Greenleaf: Can a long-term user hope for complete withdrawal?

[Greenleaf]

Hello. I’m Greenleaf. This is my first forum and first post so will try and ensure I post appropriately and in the right places! This introductory post may be a little on the long side to explain my history so please bear with me.

 

 My history on AD’s goes back over 20 years.  ( I am now 68.)

 

I went through a long-drawn out divorce between the late  1980’s and early 1990’s and at some point around that date remember being prescribed Prozac. I recall that there were side-effects very early on  and I was changed to  Seroxat (Paxil ).  Later again (2003)  I was changed to Citalopram (Celexa) which I have been on ever since. Initially I was on the tablet formula but subsequently asked for the liquid (Citalopram drops which, here in the UK comes as 40 mg/ml).

 

Since 2007 approx, I’ve been on 15-20 mg. On this dose I  was relatively stable. By this I mean ‘functioning’ though invariably tired, suffering profound sleep problems , often experiencing dizziness and generally pretty emotionally blunted. Otherwise OK!  However, I had to change surgeries at the end of last year. The new  GP  I saw was a bit confused about prescribing the drops in spite of my attempt to explain that it was straightforward ( 1 drop = 2 mgs Citalopram) and she prescribed the tablet rather than risk get it wrong . At the start of this year I saw a second doctor at the surgery who encouraged me to think of withdrawing which I really wanted to do and had tried to do previously. She prescribed 10 mg and 20 mg tablets for alternate days (which I now know can trigger sensitivity).

 

I was not especially well  on this but I attributed it to my chronic fatigue syndrome which had been diagnosed in 2001 along with fibromyalgia. By this time I had been on SSRI’s ( mainly Seroxat/Paxil) for many years.     I had struggled through my divorce, custody battles and ex-husband’s attempted suicide and various other problems.  I had also re-trained and gone back to work and wound up in quite a high-powered job which was great. My  health however was going rapidly  downhill with constant exhaustion. One night (1999) working late in the office,  I felt extremely dizzy on the way to the printer to collect an urgent report I had just prepared. I put it down to stress but the dizziness and exhaustion continued. I  had a variety of tests, including hearing and balance to no avail.  Nearly 2 years later after endess tests and mini-collapses which would result in several weeks off work at a time, I was diagnosed with CFS and fibroymyalgia. Because it was the first symptom , supposedly, of the CFS, I have always attributed the dizziness,  which has never really gone away for long periods, to that. (CFS of course is still not understood as a general syndrome though it is accepted as being of neurological origin  by the WHO and others.  In the UK there is still a definite feel that it can be ‘treated’ with CBT etc.  There is certainly no helpful treatment offered and no clear answers have emerged. I have been through my fair share of attempts to address the CFS with various and expensive  approaches. I won’t confuse this post by mentioning them. I am a lot poorer in one way or another as a result of the CFS  (if that is what it is) and my attempts to get well). 

 

I gave up my  demanding work in 2002 and worked part-time in a very reduced capacity till I retired in 2012. I can’t remember when I last felt well in the normal sense.

 

With regard to the Citalopram, I have a clear memory of being away on a creative writing course (2009) and stopping the Citalopram and exchanging it for Amitryptaline for part of the  course.  ( Yes, I know!)  I have major sleep problems and I desperately needed to sleep to get the benefit of the course.  I was completely unprepared for the effect it would have. I was ill for weeks after with symptoms of intense unreality and dizziness.  I did recover though, eventually and went back on the Citalopram.  I can’t imagine how I have been unaware enough to ‘forget’ how potent these drugs are and to effectively put myself through the same suffering again recently. As  I said above, this year I was prescribed  (rightly or  wrongly and it does appear to be wrongly) the 10mg and 20 mg tablet to take on alternate days as a way of beginning to taper.  In early May, on a whim to ‘get on with things’, I reduced to the 10mg tablet. I was becoming much more emotional and angry at this time. Again though, I thought the reason for the problem was something other than the SSRI. I had been in therapy for many months with a psychotherapist and SE practitioner to address the long-standing problems I knew needed to be addressed. (Problems relating to trauma in my adolescence and which ultimately led to my marrying the person I did.) The therapist believed, as did I, that I was improving, in that I was becoming a lot more emotionally available, although of course it was hugely uncomfortable. I am now questioning how much of this was my SSRI reduction, which was of course too much, too soon. The therapist believed, incidentally that the CFS was my body’s reaction to trauma. (see Peter Levine’s book, Waking the Tiger, on how the body reacts to trauma.)

