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RubyRo: withdrawal from domperidone / Motilium


RubyRo

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I am relieved to have found some people who will understand what I am going through 🙂

 

I started taking domperidone (30 mgs daily) in November 2019 for milk supply. It worked wonderfully, and I’ve now been on it continually for nearly 12 months. In late September, I decided to start tapering the domperidone as part of weaning my baby. I tapered because I wanted a tapered reduction in my milk supply - I didn’t know that there could be withdrawal from the drug. Neither my OB nor my regular general medical practitioner warned me about the dangers of dom. I reduced to 20 mgs per day, and then 10 mgs per day a week later (October 2nd).

 

By October 3, my withdrawal symptoms were in full swing. I had painful neck spasms, eye and facial twitching (especially on the left), panic attacks, trembling, dry eyes and mouth, insomnia, and nausea (sounds pretty similar to other dom affected members on here - @A123, @hankhzs,  @socalchk19 ). I went to the ER on October the 4th. CT, MRI, and basic blood tests were all clear.

 

After 3 days in hospital thinking I was going to die, I eventually diagnosed myself with drug withdrawal, with the help of Dr Google. The neurologist I saw on the 4th day said I should go back on the full dose of dom for a month, and then taper very gradually. I was discharged with a referral to see him again in mid November.


I’ve had a few reasonably good days since then (it’s 18 days since I started back on the dom at full dose). However, I’m still having waves of the symptoms. It’s pretty debilitating - and I have a demanding job and 12 month old baby to look after 😞

 

Does anyone have any initial advice for me? Is it common to have withdrawal symptoms even after going back on full-dose? Is it realistic to hope that I’ll be symptom-free at some stage in the future? What would a good taper look like for dom? Does the 10% rule apply?

many thanks 🙂

 

——

Nov 15th, 2019: started Domperidone 30mg daily for milk supply

Sept 26th, 2020: started tapering Domperidone - down to 20 mg per day

Oct 2nd, 2020: Domperidone down to 10 mg per day

October 4th 2020: hospitalized with withdrawal

October 5th 2020: back to 30 mgs per day Domperidone

 

Edited by ChessieCat
fixed up @ for socalchk

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • ChessieCat changed the title to RubyRo: withdrawal from domperidone / Motilium
  • Moderator Emeritus

Hi RubyRo and welcome to SA,

 

Thank you for completing your drug signature.

 

Are you taking any other drugs and/or supplements?  Or have you recently stopped/started any?  If yes, please add those to your drug signature so we have a complete drug history.  Thank you.

 

Have the doctors suggested that you start a new drug for the withdrawals?  If yes, what have they suggested?

 

Also note that the drug is also marketed as Motilium so you could search for that too.

 

I did an internet search and found:

 

Domperidone withdrawal in a breastfeeding woman https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3734912/

 

https://houndmamas.wordpress.com/2016/10/05/weaning-off-of-domperidone/

 

https://www.breastfeedingbasics.com/laid-back-lactivist/my-domperidone-experience

 

 

From searching the internet for "domperidone withdrawal" there are other women who have experienced withdrawal. 

You might be able to find an online support group/forum with members who have tapered this drug to find out how they managed it.  Different people use different terms, eg withdraw, taper, wean, reduce.

 

I did also find this, however if you reduce by their method and get withdrawal symptoms then you need to go slower:

 

https://www.canadianbreastfeedingfoundation.org/induced/stopping_domperidone.shtml

 

You might find Post #1 of this topic helpful:  About reinstating and stabilizing to reduce withdrawal symptoms

 

You could also post in the members' Introduction topics, or send them a PM, of the ones who have taken the same drug.

 

Edited by ChessieCat

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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  • Moderator Emeritus

And something that you should be aware of:

 

NEVER SKIP DOSES TO TAPER 

 

Also, it looks like this drug might have a short half life so you need to be aware of interdose withdrawal.  If that happens you might need to split your dose and take it 2 or 3 times a day.

 

Here are a couple more links:

 

Why taper by 10% of my dosage?

