MrFrisbee - 26 years on ADs, time to get off but realised its much harder than expected!

[MrFrisbee]

Hi - long story as short as possible (been on ADs for nearly 30 years).

 

I am 58 and been on Anti Depressants since 1998 with only one or two short breaks in that time.

 

Clinical depression with anxiety coming into the mix perhaps 10-15 years ago. Three major depression episodes spread over that time that required time off work, daytime hospitalisation/treatment once. Currently reasonably stable taking 5mg per day of Escitalopram and have been for a few years but anxiety still present in mornings but daily cold water swimming helps with that a lot.

 

Medication History

1998 - tried Sertraline and Paroxatine but in the most effective was Citalopram initially at 10-20mg per day.

2009 Citalopram does slowing increased to 60mg as it was being less effective even when adding Duloxetine, risperidone and pregabalin

Feb 2010 Moved on to Venlafaxine/Risperidone/Buspirone 

Sep 2010 Tried adding Lithium for a while but not much worked.

Oct 2010  Venlafaxine (75mg increasing to 150mg and eventually 225mg), Abilify (Aripiprazole), Risperidone (1mg or 0.5mg)

Nov 2010 Venlafaxine & Seroquel (quetiapine) 

Nov 2010 Hospitalised for day care with bad stress/depression (just for a week)

Dec-Mar 2010/2011 Venlafaxine 225mg & Seroquel 25mg increasing to 50mg and then 100mg and finally 200mg of XL version (quetiapine) and Stilnoct (10mg) for sleep as required.

June 2011 Venlafaxine 225mg and reduced then removed Seroquel

Stable and then in Oct 2016 to Mar 2017 slow taper off of Venlafaxine (felt better and did not like side effects, profuse sweating was main one, weight gain). Occasional use of Zolpidem for sleep (only a few times a month). 

May 2017 - after being off Venlafaxine for a month or two anxiety was intolerable (was having therapy sessions during this time). Depression started to return so prescribed Escitalopram 5mg increasing to 10mg

After about 12 days started to feel better increased Escitalopram dose to 15mg and then 20mg and

June 2017 added in Lyrica (pregabalin) 75mg 3 times a day (to try to help with anxiety).

Early 2023-Oct 2023 - slowish taper and stop (detail below) and then after 3 weeks of nothing horrible withdrawal so went back to 5mg per day to rethink the plan!!!

 

Stable for last 4 or 5 years on 5mg of Escitalopram and wanted to try to come off it.  Took about 6-9 months of slow reductions (Jan to Sep 2023 approx) but only by cutting 5mg tablets in half and alternating doses by day (5/2.5mg etc), then just 2.5mg and then alternate days @2.5mg etc and then nothing! I moved onto a further reduction once I felt fine on the lower dose for 3-4 weeks at least. I thought this was slow enough and with 5mg tablets the smallest we can get here in the UK there is not that much I can do to get less than 2.5mg (though happy to try to make solution). 

 

By September 2023, once I was on nothing I felt fine for about 3-4 weeks and then quite suddenly got a load of withdrawal symptoms (anxiety, confusion, palpitations, panic etc), did not want to put up with it so went back to 5mg per day of Escitalopram.  That very quickly (within a day or so) made me feel better again.  Having read this site, I clearly realise my taper had to be MUCH slower/smaller does at the end and the symptoms I felt once off it was withdrawal and not really depression (though they have some similarities). 

This week I asked my GP for liquid escitalopram so I could taper more slowly and he said he cannot prescribe it on NHS and I would have to go private (so need to see a psychiatrist etc first) or be referred to psychiatrist on NHS (which he has done but could take 6-9 months to hear back). Even though I explained I would be stuck on the medication for ever if they did not give the liquid they cannot do it as they claim it is too expensive (even though I would be taking a micro dose as they only supply 20mg per ML liquid here).   

 

My plan right now is to perhaps try to taper slowly whilst I wait for the NHS appointment hopefully later this year and then I will be ready to go really low once I have the liquid.

