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☼ RubyRo: withdrawal from domperidone / Motilium


RubyRo

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On 12/11/2021 at 1:39 AM, FightingChance said:

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.

Oh @FightingChance your hormonal symptoms sound really awful 😞 What you’re saying makes sense — the reason we take domperidone for breastmilk is the massive increase in prolactin it causes. So thinking back to college (a long time ago for me) - your hypothalamus could be haywire (makes dopamine, also responsible for things like thermoregulation) or your pituitary could be haywire (makes prolactin, sex hormones) - or both.
 

I still have hope for your recovery - or at least improvement. From my own experience, it can take quite a while for the body to figure out what’s going on after big changes like going on / off dom… I read somewhere on this forum that your body is always working to heal and find a balance.

 

Do be kind to yourself — the worry and anxiety can be overwhelming, due to the precipitous drops and rises in neurotransmitters. You couldn’t have known and we’re doing the best that you could. You still are.

 

Let me know how you go with the MRI and the endo 🙂 I can never get used to MRIs, the machines are so weird and loud and claustrophobia-inducing.

 

 

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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18 hours ago, ManiacValleyMama said:

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 

Hey there @ManiacValleyMama(great username, by the way) - thanks for getting in touch. Quite a few women have reached out to me now, I’m starting to think dom withdrawal is not actually that uncommon.

 

Those symptoms you’re having sound very familiar to me. I can also identify with being terrified of the withdrawal. I’m glad your EKG was normal - you don’t want to have to worry about heart problems as well as everything else!

 

About tapering, I’m only just learning about all this myself. I follow the tapering advice on this site, and the protocols published on tapering antipsychotics by Horowitz and colleagues (https://academic.oup.com/schizophreniabulletin/article/47/4/1116/6178746) - because dom is a lot like a first generation antipsychotic. Nasty stuff.

 

I suggest that you hold steady on your current dose until you stabilise - the fact that you’re having some good days is an excellent sign. It can take a while for our bodies to adjust to the level of dopamine blockade… I held at the same dose for 6 weeks. Once I felt consistently better on that dose, I reduced by 10%. Then I held that for a month. Then I made another reduction. I generally feel a bit withdrawaly (not too bad, manageable) starting about 3 days after a dose reduction, and it sticks around for another fortnight or so… and then I’m mostly ok unless I’m really tired or stressed at work etc.

 

I have a theory that part of the challenge a lot of us face with tapering that we move too fast (up or down doses) for our brains and bodies to adjust. It’s frustrating when you just want to be off it, but for me slow and steady has been a good approach so far.

 

Can I ask who the people were that you spoke with who understand dom? I’m keen to know because I haven’t met anyone so far who understands it very well… All the specialist doctors I’ve seen have been mystified. 

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 hour ago, RubyRo said:

Quite a few women have reached out to me now, I’m starting to think dom withdrawal is not actually that uncommon.

 

I found this yesterday:

 

Dated 2021 Aug 16

 

https://pubmed.ncbi.nlm.nih.gov/30000430/

* NO LONGER ACTIVE on SA *

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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Hey RubyRo,

 

Thanks on the username compliment. It’s compliments of my son (Jack the Maniac) and we live in a valley. Haha. 
 

Thank you for the link for how to learn to taper properly. I’m just winging it with the help of a few girls in a Domperidone support Facebook group right now. If you’re on fb, I can get you in touch with them. They’re the only ones who understand Domperidone. Even my psychiatrist doesn’t fully understand it. He understands the general concept of it but nothing in detail. One girl said we should all get together and write a book when we’re done surviving this. I don’t think she’s wrong! 
 

You’re the second one who has advised me just to stay at this dose until I stabilize. I hope I actually do because my fear is that I never will. Your story gives me hope. You say it stays around for a fortnight or so (I had to look up what that meant!) and I’m at about 8 days now. I need to be brave and just stick it out! The body has to heal at some point right? 
 

You’re right about the tapering too fast part. I was doing fine until my psych had me taper too quickly. I shouldn’t have followed his instruction because I knew better. I see him again Wednesday so maybe I’ll be feeling better by then. 
 

