sleepylex: Changes to tiredness after stopping antidepressant

[sleepylex]

Hello, I was wondering whether anyone had experienced a significant change in their levels of tiredness/sleepiness after tapering off their SSRI/SNRI?

 

I cannot remember the exact sequence of events but I was started on an SSRI (escitalopram) in 2003 and in the same year diagnosed with narcolepsy (type 2). Narcolepsy type 2 lacks some of the neurological symptoms (falling attacks (cataplexy), hallucinations on waking/falling alseep) of type 1 narcolepsy and therefore is considered by some a less clear diagnosis. 

 

I have been tapering off escitalopram from the last few months, and have gone from 20mg to 0.5mg. I had the sense that my tiredness was resolving as I got down lower in dose and had the idea that perhaps my 'narcolepsy' might have been an SSRI side effect rather than true narcoelpsy. However, I am now mired in rather unpleasant withdrawal symptoms, which for me include tiredness and fatigue. I am therefore increasingly uncertain whether my hypothesis that my long-standing tiredness might be due to antidepressants

 

I wondered whether others had experienced a significant change to their levels of tiredness after stopping antidepressants? Whether anyone had received a diagnosis of narcolepsy or perhaps chronic fatigue syndrome that resolved after stopping antidepressants? 

 

It may be that I am simply wishing upon a star for a change to come but wondered what others experience had been?

[Gridley]

Welcome to SA, sleepylex.

 

There's considerable discussion on SA on the possible links between CFS and antidepressants.  Here are two links.  You can also Google "SurvivingAntidepressants.org CFS" for more information.  See also the initial post of new member starryskies    

 

http://mentalhealthdaily.com/2015/02/13/can-antidepressants-cause-chronic-fatigue-syndrome/

 

Chronic Fatigue Syndrome, ME, CFS - Surviving Antidepressants

 

As you noted, the situation is muddied now by your withdrawal symptoms of fatigue.  Your taper of escitalopram over the last few months was very fast.  We recommend tapering no faster than 10% of current dose every four weeks.

Why taper by 10% of my dosage?

 

Here is some information on the withdrawal symptoms you're experiencing.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

I would suggest you stop tapering at this point and let your system stabilize, which can take several months.  Depending on the severity of your symptoms, you might consider an updose of an additional 1mg Escitalopram.  Though updosing/reinstatement doesn't always work, it's the only known way to reduce withdrawal symptoms.  

Please read:

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can post updates, ask questions and connect with other members.  

 

 

 

 

Edited May 30, 2019 by Gridley

[puthappinessfirst]

SSRIs can 10000% make you ridiculously tired. While stable on mine, I could sleep at LEAST 8 hrs a night. And if I had nothing to do midday, could take a 2 hour nap. I would nod off at my desk at work as well.  Ridiculous!

[Eastcoastgirl]

I've developed chronic fatigue in withdrawal. There have been many days where I could barely move from my bed. Not sure what causes it. 

[sleepylex]

Thanks to all for replying and for the links, Gridley.

 

Quick questions first:

 

puthappinessfirst - did your tiredness resolve as you have come down your dose??

 

Eastcoastgirl - has your fatigue resolved when you have taken breaks to stabilise?

 

I actually went down to 0mg on escitalopram about 6 weeks ago, meaning I had tapered off over about 8-9 months which may seem very fast but it was made a lot easier I think by being on 7.5mg of mirtazapine at the same time. I know in the past when I was just on escitalopram I could not tolerate anything like that rate of taper - and was quite beside myself with anxiety, insomnia and agitation when I tapered at even slower rate.

 

As a result I am determined to stay on 0.5mg of escitalopram for now because I was OK at this level (along with the mirt)from what I can recall from my (not as complete as it should be) spreadsheet. 

 

Having said that I feel so depressed and depersonalised and derealised and fatigued at times that I am not sure what to do with myself. One of my worst fears (and this may be reality and need to be faced) is that this is not withdrawal but just me, perhaps the narcolepsy that I was diagnosed with. This makes me feel quite hopeless about the future because being tired in the past has made life such a torturous challenge for me.

