FightingChance: Weaning from Domperidone/Motilium

[FightingChance]

I am in need of help. I quit Domperidone Cold Turkey after being on 120mg for 3 months (4pills 3times per day). I experienced severe withdrawal symptoms a few days later but stayed off the pills for a week and a half. During that time my Dr wanted me to stay off the Dom & try starting Lexapro but I read Lexapro takes awhile to work so I decided to start taking the Dom again to re-wean off of it. I played with doses for a week or so & went back on at 3x2x3 to then drop 1 10mg pill per week from there. I’m experiencing all hormonal & anxiety symptoms. It’s as if I went through menopause when I quit the pills Cold turkey and I’m only 28 & 9months postpartum since I used this drug to increase breastmilk. I don’t know what to do. I don’t want to be on the pills anymore b/c I want to be done producing breastmilk but while I’m still taking them I still lactate. My brain hurts & I don’t know what damage I’ve done to my reproductive system as I wanted more children in the future. No Drs can help b/c this drug isn’t sold legally here in the US I got it from Canada. Please help. I want off so badly. 

[Kiasofia]

Hi @FightingChance

Welcome to the forum! I'm not familiar with Domperidone, but I can offer some basic tapering advice and there are others here who can offer more advice.

 

You will be able to find a lot of bad experiences with lexapro on this forum and many who wish they had never touched a psychiatric drug. Me being one of them! So I hope you continue to turn down your doctors suggestion to try lexapro or any other psychiatric drug. There is no known cure for withdrawal, except reinstating the drug and slowly tapering off once stabilized. Your decision to restart Domperioden, and not take lexapro, is therefore very wise. Here is some information about tapering:

 

Why taper by 10% of my dosage?

NEVER SKIP DOSES TO TAPER

 

You may need to slowly increase the dose you are on now to a level that makes the withdrawal milder. Hold there for a while. And then slowly reduce. Read more here:

About reinstating and stabilizing to reduce withdrawal symptoms

 

And HERE is another members thread where advice on Domperidone is offered.

 

I hope some of the links can be of help to you! Please stay in touch and let us know how you are doing.

[ChessieCat]

  

11 minutes ago, FightingChance said:

Yes! I’m in that group! It all stems from the suggestions of Dr. Jack Newman in Canada. He’s supposedly the breastfeeding & Domperidone guru & says taking anything less than 3x3 for breastfeeding reasons is a waste of time. That’s how I got my Dom, through a virtual consult w/ his clinic & shipped from Canada. I started on 3x3 & went up to 4x3 for 3mths! He acts like it’s no big deal but it’s a horribly powerful drug & my brain, body, & hormones are terribly messed up from it. I would have done anything to up my supply too & had tried all the things…. I did not need that much Domperidone though. I’m ashamed & so regretful. Idk what ive done to myself or what long term damage there will be now or if I’ll ever be able to get off of them? 

 

Please don't feel ashamed and regretful.  It is unfortunate that this has happened, yes, but it is important to understand that we make a decision based on the information that we have at the time.  And this happens with everybody for a wide variety of things throughout our lives.  We are so much wiser with hindsight.

 

Continuing to feel shame and regret is not going to change what happened and only adds stress.

 

Whenever you feel like this change from negative to positive self talk and say to yourself, I wanted to do the best for my baby.  I realise that it will not change what you are going through caused by the drug, but I think it will make you feel more hopeful.  When we feel hopeless we just want to give up trying.

[FightingChance]

Domperidone/Motilium Withdraw

 

I’ve posted before but I’ve learned so much since then I’m hoping to obtain different views/advice.

 

I started 90mg of Domperidone at 5mths postpartum to increase breastmilk production. This drug is illegal in US & I got it prescribed from a breastfeeding Dr in Canada (dumb, I know. First time mom who was panicking her son wouldn’t eat)…

 

I eventually increased my dose to 120mg & was on for 3mths. I was given instructions to wean 1 pill (10mg) per week when wanting to come off… well, I weaned properly for 2 weeks & just decided to go CT bc I wanted to be done breastfeeding & thought I could handle it…. Boy, was I WRONG. 2 days went by & I had a sudden drop in hormones. My eyes went bone dry, mouth dry, skin dry, nails thin, hair thin & falling out. The most extreme anxiety, depression, & insomnia I’ve ever experienced. Could not take care of my son or sleep. I developed hot flashes & night sweats. Got hormones checked by my OB & estrogen was low. This drug took everything from me.