Anyways I appreciate your reply and insight so much and wish you luck in the rest of your journey. 

Domperidone/Vesperidone 
May 2021-90mg, Jul 2: 120 mg Aug 25: 110 mg (wd after 10 days), Sep 4: 120mg Sep 15: 150 mg (withdrawal at 120 so increased), Nov 4: 147.5 mg, Nov 14: 145 mg Nov 24: 142.5 mg, Dec 4: 145 mg (still trying to stabilize), 2022: Aug 4: 110 mg (decreased 2.5 mg/wk- feel good for months) 2023: Mar 20: 22.5, Mar 22: big wd, increased to 30mg, April 30: hold at 30mg, still wd, May 7: 27.5, June 11: 25mg Aug1: back to 30. 

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6 hours ago, ChessieCat said:

 

I found this yesterday:

 

Dated 2021 Aug 16

 

https://pubmed.ncbi.nlm.nih.gov/30000430/

Thanks @ChessieCat!! That’s really thoughtful of you. I’m glad they’re updating the official drug summaries to include side effects and withdrawal. One of my doctors is going to write up my experience as a case report, just as soon as I’m clear of the drug. The only problem is he keeps calling me to ask me if I’m off it yet 😆he doesn’t quite understand the idea that it’s going to take me quite a few months yet…

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...

It’s time for another update. I’m on 4.5mg per day now, across three doses of 1.5mg. I am pretty much withdrawal symptom-free - just some slight neck/headaches and occasional restless legs. Over the last 6 weeks I’ve started to do some physical exercise every day, which is helping me feel better too.


I’m recovering!! Yay! 
 

…one small, gradual step at a time.

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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  • 2 weeks later...

Another learning experience for me on this journey…

 

After posting so confidently in my last update, I slipped up and forgot to take a dose - not once, but twice in two days. For those two days, I took only 3mg per day rather than 4.5mg.

 

I was fine for the next few days, but then 5 days later that horrible, familiar feeling of withdrawal returned. It started with a headache and neck ache that moves through to the mid back, a raw feeling in my sinuses and very dry, scratchy eyes.

 

I kind of feel like the inside of my head’s been painted with wasabi right now - a funny thing to say but really not great to experience. Not recommended.

 

I have pressure in my larynx and oesophagus. I think this is mostly muscle spasms, like the back and neck pain. I have some twitching, particularly around my left eye.


For the last two days I’ve also been hyped up and anxious, and at the same time feeling depressed and hopeless. I have a sense of impending doom. I’m having trouble sleeping.
 

All that said, it’s not as bad as when I was in acute withdrawal last year. I’m also not getting much akathisia, which is a very good thing.

 

The best part of my current withdrawal episode is that I know it will end. I will keep taking this dose until I stabilise, and then I’ll keep tapering veeery slooowly.

 

I also have an answer to the question I started to ask myself last week — ‘now I’m on a low dose, and given that I feel so well in general, can’t I speed up the taper a bit?’ And the answer is a categorical NO. I knew that already, from everyone’s experiences on this forum. If amything, I need to slow down my taper.

 

This journey is certainly an exercise in patience!!!

 

I’ll post another update when I stabilise.

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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10 hours ago, RubyRo said:

I also have an answer to the question I started to ask myself last week — ‘now I’m on a low dose, and given that I feel so well in general, can’t I speed up the taper a bit?’ And the answer is a categorical NO. I knew that already, from everyone’s experiences on this forum. If amything, I need to slow down my taper.

 

This journey is certainly an exercise in patience!!!

 

Even with the knowledge I have gained from being a mod from 2016 I had times when I felt impatient.  I wrote this to another member.

 

  

On 10/29/2021 at 8:22 AM, ChessieCat said:

I am glad that you are aware that your taper could take a long time.  It may help you to remain patient during that time.  However, please expect that there will be times when you start being tempted to go faster.  I think it is understandable.  We can get the stage where we just want it over and done with.  If/when that happens please post about it here in your Introduction topic.  It was very helpful for me when I got impatient.  It was good to get support from other members; people experiencing tapering and withdrawal are the only ones who truly understand this journey.  However, I also found that typing out my musings would get it out of my head and quite often by the end of my post I would realise how silly it was to go faster.