 

I have people who are telling me I am mistaking the fatigue of withdrawal for the fatigue of narcolepsy, and I really want to believe them but am not sure. The strongest evidence I have for my current experiences being withdrawal-related is the strong depresonalisation/derealisation that I have only experienced in withdrawal before. If it is withdrawal then I really hope that it can't last too much longer because it is sapping my will to keep going. It has been about 3-4 weeks since I re-instated (in fact, I had done a very  unwise thing and not only had I gone down from 0.5mg of escitalopram, I had also halved by mirtazpine to 3.75mg - I think this overzealousness has cost me greatly), although I increased doses over about a week. So I am trying to not catastrophise - but failing badly - and hope that things improve in the next few days or weeks. 

 

I have also been trying to continue as normally and see friends and attend social events, but when people ask me how I am going I often blurt out what is happening, including all sorts of catastrophic predictions and worries. I think my friends are used to me being a neurotic mess of a human but this I think has gone too far and is alienating. I think I will choose to see people less while I am feeling this bad - because it is probably damaging to relationships. It is a bad time for it because I have been seeing a nice girl, but my poor mood and blankness makes me very self-conscious and don't know if I can maintain the upbeat energy required for flirting/courting. Oh brother.

 

Apologies for the rambling. Altogether, it is reassuring to hear both that antidepressants can cause extreme fatigue (puthappinessfirst) and other posters, and that withdrawal can also cause fatigue (Eastcoastgirl). If the fatigue from withdrawal wears off I will be a very happy fellow (I could tolerate the poor mood, DP/DR but the fatigue - probably because of its profound role in my life, I just cannot handle and makes me totally hopeless and despairing). If getting off the drugs means that I am even a but less tired than I have been the last few years that would also be wonderful. However, given that I have to get off two drugs, (not to mention a small dose of z-drug and xyrem) I will not be through this for a long while. I have never been accused of optimism in my life, and this all makes me even more pessimistic. Insert large doses of why me? this isn't fair, the usual...

 

Anyway, would be interesting (and potentially reassuring) to hear of anyone else who had tiredness/fatigue/sleepiness while on SSRIs improve when they came off them (potentially after the withdrawal resolved)...

 

 

Edited November 13, 2021 by Karma
Name update

[Songbird]

Hi Sleepylex,  it would be helpful if you could please create a signature containing a summary of your med history, including all drugs, doses and dates (starting and stopping).  Your signature appears below every post you make, and allows us see your situation easily without having to read your topic from the top every time.   You could look at my signature for an example. 

 

Instructions for creating your signature are here: Please put your withdrawal history in your signature. 

You can edit your signature here: edit your signature in Account Settings

[sleepylex]

I read entries on this site a lot but have not posted much - thought I would write an update. 

 

I have had a rather rocky trajectory the last couple of years - often impatient to get off this stuff I have gone too fast and then had to hold for long periods and sometimes up-dose. I am obstinate I suppose and keep thinking that I can do this faster than other people. Hubris - dangerous hubris. I think after falling on my face enough times the message is beginning to stick.

 

The last learning curve has been that in October of last year I was given a course of ciprofloxacin and steroids by a doctor and without thinking or checking took them. A few days after this I was thrown into very unpleasant withdrawal marked by horribly low spirits, difficulty concentrating and DP/DR. I paused my tapering for 4 months after this and it began to settle a little bit. Because I know that in the midst of withdrawal it is almost impossible to remember a time when you were not in withdrawal I made a video of myself to record that I was feeling a bit better - not exactly great, mind you - but good enough to consider reducing a bit. I have watched that video a couple of times since then and it seems easiest to believe yourself when you can see tangible evidence of having felt better. So this has been a useful prop. 

