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HardTimes

HardTimes: late onset withdrawal from long-term citalopram disaster

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HardTimes

SO... Just discovered something at once kind of terrible and absurd. The drug the doctor gave me was ESCITALOPRAM, not CITALOPRAM. Which are not the same thing (one is sold as "Celexa" and the other as "Lexapro"). I can't entirely account for how I screwed this up so badly - I think I thought the "escitalopram" was the French way of naming it (I live in France), or a french brand, or maybe a generic brand of the same drug. But it isn't. Either my doctor or the pharmacist or my language skills screwed up somewhere along the way.

 

So this means that when I decided back in august to try to reinstate, I tried to reinstate on the WRONG F%^&ing drug. I worked my way up to 5mg and felt totally crazy. Apparently from what I just started reading today, EScitalopram is also twice as strong, such that 5mg of "es" is closer to 10mg of regular citalopram. So I was actually taking way, way, way too much of the stuff back in August. 

 

Now, as I write this, I am on my seventh day of an attempted reinstatement, but again, this has been on the wrong drug! I've been taking a very, very small dose (0.25mg) with a syringe. While it has changed my symptoms somewhat, it hasn't exactly relieved them. Today, a few hours after that very small dose, I feel pretty stoned and glassy eyed, unmotivated, and with tingling sensations on the back of my head. The hot flashes have returned, though not as severe as they once were. I fall asleep much more easily than before reinstatement, but I still wake up after only four hours with a hot flash and difficulty sleeping again. I'm also still pretty depressed, though it can be hard to feel much of anything when the "stoned" sensation hits. I can feel that the impact now after 7 days is stronger than it was, that a pattern is developing, even though it is such a tiny dose and such a short time. 

 

I'm such an idiot for making a complicated situation even more complicated. It seems pretty clear to me that I should immediately stop taking this (I don't think I need/want to taper after so small a dose and after so short a time, right?). So the new strategy is to get this stuff out of my system, give myself a couple of weeks with nothing at all, and then reassess yet again. @DataGuy, you seem to be my moderator advisor on all this, so if you have a moment to confirm and console that would be great. I'm going to force myself off for some exercise now - I've had several days now where all I really want to do is stare at the TV. Not good!

 

 


20 years on a low dose of citalopram (10mg)

2019 sometime I dropped to 5mg with no problems. Stayed on that for 6 months or so? 

Feb 2020 went from 5mg to zero, thinking that I had sufficiently "tapered"

May - June 2020 - sometimes taking sleeping pills, thinking I had a sleep problem, not SSRI withdrawal

Sometime around June learned about withdrawal syndrome

Entire month of August - Attempted reinstatement, but with Escitalopram, not Citalopram. Apparently increased dosage too quickly, and ended up in really bad shape. 

Since ending reinstatement, I immediately had several week+ long windows, alternating with waves. But life seemed pretty good.

Last wave hit hard and wasn't going away, so mid-october started a new reinstatement that doesn't seem to be working.

Feb - Current: occasionally (rarely) using .125 or .25 Alprazolam to treat severe anxiety symptoms if necessary.

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arbor

Oh yecchh, this certainly sounds like an easy mistake to make.  Hope you feel better soon, Hard Times--

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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DataGuy

Hi @HardTimes,

 

Sorry to hear about the mishap, but it probably is not as big of a deal as it seems. Escitalopram and Citalopram are very similar. Both have strong action on the serotonin transporter and not much else. Escitalopram is a bit stronger, and that definitely could have thrown things off during the prior reinstatement, but this time it likely did not affect things too much. You may have gotten the same reaction with Citalopram. We have reinstated people who stopped Escitalopram with Citalopram before with not terrible results. 

 

If the current dose you are on is making you feel stoned, you could always lower to 0.1mg. Just have to decide whether you feel better with a tiny amount of drug or none. It's very tough and any evaluations will be necessarily subjective. I am actually a bit skeptical of the scales they use to evaluate whether these drugs make people less depressed, like HAM-D or Montgomery-Asperg. There is an inherent problem that the person has no objective anchor for how they feel and a very imperfect memory of how they felt off-drug (or on drug, depending on when the measurement is taken). Also tough to evaluate dose changes. I feel like this is where patients run into trouble. They take the drug and feel worse, but mistake the worsened feeling as not being caused by the drug. The doctor, trained to think the drug helps, increases the dose and the patient feels even worse and thinks they are hopeless. Very insidious. 

 

I will leave the evaluation as to whether you feel worse or better to you, but I would recommend you step down to 0.1mg for awhile before stopping altogether. This may be a more appropriate dose, as ridiculously trivial as it seems. 