 

Good luck, and remember, taper according to your body/symptoms, not the calendar.  And hold for longer if there are any times when there is additional stress (good and bad; members taking holidays have experienced waves) in your life, or you are sick.

 

And only one change at a time.  And another thing to consider.  Even if you are going okay with your taper, sometimes it is nice to take a break for a while and give yourself a rest.  I did 2 long holds during my taper, one of 3 months and another of 7 weeks.  Things were going well but even though I was feeling okay I thought it would be good to hold and give my brain a chance to make any adjustments that it might need to do that I wasn't able to notice.

 

And do not put everything down to withdrawal.  If you hit a rough patch, do some detective work and think about what else might have happened.  And if you get a symptom that could possibly be a medical issue not related to withdrawal, it is better to get it checked out, not only to get quick treatment, but also to allay any fears, which adds stress.

 

Please continue to update your Intro topic and remember to come back to write your success story once you are recovered and been off for at least 1 year.  I know that is a long way off, but other members find it very encouraging to be able to read about people who have managed to get off their drug.  Thank you.

 

* NO LONGER ACTIVE on SA *

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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On 2/16/2022 at 9:12 AM, ChessieCat said:

 

Even with the knowledge I have gained from being a mod from 2016 I had times when I felt impatient.  I wrote this to another member.

 

  

 

Oh @ChessieCat this is such good advice. I loved the part about giving yourself a break and holding at a dose for a while if you need it, and also the part about the speed of the journey being determined by your body’s needs rather than an external timetable. This whole process has been a great opportunity for me to learn to listen to myself. I’m usually a fairly deadline-driven person so it’s been a challenge…

 

In other news, my wave finished 7 days after it started, and I now feel really good again except for a slightly twitchy eye. The twitchy symptoms tend to stick around slightly longer than the others. I’m holding at 4mg.


A couple more women have contacted me on social media to ask for my support with their dom tapering journeys. One is on a very high dose.
I am happy to help if I can, but I kind of feel like I’m only inching my way in the dark - I’m by no means an expert. I share links to the resources on this site, and the articles I’ve read, and I share my own experiences. I spend time listening to what they’ve tried (typically a big jump down in dose, followed by a big jump up when they go into withdrawal, which then makes everything worse - I did it too).

 

I think that’s probably about 15 people who have reached out to me now about withdrawal from dom. I haven’t heard from some of them again. I hope they’re OK.

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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  • 3 weeks later...

I tapered to 3.5 mg 6 days ago. I also had to change my approach to making each individual dose from splitting to crushing.


I needed to take doses of 1.166mg per capsule, and this is too tiny for me to use a pill splitter and make ‘chunks’ of pill. To that point I had avoided using my mortar and pestle to crush pills, because I knew it would affect my absorption of the Domperidone. However, it reached the stage where I didn’t have any choice.

 

As predicted, withdrawal kicked in a few days later. I don’t know whether it was to do with the dose reduction or the pill crushing approach or both - probably both. The reduction in dose was only 0.5mg, but that equates to 12.5% of my last dose, so that’s actually reasonably large. I’m also under a lot of stress at work at the moment, and stress doesn’t help this at all.

 

My withdrawal symptoms have included the usual headaches, sinus issues, anxiety, and muscle spasms in my neck and back. Disconcertingly, my thumb also started twitching every so often, and my feet have been ‘buzzing’ for a few days now. The feet thing is difficult to explain. I’ve had a little akathisia, but it’s not too bad. 


 

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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  • 2 weeks later...

@RubyRo i read your whole history and I’m cheering you on! How are you splitting the tablets by 0.5 mg at a time? In your last post you said you crushed it but it affected absorption. 
 

