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AlanC: one year on from stopping citalopram too quickly

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AlanC

One year ago I completed what I now know to have been a too rapid taper off Citalopram, going from 20mg on 2nd Jan 2018 to 0.1mg on 23rd April 2018 by successively halving the doses. A year on and my condition has been steadily deteriorating. I’ve read about the Windows and Waves pattern of stabilization, but over the last year I seem to have been caught in an ever deepening wave with little to no relief.

 

I’d been taking 20mg of Escitalopram for major depression since 2003. In 2014 my doctor changed my prescription to 20mg Citalopram as a result of an NHS cost cutting measure that required patients on Escitalopram (which, at the time, was still under patent) to be swapped to Citalopram.

 

I found the Citalopram caused significantly more side effects than the Escitalopram and then, in November 2017, I went into tachyphylaxis and started suffering discontinuation symptoms. My doctor changed my prescription to 30mg Mirtazapine and a short course of 3.75mg Zopiclone since I was barely sleeping. I was told to go from taking the full dose of Citalopram to nothing for two days and then start the full dose of Mirtazapine.

 

I couldn’t stand the Zopiclone: it heavily sedated me and the effect lasted through most of the next day. Going cold turkey with the Citalopram, even if only for two days, magnified the discontinuation symptoms so I went back to my previous 20mg dose: when I told my doctor about this her response was simply: “How do you expect me to help you if you won’t co-operate with me?”

 

So I did, and the result was terrible. I stopped the Citalopram, waited two days and then, over the next four days, managed to take four doses of Mirtazapine. Each successive dose made the electric shocks / brain zaps I was experiencing as a result of the Citalopram discontinuation worse, and the more active I was the more intense they became. After the fourth dose they were happening multiple times a second and there was no way to get any relief. This was accompanied by what I can only describe as a murderous rage, totally at odds with my normal self: I don’t know how I managed to contain it, but I was able to hold it down long enough to call my brother for help. He told me afterwards that he was deeply shocked by the state I was in when he arrived, and he was on the verge of calling an ambulance to get me into hospital. I eventually managed to calm down enough that he thought it safe to leave me overnight.

 

The following day I saw my doctor again. When I told her what had happened and described the rage I’d been feeling her response, in the most patronising and contemptuous voice imaginable, was “Well, we’ll just have to give you something to calm you down then, won’t we”. I told her that I wasn’t willing to take any more drugs and that I wanted to come off the Citalopram. This wasn’t remotely well received, but I was eventually given a prescription for liquid Citalopram with the comment it would let me take as long as I wanted to come off it. It was also made very clear that this was the limit of the help I was going to get.

 

The liquid Citalopram had a life of four months once opened so I had a limited time to complete the taper. Back in 2001, at the suggestion of a doctor at my local hospital, I’d come off Paroxetine by successively halving the dose over a period of about two months. This had been unpleasant but had worked. I decided to taper off in the same way and get the dose as low as possible before stopping.

 

The actual taper wasn’t too bad: each successive decrease would leave me with the usual electric shock symptoms, digestive problems and headaches, but these generally didn’t last more than a week or so. I was typically reducing the dose every other week as a result, apart from one bad spell at around 0.5mg where the symptoms went on for about a fortnight.

 

After I stopped completely everything initially seemed fine. Then I started to notice I was having strange dizzy spells: no vertigo, I was just oddly off-balance. This got progressively worse. I used to ride a motorbike a lot, but the dizziness compromised my abilities so seriously I had to give it up. It also made driving a car any distance very unpleasant.

 

In early August 2018 I experienced my first wave: all the symptoms I’d associated with the discontinuation returned and I also started to feel permanently cold. August was a very warm month, but I remember one day when the temperature was 86 Fahrenheit and I was so cold I had goosebumps and couldn’t stop shivering. September saw me waking up the moment it started to get light with terrible feelings of panic. By late November I was virtually housebound; the dizziness was so bad that I couldn’t walk without a stick to help me keep my balance.

 

It was around this time that I found this site and started to understand exactly what was happening. I tried the two suggestions of magnesium and fish oil to no discernable effect, but blacking out my bedroom window and taking vitamin C helped reduce the early morning anxiety.

