ManiacValleyMama: domperidone / Motilium withdrawal

[ManiacValleyMama]

I went on 90mg (*domperidone / Motilium) 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. 

 

* CC added drug name

 

Edited December 12, 2021 by ChessieCat
added spacing

[ChessieCat]

Hi ManiacValleyMama,

 

Welcome to SA.

 

I can see that you have already "met" some of the other members of SA who have experience with the domperidone / Motilium.

 

You probably already realise that domperidone is not a drug that SA knows much about but we do seem to be getting more members who have been experiencing issues trying to stop the drug.  Hopefully you and the other members will be able to gain information from each other and support each other.  Documenting your journey in your Introduction topic about what happened to you and how manage/d to get off the drug will hopefully provide valuable information and help for people in the future.  And since SA does have medical professionals who visit the site, hopefully they will learn from your experience.

 

Please follow these instructions and create your drug signature:

 

Instructions:  Withdrawal History Signature

 

Altostrata is SA's founder and I have done a search for her posts:

 

https://www.survivingantidepressants.org/search/?&q=domperidone&author=Altostrata&search_and_or=and

 

This is the results of a search for domperidone:

 

https://www.survivingantidepressants.org/search/?&q=domperidone&search_and_or=and

 

The search results for Motillium:

 

https://www.survivingantidepressants.org/search/?&q=motilium&search_and_or=and

 

And the search results for Motillium (spelled with double "l"):

 

https://www.survivingantidepressants.org/search/?&q=motillium&search_and_or=and

 

This is your own Introduction topic which is the best place for you to ask questions and journal your progress.

[ManiacValleyMama]

I have been doing so well for so long in my long journey off of “the devils drug” as I like to call it, aka Domperidone until March of 2023. I had been getting some withdrawal symptoms that I didn’t realize were symptoms and had I known, I would have begun to wean slower. Now, I’m stuck in a rut trying to wait it out or increase my dose to feel better faster and begin my taper again. I just don’t want to go backwards so I keep holding at 30mg. I had been down to 22.5 mg and that’s when my acute withdrawal happened. I reinstated and initially felt better but despite holding at this level, I can’t seem to fully stabilize. It’s been 5 1/2 weeks and I was hoping to start weaning again by today. Instead, I’m feeling a tightening in my forehead and slight anxiety, which is usually a tell that acute wd is in the near future for me. I also have a headache and my appetite is non-existent along with feeling nauseous. My heart seems to be racing but I work myself into such a mess when this happens that I’m not sure what is wd and what is actual symptoms. 
 

Anyways, just thought I’d start documenting again so I could look back and understand how long I’ve been holding and certain symptoms I’ve had. I hope this helps someone out in the future, as I know reading others stories has helped me hold on during my hardest days. 

[ManiacValleyMama]

I began my wean from 30mg on 7 May. Today, I began feeling a bit anxious, although I’m taking Ativan. I am experiencing slight pain in my forehead, diarrhea, and indigestion/reflux. I’m nervous to see what is yet to come, but will hold at this dose until I’m feeling better again. Will update as things progress. 

[ManiacValleyMama]

A little update almost a week later (day 8-9). By Friday (day 5-6) I had such a bad headache and was having ruminating thoughts every time I experienced a new bodily sensation. By yesterday, I felt pretty good and thought the worst of that drop was behind me. I’m still having pretty bad dry mouth as well, but otherwise have been feeling good. I woke up today feeling very nauseous, a little dizzy, tired and now keep getting strong waves of anxiety. I’m going to do some calm breathing exercises to see if I can get it under control. I have a history of having the panic attacks set in around day 9-10, so I’m impatiently awaiting seeing if they’ll show up (so that’s why I am so nervous about this anxiety now). 

[ManiacValleyMama]

Another update for this drop from 30 to 27.5 mg. I thought I was on the downhill side when yesterday I developed horrible body aches. I started wondering if I had the flu or Covid. I woke up this morning feeling better and was even able to get in a workout. Throughout the day, my legs began aching again and I’ve had waves of anxiety, though manageable. I have a tendency of getting in my head wondering if things will ever get better and I’ll ever make it out of this situation. I wish I knew how long it would take for the symptoms to pass so I knew what to expect. Not knowing what to expect is really one of the worst parts of this journey. Hopefully after surviving this drop, I’ll be a little more relaxed, knowing what is to come so I can lean in and embrace it next time. Oh, I still have the dry mouth as well. I noticed that when I stabilized last time, it decreased. I may wait to drop again until that part gets better because I worry about tooth decay as a result of it. Plus side: headaches are gone and my stomach is feeling better. We will see what the weekend brings and I’ll check in, in a few days. 

[ManiacValleyMama]

It is now 21 days past my drop and I’m finally feeling relatively better, though I do have minor anxiety that comes and goes, some random dizzy spells and my mood has been off. I am attributing most of it to taking my doses one day 1 hour, 2 1/2 hours, and 1 1/2 hours late all in one day. I had bad anxiety and horrible mood issues from it. I was incredibly angry all week, had a short temper and was really weepy. I’m no longer angry or short tempered, but still feel like I can cry easily (though that may just be who I am at my core lol). My plan was going to be to drop this coming Sunday but my husband has a trip coming up the following weekend and rather than risk having symptoms while I don’t have his support and my kids need me, I will wait until the following Sunday. Hopefully I’ll be feeling 100% by then. 

[ManiacValleyMama]

Today is day 32 post drop and two days ago I developed severe anxiety, tachycardia, increased urine frequency, among other symptoms. I felt a little better yesterday although my mother in law came to help out since my husbands out of town. Today I had quite an emotional day and ended up with strong anxiety again. I’ve taken propranolol and finally an Ativan to help the symptoms. I am feeing pretty scared wondering why I would be experiencing these symptoms such a long amount of time after dropping. It isn’t making sense to me. My drop was within the 10% threshold (2.5mg of 30mg), though I haven’t been successful with a 10% drop at higher doses (experienced acute withdrawal when dropping 10mg of 120mg). Maybe this is going to be the norm? But why suddenly would I experience this? I had a theory that my period was about to begin so maybe it had to do with the hormone changes, tho I still have no period (cycle day 31). I’m physically and emotionally spent right now and it’s hard to see the light at the end of the tunnel. Ready to be an always present mother and wife…

[ManiacValleyMama]

I began feeling better the weekend of June 10th, so I dropped another 2.5 on June 11, so I’m down to 25mg at this time. I’ve had some of my typical mild weaning symptoms, including headache, palpitations, headache, left eye pain/left side headache, inner ear twitching and some anxiety, though it has been manageable. I am taking propranolol to assist with the palpitations and tachycardia when it happens. I had a bad tachycardia episode yesterday, though I believe it was caused by a 45 minute late dose yesterday morning. My anxiety was increased this afternoon as well but it comes and goes. I’m hoping to drop to 22.5 by tomorrow if I feel better. If not, I’ll wait til Sunday (most likely option). 

[ManiacValleyMama]

Day 1 again: I decided to wait an extra week to drop this time, as I had left eye twitching and tachycardia often out of nowhere. I am attributing the tachycardia to the uneven dosing, so my plan is to lean into the suck and get through this drop.  Have been taking propranolol to help with the palpitations and it works well. I did not have a bad bout of anxiety this go around and was only late once. I’m hoping not to be late again this time so I can really see what the side effects should be like. Only 9 more drops to go after this…