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  1. 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
  2. Hey Everyone, I took Domperidone aka Motilium which is an anti-psychotic dopamine antagonist for about 3 weeks in September 2021 to treat some gastrointestinal issues. I took 10mg for the first 2 weeks, but didn't see much improvement in my condition so I started increasing dosages during the third week. I was on 10mg most of the third week, but increased it to 15mg for one day only and seemed to be fine with no bad reactions until I tried a 20mg on another day. The day I tried a 20mg dosage, I was completely fine, but when I woke up the following morning I was tachycardic and having a panic attack. After it happened, I stopped taking the medication for several days, but to be honest I was in a bit of denial of my panic attack being caused by the medication because a lot of the info I came across online mentioned how Domperidone does not cross the blood-brain barrier unlike another dopamine antagonist called Metoclopramide aka Reglan. Prior to taking this medication, I had tried other alternative medications to treat my gastrointestinal, but none of them worked so I think that was also a big reason for my denial. After I stopped the medication because of the panic attack, I was feeling normal during the following days. I still wasn't fully convinced that Domperidone was the culprit for what happened so I ended up trying it again, but to be safe at only a 5mg dosage. The day I took the 5mg I was fine, but the following day I landed myself at the hospital. I'm here almost 1 year later, but have been still experiencing side effects from the drug which tends to fluctuate in waves and windows. I'm not taking any medication at this time out of fear of making things worse and my symptoms consist of the following: Mild head tremor. Sometimes seems like my head is moving side to side or nodding up and down without me purposely doing so. Symmetrical internal body tremor that I feel in my chest, arms and legs. They vary in intensity depending on the the day or week and I would describe as a vibrating feeling as if my phone is vibrating throughout my whole body. Mild external tremor that I notice myself, but is not as noticeable to others. Feeling at times like my body is being rocked back and forth while lying in bed or even while standing still Heart rate feeling elevated at random moments Apologies for the long backstory, but I would love some advice and insights this community can offer. The symptoms have been improving over time, but whenever I'm in a wave, I do worry that I might be going backwards.
  3. Hi everyone I’m glad to find this support group. I’ve been on Dom for a little over 3 years. I was on 60mg daily (20mg three times daily). I had stopped in the past for a week and had no issues no withdrawal I was creating that break the tolerance as dom was not upping my supply that much anymore. Well my daughter is almost 4 years old and we still nurse and nursing has been the most fulfilling experience of my life. But I want to get off this drug. I’ve managed to be down to 2.5mg twice a day so 5mg daily for two months and I have no symptoms at that amount. last week I thought I’m on such a low dose I should just stop the 1/4 tablet morning dose and just taper to the evening dose 1/4 tablet dose. Well that’s when the horrible insomnia started. The next two days I stopped the dom completely and I was up all night and my mind would keep racing. After two nights of this I got up at 5am and bit off a small piece of the dom and I managed to get 2 hours of sleep. Next day I went back on 1/4 tablet twice a day and slept great that night and woke up feeling great. Now I plan to stay on the 5mg daily for a month or so and plan to split the 1/4 tablet into half and reduce to 1/8 morning 1/4 night for 4 weeks. Then 1/8 morning 1/8 night for 4 weeks. after 1/8 it’s going to be hard to split further any suggestions or tips for furthering splitting ? I can’t believe the horrible withdrawal even at such a low dose? seems like I’ll be on this dose for the rest of my life at this point. xx
  4. Hi everyone, This year has been a tough one for me and I’ve never reacted to drugs in this way. Since having covid my central nervous system has been affected and I need some advice please. I had been on Prozac in the past with no issues, I cold turkeyed it last year in October. Then had covid in Jan this year and felt extremely anxious so decided to reinstate. Once I did it immediately zapped my anxiety and emotions and I haven’t felt them since (with the exception of some small windows). I have been on a number of antidepressants since: Seroquel 25 mg PRN (2020 - 2022) Mirtazapine 15mg (February to March 2022 -cold turkeyed and took a few doses intermittently - bad rebound insomnia) Cymbalta 30 mg (5 days in February) Parnate 10mg (4 days in March) Domperidone (February to March 2022) Hospitalised on 5mg Olanzapine and Mirtazapine 15mg reinstated which was upped to 30 mg for a week. Down to 22.5mg Mirtazapine and 2.5mg Olanzapine currently, still feeling emotionally numb but haven’t been able to drop the Olanzapine because of insomnia. I know it’s quite a complicated history but I wasn’t aware it was the drugs causing the issue for a while, because I had covid and thought it was that. I have a very supportive psychiatrist who does want to help me taper slowly, probably not slow enough though so I’d just like some advice please to taper off the Mirtazapine and Olanzapine and just hoping one day I’ll feel like myself again. Do you think it’s possible for me to heal? Thanks for all your help!