 

As always I calculate ambitious reduction schedules on a spreadsheet forecasting that I will be able to stop within 9 months or 12 months or 15 months. I plan returning to a training scheme that I have taken extended leave from. I make other plans about what I will do. I get excited about the possibilities. I have my game plan that I am going to make a reduction every month and know that I get the worst symptoms about 5 days after a reduction that ease up about 10 days after reduction. I book 3 days annual leave from my work (which being an academic job is reasonably flexible - ie I can work non-stop for 2 weeks to get a lot done and then take 3 days off if I can just fulfil some basic tasks like going to meetings, and putting in reports) to co-incide with a weekend so I have 5 days off. I feel like I have it all worked out and am pleased with myself.

 

I know escitalopram withdrawal tends to be a bit delayed compared with mirtazapine withdrawal so I reduce esc the day before mirt. I make a reduction from 0.35mg to 0.31mg on 01/03 for esc and then on 02/03 go down from 2.3 mg of mirt to 2.05mg. I feel crappy 5 days later which is when I take a few days off work. But even while feeling crappy I manage to keep working (I have a lot of projects going on so I am always very behind - trying to balance withdrawal with working is hard and I have managed this by working from morning till night whenever I am feeling OK) - and so I even feel like I am a bit ahead. The main symptoms I feel during withdrawal are fogginess, difficulty thinking straight - cotton wool in the head is a great description I have heard elsewhere - so that I if I can't keep a piece of information in my mind from one paper I've just looked at when I go to another, a lot of depersonalisation and derealisation. But it gets mostly better by the time I have to go back to work. I also notice that although the first few days of withdrawal are marked by DP/DR and difficulty concentrating, the week after that mostly what I feel is very low in mood and bleak. That tends to go away. In fact I would prefer that feeling to the difficulty concentrating which makes me feel most frustrated. 

 

I figured that that reduction had gone pretty well and was going to wait 3 weeks more to do it again. I thought I would make the same sized reduction (which would make a greater proportioned (or occupancy) reduction) because the last one wasn't too bad. So on 02/04 (this is UK dates) I went down from 0.31mg to 0.27mg of esc and then the next day from 2.05mg to 1.8mg of mirt. I took three days off from work - and felt about as bad as I had last month and I thought this is going fairly well. But the cognitive fog and DP/DR just did not go away - I would wake up incredibly tired in the mornings and often had to return to bed. It did not improve - I was fatigued and had trouble thinking - it was affecting my work and making me miserable. I started to have my characteristic worries and panic that this would never go, that I would not be able to work, that my entire life would be a disaster from now on. But I was determined to hold - I didn't want to lose ground. I held in this position for about 5 weeks until several people suggested I go up on my dose - my family on the receiving end of increasingly bleak monotoned calls back home, my therapist looking at my dead-eyed self. So I relented and went back to 1.9mg of mirt and then 1.95 mirt and 0.28 of esc. This was about 3 weeks ago - and things have probably marginally improved since then.

 

This whole experience has made me have to re-think what I am doing. I could not handle another period like this - it was too disruptive to life and made me feel too hopeless. So I will probably take a 3 month break from any tapering and then do a very slow taper, something like a weekly reduction, starting with one drug and then seeing if I can get into a tolerable pattern. I had had this plan that I would spend a year just tapering and working and then I would emerge like a butterfly emerging from a chrysalis. But I can see that is not going to happen. And it will probably take me another 3 years or so to come off. I am not sure how to live life over that period of time. How are you supposed to live at 50% function (or less)?  Are you supposed to grin and bear it? Or are you supposed to radically change your life to fit that? How can you do that? Or are you supposed to taper at a rate that let's you function at a much higher % and so be close to normal? These days I am not sure what are withdrawal symptoms, what are the negative effects of the drug and what might just be me or another medical condition. Sometimes I think I will muddle through - other times I don't see a way to manage it at all and feel quite hopeless. At the moment I am managing it by putting off decisions and eating a lot of ice cream. 

 

I hope at least I will feel somewhat better after a long hold and have to accept that there is no way I can control how long this process takes. Cue impotent anger at the gods and fates...