I’ve been splitting the pills into quarters and need to go down from 1/4 pill to less. Any tips? I think I’ll be able to split the 1/4 (2.5) to 1/8 (1.25) but in that method I’ll be reducing 25% at a time. Hoping that isn’t too drastic. 
 

im holding at 5mg right now. Plan is to go to 3.75 mg in 4-6 weeks. 

Domperidone daily for 2.5 years (20mg 3Xday)
1/2022 - 3/2022 : 5mg daily (2.5 mg twice a day) No symptoms. 

3/18/2022: tried 2.5 mg once a day. Bad insomnia up all night and terrible racing mind and anxiety at night. 

3/21/2022: back to 5mg daily (2.5 mg twice a day). Immediately slept great that night. 

6/1/2022 : down to 2.5 mg daily. (1/8 tablet twice a day)

7/1/2022: down to 2mg a day (1/8 tablet shaved off a tiny bit twice a day)

8/1/2022: down to approximately 1.75mg 

(insomnia started up- major stressful events)

8/5/2022: back up to 2mg a day

10/19/2022 0 mg

12/26/2022 two months off domperidone all good

 

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  • 2 weeks later...
On 3/24/2022 at 5:42 AM, Dreamday said:

@RubyRo i read your whole history and I’m cheering you on! How are you splitting the tablets by 0.5 mg at a time? In your last post you said you crushed it but it affected absorption. 
 

I’ve been splitting the pills into quarters and need to go down from 1/4 pill to less. Any tips? I think I’ll be able to split the 1/4 (2.5) to 1/8 (1.25) but in that method I’ll be reducing 25% at a time. Hoping that isn’t too drastic. 
 

im holding at 5mg right now. Plan is to go to 3.75 mg in 4-6 weeks. 

Hi there @Dreamday- so sorry I didnt see your comment before now. For a long time I used a pill splitter and a microgram scale - divided up pill chunks into the right milligram dosages, shaving off bits if there was too much. Then the individual doses got too small for my microgram scale to measure accurately. Now I’m crushing the pills and weighing out the individual doses x 4 (my microgram scale has OK accuracy at 30-40 mg pill weight but not when it gets down to 10mg) and dividing it evenly into 4 doses visually. So now I’m down to 2.5mg dose per day, I crush the pills to powder, then measure out 34.5mg pill weight on my scale, then divide it visually into 4 doses of approximately 8.6mg pill weight, and then use a funnel to fill my capsules. It’s fiddly and time-consuming, but it’s ok. My body adjusted to the powder approach (rather than chunks of pill) after about a week.

 

Congrats on making it down to 5mg from 80!! I am celebrating each small increment down. We’ve come a long way… I think smaller steps as you approach the end is a good idea. As you say, it seems to be about the percentage reduction rather than the actual dose. I’m hoping I’ll be able to sneak in my latest drop from 3 to 2.5 without too many effects… if it doesn’t work, I’ll just make my increments smaller. 
 

let me know how you go with your next step down 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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8 hours ago, RubyRo said:

Hi there @Dreamday- so sorry I didnt see your comment before now. For a long time I used a pill splitter and a microgram scale - divided up pill chunks into the right milligram dosages, shaving off bits if there was too much. Then the individual doses got too small for my microgram scale to measure accurately. Now I’m crushing the pills and weighing out the individual doses x 4 (my microgram scale has OK accuracy at 30-40 mg pill weight but not when it gets down to 10mg) and dividing it evenly into 4 doses visually. So now I’m down to 2.5mg dose per day, I crush the pills to powder, then measure out 34.5mg pill weight on my scale, then divide it visually into 4 doses of approximately 8.6mg pill weight, and then use a funnel to fill my capsules. It’s fiddly and time-consuming, but it’s ok. My body adjusted to the powder approach (rather than chunks of pill) after about a week.