 

Although I felt really emotionally unstable and unwell, at this point, a few weeks ago, I  felt things were coming to a head. After years of struggling to make sense of my life, it seemed things were happening, finally, that needed to happen. This may be why, I decided, disastrously, after being on 10 mg for a few weeks, that I would come off altogether. It was just before visiting family a couple of hundred miles away, for the weekend. After four days I was on the point of collapse with all the previous symptoms hugely intensified. I include in this the ear-ringing and inability to move my head more than a millimetre to either side without appalling dizziness. I did eventually manage to get home and took a 10 mg tablet because I just didn’t know what to do with myself. I went to bed two hours later feeling a very slight improvement. In the morning, I woke to feel, astonishingly, normal. It convinced me, once and for all that a lot of my symptoms were due to the SSRI. That very specific dizziness was clearly the Citalopram withdrawal. I have now managed to get a prescription for the drops and am beginning a tapered withdrawal  (Currently on 6 drops = 12 mg. Because there is more bioavailability in the liquid , it seems this is the equivalent to a 15 mg tablet).

 

One final thing on the dizziness. This, together with the profound sleep difficulties, exhaustion,  foggy thinking, muscular aches and pains and ear-ringing,  seems to sum up how I experience my illness. I saw a neurologist privately back in 2002 because I was so concerned about the dizziness and in relation to that he talked a lot about MDDS (Mal de Debarquement Syndrome) or disembarkation syndrome.Though it was poorly understood, he said, it  can occur after  a long sea voyage or even a long-haul flight. It describes the kind of dizziness I get, which is not vertigo but more a sense of  internal swaying.  The brain fails to re-set itself after initially  adjusting to  different conditions. He also mentioned that it was often co-comitant with depersonalisation syndrome and CFS.  Things do not appear to have changed much in 15 years for just before my trip to the family, I had a long-awaited appointment with a NHS neurologist to discuss the dizziness. He also talked about MDDS and possible effects of medication fluctuation  (!), but  effectively said I could not expect to understand what was causing my dizziness as it  was one aspect of a very complex condition and  just one aspect of how the brain copes. (I was very angry. I totally agree with his point re the complexity of the way in which  the brain adjusts to stress – the principle of  homeostasis etc - , but I disagree that we do not need to try to understand for ourselves the things that make us ill and can affect the outcome of whole lives.)

 

So, that’s where I’m up to. I’m exhausted now. Thanks for reading. I realise that there are several intertwined themes in this post , but just needed to try and present an overall picture for this first post.

 

The  existing  ‘SSRI -CFS ‘posts on the forum are something  I am currently working my way through. But I’m also particularly interested in the stories of long-term users.  Is total withdrawal possible after over 20 years ? There don’t seem to be many UK people on the forum but if anyone is a long-term user of Citalopram and withdrawing on the drops, it would be particularly good to hear from you. Because it’s so concentrated (40mg/ml) I’m going to have to be very clear-thinking about how I do the dilution but have equipped myself with a few syringes in preparation althoughI don’t need them yet.

 

Look forward to hearing from you all!

 

Edited March 15, 2018 by ChessieCat
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[Altostrata]

Welcome, Greenleaf.

 

Thank you for such a well-written introduction. It gives a very clear picture of your experience with antidepressants.

 

It sounds like you had side effects from these drugs from the very beginning. It could very well be that the tiredness, a well-known side effect of citalopram, could be due to the drug, as could the dizziness.

 

I understand you are now taking 12mg citalopram, in drop form? And you've been taking 12mg for about 3 weeks?

[JanCarol]

Hey Greenleaf - I just wanted to welcome you!

 

There are a lot of psych drug survivors whose symptoms look a lot like ME / CFS.  I'm one of them (though I have surgical complications, too).  When people ask me what's up with me, it is easiest just to say CFS.  My GP has me down as "fibromyalgia" even though that's not technically correct, either.