 

WHAT HELP DO I NEED?
Is there a way to taper Escitalopram when you can only get 5mg tablets (can I make my own solution?  does cutting them in quarters work? etc)

I am quite worried that even with a slow taper I could have to put up with withdrawal symptoms for many, many months and even years.  Is it really worth it if I am not suffering that much being on the medication? (and considering my age @59) 

Is there anything else I can do to minimise withdrawal when it does hit?

What else have I missed?

 

 

Hope this gives enough information for someone to assist.

 

Thanks,

MrFrisbee.

 

(PS: Signature coming right after this is posted!)

 

 

 

[Emonda]

Welcome, @MrFrisbee,

Thanks for including your signature.

 

Sounds like you've learnt a few lessons of late, it happens to most of us.

 

As you now know, skipping doses is not recommended: Never skip doses to taper

 

Reducing by a maximum of 10% per month of the most recent dose is a great place to start: Why taper by 10% of my dosage?

 

When you break either of the above rules, WD symptoms are the likely outcome:

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

6 hours ago, MrFrisbee said:

Is there a way to taper Escitalopram when you can only get 5mg tablets (can I make my own solution?  does cutting them in quarters work? etc)

 

Have you seen this link for your AD:

 

The link says that you can cut your 5mg pill, but you need to be accurate. Have a look at the Gemini-20 scale.

 

Before I found this site, I tried to taper by cutting a pill by sight...not at all accurate. Accuracy and consistency are very important.

 

6 hours ago, MrFrisbee said:

I am quite worried that even with a slow taper I could have to put up with withdrawal symptoms for many, many months and even years.  Is it really worth it if I am not suffering that much being on the medication? (and considering my age @59) 

 

Even when you taper slowly, you can still experience WD symptoms. Solution = go sower: This is working for me: The Brassmonkey Slide Method of Micro-tapering

 

Is it worth it: We make our own decisions. I'm not much younger than you and am thrilled to be making great progress following the recommendations on this site. I've noticed the side effects that I have experienced after ~30 years on these things are easing.

 

6 hours ago, MrFrisbee said:

Is there anything else I can do to minimise withdrawal when it does hit?

 

These links will be helpful:

 

Windows and waves pattern of stabilization

 

Emotional Spirals

 

Non-drug coping strategies

 

Melatonin for sleep

 

6 hours ago, MrFrisbee said:

What else have I missed?

 

We don't suggest many supplements, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. Add one at a time and start with a low dose to see how it affects you. 

Magnesium

 

Omega-3 fatty acids (fish oil)

 

Avoid alcohol. 

 

This is your own Introduction topic.  Each member has only ONE Introduction topic.  Your own Introduction topic is the best place to ask questions and the place to journal your progress.  This keeps your history in one place and means you do not have to repeat your story. 

 

Once again, welcome to S.A.

 

Emonda

 

 

 

[MrFrisbee]

Wow, thank you so much Emonda!

 

Lots of information and I am not surprised many people get overwhelmed by it all.  I have read a lot of the information above and the links.  Brassmonkey is clearly very, very thorough and analytical.

 

A few specific questions related to my situation.

 

Firstly, in my recent (failed) attempt to taper last year I coped very easily with dropping fairly slowly (though not in terms of how it is recommended on here) down from 5mg to 2.5mg (I was previously on 10mg and cut that to 5mg very quickly) and noticed very limited impacts of this.  The main thing I notice when I do reduce my dose closer to 2.5mg or below is that my feelings of joy/sadness (crying during a sad movie or news item) starts to return a bit.  So I know the reduction is having a largely positive impact at that stage.  

 

I do not tent to overthink or worry about the reductions, I just let it happen.  Even when I stopped completely I did not think hooray I am there etc.  It just happened (though did not last all that long as previously explained).  