 

Congrats on making it down to 5mg from 80!! I am celebrating each small increment down. We’ve come a long way… I think smaller steps as you approach the end is a good idea. As you say, it seems to be about the percentage reduction rather than the actual dose. I’m hoping I’ll be able to sneak in my latest drop from 3 to 2.5 without too many effects… if it doesn’t work, I’ll just make my increments smaller. 
 

let me know how you go with your next step down X

 
hi @RubyRo thanks for your reply. Yea I’ve been visually shaving off from a 1/4 pill and now I’m down to 1/8th pill morning and 2/3 visually of 1/4 pill in evening. So around 2.9 a day. It’s been a week since the reduction and I'm doing fine I’m just anxious to reduce further.
This Friday I’m going to reduce to 1/8 th pill morning and 1/8 pill evening so 2.5 daily. The pieces are so tiny! How can they cause such a big withdrawal. 

good luck on your next reduction! 
 

 

Domperidone daily for 2.5 years (20mg 3Xday)
1/2022 - 3/2022 : 5mg daily (2.5 mg twice a day) No symptoms. 

3/18/2022: tried 2.5 mg once a day. Bad insomnia up all night and terrible racing mind and anxiety at night. 

3/21/2022: back to 5mg daily (2.5 mg twice a day). Immediately slept great that night. 

6/1/2022 : down to 2.5 mg daily. (1/8 tablet twice a day)

7/1/2022: down to 2mg a day (1/8 tablet shaved off a tiny bit twice a day)

8/1/2022: down to approximately 1.75mg 

(insomnia started up- major stressful events)

8/5/2022: back up to 2mg a day

10/19/2022 0 mg

12/26/2022 two months off domperidone all good

 

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  • 3 weeks later...

I am down to 2mg per day! I have been on this dose for five days now. I am feeling a bit tired and headachy/backachy, but I am OK. 
 

Anti-inflammatories don’t do much for my neck and back spasms. A heat pack helps a bit. I’m going to try some neck stretches to see if that does anything. It’s really not too bad 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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I’ve mentioned before that I’m connected with some other women going through dom withdrawal on social media. One group is a general one for support of mothers who are taking the drug. There are lots of queries about how to acquire it without prescription, how much to take, how to wean off etc.

 

A couple of days ago a woman posted to ask whether she could taper safely at a rate greater than a pill per week. She is on a high dose of 140 mg per day and was concerned it was going to take her three months to get off it (haha! It’s taken me 1 1/2 years so far… but I digress).

 

A bunch of us jumped in to say that we recommended she taper slowly to avoid potential withdrawal effects. 
 

One woman posted a comment to say that the OP should wean one pill per day. She said that she was a lactation consultant and nurse and had been around dom for 25 years - that any ‘sadness or sickness when weaning’ was not due to the Domperidone.

 

I responded to say that I had full on dopamine antagonist withdrawal symptoms, including extrapyramidal symptoms. She responded that Domperidone works on the gut and not the brain so that couldn’t be the case. 
 

I then said that actually dom works anywhere that there are D2 receptors, which are located thoughout the body including heart and the pituitary gland, which is how it increases prolactin levels to increase milk supply.  In some people it does also get through the blood-brain barrier to a significant degree, including me. I linked her to the review of dom withdrawal papers on this site.

 

She obviously didn’t read the review and responded that I had linked to a case of one woman (there were many other articles in that review), and I should look at the work of Frank Nice who has written about how dom works - that it’s impossible for people to have withdrawal from dom.

 

I feel pretty angry. I am choosing not to respond to her. I feel like writing a comment in response that links to all the withdrawal articles separately, but this won’t help matters. She will just write back more dangerous and ill-informed opinions that someone might read and listen to. In her professional life, this woman will continue to promote off-label use and dangerous tapering practices, and more women will end up with severely compromised health. 

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

I can understand your anger.  I think the majority of SA members have felt/feel the same way.  Some members have been told that the withdrawal symptoms they are experiencing (even physical ones) are all in their head and that it is not withdrawal or their pre-existing condition when the symptoms they are getting they have never experienced before in their lives.

