Rubyro free from Domperidone

[RubyRo]

I have now been completely off Domperidone / Motilium for 1 year and 8 months, and am completely recovered! My intro post is here.

 

I started taking Domperidone to help increase my breastmilk supply. I took it as my doctor prescribed for just under a year before tapering as she directed (one pill per week) to wean. My taper was about regulating milk supply rather than managing any side effects or withdrawal,  because I didn’t know there were any side effects.

 

Halfway through my taper, I ended up in hospital with a raft of symptoms - panic attacks, insomnia, anxiety and paranoia, brain zaps, tremors, twitching, tingling, nausea, headaches, dizziness, and akathisia… I thought I was going to die, but I had no idea why.
 

I wasn’t diagnosed with drug withdrawal at the time because Motilium is not supposed to cross the blood-brain barrier. It turns out that in many of us it does (surprise!), and particularly if taken over long periods it can cause massive long term changes in the brain and other places where D2 neurons exist — similar to 1st generation antipsychotics like Haloperidol.

Anyway, after searching the medical literature while in hospital I diagnosed myself with drug withdrawal (no I am not a medical doctor). I then worked with a neurologist and a general medicine specialist over two years to get off Domeridone. By ‘worked with’, I mean I saw the doctors occasionally and told them what I was doing to taper and how I was going with my symptoms 😆 They had no idea how to approach any of it. However, it was good to be believed and supported by medical professionals. I know many of us here don’t ever have that.

 

How I got off domperidone: I read advice here and learned how to use a milligram scale and make my own capsules for my taper. Again following advice here (and a great article by Horowitz et al in Schizophrenia Bulletin in 2021), I followed roughly a 10% / hyperbolic taper until the amounts became too small for me to weigh. After coming off it I took magnesium and fish oil.
 

When I was out of my mind with anxiety, pain and sleep deprivation, members here provided me support and reassured me that I’d feel better eventually. And I held my dose for a while and later kept going with my taper, and then eventually I did feel better.

 

I came off Domperidone completely in July 2022. I experienced some residual periodic anxiety, twitching and tingling for about a year after stopping, but I’m now free and clear. 

 

Now I try to help other mothers who have run afoul of this drug. There are a lot of us, unfortunately. It doesn’t help that domperidone is banned in many countries and sold to desperate mothers on the black market. It is also prescribed by crazy doctors at crazy high doses elsewhere. Many medical professionals are still in denial or ignorance about the very real side effects of this drug.

 

[Emonda]

Congratulations @RubyRo,

I'm glad to read you've recovered 🎉

 

7 hours ago, RubyRo said:

I read advice here and learned how to use a milligram scale and make my own capsules for my taper. Again following advice here (and a great article by Horowitz et al in Schizophrenia Bulletin in 2021), I followed roughly a 10% / hyperbolic taper until the amounts became too small for me to weigh. After coming off it I took magnesium and fish oil.

 

Sounds like the advice on this site was spot on 😊

 

7 hours ago, RubyRo said:

Now I try to help other mothers who have run afoul of this drug.

 

Fantastic to read this, RubyRo.

 

Thanks for sharing your success story.

 

Emonda.

[LukeUK]

Hi,

 

I am very glad that you fully recovered.

 

  

11 hours ago, RubyRo said:

Many medical professionals are still in denial or ignorance about the very real side effects of this drug.

 

 

Unfortunately that is the case for all psychiatric drugs, as well as ones which are less commonly thought to have psychiatric effects but can do for some.