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HardTimes: late onset withdrawal from long-term citalopram disaster


HardTimes

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Thanks @HardTimes. I have read most of your document. I think your analysis makes sense. As best as you could objectively measure, you are doing worse than prior to the reinstatement. I think even if you were doing about the same, the tie would go to being drug-free for the sole reason that there is no sense in remaining on a drug that is doing nothing for you. 

 

I don't think it is anyone's fault that the reinstatement didn't work or that we didn't catch it sooner. I am positive there are many professionally trained psychiatrists and psychologists who have used these drugs and been completely unaware that 1) the drugs were not actually helping their "mental health" and were in fact slowly worsening it and 2) they were also subtly deteriorating in other ways, physically or socially, in addition to the emotional deterioration. In fact I know some of them and some have used this website for that exact reason. Some people have, unfortunately, spent their entire lives on these drugs and never realized their negative impact, always blaming themselves, because that is what they were taught to do (by doctors and, eventually, everyone else). The reasons why this happens are very complex, but you can find plenty of pontificating about it in the survivor community.

 

I think it is best to not make the same mistake which got you here initially (tapering too fast), so although you have only been on this low dose for a short time, we should be cautious in reducing it, starting at 10% reductions with holds that are long enough for you to get an accurate read on how you feel. I would say 5 days for stabilization of blood levels of the drug and then another 10 to make sure things are stable. Let's call it two weeks. If you feel you are being made quite a bit better by the reduction and have no issues, you can reduce a bit faster, but always be cautious and continue to record the quality of your days and symptoms in your journal. You may find it easier to use some sort of voice to text app so that you don't need to type everything up. How does that sound? 

 

 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

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Dear Hard Times--I'm so sorry that it's taken me awhile to respond.  I'm just now catching up with my email.  Please don't feel alone with your feelings.  What you're describing I certainly struggle w

Happy Holidays, everybody!   Here's a quote from a poem by Rilke (which I poached from the end of the Jojo Rabbit...). I thought it was good for this community. Wishing peace to everybody ou

What helped me was to quantify how I felt.   I started with this checklist for withdrawal symptoms:   I customized it, added some things I wanted to track, and subtracted symptom

HardTimes

@DataGuy: 100 thank yous for your very prompt and thoughtful reply. I completely agree that it is nobody's fault that we didn't catch it sooner, and absolutely certainly not YOUR fault in any way! (just in case you were thinking that when you wrote that.). I place the blame on something we've talked about before - the difficulties of measuring/scoring symptoms without a stable fixed reference point. Every day changes a little bit, and I can likely say "I'm feeling better than yesterday", but how to measure that against two months ago, precisely? For example, long ago I complained that I was always waking up at 5am with a hot flash. This was intolerable, and I wanted to reinstate or do something to prevent that. Now, however, if I could sleep all the way till five I'd be doing cartwheels! But in between the changes were gradual. Add to that my sense (which might have been wrong) that such tiny doses (0.25mg? c'mon!) were just not likely doing very much, and my goal was to build up gradually to something like 2.5 or even the 5mg I was on when this whole nightmare began. I felt I had to keep going up in order to finally get some payoff in terms of stability and symptom relief

 

Even now, having spent days examining all this and reading everything and overthinking everything, part of me is nervous about going off/down - surely the drug is necessary now? What about "Reinstatement is the only solution"? And part of me worries that I've somehow cherry picked my data, that I'm remembering the fall through rose-colored glasses when in fact it was terrible. 

 

But in sum I concur with your assessment and suggestion: Very slow tapering along the lines you suggest. If it feels a bit better after my first short drop I'll likely just stay at that for at least three weeks. And good journaling, in spite of the difficulties. 

 

Instructions to Self:

  • Next time you feel really bad - reach out and vent and so forth, but do NOT up-dose nor down-dose nor turn to "the drug question" for quick solutions. Just try to suck it up, endure, and wait: You ALWAYS feel a little better eventually. 
  • Next time you feel really good - Don't do a damn thing! Don't think: "Hmm, I went down a level and now I'm feeling good, so going down more will be even better!". If you are ever feeling like your old self again, just enjoy it and stay like that. 

Finally: I think the sheer amount of time I've spent on this site over this last crisis is now starting to be counter-productive. I'm feeling relatively OK this morning (not on the couch), and I think I need to start trying to put my head somewhere else for a while. So hopefully you won't hear from me for a week or so, when I'll check in with an update. 

 

Again, a big thank you for getting back to me so quickly and so cogently. I really hope your own situation (particularly diet-wise) has improved over the last little while. 

