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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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

Please DO NOT TAG me - thank you

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

  MISSION ACCOMPLISHED:    (6 year taper)      0mg Pristiq      on 13th November 2021

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 from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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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

Please DO NOT TAG me - thank you

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

  MISSION ACCOMPLISHED:    (6 year taper)      0mg Pristiq      on 13th November 2021

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 from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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.

 

 

Please DO NOT TAG me - thank you

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

  MISSION ACCOMPLISHED:    (6 year taper)      0mg Pristiq      on 13th November 2021

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 from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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Please update your drug signature.

Please DO NOT TAG me - thank you

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

  MISSION ACCOMPLISHED:    (6 year taper)      0mg Pristiq      on 13th November 2021

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 from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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  • 4 weeks later...

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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  • 4 weeks later...

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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@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 

Sept 1,2021- reinstated sertraline 6.25mg

Jan 10, 2022- sertraline 5 mg , feb 9, 2022- sertraline 4.5mg, Feb 22, 2022- Sertraline 4.3mg, March 7, 2022- Sertraline 3.8mg, April 16,2022- Sertraline 3mg , May 6, 2022- Sertraline 2mg,  May 31,- off Sertraline 

 

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  • 1 month later...
On 6/11/2021 at 12:11 PM, Strugglingmama said:

@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. 

Thanks for commenting @StrugglingmamaX yes I think dom withdrawal affects quite a few of us but it’s not really recognised by the medical profession. I am doing ok at the moment - have started my 10% taper. I have waves of symptoms but they’re manageable right now.

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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  • 1 month later...

I’m now down to 10.5mg daily, and have been holding for 2.5 weeks. During the fortnight I’ve been a bit ‘withdrawaly’ (mostly muscle tension in my neck and shoulders, headaches, left eye twitching and akathisia in my feet) but it’s been manageable. 
 

I split my daily 10.5mg into 3 doses of 3.5mg. Domperidone isn’t soluble in water, and in the country where I live it isn’t possible to buy a liquid suspension. I’ve been using a milligram scale and a pill splitter to make the doses. I put each dose into an empty capsule ready to take at the allotted times each day. I make up a week’s worth of capsules at a time.
 

It’s a challenge. The pills are very small, my milligram scale isn’t quite accurate enough, and getting the doses right is going to get harder as I taper further. 

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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  • 1 month later...

Hi RubyRo.  I wanted to get an update on how you were doing.  I was on Domperidone and did a one month withdrawl in May 2021.  Within the month of June I started having severe anxiety, tremors and insomnia.  By July I was having panic attacks.  I am wondering if it was the Domperidone even though I did a month withdrawal.  It was on 3x 10mg/day for months, then was at 2x 10mg/day.  The withdrawal was 20mg/day for 2 weeks and then 10mg/day for 2 weeks.  Any thoughts this is from the Domperidone and should I reinstate back up to the 30 mg/day and do a slower withdrawal but am terrified to go back on as it has been since May.  I guess I have no other option.  Looking for any suggestions as none of the dr's understand or will comment on this medication.  Thank you.

Domperidone: 

Sept 28-Dec 14=30mgs a day; Dec 14-Jan 1 = 20mgs a day; Jan 1 - feb 16 = 10mgs a day; stopped(Jan started vertigo/rocking sensation and Feb started tachycardia)

April 19 - May 8 = 20mgs a day; May 9 - May 30 = 10mgs a day

stopped - severe withdrawal: anxiety; panic attacks; tremors; twitching; tachycardia; insomnia; blurry vision.  

Sept 17 - Oct 8th = 10mgs a day - no change in symptoms, didn't want to go back up more; Oct 9 - 17th = 5mg/day

December 12th = reinstated 25mg a day

==

celexa - June 10 - June 12th 2021

lexapro - July 22 - July 31st 2021

clonazepam - July 14 - September 30 - .5mg 3x/day; weaned and transferred to valium and then off.  

valium - intermittently used for sleep Sept 2020 - Feb 2021; used now during day PRN.

prozac - Sept 24 - January 7th - weaned from 10 mg to 5mg and then off

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Hi there @Tfalkris. I’m so sorry that you’re having those nasty sounding symptoms. Yes, they absolutely sound like withdrawal from the domperidone. The anxiety is horrible, isn’t it? I’d never had a panic attack before, and I thought I was going to die.