 

Medical professionals receive their information from the pharmaceutical companies and the goal of pharmaceutical companies is to make money for their shareholders.  Gwen Olsen was a pharmaceutical representative for 15 years and she has several videos:

 

Video:  Ex-Big Pharma Rep:  We’re Trained To Misinform -The Drugs ARE Dangerous (6 minute video)

 

 
Interview:  Confessions of an Rx Drug Pusher (51 minutes Gwen Olsen - ex pharmaceutical representative)
 
I think it is a good idea not to respond further to this person.  You have provided information and hopefully other readers will become more knowledgeable because of that.  And hopefully down the track something that you have posted will be remembered by this nurse and they will "get it".
 
One thing that I will encourage you to do is to now make a conscious effort to let go of this anger because it is not good for you to stay stressed.  I think it is good that you have posted about it because it has got it out of your head, it is being read by others who understand and your anger is being acknowledged here.
 
Remind yourself that you have done your best.  You did not stay silent and others may learn from your information.
 
Edited by ChessieCat

* NO LONGER ACTIVE on SA *

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...

I am now down to 0.5mg per day. My scale isn’t too accurate at these tiny doses. I now put 10.4mg total pill weight (1 mg dom) onto the scale and divide visually by 6 for two days of capsules. But the amounts are so small my scale isn’t coping. It keeps saying ‘0’ until I pile more on and then it flips between numbers like ‘13’, ‘18’, ‘20’. A better scale would cost me thousands of dollars.

 

I think my equipment difficulties might put an end to my ideas of a fine-grained taper. I made contact with a company in Denmark that makes pre-manufacture tapering strips, but they have Domperidone suspension on sale over there so they wouldn’t make me any strips. Local compound pharmacies have been a bit mystified when I have called to make enquiries about tapering domperidone capsules.
 

I’m mostly doing OK, but as I’m getting down to small doses the withdrawal is more significant. I think this is because I’ve been stepping down much more than 10% of my previous dose each time (ie 0.75mg to 0.5mg most recently). I’m holding doses for longer to try and smooth it out.

 

I said I’d try making my own liquid suspension… if the withdrawal is bad between 0.75 and 0.5 (I’ll know in about 3 days) I’m willing to give it a go.

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’s a week later and I seem to be OK holding at 0.5(ish) per day. I do have parasthesia down my back, especially on the right side - it’s cold and there’s some tingling.

 

The akathisia in my feet is also quite bad at the moment - when I sit or lie down, the toes of my left foot start jiggling up and down. I can stop it, but then tension builds up… those of you who have had restless legs or akathisia will know what I mean.

 

I have a twitch or tic high up in my nose on the left that comes and goes. it’s probably not noticeable by others. I’ve also had some random odd intrusive thoughts. However, my anxiety is manageable, and I’m not having horrendous neck and back spasms. I’m going to hold for another week at 0.5 and see how I do.

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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  • 2 weeks later...

I’m now at (approximately) 0.25mg per day. I can’t taper further using this method - the doses are just too tiny. I’m also having some withdrawal symptoms - back and neck pain, muscle aches, parasthesia in my back, and tiredness. My eyes have gone all puffy and baggy again. But in all it’s not too bad at the moment.

 

I have an appointment at the hospital later on this month ‘to see how I’m going’. So far they haven’t done anything much to help me. I’m a ‘medical anomaly’ (although dom withdrawal is actually pretty common) and no doctor has ever known what to do to help me. Mostly the doctor at the hospital just wants to write an article about me, once I’m off the dom.

 

 

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 have just completed a week at 0mg Domperidone per day. From days 4-6 I had some headaches, parasthesia,  anxiety and sinus issues / baggy eyes but it wasn’t very bad at all compared with previously. Today I feel fine.

 

I need to share that again. It’s amazing. I am so happy. 
 

I am feeling fine here at day 7 on 0 mg!!!! No more making capsules, no more 8-hourly alarms to take it, no more worrying that it’s causing long-term damage to my heart and brain.
 

I went to my hospital check up earlier this week and was signed off officially.

 

I’m going to wait a bit longer before I add myself to the ‘success stories’ thread though… I’ll check back in in a couple of weeks and let you know how I’m going.

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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I seriously can’t express my happiness for you! You did it girl! I can’t wait to be in your shoes! 10 or so months to go! 