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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On 1/20/2021 at 11:42 AM, HardTimes said:

@DataGuy: 100 thank yous for your very prompt and thoughtful reply. I completely agree that it is nobody's fault that we didn't catch it sooner, and absolutely certainly not YOUR fault in any way! (just in case you were thinking that when you wrote that.). I place the blame on something we've talked about before - the difficulties of measuring/scoring symptoms without a stable fixed reference point. Every day changes a little bit, and I can likely say "I'm feeling better than yesterday", but how to measure that against two months ago, precisely? For example, long ago I complained that I was always waking up at 5am with a hot flash. This was intolerable, and I wanted to reinstate or do something to prevent that. Now, however, if I could sleep all the way till five I'd be doing cartwheels! But in between the changes were gradual. Add to that my sense (which might have been wrong) that such tiny doses (0.25mg? c'mon!) were just not likely doing very much, and my goal was to build up gradually to something like 2.5 or even the 5mg I was on when this whole nightmare began. I felt I had to keep going up in order to finally get some payoff in terms of stability and symptom relief

 

Even now, having spent days examining all this and reading everything and overthinking everything, part of me is nervous about going off/down - surely the drug is necessary now? What about "Reinstatement is the only solution"? And part of me worries that I've somehow cherry picked my data, that I'm remembering the fall through rose-colored glasses when in fact it was terrible. 

 

But in sum I concur with your assessment and suggestion: Very slow tapering along the lines you suggest. If it feels a bit better after my first short drop I'll likely just stay at that for at least three weeks. And good journaling, in spite of the difficulties. 

 

Instructions to Self:

  • Next time you feel really bad - reach out and vent and so forth, but do NOT up-dose nor down-dose nor turn to "the drug question" for quick solutions. Just try to suck it up, endure, and wait: You ALWAYS feel a little better eventually. 
  • Next time you feel really good - Don't do a damn thing! Don't think: "Hmm, I went down a level and now I'm feeling good, so going down more will be even better!". If you are ever feeling like your old self again, just enjoy it and stay like that. 

Finally: I think the sheer amount of time I've spent on this site over this last crisis is now starting to be counter-productive. I'm feeling relatively OK this morning (not on the couch), and I think I need to start trying to put my head somewhere else for a while. So hopefully you won't hear from me for a week or so, when I'll check in with an update. 

 

Again, a big thank you for getting back to me so quickly and so cogently. I really hope your own situation (particularly diet-wise) has improved over the last little while. 

 

 

HardTimes!

 

I just stumbled across your post while desperately browsing for info (as usual..).

 

Your detailed and thoughtful description of symptoms, especially the different kinds of insomnia as well as the obsessive self-loathing are SO spot-on and reflect EXACTLY what I am experiencing. So I just had to stop by and say thank you for finding and expressing the perfect words. It makes me (and certainly many others) feel less alone in the situation. Also, it puts the self-loathing into perspective.

 

I am so sorry you're still in such a difficult place - and it also scares me, since I seem to be 'new to the journey', and still naively hoping to be able to influence the entire process. Today, I'm basically here to stop myself from introducing new drugs to ease the unbearable situation.

 

Thanks again and stay strong!

 

 

Fluoxetine (Prozac) (25mg?) from December 2002 - November 2005 for anxiety/depression

Effexor (Venlafaxine) Retard (75mg) due to Panic attacks from November 2005 until around May 2020 when I started tapering off from 75mg to about 33mg in September. Accidentially missed a dose and naively went cold turkey from around 33mg to zero on 26th of September. I am in week 13 without the drug now. I've tried CBD oil and htp5 for a while, currently taking Omega 3 (1400mg), magnesium (800mg) and ashwagandha for the cortisol spike.

25th December: Reinstated Venlafaxine with one bead (0.3/0.4mg) in the evening, proceeding with two beads (0.7/0.8mg) per day around noon. Started taking the magensium on the same day, so not sure if this might have a masking effect.

01th January: Updosed to 3beads (around 1mg) of Venlafaxine, so far no adverse reaction

2nd January: Back to 2beads of Venlafaxine, also 1/4 Diazepam, 12mg Lyrica.

3rd & 4th  January: 3 beads of Venlafaxine, 12mg Lyrica

since 5th January: 3 beads of Venlafaxine daily and nothing else except fish oil and magnesium. No changes in daily routine

15th January - 17th January: 4 beads of Venlafaxine

since 18th Januray: back to 3 beads of Venlafaxine

since 19th January: 3 beads of Venlafaxine, introduced Ashwaghanda supplement. Also still using fish oil and magnesium.

Since 23. January: introduced Lyrica to help with sleep/jerks keeping me awake: updosed from 4mg to meanwhile 8mg.

 

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HardTimes

HI @Manati! Thanks so much for the post - I'm going to respond on your intro page rather than here, so it it part of your history...

 

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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Hello everyone.   I am also in insomnia hell.   At best I fall asleep for a few hours when the dawn hits.     I feel like I’m burning and also am awake while my body tries to sleep.   The good news is that I did recover from this once before.     I don’t know how long this relapse will last.    Praying for all.    

