her for ten minutes every week or two and then not having the thoughts in between

    suppose im being a bit stubborn at the mo but really feel i cant count on support because it isnt regular and i dont really know who i will see in way of psych and when

    well thanks for reading this.i know it is a long post but good to see that people have come off the meds successfully. i did manage to come off 7.5 of zopiclone after taking it for nearly 4 years and i didnt have any side effects with that xx

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  • Posted

    Hi nicki16. I've just read your post and see you've certainly got a few problems, but i just wanted to say I've been taking venlafaxine (225mg) together with mirtazapine (30mg) for several years, and it really has stabilised me. My psychiatrist is in no hurry to reduce them, because they've been so effective. i did get off haloperidol, but then had to start it again when i had a major upset in my life. Now I'm cutting down again. However, you just have to keep trying until you find what helps you. I do know how unsettling changes in doctors, nurses, etc can be - it's a point I stress everytime they close a day centre or other support facility I've been using - but that doesn't stop them closing it! I also agree with you over the effect ECT can have on memory, it's wiped out whole chunks of my life.
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  • Posted

    Hi Pickle74

    I’ve never posted on a forum before, and had been surfing for advice relating to my depression and whether I should continue with my 225mg venlafaxine dosage when I came across your post yesterday. I skipped on and then only this morning realised that I haven’t stopped thinking about it.

    I hope that you aren’t offended by my asking how you are, and how things have been since your last post? Did you end up feeling ill and having to pretend to be okay and getting depressed feelings? Or did it go well? And has your partner or anybody else close to you been offering some support?

    The reason I ask is because I have had depression for a number of years and as a result, I find it difficult to trust people (I don’t mean trust them with my passwords and PIN numbers, but rather any of my time) and so I live a very isolated life apart from a very select few people who have somehow helped me to work through those barriers with them and given me what I feel are good enough reasons to involve them in my life.

    It’s not that I feel that my life is particularly special, compared to other lives; far from it. It’s that I feel that the avoidable risks of being hurt should be avoided.

    When I read that your partner is not supportive of your emotions, your depression and does not understand why people are depressed I felt very sad about it.

    You, or indeed any person with or without depression, will have emotions. Anybody who wants to be anybody else’s partner should be expected to be aware of that. Also, you deserve to have your emotions treated with consideration, and wherever necessary, support. Not just by your partner but anybody who cares about you and wants to be around you.

    I think it’s brilliantly resourceful and very comforting for people with similar health problems to be able to communicate with each other in ways such as this forum. However, I do not think that anyone (including health professionals) can accurately predict what your depression might feel like. Therefore enabling others to understand what you may experience is entirely a matter that you should feel in control of. If you would like to have the understanding of your experiences from your partner, I hope that you can feel as though that is a possibility; that you can deliver that information in a way that he can understand. If, without that attempt, he or she has informed you that they will not be supportive, then I hope that you are able to find a suitable and acceptable reason for why this cannot be achieved.

    You should not expect that people are entitled to say such things to you without an acceptable reason (and by this I mean a reason that is acceptable to you, not them) because of the nature of depression or any such mental illness.

    Depression, along with an enormous spectrum of related illnesses, is extremely difficult to communicate, diagnose, understand, treat and live with. What is not difficult to understand is that it does exist. It exists and the reasons for its existence are wide-ranging, complex and can in some cases have a degree of fluidity, in that they change as the depression develops.

    I do not think that it would be reasonable for anybody who lives with depression or is in a relationship with a person who lives with depression should take on the burden of discovering ‘why’ depression happens.

    However, I think that everybody in society has a responsibility to accept that depression does happen; and for many reasons.

    The reason that people can be expected to accept that fact is because it is very simple to understand, and can in itself enable and aid development in research and recovery, by providing a useful position from which medical and political bodies, as well as all other members of society can work towards making life more bearable for those with depression.

    I hope that you can feel as though you do not have to feel the pressure of pretending to be okay, in order to allow your partner or others to continue to take the stance of not understanding why people are depressed, and using that as a way of neglecting to offer you the support and understanding that you are entitled to.

    I do not intend to cause offence with any of the opinions that I have expressed but if any has been caused I would humbly welcome a reasoned discussion of it.