 

Dr Joseph Glenmullen's WD Symptoms Checklist

 

And you might find something helpful here; there are links to sub topics in Post #1:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

Edited by ChessieCat

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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Thanks for the edit @ChessieCat 🙂

Edited by ChessieCat
removed quote

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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Thank you so much @ChessieCat for these suggestions and links. I’ve done a lot of googling, but you managed to find a few I hadn’t seen.
 

I am not on any other medication, which possibly makes things easier... I was given a couple of 5mg tabs of Valium on different days in hospital to help with with panic attacks, but it didn’t do much.

 

 No doctor has yet prescribed or suggested anything for withdrawals, apart from diazepam (Valium), which I’d rather avoid if I can. Thanks again 🙂

 

Nov 15th, 2019: started Domperidone 30mg daily for milk supply

Sept 26th, 2020: started tapering Domperidone - down to 20 mg per day

Oct 2nd, 2020: Domperidone down to 10 mg per day

October 4th 2020: hospitalized with withdrawal

October 5th 2020: back to 30 mgs per day Domperidone

 

 

Edited by ChessieCat
removed quote

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • Moderator Emeritus
20 hours ago, ChessieCat said:

Thank you for completing your drug signature.

 

I thought this information was in your drug signature but you are including it at the bottom of your posts. 

 

Nov 15th, 2019: started Domperidone 30mg daily for milk supply

Sept 26th, 2020: started tapering Domperidone - down to 20 mg per day

Oct 2nd, 2020: Domperidone down to 10 mg per day

October 4th 2020: hospitalized with withdrawal

October 5th 2020: back to 30 mgs per day Domperidone

 

So that you don't have to repeat this each time please copy and paste it here and remember to Save.

 

Account Settings – Create or Edit a signature

 

You might find this helpful:

 

how-to-cut-up-tablets-or-pills-using-a-pill-cutter

 

You could try putting a tablet in water and seeing if it dissolves fully.  You can also cut tablets horizontally, like you slice a cake across to add a layer of filling.

 

I've just done a search and in some places it is possible to get a liquid version of the drug.

 

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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  • 1 month later...

Hey! How are you now? Struggling here

9/11/20 - Started taking Domperidone 10mg/3x

11/12/20 - Switched to Reglan (CT from dom)

11/14/20 - experienced WD symptoms (vertigo, anxiety, insomnia, nausea)

11/23/20 - got back on dom 

12/3/20 - quit dom CT

12/5/20 - experienced WD but much stronger (GI upset, tingling, panic attacks, twitching, brain fog, insomnia,

depression, eye pain, nausea, gastritis, fatigue, etc)

12/9/20 - got back on full dose of dom

12/13/20 - quit domperidone CT

 

 

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I’m doing OK now, thanks. It took me 3 weeks to stop having withdrawal symptoms after going back on my full dose of domperidone.
 

Since then I have been working with a neurologist and tapering as fast as We think I can handle, as I am also getting worsening side effects (muscle twitching, mostly on one side of my face, scalp and ear, but also in other areas of my body). I have been halving my 8-hourly doses progressively - so for 2 weeks I took 10mg 5mg 10mg, then for 2 weeks 10mg 5mg 5mg, and now 5mg 5mg 5mg. I’ve had no further withdrawal symptoms so far.

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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Thank you! I’ve read a bunch of

topics around here, isn’t it dangerous to restart a high dose? Like, I’ve read that you can create a certain toleration to the drug. I’m trying it again after almost 2 weeks, is it ok?

9/11/20 - Started taking Domperidone 10mg/3x

11/12/20 - Switched to Reglan (CT from dom)

11/14/20 - experienced WD symptoms (vertigo, anxiety, insomnia, nausea)

11/23/20 - got back on dom 

12/3/20 - quit dom CT

12/5/20 - experienced WD but much stronger (GI upset, tingling, panic attacks, twitching, brain fog, insomnia,

depression, eye pain, nausea, gastritis, fatigue, etc)

12/9/20 - got back on full dose of dom

12/13/20 - quit domperidone CT

 

 

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  • 2 months later...