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

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HardTimes

So this is sort of my Withdrawal Birthday - about one year ago I went to zero. What a ride it has been. 🎂

 

I also told myself I'd post here once every couple weeks or so, to help with the record keeping. So here's the update:

 

Two weeks ago I started going back down having very painfully decided my reinstatement wasn't helping. I think my symptoms have improved a bit since the reduction (less heat flashes, maybe fewer hear palpitations, less "nervous blood"). Now at 0.5mg. 

 

Since I had gotten to the point where a friend was sending me the numbers for suicide hotlines, and since it has been a year, I thought it would be a good idea to try to develop my "professional" medical resources a bit, for more support and options if I was in "crisis" again. I found a doctor who had talked about WD issues on TV, and while he couldn't see me, he directed me to another treatment centre that sounded hopeful. But to get in you need a reference from your regular MD, who I just went to see today. Here's what she said:

 

👩‍⚕️: She acknowledges that WD syndrome exists and can cause bad problems, and IS likely responsible for many symptoms. But she also thinks that this is not my entire problem, and that the depression that was  being successfully treated a year ago has reappeared because I quit, and the only way to get stable again is to take a drug. She agrees with my opinion that my nervous system has been hyper-sensitized by WD, which makes going back on a drug difficult. But she also believes that my attempt over the last 3-4 months to reinstate at tiny dosages (less than 1mg) is, essentially, meaningless, because the doses are too small (it is all psychosomatic). So her best advice is to simply go on at at a higher dose (5-10mg??). She agrees that might make life very uncomfortable for two weeks or a month, but that the system will adapt and I'll find the same balance I had before I went off. She even suggested hospitalization as a possible part of the process, so I can be monitored. She's getting me an appointment with a local psychiatrist to consult with before we proceed any further. 

 

So I'm a bit disappointed, as for some reason I was feeling a bit hopeful about getting a referral to this place where I have at least a bit of trust in, and now I'm thinking about hospitals and other drug interventions (stressful!). If I knew for sure that enduring a month of painful craziness in a hospital would put me back where I was a year ago, I think I'd go for it. But everything on this forum warns about the risks of taking even a low but "normal" dose this late out, and how it can make everything even worse. And my own experience (to the extent that I'm capable of objectively assessing it) suggests that for me at least, the more of this stuff I try to reinstate, the worse things get. And I think of people like @ten0275, whose experience in hospitals really didn't make things better. 

 

On the plus side, and this is a real plus: MEDITATION! Holy cow! ☺️ I'm (unfortunately) such a skeptic about all sorts of stuff like this, but the other day I watched the Headspace Guide to Meditation. For the last FOUR nights, when I woke up after only a few hours sleep, I sat up in bed and did this long meditation, just voiding my mind of thoughts and doing that "body scan" thing. This has let me go back to sleep! Somewhat lighter and not necessarily very long, but more sleep (+1-2H)! I'm completely shocked by how effective it has been so far. It is too soon to say if it is just coincidence or not, but I'm really hoping! So, to you skeptics out there, give it a shot! I woke up this morning feeling better than I have in a while (w....w....window???), though now I'm a bit rattled by this doctor visit. 

 

Thanks to anyone who reads this! 🙏

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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Hi @HardTimesCongratulations on your one-year anniversary.  I'm so sorry that you're experiencing SI--so very horrifying, bone-rattling, and dark.  The meditation may take longer than drugs in the long-haul, but it does apparently strengthen the brain--perhaps the areas damaged/altered by the drugs.  

For whatever it's worth, the second time I was taken to ER after my last dose of prozac, I was treated by a toxicologist (who turns out to be very respected by the other drs I've seen) who told me he wasn't going to send me to the hospital because having seen other cases of antidepressant withdrawal, the only way he believed I could recover was the slow process of "regrowth of cells via RNA." 

I asked him about taking any other medication to help the process, but he discouraged me from doing so as it would interrupt my own brain's recovery.  I have no thoughts that my experience necessarily relates to yours--I'll just add it to the stew.

Still, no matter what, it's terrible what you're having to experience.  I commiserate....It's unbelievably hard--especially in the night.

Thinking of you and holding the vision of your recovery,

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

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  • Moderator

@HardTimeshappy belated withdrawal birthday :)

 

Happy to hear you are getting some relief via meditation. I am also skeptical of that type of thing, and yet it helps me as well. However, I quit doing it because I had gotten better enough I felt I didn't need it anymore. Thanks for the suggestion on my intro to give it a try again. It really does help sometimes. 

 

I would be very cautious with this doctor. Was this not the same one who told you that you could just stop the drug? Even this withdrawal clinic, I would be cautious. Many doctors will claim to be experts in withdrawal, but the reality is that experts are few and far between. There is very little research about withdrawal in the medical literature and what exists is mostly low quality (by low quality I don't mean it's bad, I just mean it is mostly case studies and observational work, which are less reliable than randomized controlled trials and meta-analyses of RCTs). 