    All the best wishes,

    P

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  • Posted

    Dear P

    I wanted to thank you very much for your email and the sense you have made to me. It made me cry when I read it, as it made me realise that people do understand and care about others going through difficult times. Apologies its taken me a bit longer to come back to you, as I wanted to let you know how much I appreciate your honesty and clearly have demonstrated what I knew all along about the stigma of depression and how I always feel like I'm fighting a losing battle with trying to make my partner understand it.

    Since I posted initially, my partner and I have split up as he was continously calling me 'histrionic' (without fully understanding the medical diagnosis of it, it was just an adjective he found quote dramatic i think to explain behaviour which he felt was 'out of order') as well as rather charmingly calling me 'mentally ill' and 'schizophrenic' because his own issues of bullying and aggressive behaviour was making me unable to cope with such a volitile style of living. Depression was always the stick he used to beat me with - it 'scared' him (as if it was catching) instead of trying to understand the cause and effect.. and certainly being shouted at and critised and called mentally ill by someone that is meant to love you, doesnt exactly foster the right environment for support. Therefore I find myself living in a rented room and getting my life back together. The thought of going through venflaxine withdrawal at the moment, isnt something I am going to undertake right now, so it is something i will work towards for the Spring so that the weather is better and I will be more settled and feel stronger to tackle it. I dont even consider myself depressed anymore, but there was always a feeling that even 'normal' people get angry and upset, but because i had the tag depressed, then i must be suffering from depression... i was fighting a losing battle tbh.

    From a postitive point of view, at least i dont have to pretend to be ok anymore, in fact without the influencing factors of his own issues effecting me, I am OK and more, but of course it makes me very wary of people. I used to always be upfront about it, in an attempt to battle the stigma that society has, but i will definately after this experience keep it to myself from now on in as by exposing myself in what I thought was a loving relationship, has in fact just provided a ground for constant critism and defamination of my character

    Anyway, once again i thank you for taking time out to reply to me and your words are a great comfort

    Love L x

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  • Posted

    Well here I am again, off Venlafaxine. I came down very slowly after my last withdrawlal drama, and the affects are still bad. My doctor put me on a small dose, 50mg, of Amisulpried and told me to stop the Venlafaxine a week before I see her again, so she can see how the new drug is working. Im still having brain zaps, nightmares, weepy, sore joints, body pain, anxiety. I am hoping she will increase the Amisulpried (also known as Solian) and with the Vemlafaxine I coped and even though I was reducing my Venlafaxine I had no side effects. So on Monday I see the doctor again, and I will see what she says.

    She also put me onto Epilium, 300mg twice a day, but I really don't want to give up one drug to take another. My aim is to take as little as possible.,

    The Zopiclone that I take at night still does not help me sleep. It is awful to dread going to sleep, I try to stay awake as late as possible so that there is too little time to dream. Uh! Those dreams. I even dream if I have a short nap during the day. Well here goes. I feel awful, and wish it would all just go away.

    Thank you for the support.xx

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  • Posted

    I cannot explain the relief in finding this discussion. My history is similar to those above, 20 years of antidepressant treatment with the last 2 years taking Venlafaxine, now on 300mg daily. They helped initially but after periods of time would become less effective and the dose was increased until reached 300mg. Efficacy has dwindled again but what has frightened me the most is all the other aliments I now seem to have, aching muscles, joints, extreme tiredness, insomnia,forgetfulness, again my list could on and on. I also work shifts and have part-time hours which helps me to continue working. I have tried to reduce Venlafaxine before, first by myself which was horrendous and a second time more slowly with GP support. However, as I say I'm back at 300mg, feeling like I did when I started on 75mg with increasing physical side-effects. I'm really thankful for everybody's contribution to this discussion as its given me the impetus to get off this drug and this may sound really crass, find myself again. I'm going to start a plan and a diary with a first objective of making a GP appointment..not much but its a start and will continue to follow input to this discussion, it helps so much to speak with someone who understands how difficult it is.
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  • Posted

    Hi polly2430

    I'm so glad you've found some help with making your decision.