 

This is the difficulty of withdrawal. Symptoms can often be refractory to any treatment, especially initially. All I can tell you is that it will, very slowly, get better. Surviving and protecting your health is your priority. If you do that, you will eventually get your old self back. Please keep that in mind and be sure to enjoy any windows you get. 

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

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

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

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HardTimes

Hi @DataGuy . I completely agree about the difficulty of measuring all these subjective feelings. I'm trying to keep track of symptoms, and quantify the overall level of symtoms in the AM, PM and evening, but I can see that I'm not always in the best place to judge because the numbers are comparative to feelings I had previously that I cannot correctly remember. It really isn't easy. But it can be helpful, I guess, to be able to look back and see some general trends of some kind. Sometimes lately I've just become exhausted by the whole tedious process and I've been too depressed to be bothered to note things in a journal, and then have to try to remember a day later. 

 

Having discovered the EScitalopram vs Citalopram error, and based on your comments that maybe this wasn't a HUGE deal, I decided NOT to stop this attempt at reinstatement, but I did drop down a level to 0.125mg. So, for the record, this current reinstatement has been:

0.5mg - one day, thought it was too much.

0.25 mg 5 days, until discovering the error

0.125mg 2 days, instead of stopping entirely. 

All of this was Escitalopram, when it should have been Citalopram. 

 

However, from some of my reading, it looks to me that while the difference between EScitalopram and Citalopram isn't that huge, there IS a difference. And it makes sense to me that if I've been on something for so long I should reinstate the same thing. The dosage difference is in fact double, and some of the side effects are a little different (https://www.singlecare.com/blog/celexa-vs-lexapro/). So I've looked around and found one last pill of Citalopram that I can dilute and turn into quite a few doses if I want to.  Do you think it is safe to switch like this? Or should I stop the Escitalopram for a week first? Or, since the doses are so small, likely moving from one to the other won't be a problem? I think I'll feel more comfortable, somehow, knowing I'm taking the same stuff I was supposed to be taking, and maybe that placebo effect will help too... Advice appreciated.

 

Another bad night of sleep last night - I wish I could explain it better to you. It is not that I'm not sleepy and yet forcing myself to try to sleep. In that case I could just get up and write a novel or whatever. Instead,  I'm exhausted, and physically out of it, yet my mind is dancing around all over the place, and I get a strange nervous panicky feeling. If I turn on the light and read for a while, or maybe turn on the tube, I cool off and sometimes my brain settles to the point where my eyelids are falling and the book falls out of my hands. But then there is an unexplained rush of heat and panic and I'm "awake" again. For hours on end! I'm at the end of the rope on this. My wife has booked me acupuncture on Saturday, which I'm not all that optimistic about, but at this stage I'll try anything if it keeps me safe. 

 

Thanks again for your efforts. I really am just so sick of all this and finding it difficult to put a brave face on it all and keep making the effort. But I have to!


20 years on a low dose of citalopram (10mg)

2019 sometime I dropped to 5mg with no problems. Stayed on that for 6 months or so? 

Feb 2020 went from 5mg to zero, thinking that I had sufficiently "tapered"

May - June 2020 - sometimes taking sleeping pills, thinking I had a sleep problem, not SSRI withdrawal

Sometime around June learned about withdrawal syndrome

Entire month of August - Attempted reinstatement, but with Escitalopram, not Citalopram. Apparently increased dosage too quickly, and ended up in really bad shape. 

Since ending reinstatement, I immediately had several week+ long windows, alternating with waves. But life seemed pretty good.

Last wave hit hard and wasn't going away, so mid-october started a new reinstatement that doesn't seem to be working.

Feb - Current: occasionally (rarely) using .125 or .25 Alprazolam to treat severe anxiety symptoms if necessary.

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DataGuy

Yes, there is a difference between Citalopram and Eschitalopram, however, the main pharmacological effect, which is likely the culprit in the withdrawal syndrome, is the same. Both bind to the serotonin transporter, with escitalopram having a slightly higher affinity for it and thus being stronger. However, the drugs likely do have off-target effects. If these are the source of your problems, it is possible you could have an easier time with citalopram. It is worth a try, but I would not depend on it to make a huge difference. 

 

I would not get too hung up on differences in reported side effects. These are often recorded and reported haphazardly and can vary by trial even with the same drug, since they can be confounded by a number of factors, one being that a certain percentage of trial participants are already taking psychotropics, are usually cold-turkeyed off of them prior to the trial, and are then randomized to the placebo or drug groups. So a certain percentage of participants taking the placebo are in drug withdrawal and will have withdrawal symptoms which could dampen the signal for side effects in the drug group when they are compared. The amount of patients taking psychotropics and what percentage are randomized to placebo will vary by trial and is essentially just unpredictable.

