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socalchk19: withdrawal from domperidone or other dopamine antagonists?


socalchk19

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Hi I am coming to ask for help and advice with my situation because I have been unsuccessful with getting any help from doctors. I was taking a medication called domperidone* which is a dopamine antagonist. I was on this drug for over 2 years and I took it for lactation purposes because it increases prolactin levels and makes you produce more milk. I was on 120mg for about a year and then I weaned down to 90mg no issues. Then I slowly got down to 40mg. When I tried to go to 30mg a day I experienced terrifying withdrawl symptoms that have drastically changed my life since then. I got severe anxiety and panic attacks, heart palpitations and tachycardia, muscle twitching all over my body 24/7, muscle weakness, loss of appetite, hot flashes, dizziness, high blood pressure which I never had before ever, excessive hair loss, dry scalp and hair, easy bruising, shortness of breath, intolerance to exercise. And I feel like there's more than that too but those are the main ones. I have had to go to the ER because I get these attacks where my body feels like i am racing inside and i get terrible heart palpitations but the drs won't give me anything to actually help. They just keep trying to give me SSRIs and beta blockers. I know these are not just normal withdrawl symptoms. It's like this medication effected my entire body and my adrenal and thyroid and everything else. I'm very scared if I don't get some proper help or get better soon I'm going to die. And it's very odd i will go like a week feeling alot better and think ok I'm getting better now and then all the symptoms come rushing back out of nowhere. I'm very scared and I have 5 kids that depend on me and 2 of them have a life threatening illness so I can't be in this condition I need to be healthy for them. Does anyone have any advice for me? Any info that can help me? Anyone else here with a similar story and did you ever get better? 

 

* from Wiki:  Domperidone is a benzimidazole derivative and is structurally related to butyrophenone neuroleptics like haloperidol.

 

Edited by ChessieCat
added wiki info

Domperidone from 09/15-12/17

Started at 120mg

Weaned to 20mg around 11/17

Then stopped C/T from 20mg 12/17

Suboxone since 2008 until current 

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  • ChessieCat changed the title to socalchk19: Withdrawal from domperidone or other dopamine antagonists?
  • Administrator

Welcome, socalchk.

 

I don't believe we've ever had someone come here asking for help tapering domperidone. (A few of our members have taken it, please use site search to see their comments.)

 

When did you go to 30mg? It sounds like you got withdrawal symptoms then, that's what those symptoms are, and you are still recovering from them. Very typically, withdrawal symptoms will come and go. This can be very frightening and very frustrating.

 

Are you taking 40mg now? When did you go back to 40mg? Have your symptoms changed since you went back to 40mg? Are you taking any other drugs?

 

How are you taking domperidone -- tablets, capsules? What do they look like?

 

Do you occasionally forget to take a dose? It's very important that you stabilize right now -- don't make any drug changes until we figure this out.

 

We have found that when people have difficulty going off neuroactive drugs, very gradual reduction may do the trick. Please see Why taper by 10% of my dosage?

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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  • Moderator Emeritus

Hi socalchk and welcome to SA from me too,

 

We ask all members to create a drug signature.  This appears below every post you make.  Please update it whenever you make a change.  This is the preferred format which makes it easier for us to see your drug history at a glance:

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

  • Please leave out symptoms and diagnoses.
  • A list is easier to understand than one or multiple paragraphs. 
  • Any drugs prior to 24 months ago can just be listed with start and stop years.
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This is your own Intro topic where you can ask questions and journal your progress.  We suggest that members visit each others Intro topics so that can support and encourage each other.

* 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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Ok sorry I guess I left that part out after I listed all my symptoms. After my symptoms started at 30mg a day I took 20mg for several days after that and I felt like I was starting to get a little better but I was scared to continue taking the drug because of all the cardiac side effects I was having so i stopped cold turkey from 20mg a day in December. So it's been over 3 months now since I quit and it has been one hello of a ride since then. I actually felt ok for the first week and then a week after quitting all the symptoms all came rushing back and I ended up in the ER with attacks that felt like i was physically dying. I have no history of mental Illnesses I was taking this drug for lactation purposes to feed my twins milk. And this drug has caused me to have serious mental health problems now it's very scary. Also it's not just the mental part it's very very physical as well. Since I tapered to 30mg I have been having muscle twitches for 4 months straight that have not gone away at all. I believe it's some kind of dystonia reaction to quitting the medication. People claim domperidone is safe and doesn't cross the blood brain barrier and after my research I know this to be completely untrue. It does cross the blood brain barrier and it can indeed cause dystonia and parkinsonism and even tardive dyskenesia which I believe I have a mild case of after being on the meds for 2 years. So I will feel better for about a week or 2 and even the muscle twitches go down in frequency and then it all comes back again and then there are new symptoms. Like now all my hair is falling out and i seem to be growing a mustache. I'm worried that this drug messed with my entire system like my thyroid and hormones and adrenal stuff. I know not many people are going to be familiar with domperidone specifically but I've come to learn to just treat it as any other antipsychotic dopamine antagonist because that's the type of reaction I seem to be having from it. 