I tapered too fast. I think. The tapering regime I shared doesn’t work for me. I reached 7.5mg and had horrible withdrawals again. I am now sitting on 15mg per day and am trying to stabilise before I do anything else. I am also waiting for an appointment with a clinical pharmacologist.
 

Current symptoms: I am twitchy, have sore and dry eyes, restless legs and have bad nerve pain under my left ear. The anxiety comes and goes. I haven’t had a panic attack since last week, which is a very good thing. Nausea comes and goes.

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • 1 month later...

Further update:

I am not sure what happened, but 8 days ago I went into what I think is full withdrawal again, even though I’m holding at the same dose (15 mg) and have been for two months now. For the last 8 days I’ve had horrendous head and neck pain, nausea, and anxiety. I haven’t really been able to function, and went to the emergency room twice. I am assuming this is withdrawal and not something else terribly wrong.

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • Moderator Emeritus
ChessieCat

Please update your drug signature.

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Link to post

Done, thanks @ChessieCat

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • 4 weeks later...
RubyRo

It’s a month since my last update and I thought I’d share where I’m at. I’m still holding at 15 mg. I am still experiencing strong withdrawal symptoms daily - the big ones are painful muscle tension in my head, neck and down my back, headaches, severe waves of anxiety, parasthesia, akathisia and indigestion / reflux with globus sensation. The symptoms get worse in the afternoon and early evening and then get slightly better overnight. Some days are worse than others, and the very bad days seem to happen after I encounter some kind of stress.

 

The other thing I identified is that this latest exacerbation of symptoms happened after my first dose of the Covid vaccine. My doctor has a theory (no one knows for sure of course) that the vaccine or my reaction to it altered my body’s uptake or absorption of Domperidone for some period of time, even though I was taking the same dose every day as I had been. Maybe now I’m sensitised and kindling is going on... maybe not. I figure I’ll keep on going at this dose until something improves. 

 

So this has officially been a ‘wave’ for just over a month now. I’m wondering if my body would like to show me what a ‘window’ looks like??? 🙂 I am over being in constant pain. I downloaded an app for managing chronic pain and have been doing the meditations, brain training and reading. It’s early days but might be helping slightly?

 

I want to start my 10% tapering regime, but will wait until I stabilise. I hope I stabilise. This is really rough.

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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  • 4 weeks later...
RubyRo

A further update - I stabilised at 6 weeks after my COVID vaccine, with minimal withdrawal symptoms at that point. I have now started my tapering regime, and have reduced my dom by 10% each day across my three doses - 13.5 mg in total.

Nov 15, 2019: started Domperidone 30mg daily for milk supply, Sept 2, 2020: started tapering to wean my baby - 20 mg/day, Oct 2: 10 mg/day, Oct 4: hospitalized with withdrawal, Oct 5: reinstated 30 mgs/day, Nov 28: new tapering regime from neurologist - down to 20mg / day, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big withdrawal, Feb 15: up to 15 mg - still big wd, Mar 17: hold 15 mg - feeling ok, Apr 13: hold 15 mg - big wd to 28/5, then window. Now tapering - 13.5mg / day

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Strugglingmama

@RubyRo

 

i just read your story. Omg. I took domperidone (30-50mg) for about 4 months. I started tapering and got insanely anxious which I was then started on sertraline. I didn’t connect the dots. I asked my doctor at the time and she said unlikely so I just assumed I had gone crazy myself. No prior psych history. 


Hugs to you. Hope you are doing ok. 

Domperidone 50mg Feb to june 2020 (weaned off over 5 weeks) 

sertraline 25-100mg June 2020-august 2020 (weaned over 4 week)

Notriptyline 10mg/sertraline 25-50mg Nov 2020-dec 2020

nortriptyline 10mg Jan 2021-May 2021 

escitalopram 5mg may 2021 for 6 days then stopped 

No meds: as of May 26, 2021 

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