 

It's very common for doctors to confuse withdrawal with relapse. In fact most have done this exclusively throughout the history of these drugs, which has resulted in the current state of the medical community knowing next to nothing about withdrawal. Whenever a doctor makes a claim about your condition and recommendation about treatment, I would ask for some research to back it up. In all likelihood, they will be unable to produce that research or the research will be of poor quality. Recommendations based on poor quality research will tend to lead to worse outcomes. Remember, you have already documented your progress much more meticulously than the doctor has, and the drug pretty clearly was not helping (and you have had an adverse reaction when trying to take a higher dose at least a couple times). So while it is nice to have the support of a knowledgeable doctor, one who is overly confident in their skills but makes poor recommendations can be counterproductive. I don't think this doctor has shown themselves to be particularly knowledgeable or helpful, so unless she produces some strong evidence to the contrary, it is best for your health to be skeptical of everything she says with regards to antidepressants, depression, relapse and withdrawal. I fell into the same trap in withdrawal many times, taking poor recommendations from doctors and regretting it later. I finally stopped listening to them about 4 months post-withdrawal, when I realized they really had no clue what they were talking about. This is unfortunately the case with most doctors. There have been no official tapering guidelines until very recently, and the Horowitz' paper from a couple years ago was one of the first to try and lay out a safe tapering regime. So as you would expect, doctors know very little about withdrawal, tapering, reinstatement etc. and even if they are particularly knowledgeable, their knowledge will not extend beyond the current medical literature, which has a high degree of uncertainty. 

 

All of which is to say: you should trust yourself! At this point you are the most knowledgeable person about what works for you. You have by far the most data and the best grip on your history, your adverse reactions, and what has worked and what has failed. Don't let your doctor throw you off by claiming you have relapsed and need to reinstate at a higher dose (something you've already tried). 

 

Sorry for being so prolix. I think we both have the same habits. Hope you are feeling better : )

 

 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

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HardTimes

Thanks @arbor and @DataGuy, my two regular supporters!

 

Dataguy: I'm taking everything you've said on board. To clarify: My doctor is mostly just worried because she heard the word "suicide", and we can all agree that is an outcome we want to avoid. So she managed to get me an appointment with a psychiatrist, and it seems to me worthwhile to at least listen to what they have to say (though I admit it is making me pretty nervous!). I'm still quite committed to the course I decided a few weeks ago (taper off this very tiny dose I'm on now and just stay off from then on), but I'm also feeling like I ought to put more effort into finding supports and resources other than this forum in case I fall into serious crisis again.

 

But just to play devil's advocate, there are reasons to be open minded: 1) I've tried it a year "my way" and now feel likely worse. 2) I can't honestly say I've tried reinstating at a "normal" dose for the recommended duration. Perhaps if I stayed on for, say, a month I'd recover? In support of this view, the excel sheet detailing various reinstatements shows that most people reinstated at more "normal" doses, not at the tiny ones I've been trying. (Of course, this isn't conclusive, and my experience suggests a more "normal" dose feels pretty freaking awful at least at first!). 3) As some members of my family point out, I shouldn't just assume that I know more than the medical establishment because I've read a bunch of posts on this forum. Maybe doctors are a bunch of idiots in this regard who want to pump me full of unhelpful drugs, but maybe not! This forum, as awesome as it is (and it is), doesn't contain the stories of those who sought medical help and recovered (because they're not likely to be here). So while I'm aware of several stories of people having their conditions exacerbated by talking to doctors, and these make me nervous, there might be just as many stories of those who were actually helped. Again, that chart and the number of "rapid improvements" listed can't be ignored. 

 

So I'll go and hear what this person has to say. I'm hoping it might help me access other things, like a therapist or a support group or something. I think talking about all the bad psychological things I'm feeling might in turn ease some of the physical symptoms. It is a real pity that finding a person to talk to is so much more difficult and expensive than finding a person to write prescriptions!

 

I had a better night of sleep last night - woke at 1, but half an hour of meditation and I went back to sleep! I'm gathering evidence that I'm feeling a bit better since reducing (suggesting I stay off!), and felt pretty good on waking. But I'm feeling a little more frazzled now, anticipating this visit and even writing this post! Likely need to shake my head out of it for a bit. Again, thanks for all the support and advice, both of you (and everybody else!). I REALLY appreciate it! I hope your own situations are a bit better today! 

 

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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manymoretodays
On 2/1/2021 at 8:28 AM, HardTimes said:

And my own experience (to the extent that I'm capable of objectively assessing it) suggests that for me at least, the more of this stuff I try to reinstate, the worse things get. And I think of people like @ten0275, whose experience in hospitals really didn't make things better. 

 

Hi Hardtimes,

Rooting for you, and cheering you on!

And me too, my experience with hospitalization was really not helpful.  And I so wish that there was someplace short of that, that one could go, just for comfort and some respite from the usual environment, when things were tough.

 

Are you not finding any adequate support tele-health, and or Zoom groups?  No family or friends that can just provide some comfort, support, or understanding that you ARE going through a tough time on the ground?  For me, they didn't always get the whole WD thing.  I had to term it differently.   And then I had to figure out, just what I needed, that might help, and then ask for that.