 

In January 2019 there was a brief respite where the dizziness lessened to the point that I could walk without a stick, and that particular aspect seems to have held. But in February everything took a severe downward turn. The headaches reached a level where I couldn’t bear any light or sound and were very migraine-like, often concentrated behind one eye. The morning anxiety became more intense. I couldn’t concentrate on anything and became unable to work - a real problem since I’m a self-employed software developer. Then my emotions went haywire: I’d have bouts of completely irrational grief where I’d cry for hours. I’d become seriously angry for no reason and blindly latch on to something - anything - no matter how minor - as the cause and act in a terrible way towards anyone I associated with the problem. And I started to get very tired very easily: even a short walk would leave me incrediby tired for days afterwards.

 

Two months later and this just hasn’t let up. I have virtually no support and am really not sure what to do. Other than the brief period in January where the dizziness lessened, I seem to be stuck in an ever deepening wave with the symptoms continually getting worse. Is this likely so far out from a too quick taper? I absolutely don’t want to go back to my wretched doctor - or any other doctor - because I’m now deeply afraid of any form of psychiatric medication, but I’m starting to feel like I can’t cope any more and have no other option.

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Songbird

Hi Alan, welcome to SA.  I'm sorry your doctor was such a jerk - we hear lots of doctor horror stories here.

 

It definitely sounds like you are in a wave, and no, it is not unusual in cases like yours.  It might feel now like it will never end, but eventually waves do pass.  You can think of a wave as a period of the body doing a lot of adjustment - it's actually an important part of the recovery process.  It feels horrible because to rebalance itself, the body has to adjust many parts of many systems and so a lot of things are put out of balance for a while. It's kind of like when you reorganise your cupboards or clean out the garage - everything is in a worse mess for a while as you pull stuff out and sort it.

 

Here's our topic about waves and windows you might find worth reading: The windows and waves pattern of stabilization

 

I understand you not wanting to go back to doctors and ending up on more medication.   Instead of turning to meds, you could look into non-drug coping techniques - we have a lot of suggestions in this topic: Non-drug techniques to cope with emotional symptoms

 

For anxiety, many people have found the books and recordings by Dr. Claire Weekes very helpful: The Dr. Claire Weekes method of recovering from a sensitized nervous system.

 

Please post all your updates and questions about your situation here in your introduction topic, and we will try to help you as best we can.  Have a look around the site, and you may find other members in a similar situation to you - you'll find a lot of support here.

 

 

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AlanC

Hello Songbird, and thank you for your kind response.

 

I’m sorry I didn’t reply sooner. The last week has been horrible: I don’t find it easy to talk about this subject and, following my first post, I became quite upset about the fact I’d let the whole thing out. Plus I’m having to deal with a difficult complaint against an energy company; my out-of-control emotions aren’t doing me any favours and the whole thing has become a serious source of stress.

 

It’s a relief to hear that this most probably is a wave and that it’s not uncommon this far out from a too rapid discontinuation. My progress to date has followed the Windows and Waves pattern, it’s just that the overall trend has been downwards rather than upwards with the exception of the dizziness, which is definitely not as bad as it was during December. I really need to remember that there is, at least, that one positive.

 

The biggest problem right at the moment are the headaches. Or maybe I should say headache since it’s been with me to a greater or lesser degree for a month or more now. It’s there permanently from the moment I wake up until the moment I go to sleep. It varies from a sinusitis like feeling to a terrible pain behind one or both of my eyes, and nothing seems to touch it. Unfortunately using the computer is a certain trigger, so it may take me a while to read the various topics you’ve suggested. But I most definitely will, because it really helps to know I’m not alone in this.

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brassmonkey

I use to get headaches like that.  I found a cool dark room with a towel over my face did some good.  Also making sure I ate something every few hours, there seemed to be a hypoglycemia connection in my case.  Also try to micromanage your emotional triggers with the energy company, get through each stressful step and then drop as much as you can knowing that you did the best as you could in that situation.

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JB1234

Hi @AlanC I read your post and while my symptoms are not as strong I feel for you and am reminded how dangerous getting off these drugs are. Your psychiatrist sounds utterly incompetent and uneducated about making decisions for helping you. Glad you are here Best wishes from @JB1234 

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Daisygirlsk
22 hours ago, AlanC said:

Hello Songbird, and thank you for your kind response.