 

There is a great article written by altostrata about reinstatement - it’s further up on this thread. In a nutshell, it says that reinstatement may not work, and it may actually make it worse. I think that the safest course, if you’re having bad withdrawal symptoms and want to try reinstatement, is to reinstate at a very low dose. You might have become sensitized to the drug and to go right back on it could have even worse effects. If you take a low dose and feel a bit better right away, that’s a good sign. Then hold that level for a couple of months before tapering down.

 

I have read some more about tapering, and I am going to try making a liquid suspension as I get to smaller doses. I’m now on 9.5 mg per day split across three doses, and it’s hard with the pill splitter (but my withdrawal hasn’t been too bad now that I’m doing a gentle taper, which is awesome!)

 

Let me know how you go. I’m thinking of you.

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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Here is my latest tapering update. This  morning I tapered down to 8.5mg / day, across 3 doses of 2.83mg. I am still splitting pills, but as previously shared will try making a suspension when i have acquired the materials.

 

I am still having some manageable withdrawal symptoms - particularly headaches and muscle pain. I’ve had some minor episodes of anxiety. I still have daily blepharospasm, and maybe Ii’m stuck with this?? 
 

One weird sign I have with withdrawal is eyebags, related to sinus congestion. When feeling ‘withdrawly’ I look baggy and exhausted.
 

The other thing I’ve noticed is finger twitching / tremor, which looks like it could be a Parkinson’s-like thing. It only happens periodically to my ring fingers or thumbs. My sense of smell isn’t affected, so I reckon it is drug induced rather than true Parkinson’s. All I can do is keep tapering slowly…

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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  • 4 weeks later...

@RubyRoHow is it going? Very interested in your story & following your updates as I am currently re-weaning from Dom after a CT stop. A more specific question is about your dry eyes you experienced… I can’t find anyone in the Dom FB Groups who experienced that. Mine became so, so dry & sore upon stopping Dom CT. Did yours get better? Mine feel like a scratchy, dehydrated dryness. Like, when I used to yawn & my eyes would water, they don’t anymore & always look dry w/ red lines through them. Also experiencing night sweats & hot flashes. Really feel like I’m going through menopause at 28 years old just from being on & off this drug 

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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Hello there @FightingChanceand thanks for reaching out. I’m so sorry you’re going through this - we were trying to do the best for our babies and it ended up being a bit of a nightmare. 
 

Yes I had the scratchy red dry eye thing when I was in acute withdrawal - along with a feeling of pressure behind my eyes. As I understand it, there are dopamine receptors everywhere in the body, and withdrawal can affect our eyes significantly. 

 

My withdrawal is always worse in the afternoon and early evening, including my eye symptoms. I remember applying eye drops and ointment liberally bit it didn’t do much good. I also experienced hot flashes and sweats. I remember saying to my husband a few times, ‘is it really really hot in here?’ and he’d say ‘no…..’
 

I don’t have eye problems now, thank goodness. As I slowly taper with a step down each month, I have some worse symptoms for a couple of weeks followed by a couple of weeks of feeling somewhat normal. I feel hopeful that I’ll get through this.

 

How slowly are you tapering? Has your doctor been any help? I have a supportive (but not very knowledgeable) neurologist. 

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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It has been a complete nightmare. My husband begged me not to take it but I had a bottle refusing baby I was home with all day & was trying everything I could to keep him nursing. It caused a severe oversupply for me & I ended up pumping anyways. It was all a regretful mess… my eyes are my #1 complaint. I went to an eye Dr who said it looked like my corneas were scraped w/ sandpaper. To me, it felt like my estrogen dropped significantly which I’ve since found is directly connected to dopamine & didn’t know before. I’m glad your eyes got better. I’m still really struggling. No Dr knows what to do or about the drug & all Drs just keep sending me to other Drs. Weaning isn’t really helping & to be honest I’m not willing to go slower bc my hormones feel so messed up I’m scared to keep prolonging it. Idk if I should quit cold turkey again or what?  