 

And I know, boy do I know........how unhelpful it is to have professionals NOT listen, and just tell me I was wrong, or somehow damaged.  So I don't know why or what you are considering.......  Can you call the psychiatrists office and ask what type of care or treatment they offer?  Can you go directly to a therapist?  Someone who does not prescribe, and then perhaps share with them some of this:

Guidance for Psychological Therapists: ;Enabling conversations with clients taking or withdrawing from prescribed drugs

there are links to the guidance booklet ^, that can be downloaded or printed off for free too

 

And then, not a single improvement, even slight, since you have reinstated? 

Were you experiencing a worsening of symptoms at all?

 

It seems you have been averaging about a months time now, for the past months since December, before making a change in dosing.

 

And sorry to hear about the family members too.  Seems like that is more the norm here than not, that members get pressure from their family to just get better and conform to public understanding.  I mean it really is up to you, to decide ultimately I think, which way you want to go.

 

Did you ever read Robert Whitaker's, Anatomy of an Epidemic ?

 

So many of us, have faced some of the same struggles HardTimes.  And it IS tough/hard.

You might like this topic too:

Acceptance

 

Thank you for your candid- ness, and keeping us updated.

 

And my fingers are crossed for you, to turn the corner soon........into some healing and ease.

 

L, P, H, and G,

mmt

 

 

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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Dear @HardTimes! First of all thank you for connecting with me and for your beautiful words of encouragement that you dedicated to me! I appreciated too much!🙂

So, you too are a victim of the same hellish drug... It seemed so innocuous when I took it for years... Never thought this ordeal...

I had to confess you that in the first period of WD I read so many informations on SA and I was very confusing. I didn't remember how I stole the idea of three colours for my diary notes and when you wrote it I remembered your excel file!! It's wonderful how much this community gives to each other!

You hadn't to blame about reinstatements: it's damn hard to deal with all this! I often think about reinstatement expecially when I think about my return to job... I'm scared about another breakdown, about my inability to manage WD in a more social guise. For me the accounts are not finished until this is over. I was scared that restatement could worse my issues and take me straight to mental hospital. I don't know how are hospitals in your country but, as for me, I had a scary scenario: polydrugged and mental anesthetized. This fear put me on fight. 

I totally understand the considerations in your last post... At the beginning and with the feeling that the whole world was against I was shocked by the medical establishment (almost no one of who I met admitted that withdrawal syndrome could exist) and also by all the informations in this site. I was incredolous, all certainties have fallen and I was doubting, I didn't know to believe. Little by little, when I got inside the question I understand that doctors follow a protocol, sometimes prescribe medications based on a pseudo-diagnosis and in a easy way, they deny abstinence because they don't know how to treat it and they can't predict how you might react to a drug with a sensitized brain. 

Medicine has limitations in its knowledge of the brain, of the gut, of the hormonal system... This is not only a WD problem but this is a problem of using the same protocol medications without a holistic view. SA is a wealth of knowledge that could be used for more scientific researches.

Yes, maybe in your case some changes in dosage could have mixed the cards and destabilized a bit by exacerbating some symptoms. Some issues you are talking about sound like adrenalin hyperactivation typical of acute WD. Maybe you need more time for stabilizing to a precise dose but it is only my supposition that comes from reading many stories.

 

As you are experiencing, I think one of the most important way to face this is using tools to calm our mind, like meditation. Our mind, like a upset child, needs more and more reassurance and peaceful state. CBT helps me to work with stiffened mental patterns that led me to take the drug, ACT helps me to accept this troublesome state of living.

I don't know if you are able now to read (for months it was impossible to me and I read this book with my mother) but I recommend The happiness trap by Russ Harris (many exercises inside are very helpful).

Hope this site can help you: https://www.actmindfully.com

I can't fully enjoy the audio and video resources because of my poor English but I hope you can instead!
Hang in there! You are strong and we can do it!
I send you all my support!

July 2015: the 20mg citalopram for great stress begins

After two years I start tapering (slow but without medical advice) and I guess wrongly. First up to 10 mg, then 5 mg and 2 mg (liquid solution) and skips

January 2020 (I don't remember exactly the day): off citalopram (last dose 2mg).

June 2020: adrenal crash. The beginning of Hell on Earth

 

Current supplement:

- saffron pill (20 mg) + vit. E, omega 3 (EPA + DHA) 2g, magnesium bisglycinate 300 mg, iron , vitamin D3 (2500ui) +K7 (50 ui), vitamin C (1g) + quercitin (25 mg), theanine (as necessary).

 

Try meditating / mindfulness, walking every day, CBT/ACT, massage.