 

I’m sorry I didn’t reply sooner. The last week has been horrible: I don’t find it easy to talk about this subject and, following my first post, I became quite upset about the fact I’d let the whole thing out. Plus I’m having to deal with a difficult complaint against an energy company; my out-of-control emotions aren’t doing me any favours and the whole thing has become a serious source of stress.

 

It’s a relief to hear that this most probably is a wave and that it’s not uncommon this far out from a too rapid discontinuation. My progress to date has followed the Windows and Waves pattern, it’s just that the overall trend has been downwards rather than upwards with the exception of the dizziness, which is definitely not as bad as it was during December. I really need to remember that there is, at least, that one positive.

 

The biggest problem right at the moment are the headaches. Or maybe I should say headache since it’s been with me to a greater or lesser degree for a month or more now. It’s there permanently from the moment I wake up until the moment I go to sleep. It varies from a sinusitis like feeling to a terrible pain behind one or both of my eyes, and nothing seems to touch it. Unfortunately using the computer is a certain trigger, so it may take me a while to read the various topics you’ve suggested. But I most definitely will, because it really helps to know I’m not alone in this.

Hey

I am also a year off citalopram minus a disastrous week long reinstatement in November. Your symptoms are very similar to mine. I currently am wearing sunglasses indoors because I have very bad eye pain and headaches. I also am very dizzy today from overdoing things yesterday since I have to move. I am extremely fatigued even after 10 hours of sleep. A lot of intrusive thoughts. When I watch old videos of myself from a year ago I can see that I was much worse than now even though now I feel like I'm as bad as then. It's hard to keep perspective so I encourage you to journal or video journal if you dont already. I also rapid tapered over 4 weeks after 7 years use following doctor recommendations. Took me 8 months to figure out I was in withdrawal as no medical.professional could explain any of my many symptoms. Thank God for this site. We will get through this message me anytime.

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AlanC
On 5/4/2019 at 11:53 PM, brassmonkey said:

I use to get headaches like that.  I found a cool dark room with a towel over my face did some good.  Also making sure I ate something every few hours, there seemed to be a hypoglycemia connection in my case.  Also try to micromanage your emotional triggers with the energy company, get through each stressful step and then drop as much as you can knowing that you did the best as you could in that situation.

 

The dark room definitely helps.

 

During my first bout of depression I went through various forms of non-drug therapy as well as being put on Paroxetine. The doctors had a hard time with me because I just didn't respond to a lot of what they tried. The doctor who eventually succeeded was using mindfulness techniques: getting me to pay attention to what I was thinking, dividing the thoughts up into things I could do something about (and deciding what), things I'd already done something about (so I could let go) and things I just had to accept (so there was no point in endlessly going over them). I'm slowly getting myself back into the habit of doing this; hopefully it'll stop me reacting so badly to the stressful situation, but the fact that I'm currently having to deal with it on a daily basis really isn't helping.

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AlanC
On 5/5/2019 at 12:00 AM, JB1234 said:

Hi @AlanC I read your post and while my symptoms are not as strong I feel for you and am reminded how dangerous getting off these drugs are. Your psychiatrist sounds utterly incompetent and uneducated about making decisions for helping you. Glad you are here Best wishes from @JB1234 

 

Thanks JB. The doctor in question is a General Practitioner, so hardly an expert. Unfortunately she has taken the place of the previous practice principal who retired recently. This may mean having to switch to a different practice, but I'll cross that bridge when I come to it.

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AlanC
On 5/5/2019 at 6:01 PM, Daisygirlsk said:

Hey

I am also a year off citalopram minus a disastrous week long reinstatement in November. Your symptoms are very similar to mine. I currently am wearing sunglasses indoors because I have very bad eye pain and headaches. I also am very dizzy today from overdoing things yesterday since I have to move. I am extremely fatigued even after 10 hours of sleep. A lot of intrusive thoughts. When I watch old videos of myself from a year ago I can see that I was much worse than now even though now I feel like I'm as bad as then. It's hard to keep perspective so I encourage you to journal or video journal if you dont already. I also rapid tapered over 4 weeks after 7 years use following doctor recommendations. Took me 8 months to figure out I was in withdrawal as no medical.professional could explain any of my many symptoms. Thank God for this site. We will get through this message me anytime.