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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Wow @FightingChancethats a high dose you’re coming from - am I reading right that at the peak you were on 120mg / day??? And the effects you’re having sound truly unbearable. I’m so sorry.

 

I know the desperation of needing to feed your baby, too, and being willing to try anything.
 

Unfortunately I have found doctors tend not to be very helpful when it comes to this stuff. At worst they say withdrawal isn’t happening, or that the symptoms are because of something else… others don’t take it seriously. One dr laughed when I told him. My friendly neurologist is honest and says things like, ‘well I don’t know’ - he is supportive though, and understands what I’m going through. Medical training doesn’t cover the very real side effect and withdrawal issues we face.

 

Having read some of the patient wisdom from sites like this one, and reflecting on my own experience — it sounds as though your body is in massive shock from the medication changes. I have needed to go very slowly, even though I had side effects from dom and really wanted to stop cold turkey. I tried weaning 1 pill per week and ended up in hospital last year.

 

My suggestion (only a suggestion - another thing I have learned is that we are all different and our bodies need different things) is: if you’re not having the scary heart effects from dom (QT interval prolongation - that would mean you have to quit CT now because your heart is in serious trouble), see if you can stabilise on a dose where you feel slightly better (balancing side effects with withdrawal - what joy). Stay on that for a month at least. For me it took 6 weeks on 0.5x0.5x0.5 / day before I stabilised and didn’t feel like I was going to die.
 

Then I suggest tapering very slowly. On this site they recommend 10% of the previous dose each month. A study published earlier this year about coming off antipsychotics - which dom is related to - suggests something similar. They call it hyperbolic tapering.
 

The reason I’m making this suggestion is that I know of some patients who have gone CT and are still in bad withdrawal a couple of years later.

 

Anyhow, I’m here for you whatever you decide to do. I know how hellish this is. 

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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Thank you. I’m in ER now where they’re admitting me to inpatient. They’re suggesting a fast taper & want me off this stuff due to heart effects & the interactions w/ other drugs they’re trying to give. Idk what to do or what to fight for anymore… I thought I stabilized at 3x2x3 & was dropping a pill a week from there & got down to 2x2x2 now but have been always anxious. I just want off this stuff & want my life back. 

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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10 hours ago, FightingChance said:

Thank you. I’m in ER now where they’re admitting me to inpatient. They’re suggesting a fast taper & want me off this stuff due to heart effects & the interactions w/ other drugs they’re trying to give. Idk what to do or what to fight for anymore… I thought I stabilized at 3x2x3 & was dropping a pill a week from there & got down to 2x2x2 now but have been always anxious. I just want off this stuff & want my life back. 

Oh @FightingChance 😞 this is such an awful situation for you - it must have been really bad for you to have to go to the ER.  If they are worried about your heart then getting off it quickly is necessary.
 

While I was an inpatient, valium helped slightly with the panic attacks. They also talked about prescribing an anticholinergic and potentially an antipsychotic as a cross-taper, but didn’t in the end.

 

I want to encourage you to have hope. You will get through this. It will take time, and the pain and anxiety will be bad in the meantime. But the human body has an amazing ability to heal and it will adjust.

 

all my best - pm me if you need. X

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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Thank you, I pm’ed you. I ended up staying on to keep tapering as one doc in hospital recommended. I was on 2x2x2 & now will drop 1/2 pills every 4 days to 1 week I think? Idk what else to do here I want off so badly 

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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My absolute best @FightingChance- let me know how you go…

 

I am OK on 7.5 mg per day and will do another small taper down at the beginning of December. I am pretty stable at this point… it’s going to take me a while, but I’ll get there!

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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The other day I joined a social media group for mothers who are, or want to, take dom for breastfeeding. I joined because I was curious… there were 12.5k members in this group!!! And most were women in the US getting dom from overseas sources without a prescription. Many were taking very high doses - and there were many posts every day asking about when to take it, how much to take, acquiring it, side effects, and tapering.

 

I’m not judging these women - when I had trouble feeding my baby I would have done anything to help my milk supply (and I took all the herbs and tried all the other techniques, and pumped up to 6 times per day). And obviously having medical supervision didn’t help me much with my withdrawal situation.