 

"E quindi uscimmo a riveder le stelle" ("And so we went out to see the stars again")

(Dante Alighieri, Divine Comedy , Inferno, XXXIV, 139)

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HardTimes

Thanks for your thoughtful responses, @Leila and @manymoretodays!!! Sincerely! Lots of good suggestions and recommendations for further reading and thinking. But rather than respond to each point, I'd like to post the details of my visit with the psychiatrist, which I found interesting and is worth noting for the record..

 

First off, he seemed to totally accept and acknowledge that I was suffering from withdrawal, which was a surprise. When I described the way I wake up with some sort of "adrenaline hyper activation" feeling, he said that was "classic withdrawal". He also was very unimpressed by the fact that I had been on Citalopram for so long, both because I should have been better supervised and because Citalopram is kind of old-fashioned and lame. He also thinks that I cannot really go on just trying to "white-knuckle" these symptoms, and proposes to put me on a new anti-depressant (yet-unspecified) AND a "mood stabilizer" like Lamictal. Once I'm feeling better, the AD can be tapered off, followed eventually by the Lamictal. He didn't start writing a prescription - he could see I was very reluctant and nervous - and proposed that I think about things for a week and come back and talk some more. So I'm glad he wasn't very pushy, though at the same time when we asked about alternatives to medication he made a snarky attempt at humour by referencing magic wands. He's not the most pleasant person I've met!

 

On the day of my visit I was feeling considerably OK (window-ish!), and pretty determined to just avoid drugs. I'm inclined to understand my situation along the lines Alto laid out here: https://www.patientslikeme.com/members/34434. On this account, my symptoms are not caused by a nebulous "depression" but by my autonomic system trying to achieve homeostasis with a disregulated serotonin system (etc.). I also do have several pretty normal "mid-life-crisis" stressors going on that are totally legitimate sources of anxiety. The trouble is that my system just totally overreacts to them. Instead of confronting challenge with a courageous smile (as in the past), I hide under the covers and hate myself.

 

But today I'm feeling differently.  Even if I accept this account (rather than the "chemical imbalance" account), what treatment can I seek? Other than just white-knuckling, meditation, calm music, etc? I've lost a year of my life watching bad TV on the couch... No, I'm exaggerating a bit, but that's what it feels like. It feels to me that every early morning some sort of adrenaline/cortisol cocktail sets in and all I want to do is quiver on the couch with TV or Harry Potter. Sometimes it is better later in the day for an hour or two, but this is just unsustainable, even with the odd "window-ish" day. It sort of feels like I'm in the "acute" stage now, after a year of being off (bearing in mind my recent reinstatement of a tiny amount).  

 

So. Question: Given that it seems to me that previous attempts at reinstatement have failed, and maybe even made things worse, what are the risks of following the shrink's proposal (new AD+mood stabilizer)? Do I even really want to know? But the rewards (relief) sounds so very tempting!? I'm worried that my head might explode if I take a more "normal" dose  due to being hypersensitive, as seems to be the case from my tiny-dose reinstatement. I'm sure poor old @DataGuy is going to want to strangle me for even contemplating this course of action after taking so long to decide that my tiny reinstatement had made things worse!

 

Anyway, thanks for your feedback and comments and support! I'm sorry I'm so impossible! This whole thing stinks for all of us!

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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  • Moderator

Hi @HardTimes, I think I could make a case against any sort of drug treatment in psychiatry, but I'm not sure you'd want to read all the references. All I will say is that the average AD offers very little benefit over placebo (assuming you could tolerate it) and "new" antidepressants show no special benefit compared to older ones like citalopram. (You can see the efficacy of the average AD here, 2 points over placebo on the Hamilton Depression scale, which is a 54 point scale). If you could tolerate one of the new drugs you try (likely they would want to trial a number of them if the first didn't work), you would be essentially experimenting on yourself for very limited upside. This is all assuming your problem is primarily "depression" and not withdrawal, which is a unique and essentially unstudied condition - at least as far as treatment is concerned. I think your experience makes it pretty clear that the problem is withdrawal and not depression, given that you can no longer tolerate the drug you took for 10+ years with little problem. The depression is likely just a byproduct of the withdrawal condition. If you heal your withdrawal, your depression should become much improved as well. Of course there we arrive at the conundrum: there is no quick fix for an antidepressant-induced injury. I think regardless of the course of action you decide to follow, you'll find this to be the case. My view is that unless reinstating the offending drug works, no drugs or supplements is the best treatment, since further psychotropic treatment will likely either just exacerbate the injury or offer a temporary, partial solution and delay true long term healing. I know there is a tendency to see the short term and fear you will lose everything if this continues, but I think it is best to think long term. You have many years left and you want the rest of your life to be the highest quality possible.

 

As for the fact that you are in the position you are in 1 year out, I think that is very easily explained. For much of your withdrawal period, you've used various drugs and supplements (Xanax, Nytol, the herbal concoction that I would recommend avoiding, 3 reinstatement attempts etc.) and these could have exacerbated your condition or prevented healing. If this psychiatrist thinks he has the solution for you, you should demand proof of that. That means research showing that new antidepressants are successful in treating withdrawal when reinstatement of the previous drug has failed. He will not be able to produce this research because it doesn't exist. So you should ask him why he wants to experiment on you and what the track record is for untested medical treatments (those not tested in large randomized clinical trials for your particular condition). The efficacy and safety record is not good. 