 

Yes, at such a low dose, it is pretty safe to switch from escitalopram to citalopram. I would start low, then if that doesn't help after a few days you can try increasing it. The falling asleep and then being jolted awake by adrenaline is pretty unmistakably a withdrawal symptom, so you may benefit from increasing the reinstatement dose if you can tolerate it. 

 

How much on average are you sleeping per night? How much are you exercising per day? Would be good to get a daily schedule of activities so that you can see what impact your behavior may be having on your sleep and symptoms. 

 

Yes, the goal is survival. I think when you look back, you will be proud of your resourcefulness under exceptionally difficult circumstances. 

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

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

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

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HardTimes

Hi again. Mostly just to say thank you to @rupa for reaching out to me. Amazing that someone in India can take the trouble to communicate with a total stranger in France! 

 

As you'll see if you read my most recent posts, I have indeed attempted to reinstate (I started about a month ago). I should update my signature. I am now taking a very low dose (0.375mg) of Citalopram (not Escitalopram). However, it doesn't seem to me that I'm really stabilizing, exactly. I think it is a little different from those nights before reinstating when I wasn't getting any sleep at all, so maybe it is a little better. But it is still pretty rough going. Before (many months ago, when all this started) I would bolt awake at 5am, feeling really hot and grumpy, but emotionally I wasn't that bad. It seemed a purely physical/chemical reaction. More recently, however, the psychological and the physical have joined forces. Last night I woke after only 2-3 hours of sleep in a panic, had an enormous hot-flash sensation, and felt very emotional and anxious about my career/future. I read a bad novel and eventually fell back asleep, only for the sequence to repeat an hour or two later. This sort of thing is now typical, and I'm still finding my days are often filled with fierce psychological symptoms: anxiety, depression, self-loathing, narcissism (everything seems to be only about me), a total lack of self-confidence, regret, etc. Physical symptoms persist as well, though by far the worst is the "insomnia", since it can leave me feeling totally drained and depleted and unmotivated all day. This wasn't as evident in the early days, when it seemed to be primarily a strange physical sensation.

 

I started this reinstatement on 0.25mg, and after a couple weeks bumped it up a tiny smidge to 0.375mg. My thought was that, since I hadn't stabilized much, I should try increasing. I've also tried changing when I take the stuff - I thought maybe before bed might help with the sleep, but then I started to think that maybe the hot flashes were actually being caused by the medicine, so have slowly moved back to taking it at mid-day. At this point I don't know if I should be a) aiming to increase the dose (slowly, carefully) until the symptoms are greatly reduced, b) decrease the dose because apparently I'm not overreacting to this amount, or c) quit this reinstatement entirely. Either way I want to try to talk to a psychiatrist about some kind of solution, even if it involves some other medication? It has been 10 months, and those good long patches of good days I had over the summer feel very far away. Between taking drugs and a stress induced heart attack (or something even worse), I'll take the drugs. 

 

So I guess my questions are: Has my attempt at reinstatement failed? Have I just not given it enough time? Do I need to increase the dosage? Or go back down? Or just stay the same and be patient? 

 

And to finally respond to @DataGuy regarding exercise: We're under lockdown here. I'm still getting out for at least a boring walk everyday, and running for half an hour or so every other day, unless my symptoms prevent me (like bad pressure headaches or fatigue). On the rare day (I think there have been 2 since I last posted) that I'm feeling OK, I might do some other sporty activities with some local kids. So not a huge amount, but I'm getting out every day. I recently read something about low-intensity exercise (yoga?) might be better for reducing cortisol levels, rather than heavier cardio-vascular stuff like running, which apparently can actually increase cortisol production. I suppose it is likely a balance - but maybe I'll have to start trying yoga of some sort. 

 

Thanks again to both of you for caring about strangers!


20 years on a low dose of citalopram (10mg)

2019 sometime I dropped to 5mg with no problems. Stayed on that for 6 months or so? 

Feb 2020 went from 5mg to zero, thinking that I had sufficiently "tapered"

May - June 2020 - sometimes taking sleeping pills, thinking I had a sleep problem, not SSRI withdrawal

Sometime around June learned about withdrawal syndrome

Entire month of August - Attempted reinstatement, but with Escitalopram, not Citalopram. Apparently increased dosage too quickly, and ended up in really bad shape. 

Since ending reinstatement, I immediately had several week+ long windows, alternating with waves. But life seemed pretty good.