 

If I look at the spiritual side of it - it is as if I am from a simpler time, when all our labours were for hunting, gathering, agriculture, children, and resting.  This complex society seems to overload my nervous system on a regular basis.

 

So - do you know about Spoon Theory?   The Spoon Theory by Christine

 

You've come to the right place.  There is a good chance you can get some of your functionality back when the drugs are no longer messing with your endocrine system.  A nice, slow, gentle taper, and you might not even notice symptoms.

 

There are UK people here, scores of them.  I was drugged on and off for 25 years (each time I stopped a drug, I relapsed and went on another drug).  I am drug free, and now dealing with the native condition of "what's left."

 

So - you might want to check on the finer points of your taper here:

 

Tips for Tapering off Celexa (citalopram)

 

And you might avail yourself of our Symptoms and Self Care forum, where you will find plenty of Non Drug Techniques for Coping with Emotional Symptoms as well as recommendations for supplements (most of them are not a good idea, though we do recommend Magnesium and Omega-3 fish oil ) and other therapies and techniques and what members have found useful.

 

You also might enjoy these threads:

and 

(interesting, the first poster was also on the drug you are on!)

 

This thread is a great place to ask your questions, and you can use it as a journal to track your progress.  Bookmark it, and you can train the site to email you when you get a new post here.

 

Welcome to SA!

 

[Flowers]

Hello Greenleaf

 

I have read your post with great interest. I am taking Cit to for 15 years. I felt that Cit did help me over the years until I felt it wasn't working so well so my Dr took me off them too quickly and I went into WD and found this site.

 

I started to taper off over a year quite successfully  but due to problems this year

my taper is now on hold! 

 

I am originally from UK where I was initially prescribed Cit but now live in Spain. There is another member Joy who is taking Cit and from UK and tapering.

 

The dizziness has always been a problem for me when withdrawing from Cit so much so that end of last year I was housebound as couldn't walk due to what I felt were balance issues. So many things you say I have noticed too like the exhaustion and muscle weakness aches and pains.

 

I wish you well and it is nice to have you onboard.

 

Flowers xxx

 

 

[Greenleaf]

Thank you very much Altostrata for your welcome. It's lovely to have this site available for its support after being out in the wilderness on my own for so long. 

Yes, in answer to your query, I'm now on 12 mg Citalopram ( 6 drops) and have been for the last 2-3 weeks  since I succeeded in getting the drops prescribed. So I seem to be re-stabilising and will stay on this dose till it feels OK to reduce by 10%. Still very tired but dizziness much better though not completely gone. 

(I did have a more comprehensive signature but it got lost somewhere along the way during my teething problems with the introductory post. Never mind, all's well now  and I feel I'm in the system. ?)

Just going to reply to JanCarol and Flowers too.

[Greenleaf]

JanCarol thank you so much for your welcome. Lovely to have friendly voices who understand! 

No, I hadn't heard of Spoon Theory but have just read it and appreciate it. Very hard to explain energy levels to someone else who is 'normal'!  On the mental energy side, I've always felt I needed more time than other people to process things and consequently had to shut myself away and 'catch up'. This was long before Ad's or CFS so must be at least partly, the way I'm wired. ( Bit like the hard drive blue light on the laptop, buzzing away even when you're not inputting anything - mysterious activity that just needs to happen while the brain regulates.)

I will follow the links you kindly suggested  - I had already printed out a lot of the Tapering Tips and I will go back to the Symptoms and Self-care topic. Haven't gone through much of that yet. I do take a multi vit and mineral with good levels of vit B and Mag in it, plus fish oil.  Other supps  from time to time but those are the staples.

I'll catch up with the Severe Fatigue and Chronic Fatigue topics too. Lots of interesting things to read! Thank you.

(.By the way, I take it that when you say bookmark the site that you meant the introductory topic site and not the CFS topic? Newbie question!)

 

So, for me right now, back again to learning patience and being right where I am. Bye for now.

[Greenleaf]

Flowers, thank you for replying so speedily to my first post. Really comforting to get responses like yours. 

Glad to hear there are UK people out there in the same situation. I have a lot of reading to catch up on now on this site but I will catch up on your posts and on Joy who you also mentioned. I do look forward to keeping in touch with you and comparing notes!