 

I can do my best to guide you away from harmful treatments, but I'm not going to keep making the same arguments over and over. I think people will do what they want to do when they are desperate, regardless of whether it is a rational decision. So far you have tried various psychotropic drugs and supplements for much of the w/d period and I think we can both agree it has not produced good results. I don't blame you, I know how bad withdrawal can be, but I think the sooner you accept that that is not the answer, the quicker you will get back to health. 

 

If I could go to your appointment with you, I would lol. I know many are hesitant to question medical authority and advocate for themselves appropriately. Hope you are doing ok and that the meditation is still helping, @HardTimes. Rest easy. 

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

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On 2/1/2021 at 3:28 PM, HardTimes said:

But she also believes that my attempt over the last 3-4 months to reinstate at tiny dosages (less than 1mg) is, essentially, meaningless, because the doses are too small (it is all psychosomatic). So her best advice is to simply go on at at a higher dose (5-10mg??). She agrees that might make life very uncomfortable for two weeks or a month, but that the system will adapt and I'll find the same balance I had before I went off.

 

Hello HardTimes,

 

Relating to this comment from your doctor: there's a research paper that gives a very good explanation as to why small doses can have large effects:

 

https://www.researchgate.net/publication/8583114_Serotonin_Transporter_Occupancy_of_Five_Selective_Serotonin_Reuptake_Inhibitors_at_Different_Doses_An_11CDASB_Positron_Emission_Tomography_Study

 

If you take a look at the receptor occupancy chart for Citalopram you'll see that 20mg gives an occupancy of 80%, 10mg gives 70% and 5mg gives 60%. So when people follow the usual advice of halving the dose and stopping at 5mg they're dropping from 60% occupancy to nothing. It seems reasonable to assume that's why so many have severe problems.

 

Further down the curve  - it's hard to be exact from the chart - a decrease from 2mg to 1mg looks like it would decrease receptor occupancy from 40% to 20%. So a "small" change in the dose can actually have a disproportionally large effect on the receptors in your brain.

 

Obviously, the reverse will apply if you're increasing the dose. So starting very low and increasing very slowly would give you time to find out if you have become hypersensitive to citalopram (or any other SSRI).

 

The paper does very much support the tapering methods recommended by this forum. By making reductions of 10% of your previous dose you're easing your way down the very steep section of that logarithmic curve instead of falling off the edge.

 

You might want to show the paper to your doctor... 😉

1999 - 2001: Paroxetine 20mg

1999 - December 2017: Lansoprazole 15mg

2003: Venlafaxine 75mg

2003 - 2014: Escitalopram 20mg

2014 - December 2017: Citalopram 20mg

December 2017: Mirtazapine 30mg, stopped after 4 days due to immediate bad reaction

December 2017: Zopiclone 3.75mg, stopped after 2 days due to immediate bad reaction

January 2018 - April 2018: Citalopram liquid, tapering, final dose 0.1mg

December 2018 onwards: Vitamin C 1000mg

Long term (for asthma): Salbutamol and Salmeterol inhalers

Occasional use for headaches: Paracetamol 40mg or Ibuprofen 40mg

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  • 2 weeks later...
HardTimes

Ok, time for my two-week update.

 

First, thanks, @AlanC for that excellent explanation of why "small" changes are not what they seem! Very helpful for understanding how I ended up in this crumby situation - if you only you had a paper that explained how to get out of it! I was also sad to read your post of Feb 11 of bad symptoms connected with coughing and such - I hope that it turned out to be a bit of a passing cold and the situation has since improved. 

 

And thanks to @DataGuy for your lengthy, thoughtful and cogent response (as usual)! From reading lots of other threads and stories, I've also been reminded that this is a site devoted to people trying to get off drugs, not a place to debate the merits of going on them or seek advice about doing so. And I don't think anyone will benefit from debating what is or isn't rational in these situations - one of the biggest problems in this regard is that apparently all our situations and reactions are so individual it is very difficult to induce general principles from all the individual stories I've read, or to deduce whether or not the sometimes contradictory general principles that do seem to exist are appropriate for any particular individual situation! What is reason in the face of so much contradictory information? Anyway, I'll try to respect the goals of the site and avoid asking anything about drugs in the future. If I do decide to go back on something I certainly won't expect you to help bail me out if things go all wrong!

 

And thanks once again to @arbor for our letters back and forth - they're really helpful to me and you've been a real emotional life-line.