Last wave hit hard and wasn't going away, so mid-october started a new reinstatement that doesn't seem to be working.

Feb - Current: occasionally (rarely) using .125 or .25 Alprazolam to treat severe anxiety symptoms if necessary.

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rupa

@HardTimes

 

Dear ,There is no such thing as stranger as our forum made us all living in one global village.

I appreciate very much you reinstated.

As long as we are on the drug,irrespective of quantity,it effects brain.Same time ,if we stop suddenly ,that too effects the brain.

So,

Steabilizing means,keeping same dose for four weeks.Without giving a damn to symptoms.

For sleep quality,you should use turmeric mixed warm milk,butter milk with turmeric etc.soft mashed Rice with raw onion and buttermilk helps greatly.

The key is ,every four weeks ,steadily reducing the quantity,as per our forum suggests,10%,would help the brain rewire eventually.

Once I reach zero,then it took 2 years for me to reach before the drug use state.

I believe,food habits greatly helped for eventual recovery,Once sleep quality improves,thats what I call it recovery.

 


Cold turkeyed risperidone (1m.g)and trihexyphenidyl combination drug out of ignorance,In August 2016 after one month use.

Withdrawal symptoms settled at dreamful,disturbing sleep.

Thus introduced to olanzapine for sleep.Started using olanzapine out of ignorance.

Tapering olanzapine 10 m.g from February 2017.

May 2018 :Still suffering dreams,Still tapering olanzapine at 0.625.100ml water+2.5 mg olanzapine. June 2018 22.5ml=0.57mg.July 2018 20ml,August 2018-17.5ml,September 2018-15ml,October 2018 10 ml,December 2018 7 ml, BrassMonkey slide method so far at lower doses.2 nd December cold turkeyed , only to reach minure doses as reinstatement to cutshort endless tapering process.4rth December started 1ml.

Almost no symptoms and sleep is better,So started 0.5 ml from 17-12-2018.

"0"from31-12-18.Re birth would happen from 2020,as rejuvenation would take 2019.

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DataGuy

Thanks for the update @HardTimes,

 

I would not rule the reinstatement a failure yet. It can sometimes take months to stabilize after reinstating. I think the fact that you are able to get back to sleep sometimes after waking up early is a good sign. I hope you are still recording significant symptoms changes and what you think is affecting them. Keep in mind that you were taking the anti-histamine and Xanax (alprazolam) for awhile. I hope you are staying away from these now. It is very possible that withdrawal from these drugs is confounding your recovery at the moment. The good thing is you did not use them too much and did so intermittently. However, they are sedatives, and your nervous system will generally react to sedation by downregulating inhibitory receptors. Thus you are left in a more excited (and unpleasant) baseline state of activity. The Xanax is also neurotoxic, as the antihistamine likely was too. Not good for brain health, mental health or physical health, and likely not great for recovering from an injury induced by citalopram withdrawal. 

 

Of course none of this is your fault. You were simply given poor advice from doctors who prescribe these drugs without knowing much about the consequences or how to safely taper them. There have been some studies published now that withdrawal syndromes can last months or years, but that is after these medications have already been on the market for many decades, so you could argue the medical profession has been negligent in warning their patients. The best thing you can do now is stay drug and supplement free (other than the reinstated citalopram) and do things that are good for you with a high probability (exercise, socializing, some work, trying to relieve stress with meditation, yoga or quiet reading etc). It sounds like you are doing everything right, but it will still be tough for awhile. Just hang in there.

 

As to whether you should increase the dosage: did you feel any improvement when you moved up the dosage last time? Any increase in adverse effects? It is very hard to say whether you have improved simply from your description. You will have to look at your symptom pattern if you are keeping a log. 

 

Re: talking to a psychiatrist about a solution. There isn't any effective treatment for withdrawal syndrome that we know of. They have done no formal trials as far as I know, and the vast majority of drugs tested for problems of the nervous system demonstrate no health benefit (no decrease in all-cause mortality risk vs placebo). I think your best bet for a full recovery and happiness is to aim to eventually be drug free. More psychotropics are just likely to exacerbate your problem. Seems the conclusion that researchers have reached regarding off-label prescribing (which any prescription you receive will be, since they are not studied or approved for that usage) is that it is unethical, because it is very much more likely to harm the patient than to help. If you want to read why, check out Ending Medical Reversal by Vinay Prasad MD and Adam Cifu MD. I am doing my best to prevent further harm to you. Hope that you get some relief soon @HardTimes.

