Displaced1021: Tapering off of domperidone with horrible side effects

[Displaced1021]

Hello, I found this forum by searching for domperidone withdrawals and can see there are many other members experiencing something similar @FightingChance @RubyRo @ManiacValleyMama. I started domperidone in September for lactation (12 pills total - 3 times a day). I was on it for almost 2 months and started trying to come off in late October. I went down by 3 pills over a period of 2 weeks and that’s when I started experiencing some depression symptoms. My doctor wanted to put me on Zoloft but was concerned about the interaction with this medication and domperidone (concerning the heart). She insisted that I taper off of domperidone much quicker and I started to come down one pill every 3 days. Since then I felt like I have been living a nightmare. I experience almost constant anxiety, insomnia, agitation, restleness and more recently heart palpitations and shaking hands. I slowed down the taper a few weeks ago and I’m down to the last two pills. I am terrified of going down any further although I really want this nightmare drug out of my system. I know that for most people I have read about, they came off cold turkey and I’m confused about why I am having such a powerful reaction. My body feels like it is shutting down. I am hoping to get some guidance about how quickly I should taper off if the remaining pills and if I should even go up a dose. Thank you for the help. 

[Displaced1021]

September 2021 - started 12 pills domperidone (4x3).
End of October - early November - went down 3 pills in two weeks. 
November - went down 1 pill every 3 days until reached 3 pills. 
December - went down half a pill every week. 
Currently on 2 pills 

 

Other medications- Zoloft 150mg for 1.5 months, clonazepam .5mg as needed. Synthroid .075mg

 

Edited December 29, 2021 by ChessieCat
removed quote

[Kiasofia]

Welcome @Displaced1021

I'm sorry you are suffering from this drug too. We have indeed gotten quite a few people dealing with Domperidone withdrawal lately. We've gathered some information here: Drugs and Lactation Database, 2021 Domperidone Review

 

As we advise with psych drugs, it is usually more important to taper off slowly and avoid withdrawal, than to get off the drug fast. Bad side effects might warrant a faster taper, but ideally this should be avoided.

 

Why taper by 10% of my dosage?

NEVER SKIP DOSES TO TAPER

Tapering resources

 

What is withdrawal syndrome?

The Windows and Waves Pattern of Stabilization  

 

When were you taking Zoloft? What date and dose did you stop?  Can you please add this information and the rest of your drug history to your signature following these instructions:

 

How to List Drug History in Signature

 

Here is our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover. 

Symptoms and self care topics  

 

The search function on this site doesn't work very well. To find things on the forum I find the easiest is to type "survivingantidepressants.org + what you're searching for" into a search engine.

 

This is your Introductory topic, where you can ask questions and connect with other members.  If you need any advice specific to you and your situation, please ask it here. Otherwise, feel free to join discussions on other threads. We're glad you found your way here.

 

 

Edited December 30, 2021 by Kiasofia

[RubyRo]

Hi @Displaced1021 - thanks for reaching out. Unfortunately domperidone withdrawal seems to be quite common, despite what the medical literature says about it not crossing the blood-brain barrier 😞 it seems to particularly affect people who have been on it for a while, and on higher doses - as women like us often do for breastfeeding. There are many of us out there, and we understand what you’re going through. You’re not alone.

 

Your symptoms sound really familiar to me. Acute dom withdrawal is the worst thing I’ve ever experienced - at the height of it, I was in so much physical pain and my anxiety levels were so high that I was convinced that I was going to die - and it took me a while to work out it was drug withdrawal and not just me being really ill / going crazy all of a sudden.

 

I totally empathise with wanting to get off it as quickly as possible. I have found that quick shifts in dose can result in scary effects and can make it harder to recover, and l agree with @Kiasofia. If your heart is OK (have you had an ECG?) I suggest you stabilise at your current dose for about 6 weeks to 2 months, then go for a slooooow taper. With dom it’s also really important not to skip doses because it’s got a short half-life. This means that if you skip a dose, it’ll be out of your system entirely and you might end up with inter-dose withdrawal (not fun). Whatever you decide to do though, I’m here for you.

 

I’m down to 6mg per day now, dropping 0.5mg every two weeks spread evenly across three doses per day. I’ve found that my body can handle this taper and I can function OK while I do the taper, with minimal withdrawal. At this rate, it’ll take me another 6 months or so to get off it entirely. I might have to slow the taper down further at the end. I’m playing it by ear.

[Displaced1021]

Thank you for your reply @RubyRo! This is such a scary experience. I am going to follow your advice and stabilize on the dose I am currently on 30mg and see what happens. Right now the anxiety seems to have gone down a bit but was replaced by awful feeling of depression and hopelessness. It feels like my mind is not my own and I will never be the same again. I almost feel like it’s a trauma response to everything I have been through in the last few months. Did you feel depressed at points too? I am really struggling with the fear that it won’t get better. 
 

I am so glad to hear that the taper is working for you. It gives me hope and makes me feel like I am not alone. 

[RubyRo]

@Displaced1021yes absolutely - I felt hopelessness and sometimes an overwhelming sense of doom. Truly horrible. I also felt like my mind wasn’t my own - and that my body had betrayed me and wasn’t mine anymore either. I had some birth trauma, and I think post-partum anxiety, depression and some PTSD from that. The withdrawal made it all worse. I was so scared I was going to be like that forever.

 

The good news is that I felt MUCH better after 6 weeks at 30 mg, and I feel pretty normal and OK now, 8 months later at 5.5mg. I have confidence that you’ll feel better too.

[Displaced1021]

Thank you @RubyRo it is so good to hear that it does get better. I am praying every day. Right now I also have awful brain fog, like it’s hard to think and I’m much slower than I normally am. I’m trying to figure out how to divide the rest of the pills evenly. I’m thinking to take them to a compound pharmacy and convert it into liquid drops so that it is easier to take less over time. Hopefully that can be done. Really hoping how I feel improves with the 6 weeks. I just need to give it time. It’s amazing that you’re at 5.5mg now. Looks like there is an end in sight!!

[RubyRo]

@Displaced1021 I think a compound pharmacy could create a liquid suspension, that's a great idea. Depending on where you live, you might also be able to get a prescription for a pre-made liquid suspension. Where I live the only option is the 10mg pills, and I use a pill-spliiter and microgram scale to taper. I'm going to create my own liquid suspension at some point when the dose gets smaller, but right now the microgram scale is working.

 

I hear you about the brain fog. It gets better once the withdrawal eases up.