 

[OK, I have found my own answer to this next question but have left it in just so you can see my thought process. I noted that Altrostrata thinks that the initial 10% is very cautious but it is a risk reduction reason.  Having been down to 2.5mg for months last year I do know what the impact usually is for me.] Does this mean I can be a little less clinical at this stage (whilst reducing to 2.5mg) or should I go 100% methodical even now?  It does seem that the research on your site implies that the impact/binding on receptors etc of escitalopram can be pretty significant even at small doses, so am I wasting lots of time/effort initially when slowly reducing as I am not really reducing the amount of the SSRI binding (SERT levels) to the receptors etc. (sorry, cannot remember the technical terms).

 

My thinking here is that once I get comfortably to 2.5mg I have to be much more accurate and specific/slow.

 

I am not trying to shortcut the process, just asking (though I think I know the answer you will give)!  Obviously for some the easier the process the easier the ride, for others, perhaps the accuracy and minutia help them. 

 

In terms of my side effects whilst on the drug, I do not notice that many that cause me real concern, but I probably do not remember what I felt like before I was on them (it was mostly terrible)!  I know I suffer from anhedonia though I do still enjoy things, but less than I should. My emotional range is very narrow with a bias for sadness/melancholy rather than happiness. Obviously, having been like this for nearly 30 years it has just become a part of my personality.

 

Anyway, I am getting ready to start the journey and coming up with a plan based on my readings on here and I may well see a private doctor in the UK to get a regular prescription of the liquid medication otherwise I do think the reduction process (cutting/grinding/weighing) is going to be overly complex and if anything remind me too much about what I am doing. 

 

Can you point me in the direction of the daily trackers/monitoring documents?  I seem to have read about those but cannot find them. 

 

Thanks again,

 

Mr.F.

 

 

 

 

[Emonda]

8 hours ago, MrFrisbee said:

from 5mg to 2.5mg (I was previously on 10mg and cut that to 5mg very quickly) and noticed very limited impacts of this

 

My own experience has been that the initial drop was not too rough (15mg to 7.5mg - a bit of dizziness), BUT, when I tried to go from 7.5mg to a lower amount...can't recall exactly what dose as I was doing it by sight, so not accurate...it caught up with me. I ended up going back to 7.5mg and holding there for ~6 months to stabilise. 

 

8 hours ago, MrFrisbee said:

Does this mean I can be a little less clinical at this stage

 

8 hours ago, MrFrisbee said:

My thinking here is that once I get comfortably to 2.5mg I have to be much more accurate and specific/slow.

 

Consistency and accuracy are vital now. Whilst we all respond differently, you don't want to rock the boat and be put into a 'holding pattern' for months while you recover.

 

8 hours ago, MrFrisbee said:

I am not trying to shortcut the process, just asking

 

Yeah, there's no shortcut sadly. Slow and steady, and listen to your body. It's not a race.

 

8 hours ago, MrFrisbee said:

Can you point me in the direction of the daily trackers/monitoring documents? 

 

Do you mean this one: Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

8 hours ago, MrFrisbee said:

Anyway, I am getting ready to start the journey and coming up with a plan based on my readings on here and I may well see a private doctor in the UK

 

It's good to have a plan. Remember to hold your taper if the WD symptoms tick up. Ignore an uptick in WD symptoms at your peril 😬

[MrFrisbee]

Hi, sorry for delay, just finding time to see the doctor to try to get the liquid.

 

Once question, is there any simple way to know if the time is right to come off the AD's?  My main motivation at the moment is that I feel reasonably stable, but not perfect (but is anyone), I feel that I am suffering with "brain fog" which I usually dont get and if I dont get off or at least try soon, then I probably never will. 

 

I am trying to separate out whether some of the "issues" I have right now are side effects of the AD or symptoms of low grade depression/anxiety.  Obviously my worry would be that 

 

Whilst I am fairly stable, I still suffer from...