 

But I’m scared for those women, who are going into a long-term relationship with a really powerful D2/D3 antagonist. Even if it doesn’t get into your brain much - and for some of us it does - it affects hormones and receptors throughout the body, including in the heart. Most seem to be ok on it - and yet there are clearly quite a few of us who are horribly messed up by it.

 

The group did contain information from an official source about weaning (drop a pill, wait 4-5 days and drop another), an approach that did not work for me in the slightest.

 

I am going to leave the group now. Part of me wanted to make a comment on posts warning them of the dangers, but I don’t think it would have landed well…

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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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? 

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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12 hours 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? 

@FightingChance you’ll get off them!! And your body will heal. You were acting on the best information you had at the time to do the best for your baby.
 

Some of the anxiety you’re feeling now is likely to be the withdrawal. I remember calling my mother and saying, ‘am I going to die? Am I going to be like this forever? What if I can’t get off this damn drug? What if I can’t look after my baby?’ I feel much better now. MUCH.

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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That’s exactly how I feel & exactly what I ask my mom everyday!!! It feels like I’ll be stuck like this forever. It is SO promising that you’re feeling better now. I need to keep that as my driving motivation. I pray I heal. Dropping 1/2 pills now every 3-4 days instead bc dropping a whole per week was too much. Fingers crossed. The day I’m off I’ll celebrate 

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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  • 1 month later...

Latest update: I’m down to 6.5mg per day, split into 3 even doses. I’ve been on this dose for just over two weeks and am doing OK. I do have some headaches and back-aches, muscle twitches and restless legs. These things are worse because I’m extra tired right now, but they’re bearable. The withdrawal-based anxiety is also pretty manageable.
 

One win: I went to get my repeat Domperidone prescription filled, and the oharmacist gave me 4 boxes of 25 10mg tablets. This used to last me about a month, when I was on 30mgs per day.


I did a calculation, and I think I’ll only need half of those pills to do the entire rest of my tapering journey!!!

 

I have already come so far - I’m down to less than 20% of my original dose. I just need to keep going. I’m healing.

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 full dose, Nov 28: new tapering regime from neurologist - down to 20mg, Dec 10: 15 mg, Dec 24: 10 mg, Jan 11: 7.5mg - big wd, Feb 15: up to 15 mg - still big wd, Mar 17: hold & feeling ok, Apr 13: hold 15 mg - big wd to 28/5. 4/6 taper to 13.5mg / day, 12/7 12mg, 11/8 10.5mg 6/9 9.5mg, 6/10 8.5mg, 3/11 7.5mg 24/11 6.5mg 24/12 6mg 7/1 5.5mg. 22/1 5mg. 7/2 4.5mg 19/2 4mg 6/3 3.5mg 19/3 3mg 3/4 2.5mg 17/4 2mg. 8/5 1.75mg 15/5 1.5mg 19/5 1.25mg  23/5 1mg 31/5 0.75mg 12/6 0.5mg 28/6 0.25mg per day 28/7 0 per day. Free from Domperidone at last!!!

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This is so good to hear, you are doing it! I had quit CT again when trying to wean last time & it has been about 3.5wks off & I’m doing terrible. It’s not so much the anxiety as the extreme physical & hormonal symptoms. All my female sex hormones are now low (FSH, LH, Prolactin, Estrogen), my OB thinks there is now a problem w/ my pituitary and/or hypothalamus. I have not had a cycle yet & I’m over 10mths postpartum. My eyes are stil so so dry & nothing my eye dr is doing is helping. Dry skin, hair, nails that are so thin & won’t grow anymore. I cannot sweat. I went from hot flashes & night sweats when first off the Dom to not being able to regulate temperature now. My temp keeps being around 96.2…? another thing is I’m barely eating or drinking yet I continuously pee clear urine & a lot of it. Seems like diabetes insipidus. I believe somewhere along the line with going back on & stopping this med again that I damaged my hypothalamus/pituitary. I have MRI tomorrow & endocrinologist next week. What’s weird too is, the 1st time off CT I had had my hormones checked after 9 days off Dom & they returned normal, even my prolactin was normal at 10.6 & I was still pumping w/ my old Dom milk supply volume. When I went off CT the 2nd time, my milk supply plummeted. Went out overnight & prolactin level came back at 2.6. Lower than my dr has ever seen. I really messed something up. I’m going to have to be on lifetime replacement hormones. I’ll never forgive myself. Not only should I have NEVER have touched this drug but I should have NEVER went back on to try to re-wean off bc my 1st time off bloodwork hormone levels were good! I was going to heal! I let the anxiety & worry get the best of me when I should have given it time! For some reason my body has extreme hormone reaction to Dom.