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

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

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

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HardTimes

Thanks for the replies. @DataGuy, I have no doubt at all that you are doing your best to prevent further harm, and I hope I have clearly expressed my gratitude for your efforts. My desire to seek whatever other solutions I can isn't based on you or your advice at all, just on my frustration with the situation and my sense that 10 months on I feel I'm actually worse in many ways, so it becomes increasingly more difficult to just keep telling myself that time will heal all wounds. 

 

However, on a positive note, the day after my last post (which was a pretty bad day) counted as a genuine window, and several days this week have been reasonably good as well, though I really have to monitor my thoughts very strictly. I've managed to get a bit more sleep, and the morning heat/panic/nervous electrical sensations were improved. And this IS an improvement on the period before reinstating, when I had those nights with no sleep at all, and was overcome by feelings of shame during the day. My inclination is still to try to increase the reinstatement, as I really want to be relatively symptom-free for a decent period before I do anything else. But it isn't easy to figure out what the medicine is doing. Or rather, it isn't always clear what symptoms are being caused by the medicine, and which are being helped by it. Even on this very low dose, which I now take with food at midday, it seems to me that I can feel the drug hit me 3-4 hours later, giving me a strange pressure-headache, sort of stoned yet anxious sensation (we've already talked about the difficulties of rating and ranking symptoms). It sometimes seems to help, and sometimes seems to hinder. Now I think I'm going to just stick where I am until the end of the month and then maybe go up another tiny notch. 

 

Unfortunately last night was pretty bad again, and all morning I've been gripped by these shooting sensations of nervous energy - like you would have if you were about to go on stage before some huge crowd, or were about to go in for a huge job interview or face some really difficult emotional situation. But I have nothing really to be nervous about! So strange, and I can't help but feel ashamed of it, even if I can rationally tell myself it isn't my fault. It feels like it is my fault - I'm just not sufficiently "British", so to speak. 

 

Anyway. Again, I appreciate your help and wish I could buy you a beer (not that I'm able to drink alcohol anymore!). I'll likely check in again after I try bumping up the dosage a bit in a few weeks time. Does that sound about right? I don't want to be posting on here and harassing you every day!

 


20 years on a low dose of citalopram (10mg)

2019 sometime I dropped to 5mg with no problems. Stayed on that for 6 months or so? 

Feb 2020 went from 5mg to zero, thinking that I had sufficiently "tapered"

May - June 2020 - sometimes taking sleeping pills, thinking I had a sleep problem, not SSRI withdrawal

Sometime around June learned about withdrawal syndrome

Entire month of August - Attempted reinstatement, but with Escitalopram, not Citalopram. Apparently increased dosage too quickly, and ended up in really bad shape. 

Since ending reinstatement, I immediately had several week+ long windows, alternating with waves. But life seemed pretty good.

Last wave hit hard and wasn't going away, so mid-october started a new reinstatement that doesn't seem to be working.

Feb - Current: occasionally (rarely) using .125 or .25 Alprazolam to treat severe anxiety symptoms if necessary.

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DataGuy
On 11/19/2020 at 6:22 AM, HardTimes said:

Thanks for the replies. @DataGuy, I have no doubt at all that you are doing your best to prevent further harm, and I hope I have clearly expressed my gratitude for your efforts. My desire to seek whatever other solutions I can isn't based on you or your advice at all, just on my frustration with the situation and my sense that 10 months on I feel I'm actually worse in many ways, so it becomes increasingly more difficult to just keep telling myself that time will heal all wounds. 

 

-------------------------------

 

Anyway. Again, I appreciate your help and wish I could buy you a beer (not that I'm able to drink alcohol anymore!). I'll likely check in again after I try bumping up the dosage a bit in a few weeks time. Does that sound about right? I don't want to be posting on here and harassing you every day!

 

 

@HardTimes I think you should seriously consider that Xanax, Nyquil etc have hindered your recovery, and that is why you feel almost worse off 10 months later. These drugs are unlikely to be good for your health long term and the research showing that they (Xanax anyway, but likely Nyquil as well) result in neurotoxicity seems like a solid confirmation of that. Xanax is regularly on the top 10 of the CDCs most deadly drugs for drug toxicity and it is only a single benzodiazepine. Doctors are free to prescribe any of 10 other ones, so it is fairly impressive to be consistently on the list. 

 

Perhaps you can buy me a root beer, I don't think I will be drinking anytime soon either : )

 

Here is Xanax (alprazolam), right up there with cocaine and heroin https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_09-508.pdf1364736590_Top10mostdeadlydrugsCDC.thumb.jpg.b32dde483a498effe5d97e6873dac8f7.jpg

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

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

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

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