 

* Low stress threshold and get anxious/wound up by fairly small things.  These feelings are usually gone if a few hours or next day, but can easily return.  This is perhaps one of the big worries for me as my stress tolerance/head room is now much lower than it ever was. 

* Jittery at times (sort of an anxiety type feeling that is centred in my chest (shallow breathing etc). 

* Brain fog (tired, bit confused sometimes but brief) 

* Memory declining (could just be an age thing but who knows after 30 years on these pills). 

* Focus when reading in particular

 

I appreciate these may just be daily norms or they may be medication side effects but interested to hear if there is a way to judge them.

 

I have filled in the daily checklist as a starting point as this is my base level and will see how it goes as I reduce.

 

I am sort of hoping that even if I got down to 2.5mg (half my dose) then I may find some of the side effects reduce perhaps. 

 

Mr.F.

[Emonda]

18 hours ago, MrFrisbee said:

sorry for delay, just finding time to see the doctor to try to get the liquid.

 

Have a read of the 4th post down by Gridley: Transitioning from pills to liquid

 

18 hours ago, MrFrisbee said:

is there any simple way to know if the time is right to come off the AD's?  My main motivation at the moment is that I feel reasonably stable, but not perfect (but is anyone), I feel that I am suffering with "brain fog" which I usually dont get 

 

I pondered this question myself for some time. For me, I felt stable, and I noticed increased side effects of the AD that I did not like. I came to the same conclusion as you: 

 

18 hours ago, MrFrisbee said:

if I dont get off or at least try soon, then I probably never will. 

 

18 hours ago, MrFrisbee said:

Whilst I am fairly stable, I still suffer from...

 

I can relate to all the things on your list. 

 

18 hours ago, MrFrisbee said:

Low stress threshold and get anxious/wound up by fairly small things.  These feelings are usually gone if a few hours or next day, but can easily return.  This is perhaps one of the big worries for me as my stress tolerance/head room is now much lower than it ever was. 

 

This can be worked on. I chatted with a psychologist/counsellor and made great inroads. I debrief with my wife daily about the garbage in my head. It's good just to talk it out with someone else, I find.

 

18 hours ago, MrFrisbee said:

Jittery at times (sort of an anxiety type feeling that is centred in my chest (shallow breathing etc). 

 

Exercise helps me (but not everyone). Running and swimming have been very beneficial. They're part of my daily routine these days.

 

18 hours ago, MrFrisbee said:

Brain fog (tired, bit confused sometimes but brief) 

* Memory declining (could just be an age thing but who knows after 30 years on these pills). 

 

I've noticed the fog lift / memory improve as I've reduced my dose by ~85% over the past few years.

 

18 hours ago, MrFrisbee said:

I appreciate these may just be daily norms

 

My wife reminds me of this. We are humans, we have emotions, and as we remove the ADs, the emotional blunting is reduced. We need to get used to emotions.

 

18 hours ago, MrFrisbee said:

I am sort of hoping that even if I got down to 2.5mg (half my dose) then I may find some of the side effects reduce perhaps. 

 

That's been my attitude. At 2mg, the side effects I noticed at 15mg are substantially gone. 

 

It's not a race. I'm just chipping away. I reflect on how far I've come rather than how far I still have to go.

 

I hope this helps.

[MrFrisbee]

1 hour ago, Emonda said:

Exercise helps me (but not everyone). Running and swimming have been very beneficial. They're part of my daily routine these days.

I swim (pond on the heath, cold/fresh water all year, all weather/temps) 5 mornings a week (nearly 7 years now), it is massively helpful (the colder the better, just don't stay in long).  I run 3 times a week but have an ankle problem that is limiting my running at the moment but trying to fix that (cycling also irritates it).  Discovering running about 12 years ago was a major breakthrough for me in helping me cope and recover from a major depressive episode - I remember my first run when I realised how much it helped.

 

Interesting to read the rest of your feedback as it all sounds very familiar.  Thanks again for your support and insight, it is really helpful and re-assuring. 

 

Mr.F