6/24/21 - Started Domperidone 30mg/3x

7/17/21 - Upped Dom dose to 40mg/3x

9/08/21 - Weaned 1 pill of Dom 4x3x4

9/15/21 - Weaned another pill of Dom 3x3x4

9/18/21 - Started dropping pills quickly erratically 

9/26/21 - Took last dose of Dom (maybe 1 pill) Quit Dom CT

10/01/21 - WD symptoms: dry eyes, dry mouth, dry skin, headache, anxiety, thinned nails, thin hair, dry, bladder urgency, hot flashes, night sweats, panic attacks

10/05/21 - Took 20mg of Dom, felt a little better

10/06/21 - 10/10/21 - Tried 1x1x1 of Dom then 2x2x2

10/07/21 - Ended up back on low dose of Dom consistently 3x2x3. Planning to wean 1 pill per week

11/03/21 - Currently on 2x2x2 following 1 pill/week wean & still experiencing WD symptoms 

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Hi RubyRo. I wanted to share my experience with you in hopes of connecting and maybe you’ll be able to help me with a good weaning schedule from dom. 
 

I went on 90mg to induce lactation in May of 2021. In June, I noticed I was gaining weight so decided to wean off. I’m in the army and can’t afford the extra weight gain. Anyways, I weaned one pill every 4 days and got down to 5 pills. By this time my anxiety was out of control. I couldn’t take care of myself or my family. I had extreme anxiety, terror, shaking, headache, no appetite or wanting to drink, and would pee constantly. Another strange thing is that I had gotten my hair lightened and every time I washed it, it smelled like I permed my hair. And my hair is now completely destroyed. It’s so fried except the outgrowth. Super strange. I saw my GP and they suggested a fast wean every 3-4 days and I tried it for one pill and still continued to decline so I went to the ER. I had an EKG (normal) and I was advised to go to last tolerated dose and wean slowly from there once leveled out. Well I was so out of it that I didn’t know my last tolerated dose. I thought it was 12. So I went to 12 and felt much better and stayed there til the end of August after baby was born and we were all settled in at home. I decided to try to do the recommended 1 pill wean. I dropped the pill and 10 days later (Sep 3) I was experiencing all of the same withdrawal symptoms. Again, recognizing the withdrawal, I went back up to 12 and stated there and started feeling better a few days later. I decided I couldn’t keep breast feeding with all of this going on, so I stopped. A few days later I went back into withdrawal and I believe it was from stopping breast feeding but who knows. Being terrified of the withdrawal, I went up to 15 in order to keep the same dose all day. I felt great on that dose and began to wean 1/4 tab once I finally met with my psychiatrist. He recommended 1/4 pill weekly so I said I’d try it. I felt great after my first wean but after the next two I started withdrawing again. After talking to a few people that understand dom, I decided to increased from 14 1/4 to 14 1/2 pill. I am currently feeling good some days and anxiety other days. I’m not sure if I should increase one more 1/4 to where I know I felt ok or just wait this out. Any advice is much appreciated 

Domperidone/Vesperidone 
May 2021-90mg

July 2: 120 mg

Aug 25: 110 mg (withdrawal after 10 days)

Sep 4: 120 mg 

Sep 15: 150 mg (withdrawal at 120 so increased)

Nov 4: 147.5 mg 

Nov 14: 145 mg

Nov 24: 142.5 mg (withdrawal symptoms after a week)

Dec 4: 145 mg (still trying to stabilize)

Aug 4: 110 mg (decreasing 2.5 ml/week and feeling pretty good in the process)

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