 

I consulted w/ the Canadian Dr & the Domperidone FB Group who all advised I go back on the drug & wean off. Well, I don’t think I ever started again at a high enough dose & tried re-weaning for a little over a month & nothing ever got better.

 

A lot of mental hospital stays later & I decided w/ my family that I should just stop the drug. BIG mistake again! Another hormone drop, still the worst dry eyes. Now I can’t regulate my body temperature. I cannot sweat, cannot feel emotions, cannot feel hunger or thirst or sleep cues. My eyes are one of the worst things. I cannot stop peeing large amounts of clear liquids despite barely drinking. All female hormones low. WHAT DID THIS DRUG DO TO ME!? Please someone just tell me. I can’t take care of my 10mth old. No previous health history of anything mental or physical. My life is upside down.

 

I have MRI tomorrow & endocrinologist next week to examine for hypothalamus/pituitary damage. I would need replacement hormones for life. I would rather die than live life like this it is worse than I could ever type out on a forum. My nails went from thick & healthy to peeling thin & bleeding OVERNIGHT. My body went into hormone shock when I quit this high dose drug, which by the way, I was on 90x the recommended dose. I was poisoning myself daily. I was ok while on the drug & it did work for my breastfeeding it was just coming off. It’s been a month off & nothing is better. Is this forever? I wanted more children. I can’t stand anymore incompetent Drs appts or more drugs thrown at me.

 

I know no one may know this drug, but here’s what I’ve learned through extensive research… Domperidone/Motilium is a gastric emptying drug w/ the side effect of increasing prolactin for increased breastmilk production. It blocks Dopamine D2 receptors at the hypothalamus to increase prolactin secretion from the pituitary. It functions like an antipsychotic by blocking dopamine in the brain. By my starting & stopping at such high doses I’m thinking I damaged the hypothalamus and/or swelled the pituitary to cause damage since they’re such small, sensitive glands. How do I live with myself knowing I caused this damage on myself for the rest of my life? My brain doesn’t work now. I was a happy, healthy, functioning 28yr old new mom with my life ahead of me before this. If you’ve read this far thank you. What do I do please? Will my body regulate? Or is there permanent damage?

 

 

Edited December 11, 2021 by ChessieCat
added topic title before merging with intro topic and added spacing

[Kiasofia]

I'm so sorry you are going through this❤️ My advice last time was to consider increasing your dose to stabilize. If you have quit and gotten much worse, then reinstatement and doing a slow taper is worth considering. It is advised to start at a very low dose and slowly increase.

About reinstating and stabilizing to reduce withdrawal symptoms

 

Please discuss reinstatement with us first, before trying, if this is something you want to consider.

 

And listen to what ChessieCat said:

 

On 11/7/2021 at 11:39 PM, ChessieCat said:

Please don't feel ashamed and regretful.  It is unfortunate that this has happened, yes, but it is important to understand that we make a decision based on the information that we have at the time.  And this happens with everybody for a wide variety of things throughout our lives.  We are so much wiser with hindsight.

 

Continuing to feel shame and regret is not going to change what happened and only adds stress.

 

Whenever you feel like this change from negative to positive self talk and say to yourself, I wanted to do the best for my baby.  I realise that it will not change what you are going through caused by the drug, but I think it will make you feel more hopeful.  When we feel hopeless we just want to give up trying.

  

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

 

 

Here are some techniques to cope with symptoms: 

Acknowledge, Accept, Float

Non Drug Ways to Cope with Withdrawal Symptoms

Non-drug techniques for dealing with body pain

Edited December 11, 2021 by Kiasofia

[Altostrata]

Hello, @FightingChance This is a site for going off psychiatric drugs. Domperidone is on the borderline of such drugs.