Domperidone/Vesperidone 
May 2021-90mg, Jul 2: 120 mg Aug 25: 110 mg (wd after 10 days), Sep 4: 120mg Sep 15: 150 mg (withdrawal at 120 so increased), Nov 4: 147.5 mg, Nov 14: 145 mg Nov 24: 142.5 mg, Dec 4: 145 mg (still trying to stabilize), 2022: Aug 4: 110 mg (decreased 2.5 mg/wk- feel good for months) 2023: Mar 20: 22.5, Mar 22: big wd, increased to 30mg, April 30: hold at 30mg, still wd, May 7: 27.5, June 11: 25mg Aug1: back to 30. 

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It’s week #2 on 0mg and I’m still having a few weird symptoms, but they’re bearable. Anxiety is the main one - parasthesia and other physical symptoms are much less now. Yay!!!

 

if I can do it, you can too 🙂 it just takes time.

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

Congratulations Ruby.  That's really good to hear.

 

On 8/5/2022 at 8:59 AM, RubyRo said:

I’m going to wait a bit longer before I add myself to the ‘success stories’ thread though

 

This is the criteria for a Success Story.  We'd really love for you to write yours in the future so please remember to return. 😊

 

On 11/17/2012 at 3:24 AM, Altostrata said:

If your withdrawal syndrome is completely resolved -- you've been off ALL drugs for a year

 

* NO LONGER ACTIVE on SA *

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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  • Administrator

Good to hear, @RubyRo

 

Many people find fish oil and magnesium supplements helpful, see

 

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 1 month later...

Thanks @Altostrata -- all is still going well at this end.

I'm taking small doses of magnesium now, and it seems to have helped.

 

It's 57 days -- nearly two months!! since I last took domperidone... but who's counting 🙂 I am now almost completely symptom-free. I haven't had any twitches, or anxiety episodes, or strange cold feelings down my back and arms... I haven't had any headaches or neck spasms.

The one thing that remains, but is much less, is the akathisia. When I lie in bed at night I sometimes find my toes start tapping away. But I think this is starting to diminish also.

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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  • Administrator

Good to hear. How much magnesium are you taking? This can help the movement symptoms.

 

Because you're feeling better, I added our cheerful "here comes the sun" symbol to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

 

Please see this topic:  How to write your success story

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 1 month later...

Hello again 🙂

 

So I’m having a bit of a setback right now, but I’m taking it as a learning experience and I’m hopeful things will get better again.

 

I skipped off into the sunset 3 months ago thinking I was free of dom and therefore everything was a-ok. But it hasn’t worked out like that.

 

I have a pretty demanding job that requires me to take a lot of responsibility. Over the last month or so it has become overwhelming, and I’ve been working all hours to try to stay abreast of it all. I’ve also had some people management issues, which I find highly stress-inducing. My self-care has suffered a bit as the result of all of this. I haven’t been eating as well as I’d like, and my exercise regime has fallen by the wayside. I’ve been sleeping less.

 

About a fortnight ago - 3 months off dom - I started having neurological symptoms again - weird feelings, twitches, numb lips on one side, pain under my left ear where I had Bells Palsy, really bad akathisia, nausea, dry eyes. I had a big panic attack a few days ago, and have had pins and needles in my hands and feet. Insomnia has been an issue - I’m very ‘hyped up’ just like when I was in acute withdrawal. I’m sleeping maybe 4 hours per night. The only thing that’s better than my acute withdrawal episodes before is I don’t have an horrendous cervicogenic headache (that’s a win! It was my worst symptom)


I’m taking this episode as a message that I need to slow down. I took time this afternoon to cancel some of my meetings for the next fortnight. I am relaxing, doing nothing, trying to rest. I’m using reassuring affirmations (it can’t hurt, right?) ‘my neurons are getting better all the time, I am recovering, my body will find the right balance for my dopamine receptors…‘


I’ll get better. I can get through this, just like I have before…

 

 

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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PS. I read the article from this site ‘are we there yet?’ There is a section about post-zero bad episodes that can happen when think everything is fine now and then do things like push too hard, drink alcohol etc. 