 

Hello Daisygirlsk, so sorry to hear you're also going through this. It's interesting that you're getting the eye pain and headaches, and that BrassMonkey said much the same: I'd spent most of today wondering if I had some form of sinusitis despite the fact there are no obvious symptoms of it - apart from the pain - but I now guess it's "just" the discontinuation.

 

This time last year I was actually feeling better than I had in a long time: I was off the Citalopram, the dizziness hadn't really set in, and I was still three months away from the first wave. I guess from what you said that you must have gone straight into the worst of it after finishing the taper... ouch! But the fact that you can see some improvement over a year ago is very encouraging.

 

While I'd never thought of keeping a video diary I do keep a written one, with entries whenever something significant happens. Looking back at the time I briefly took the Mirtazapine is frightening. So at least, even at my current worst, I've never come anywhere remotely close to that again.

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laydefish

Hi AlanC & Welcome!  Sorry to hear your struggling. but glad you found this Forum for support, Stay strong, it gets better everyday!

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Maca44

Yes keeping a journal has helped me when I get that , its never been this bad before, inner dialogue. I can clearly see that progress is being made however small. I guess the only negative looking back at bad times is that I worry that it will return so often it helps looking back but can make me more anxious.  

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AlanC

One week on and the dizziness is increasing: it’s not quite achieved the levels it did back in December, but it’s close. I can’t turn my head while walking to look before crossing a road without starting to stagger. If I close my eyes while standing then I immediately lose my balance. Driving is extremely unpleasant: the motion in my peripheral vision is almost unbearable. And I can’t sleep properly: I reckon I’m getting 2 or 3 hours at most per night. This isn’t being helped by the sparrows that have found a gap in the roof somewhere and built a nest under the tiles above my bedroom window: cheep, cheep, cheep all night long. Aaaugh!

 

On the plus side the month plus long headache is, perhaps, decreasing a bit.

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JB1234

Hi it’s JB, 

 

The dizziness is common. I had it and still have it at times.  I read somewhere that there are many serotonin receptors in the inner ear. So when you take an SSRI they become down regulated. Tapering off the SSRI you’re nervous system has to adjust and it takes time. Maybe It’s just a theory. I used to take ginger capsules for seasickness from being out in the ocean on my Dads boat. I take Ginger capsules for this symptom and think it might be helpful. 

I mainly wanted to comment to see how you are doing and wish you well.

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AlanC

Hello JB,

 

Thanks for the kind words. I've been reading your intro topic, and that's quite a combination of assorted medication the doctors have got you on. The way doctors will add yet another drug to try and counteract the effects of an existing prescription and then just leave you on it without reviewing whether it's still necessary is more than a bit frightening, especially when it can be so hard to stop some of them.

 

This last week brought a little temporary relief: I had a four day window, the first since February. The headache decreased dramatically and lost its sinusitis like feeling. My emotions stopped going out of control. The dizziness remained, but at least it wasn’t increasing. But going out for a walk proved somewhat disturbing: I’ve become very slow and feel quite unsteady. Even so, it was really nice to get some sunshine and fresh air.

 

The window has passed now and the unrelenting headache and tiredness are back, plus I’m feeling permanently cold again. Given the progress to date, where each wave has brought a set of symptoms subjectively worse than the one that preceded it, I’m wondering what this new wave will bring: will it finally mark the turning point where I don’t feel like I’m continuing to sink? I hope so...

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VincentV

I'm in a similar position to you, in that I'm approaching a year out after a fast taper and its still not that apparent (barring a big reduction in a couple of symptoms) that I'm making much progress. Sometimes I even fear that I'm getting worse. Do you keep a mood diary? I've found it good for helping me form a picture and at least track some of the symptoms (rating specific things like leg tension or hyperaccusis are much more effective /easier than general ones like 'depression' or even 'anhedonia' I find). It has helped me a little and the act of doing it also helps me feel like i have a tiny bit more agency in all this. 

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AlanC

Hello Vincent, sorry to hear you're in the same sort of state so far on from tapering too fast.