 

What we've learned is that reinstatement of the drug at a low dose most likely will help your nervous system stabilize from withdrawal symptoms. Quite often, the stabilization process takes months.

 

I am sorry you have gone through the mill with psychiatric hospitalization to deal with withdrawal symptoms from domperidone. We are well aware how grueling these symptoms are, and some of them may seem like psychiatric symptoms, but withdrawal syndrome from a psychotropic drug is not the same as a psychiatric disorder and should not be treated as one.

 

The solution would have been simple had you reinstated and informed us of how the reinstatement was affecting you. If it had helped, we probably would have advised you to hold on for some months and let your system stabilize, then slowly taper off. Most likely, you tapered too fast after your reinstatement and reawakened your withdrawal symptoms.

 

Were you treated with any drugs while you were getting psychiatric treatment? If so, what were they, what were the dosages, and how long did you take each one? Exactly what drugs are you taking now, at what times o'clock and dosages?

 

 

[FightingChance]

@AltostrataThank you. From my research Domperidone functions similarly to drugs like haloperidol just by blocking those D2 receptors. I was on 120mg for 3mths straight. Went off cold turkey for 9 days. Was experiencing horrible hormonal & mental symptoms. Restarted at a lower dose of 80mg for a week & tried to drop from there. I never felt better. Just constantly anxious & so came the ER & psychiatric trips. After about a month back on I decided I couldn’t take it & went off again. In that time I’ve been prescribed Lexapro 5mg which I only took for a week & HATED so I stopped. Also, Hydroxyzine for anxiety & Valium. I am not sure on doses. I know I took the Valium as needed at 1/2 pill - 1 pill at a time once in awhile but that stopped helping. Then, Hydroxyzine I usually take 2 pills before bed to help sleep. & they do help. I’m currently on my 25mcg of Synthroid daily & those 2 Hydroxyzine as needed for sleep. 

[Displaced1021]

Hi, 

 

How are you feeling? I am currently experiencing the same symptoms you have described and it’s terrifying. I am still on 20mg of domperidone and scared to come down any further. 

[FightingChance]

DON’T stop them. Just keep weaning & go as slow as you need your body will adjust & you’ll finally get off & just let it work out of your system. You will be uncomfortable for a few weeks & then should go back to normal. I am not normal. I quit cold Turkey twice from a high dose and now lost hypothalamus function. I believe it crossed the BBB in me

[Altostrata]

22 hours ago, FightingChance said:

now lost hypothalamus function

 

Please explain!

[Displaced1021]

@FightingChance I’m so sorry this happened to you. You were just trying to feed your baby and couldn’t have known. I really hope you get some of the function back. I am terrified of what this medication did to my body and will still do as I continue the taper. This has been such a surreal experience. 

[FightingChance]

2 hours ago, Altostrata said:

 

Please explain!

Any & everything the hypothalamus is supposed to do, mine is not doing 

[FightingChance]

2 hours ago, Displaced1021 said:

@FightingChance I’m so sorry this happened to you. You were just trying to feed your baby and couldn’t have known. I really hope you get some of the function back. I am terrified of what this medication did to my body and will still do as I continue the taper. This has been such a surreal experience. 

I’m sorry for you too. Yes such a surreal experience. I actually feel like this is going to kill me its scary

[Altostrata]

I'm sorry this has happened to you. Hang in there, the body has an amazing ability to self-correct, but it can be slow.

[FightingChance]

2 minutes ago, Altostrata said:

I'm sorry this has happened to you. Hang in there, the body has an amazing ability to self-correct, but it can be slow.

Thank you. Really hoping & praying as there’s no “hypothalamus doctors” out there

[Displaced1021]

It really feels like trauma. Wishing you emotional healing from all of this down the road.

[FightingChance]

23 minutes ago, Displaced1021 said:

It really feels like trauma. Wishing you emotional healing from all of this down the road.

So much traumas & PTSD from this experience. Thank you