    I really hope that the GP can provide some useful assistance with you coming off of it. I came off and went onto something different in August and although it was tough at the time, getting venlafaxine out of my system was definitely a good decision. I hope that you get support with going through such a tough time, and I hope we hear from you again soon.

    All the best,

    P

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  • Posted

    So - as I started this thread almost a year ago I thought it may help to let you know how things are going for me.

    Good news is that I did it! I came off the horror drug - no, it wasn't a pleasant experience in any way - but i'm off it for good and i'm back in charge of my own mind. The masking with Prozac was the key for me, I still had the withdrawal symptoms but nothing like as severe as when I tried to do it without. I can't emphasise too much just how important it is to go very very slowly and cut down in tiny amounts, I was chopping the tiniest pills into quarters and mixing the bits with soft cheese - that's how slowly i took it!

    I did have a relapse. About eight weeks after i had my last ever dose of Ven I felt so good that I just stopped taking the prozac (I was only on 20mg, thought that was nothing after the high dose of ven i'd been on for years) and had a massive slump. My poor mind just couldn't cope with another alteration in the chemicals i'd been pumping in and went into melt down. Suffice to say I went back on the Prozac with the help of my excellent GP and back to my wonderful therapist until things were a back under control.

    In August I went with friends to a music festival. Felt bright, engaged and looking forward to it but woke up in the tent in the morning and had my first ever panic attack! Of course my first thoughts were 'I need the Ven back, I can't cope without it' but I luckily had the support of very good friends who reminded me of everything I'd (we'd) been through with the withdrawal, how out of my head i'd been whilst on it, and how much more in control I'd felt since no longer having it in my system. They also reminded me that going through the process of withdrawal and succeeding showed just how much mental strength I had, that this was just a blip and my mantra: 'IT WILL PASS!' was true.

    I can't say i'm carefree, happy go lucky these days - of course not, I suffer from a mental illness that cannot be cured - but I am back in control of my mind and when the bad times come I have the rationality to put coping mechanisms into place. Most importantly I can say to myself 'IT WILL PASS' and believe in it.

    I do actually experience good times and happy times too, rather than just that feeling of watching the world go on without you through a steamed up window - my explanation to others of how venlafaxine affected my consciousness.

    Things that have helped me:

    Talk to people who also suffer - the isolation of believing you are the only one is one of the most damaging weapons this illness has.

    Meditation - I always dismissed as airy-fairy. Not at all, the joy of being able to train yourself to be able to empty your mind of all thoughts, even for a brief period of time is indescribable! Try the myHeadspace app and give it time...

    Write things down - I have a notebook, I write the bad feelings down, but also the good feelings. However small and seemingly insignificant you can remind yourself that you are capable of good times and that they will come again.

    Have a mantra - 'IT WILL PASS' is mine. Life is fluid and constantly changing - ebb and flow. There will be respite. I ought to have this tattoed somewhere!

    Read about mental illness - I've read so many books about people's experiences of mental illness, that realisation again that most people out there however together and chirpy they may appear outside have had some experience of it helps you feel less isolated. The cricketer Marcus Trescothick's autobiography 'coming back to me' is superb and Sally Brampton's 'Shoot the damn Dog' - particularly as she also went through the horror drug withdrawal is hugely comforting and inspiring.

    I've read in a number of these books that depression is far more likely to occur in people who are very strong, have high standards, who care about others more than themselves and don't want to let themselves or others down. We keep on going, making so much effort and exhausting ourselves emotionally just to maintain that aura of 'being normal' coping and not falling to pieces. No wonder when we collapse it's so intense.

    Please respect yourselves as precious and valuable human beings - one of my biggest learnings is that I have to look after myself first!

    It will happen, you CAN get venlafaxine out of your system, you do not need to be imprisoned in your own mind by this drug!!!

    Love to all,

    Anna

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    • Posted

      Anna,  your post has given me hope, I can't thank you enough!  I am on day 5 of being off this horrible drug after  a 2 week taper .   I get both brain zaps and what I think of as brain lags especially when I move my eyes or head.  They are quite strong yesterday and so far today.  weepy, want to be alone,  I am trying to use what I have learned in yoga about using your breath to calm down.  I am determined to get off antidepressants after 30ish years of being on them.     I need to know the real me ....

      Love to you.

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