Domperidone from 09/15-12/17

Started at 120mg

Weaned to 20mg around 11/17

Then stopped C/T from 20mg 12/17

Suboxone since 2008 until current 

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  • Administrator
5 hours ago, socalchk19 said:

Also it's not just the mental part it's very very physical as well. Since I tapered to 30mg I have been having muscle twitches for 4 months straight that have not gone away at all. I believe it's some kind of dystonia reaction to quitting the medication.

 

Yes, we know! We see these types of symptoms all the time, they're typical of withdrawal from psychoactive drugs.

 

If you stopped in December, it's been at most 12 weeks since you took the drug. We often see reinstating a small amount of the drug will reduce withdrawal symptoms, you'd stabilize on the low dose, then taper off by tiny amounts later. You get to "do-over" your taper.

 

Do you have any domperidone left? What do the tablets or capsules look like?

 

Many people do better with fish oil and magnesium supplements, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

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

 

Magnesium in particular can help the muscle twitches.

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you.

 

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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I have thought over and over about possibly taking the medication again and doing a slower taper but I was having such bad symptoms even with a slow taper I just thought it would be better to get that drug out of my system. Also domperidone has some very scary cardiac side effects I was not really aware of at first and I was getting all those side effects during the weaning process even though I was still on the meds. About a month ago I got so fed up with these withdrawls so I decided I was going to start back up on a low dose and then wean down super super slow like a quarter pill a month. So I took 2 pills at night before I went to bed and then that morning I woke up to a terrible heart attack type feeling with my heart racing and beating out of my chest and it took me a good 30 mins to calm down. After that I swore I would never take the drug again. But about 3 days later after just taking those 2 pills my muscle twitches stopped for 1 day (Which was the only day I've had them stop during these entire 4 months since they started) and I was so happy. From that point on I felt so much better for about 2 weeks and then the symptoms slowly started coming back again and progressing and getting worse again. Now here I am today and I still have the muscle twitches constantly, I have high blood pressure which I've never had in my entire life, they tested my CK levels and they were off the charts which means these withdrawls are doing some kind of damage to either my heart or muscles. I have a constant feeling of anxiety and like I'm moving so quickly inside my body. When I eat i get very lightheaded and dizzy. My hair is falling out. I just feel like this isn't "just withdrawls" and that there is something else wrong now because of the muscle twitching and now I have a fuzzy tingly feeling in my legs and feet all day and night and these seem to be symptoms of some kind of neuropathy. I just wish I knew if these muscle symptoms were going to be permanent or not so I could try to move on and accept my new life and find appropriate treatments. I have so much hope that I'm going to get better but it just hasn't happened yet and I'm getting really discouraged. Have you known of anyone else that has had such severe muscle reactions from stopping these kinds of meds and then actually healed and had all the symptoms go away eventually? 

Domperidone from 09/15-12/17

Started at 120mg

Weaned to 20mg around 11/17

Then stopped C/T from 20mg 12/17

Suboxone since 2008 until current 

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  • 6 months later...
  • Moderator Emeritus

Hi socalchk, 

 

How are you doing?

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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  • 2 years later...

Hi! How are you?

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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  • ChessieCat changed the title to socalchk19: withdrawal from domperidone or other dopamine antagonists?
  • 4 weeks later...

I'm really interested in how you (and others) are doing. I took this drug for only 9 days and had so many withdrawal symptoms that lasted about a month. I am still experiencing some, although every day gets better! My heart breaks for others that have been damaged by it.  I consulted with several physicians and an expert that is very familiar with it. I am interested in learning others' experiences and if I can provide any information to others, I would receive great satisfaction. 

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  • 11 months later...

@socalchk19How are you doing now? I had the EXACT same withdrawl symptoms as you & was on the same dose. Does it ever get better? 

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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