 

I have to admit that I'm hopeless at diaries. I try to keep one for exactly the reasons you suggest, and if something significant happens then I usually manage to make a note, but the normal day to day just blurs together and I forget. 

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AlanC

So the current wave is proving to be pretty much the same as the previous one. On the plus side my emotions are, perhaps, a bit more in control: I’m not getting as pointlessly angry as I did last time, although the periods of grief are still very bad. On the minus side the dizziness is definitely on the increase again. Everything else is pretty much consistent: brain zaps, horrible headaches, feeling permanently cold, can’t concentrate at all, not sleeping properly, getting very tired very easily.

 

There is one new symptom that’s developed in the last couple of hours: it’s an intense desire to go rub my doctor’s nose in the fact that the Royal College of Psychiatrists have recommended changes to the guidelines on how you should taper off antidepressants.

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withhopeinmyheart

Hi Alan, 

 

thank you for your continuous encouraging words! 

 

Well, about the Royal College... I sadly think they only buckled under the pressure of those harmed. We'll see if change will really come. 

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AlanC

Withhope, I don't think it was even that. I think it's exactly and precisely down to the fact that Professor David Taylor of Maudsley Hospital in London went through withdrawal and decided to do some research into the causes. If that hadn't happened the Royal College would doubtless still be refusing to recognise the problem.

 

But in the end the recognition is there, which is a good thing. And, hopefully, more research will be done as a result.

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Onmyway

Dear Alan, I am so sorry you are going through such a difficult withdrawal. The dizziness and the relentless headache must be excrutiating. I hope that it does let up soon. 

I am also struggling with disputes with a former landlord, an insurance company from when I lived in the US and a doctor's office who keep messing the billing for visits from 2 years ago and which I had delayed dealing with because of traumatic experiences. I should really have delayed longer and not taken it up in the midst of all this. Hope things go well for you and you get some windows. 

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AlanC

Thank you, Onmyway. It's not fun trying to deal with a dispute when you're suffering withdrawal symptoms, so you really have my sympathy.

 

The last four days have been horrible: I've had a continuous, intensely painful headache that seemed to be right between my eyes combined with bouts of intense dizziness that had me holding on to the walls and furniture while I walked. No way could I go outside. Fortunately it seems to be getting less today.

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Onmyway

Oh, that sounds horrendous. My dizziness has been quite mild so far so I can't imagine how disturbing it must be to lose the ability to walk and go outside.

 

Regarding the headache, I hesitate to suggest it but the last couple of times when I had a headache I took some ibuprofen and it seemed to actually ease some other wd symptoms as well. There was a couple of years back a study that showed that Tylenol eases emotional pain as well. Now, in wd nothing seems to be working normally so who knows what other nightmares the ibuprofen or Tylenol may bring ... For me benzos have turned bad in wd and cause intense nausea (but then again everything caused nausea these days...) Before I could use Xanax occasionally for instant relief but even that is no more.

 

Today London is gloomy, I hope there is some sunshine your way at least? One hour at a time...

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AlanC

Ordinarily I try to avoid taking anything, but the headache got too much for me. I'd been taking Paracetamol for two days before waking up this morning feeling somewhat better. The headache has been coming back through today, so I'm trying Ibuprofen to compare. There's not been any benefit so far but I'll give it another day to see if it works.

 

On the plus side the dizziness has lessened considerably: I managed to have half an hour's walk this morning while there was a bit of sunshine. It's back to non-stop rain now, which is apparently set to continue for the next three days.

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Onmyway

Hi Alan, just checking in. Has the headache let up? What about the dizziness? Hope things are looking up a bit. 

 

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AlanC

Hello Onmyway, the headache drags on and on... ibuprofen doesn't seem to help, but paracetamol eases it slightly. The dizziness is mercifully getting less; of all the symptoms it's the most unpredictable. Hoping things are improving for you.

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Onmyway

Hi Alan, had a good couple of days. Relatively speaking. Maybe at 60% or so. But the paresthesia in the feet is starting to bother me. So glad the dizziness is getting better. I hope the headache will get better too. Have you tried accupuncture/massage for it? I had a headache on Saturday that was pretty bad as well but luckily ibuprofen helped. 


Wishing you steady recovery. 

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