Greenleaf xxx

[JanCarol]

Hey Greenleaf - you can bookmark whatever topics you want!  But this one, your introduction topic, is the most important place for asking questions, logging your progress, and getting answers.

 

As you "hang out" here, you might visit other folks threads, and you will find that your story is not so uncommon after all!  There are a lot of us here, with varying struggles, working together to help each other.  As you "visit" other folks intro threads, you will get more visitors here, too, and start building a community of support.  

 

I hope you see the sun today!

[Greenleaf]

First update since joining and describing my recent 'crash'. 

Got my liquid version of Citalopram and began using on 20/6/2017 at 12 mg (6 drops). Dizziness began to improve and felt well enough to do first taper on 21/7 to 10.8 mg. Feeling a bit less well generally  (though not dizzy)  and today feeling emotionally pretty low. Not sure if this is just a blip ( there are reasons for feeling low) or just life's ups and downs. So, watching to see how it goes and trying to be patient.

[scallywag]

Glad you got the liquid citalopram.  Give yourself time to stabilize on the new formulation; even though the dose is the same, a change in formulation can affect the CNS (central nervous system). 

 

When you're feeling a bit better, you may want to consider how you're going to taper a liquid in which 1 drop = 2 mg  because 1 drop out of 6 drops is a 16.7% decrease. It's COMPLETELY doable, just something to think about when you're ready to deal with that

[Greenleaf]

Thanks Scallywag. This is how I'm doing the taper and I've checked it several times. I think it's right (!)

 

Citalopram liquid comes in 40mg/ ml where 1 drop = 2mg Citalopram.

1 ml = 20 drops = 40 mg citalopram.

 

So I put 20 drops into a small empty bottle and add 39 ml water. This gives me   40 ml of solution containing 40 mg Citalopram, i.e. a 1-1 solution. So I can then measure (currently) a  10.8mg daily dose using syringes. It gives me 3 doses and I then discard the remainder and start afresh. 

 

So I think this is correct, which means that any symptoms are to do with me rather than an inaccurate dose. I have tried previously to reduce by single drop and found I gradually got worse. As you say, this method  is of course greater than a 10 % reduction.

 

So, feeling low at the moment and not sure what's happening. Just trying to get through each day. Thanks for your response.

 

I 

 

 

[scallywag]

Sounds like you've got it worked out -- beautifully!

[Greenleaf]

Hello there. Just updating my status today. Reduced to 9.8 mg Citalopram on 18th August and feeling pretty OK really. Worst problem at the moment is fatigue (my old friend!). The dizziness has definitely lessened to very slight. Mood pretty stable too but am staying on the look-out for a gradual descent because that had happened so often before.

 

On the practical level, though, will have to go out and source a new small syringe,  as the one I have is already losing its markings with washing. Have resorted to making fine scratch marks on the side but I'd prefer to see the numbers, especially when I'm tired!

 

Did the research survey this afternoon after getting Altostrata's  email. Let's hope it helps to encourage a major re-think in the whole system. But new  websites/ helplines etc are of no use unless the whole  industry really takes on board the side-effects of these drugs. Hope others agree.

 

 

I 

 

 

[Greenleaf]

Updating, folks,  after months off the site. (Have had some surgery on my right hand which hasn’t gone as it should and have been preoccupied with trying to get over that. )

 

I’ve continued a very slow withdrawal from Citalopram using the liquid and syringes to get the dose right. It’s been hard, particularly since I was feeling very unwell after the trapeziectomy and not being able to find pain medication that I could tolerate. I’m more or less reduced to paracetamol but that’s better than Gabapentin etc. 

 

I am now on 7mg of  Citalopram. I had been thinking of increasing because I felt very unwell all told, after the op, but am feeling finally a little better this week. So I think I will stay on 7 mg for a month or two and watch!

 

Edited March 15, 2018 by ChessieCat
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[ChessieCat]

Hi Greenleaf.

 

Thank you for returning to let us know how you are.

 

Please update your signature.  This is the preferred format.  Nice and simple, date drug dose.  Thank you.

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

• Please leave out symptoms and diagnoses.
• A list is easier to understand than one or multiple paragraphs. 

• Any drugs prior to 24 months ago can just be listed with start and stop years.
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
• Link to Account Settings – Create or Edit a signature.