 

I love this site. Without it, I’d be utterly terrified and feeling like I’m the only person who has ever gone through this scary and debilitating stuff. The fact that there is a reassuring article that tells me that my experience is actually pretty common and I’ll likely keep recovering is so incredibly soothing in my heightened-anxiety state. Thank you @brassmonkey

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 months later...

It took me 3 months to recover from that last episode. That was a tough one! I was so exhausted, andI kept having these weird neurological symptoms (twitching, neuropathy, spasms, akathisia)… and I was massively anxious again all of a sudden. 
 

i think I’m mostly ok again now, but I’m still a bit ‘WTF???’ about it. Is this still extended withdrawal effects? I’ve been off dom since last August - 7 months… or is this something new? Uncharted territory….

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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  • Administrator

Good to hear from you, @RubyRo

 

Did you have covid, take antibiotics or other drug, drink alcohol, overdo it in the sun, etc.?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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On 3/27/2023 at 5:17 AM, Altostrata said:

Good to hear from you, @RubyRo

 

Did you have covid, take antibiotics or other drug, drink alcohol, overdo it in the sun, etc.?

Hi @Altostrata Thanks for dropping by 🙂

 

I think it was a combination of things. I had a miscarriage in October. I was pushing it way too hard at work. I travelled a lot, working 10+ hour days, not getting enough sleep, high stress and pressure. Then there was a major HR issue with one of my staff. I started having some symptoms then, but kept pushing hard anyway. I flew overseas for work and with one thing and another didn’t sleep for a few days. I went to the doctor for tests and she said I was dehydrated, my iron levels were very low, and my thyroid hormone levels were abnormal. Then in December my son had an accident and was hospitalised. 
 

Reading all of that I’m not surprised my body staged a revolt 😆

 

It took me a month of rest, rehydration and supplementation before I started feeling better. 

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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  • Administrator
15 hours ago, RubyRo said:

It took me a month of rest, rehydration and supplementation before I started feeling better. 

 

What a relief! You went through a lot.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 3 weeks later...

Ok so here’s a brief update about what I’m doing to heal post-taper.

 

I am now 8 months free of the evil drug, but am still in recovery… I’m still more anxious than I used to be (it comes in waves every so often) and more prone to neurological issues like twitching, akathisia and parasthesia. I have neck spasms sometimes.


I take magnesium and fish oil. I try not to overextend myself, and I try to get enough good quality sleep. 
 

I’ve become aware that I’m still quite traumatised by the experience of drug withdrawal - the initial acute phase where I was in terrible pain, overwhelmingly anxious, convinced I was going to die and couldn’t figure out why… then the ongoing feeling as I tapered that that my body could no longer be relied upon and was no longer my friend. I experienced unpredictable and sometimes severe physical symptoms and developed health anxiety.

 

For the last couple of months I’ve been doing some EMDR with my psychologist, and it’s helping. I am less anxious about being anxious (if that makes sense), and less terrified that my body is going to betray me. 
 

I’ve also started going to yoga 3-4 times per week. This is helping me reconnect with my body and ‘make friends with it’ again. The breathing and mindfulness aspects are helping me to be calmer in general. The postures are helping me feel stronger and more like my body and I are a team again.


I’ve still got a way to go. 

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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  • Administrator
On 4/17/2023 at 6:49 AM, RubyRo said:

I am less anxious about being anxious (if that makes sense), and less terrified that my body is going to betray me. 

 

Excellent insight. Hang in there, you're going to be okay.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 2 months later...

I’m now 11 months clean of Domperidone. I’m feeling so much better.

I still have a few twitches and restless legs at night, but these are much improved. The anxiety and panic attacks seem to be completely gone. 
 

I’m continuing with iron, magnesium and fish oil supplements, and do yoga several times per week. Things are looking up.

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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  • Administrator

I hope you will add your story to our Recovery Success Stories eventually!

 

Please see this topic:  How to write your success story

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Altostrata changed the title to ☼ RubyRo: withdrawal from domperidone / Motilium

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