 

To continue my story (for my own sake if not for anyone else's): The day after my last post I ended my rapid taper off my attempted reinstatement. My sense (from looking at my journal) is that perhaps things have improved somewhat since I started reducing. Still some reports of considerable psychological torment - depression, obsessive negative thoughts, overwhelming nervousness, but also a sense that some of the physical symptoms were changing. The hot flashes and "boiling blood" are not so sudden nor so intense, yet on the down side they seem to be more constantly present at a low level, along with long periods of heart palpitations. Also some unexpected mild patches of nausea, increased sweating, dizziness. I think my sleep was improving a bit too - more nights with 5 hour stretches of actual sleep + residual fragmented sleep. Talking on the phone to an old friend was great - I temporarily saw my old self was still in there somewhere, which was really nice. My mornings were still often spent somewhat terrified of getting out of bed or facing the day - I feel very jittery and nervous and reluctant. However, I also eventually realized that I've had such "avoidance" behaviours at various points in my life before my WD started, and that might be something I need to deal with somehow. 

 

Overall, my sense is that I'm less on a yo-yo now? Instead of one day at "8/10" and then two at 0, and then up to 6 and so on, I've sort of settled into a steadier but pretty lame 3 and a half. I really miss those long stretches of windows I had in the earlier months of my WD, and remain angry and confused because I seem to have deteriorated rather than improved over 13 months. Maybe I simply do have some sort of "depression" along with the WD symptoms? But more positively, compared to around Christmas I think I can see some small signs of progress, or at least change. I haven't had any significant thoughts of ending it all lately, which is surely a good sign. Some afternoons I've attempted to get down to new projects and shown a bit more engagement with something other than the TV, but it isn't yet at the level it was even six months ago I don't think.

 

For the record, I also did go back to the psychiatrist for a second visit: As predicted by most people here he was a bit of a jerk. He really took offence to my questions, and likened the whole process to going to a mechanic: When you take your car to the mechanic you don't question if he knows how to change the brake pads. You just trust the professionals! This didn't inspire a lot of trust. He proposed Lamotrigine (a "mood stabilizing" anticonvulsant Alto took in small doses during her recovery that I've read about with some hope) and Brintellix (a newer "mild" AD that should be easily tolerated) - though exactly this combination is what member Sheera has been struggling to deal with for FOUR years!

 

I also went to a hypnotherapist! I (er, my wife mainly) thought he might be able to help with sleep issues. I thought he was a pretty good therapist, but the hypnotism was disappointing. Overall I think I'm better off talking with old friends if I can, but it was worth a shot. Again, I wish talk-therapy were more readily accessible. Though he too told me to get back on some drugs as quickly as possible!

 

So life continues somehow. I'm going to keep on keeping on and try to post progress/change every two weeks or so, if for no other reason than for my own records. Stay tuned for the next thrilling episode.

 

Thanks to anybody out there reading this and I'm wishing you all progress. 

15+ years Citalopram 10mg (sometimes 20?)

2019 Citalopram 5mg. No problem reduction.

2020 Citalopram 5mg to zero. (Feb)

2020 (Feb - mid Oct): Very rare use of 0.125 or .25mg Xanax for really bad symptoms

2020 (Feb - Nov): Occasional use of "Nytol" sleep aid (an antihistamine). 

2020 Failed reinstatement: Escitalopram by accident (not Citalopram).  

 -- using a scale, started July 27 0.5mg, doubled every week or so to reach 5mg by Aug 30. Too fast - terrible depression, quit.

2020 (Oct-current): Supplements:

 -- Morning: Magnesium 300mg, Omega 3(483 EPA, 360 DHA +Vit E) Night: Liquid Valerian/Passiflore/Escholtzia - French organic herbal sleep aid, 1.9mg LD Melatonin 

2020 Current - new Citalopram reinstatement. (Accidentally started with Escitalopram before realizing and switching to Citalopram Oct. 30)

 -- using pipette method: Oct 30, 0.25mg; Nov. 4th, 0.375; Dec. 1st 0.5mg, Dec. 21st 0.75mg Jan 19: Decide reinstatement fail: Jan 21 0.625mg, Jan 28: 0.5mg

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  • Moderator

Thanks for the update @HardTimes. I can't wait for the next thrilling episode, hopefully not another cliffhanger : )

 

Yes, no point in debating what is rational, since what is considered rational is mostly just someone's subjective opinion. But, if you have well-defined goals, some time frame in mind and sufficient resources, we can at least try to try to achieve your pareto-optimum.

 

I have developed a distaste for people who say "just trust me". These folks often seem like the last ones you would want to put your trust in. If someone cannot provide verifiable, understandable reasons for their recommendations, they are mostly deserving of skepticism. 

 

Glad you are feeling a bit better though. One of the hallmarks of withdrawal appears to be a subtle shifting between windows and waves, sometimes for no discernable reason. I still experience it myself. A long time ago I refused to believe that there was no reason for the shifts and that it was out of my control, but I can't say I have had much success controlling it. It is nice to know that waves will end at some point, but it would be nice to be able to skip them altogether!

 

Wishing you continued improvement : )

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

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