  5. My history is not exactly antidepressant related but I have the same PAWS symptoms that a lot of people are dealing with. So I'm posting this hoping to find some answers and help here. I was a heavy alcohol and cocaine/speed user for about five years. I would typically binge drink and use cocaine/speed 2-3 times per week until the early morning i.e. the next day. I quit all drugs 1.5 years ago. To this day I'm facing strong PAWS symptoms including insomnia, brain fog, feeling spaced out, irritability, mood swings, no motivation and frequent constipation. I've been keeping a spreadsheet where I track my daily sleep, symptoms, medication and supplements. It has helped me figure out what I can tolerate and what not. It has also helped me better understand my condition before finding this forum. When I found Adele's Journal article (https://journals.sagepub.com/doi/full/10.1177/2045125321991274) it was such a relieve to know that many other people are dealing with the same symptoms and knowing that I might just need more time to recover and get better. By tracking my own symptoms in a spreadsheet I was able to find out that my PAWS get triggered by anything that strongly affects my dopaminergic/serotonergic system. Examples include artificial sweeteners, Domperidone (gastroprokinetic which I was prescribed when I had gastritis, it's a dopamine antagonist) and most recently the antihistamine Chlorphenamine. I also don't tolerate zinc very well (seems to have some effect on dopamine/serotonin as well). About a month ago I had Covid and used nasal spray for a period of 10 days. It turns out the nasal spray contained a decongestant and the antihistamine Chlorphenamine which affects serotonin. Ever since I stopped using the nasal spray I have been facing much stronger withdrawal symptoms again. It's almost like it has set me back to the very beginning again. I've been sleeping only five hours per night with carb cravings during the day. Feeling spaced out and just trying to get through the days until it gets better. What's interesting is that while I was using the nasal spray my sleep was much better than without it. The same thing happened when I was briefly taking the gastroprokinetic Domperidone. It improved my sleep while I was taking it but it ultimately triggered strong withdrawal symptoms again. So I'm now 1.5 years into this and I have definitely improved. Before the Chlorphenamine issue, I was doing much better already. Half of the week I would sleep quite well and then I had about two days per week where I wouldn't sleep well and maybe one day per week where I would have very strong brain fog and spaced out feelings. Also, I'm still unable to get much work done. I'm a freelancer and I'm lucky that I have income from long-term clients that require little work to maintain them. I'm really only doing the absolutely necessary work to keep my business alive which is often less than an hour per day. I don't have the motivation and energy to do much more than that. I have big plans to grow my business and trying to motivate myself to get there but it feels like it's still too early for me to accomplish this. What I'm trying to figure out at this point is whether I should see a psychiatrist to get on some kind of medication to help with the withdrawal process? This would potentially help me get back to working on my business earlier again. Or because it's been such a long time already should I just push through it and keep going without any medication? I'm also scared that I will just end up triggering more withdrawal if I start another medication. Thank you in advance for any help and insights!
  6. Hello, I found this forum by searching for domperidone withdrawals and can see there are many other members experiencing something similar @FightingChance @RubyRo @ManiacValleyMama. I started domperidone in September for lactation (12 pills total - 3 times a day). I was on it for almost 2 months and started trying to come off in late October. I went down by 3 pills over a period of 2 weeks and that’s when I started experiencing some depression symptoms. My doctor wanted to put me on Zoloft but was concerned about the interaction with this medication and domperidone (concerning the heart). She insisted that I taper off of domperidone much quicker and I started to come down one pill every 3 days. Since then I felt like I have been living a nightmare. I experience almost constant anxiety, insomnia, agitation, restleness and more recently heart palpitations and shaking hands. I slowed down the taper a few weeks ago and I’m down to the last two pills. I am terrified of going down any further although I really want this nightmare drug out of my system. I know that for most people I have read about, they came off cold turkey and I’m confused about why I am having such a powerful reaction. My body feels like it is shutting down. I am hoping to get some guidance about how quickly I should taper off if the remaining pills and if I should even go up a dose. Thank you for the help.
  7. I am in need of help. I quit Domperidone Cold Turkey after being on 120mg for 3 months (4pills 3times per day). I experienced severe withdrawal symptoms a few days later but stayed off the pills for a week and a half. During that time my Dr wanted me to stay off the Dom & try starting Lexapro but I read Lexapro takes awhile to work so I decided to start taking the Dom again to re-wean off of it. I played with doses for a week or so & went back on at 3x2x3 to then drop 1 10mg pill per week from there. I’m experiencing all hormonal & anxiety symptoms. It’s as if I went through menopause when I quit the pills Cold turkey and I’m only 28 & 9months postpartum since I used this drug to increase breastmilk. I don’t know what to do. I don’t want to be on the pills anymore b/c I want to be done producing breastmilk but while I’m still taking them I still lactate. My brain hurts & I don’t know what damage I’ve done to my reproductive system as I wanted more children in the future. No Drs can help b/c this drug isn’t sold legally here in the US I got it from Canada. Please help. I want off so badly.
  8. 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.
  9. Hi All, I desperately need some perspective as I don't know how to proceed and neither does my doctor. Am I still going through withdrawal? Have I just broken my brain? I'm having some pretty dark thoughts (which is a new thing for me) and it's kind of freaking me out. Here's my story. Prior to 2016, at age 36, I had no history of being on psychotropic medication or any mental illness (although I had seen a therapist throughout my years and am a psychotherapist, myself). Then, 2 and a half years ago, after doing much research, I decided to take a non FDA approved drug called Domperidone to help increase my milk supply when I was nursing my newborn daughter. My lactation consultant had suggested it and several people I know had taken the drug successfully. Unfortunately, I had a very bad reaction to withdrawing from the drug (after having been on it for 4 months at 160 mg...the "safest" max dose, according to the literature) and later learned that the drug acts very similarly to Risperdol (spelling) or an anti-psychotic, since it's a dopamine antagonist. My symptoms included crippling insomnia and anxiety, brain fog, psychomotor impairment, agitation, memory issues, sensitivity to sound and touch, and the list goes on and on. It was the single scariest thing I had ever experienced. Having never been on any psychotropic meds before, I was desperate for relief as this was unrelenting after a month or two, and my doc finally put me on 175 mg of Zoloft and .5 ativan to calm me and allow me to get some sleep as I attempted to simultaneously reinstate and taper off the Domperidone. Only after being on the Zoloft and Ativan was I able to do this. I felt so relieved to be off of the domperidone. A few months later, after I had successfully come off the domperidone, I began to slowly taper the Zoloft (which went pretty smoothly) and then I slowly tapered almost all the way off of Ativan. But I found it difficult to sleep more than a night or two without taking at least a .25 of Ativan. Fast forward several months, I began getting what I feel like were interdrawals on the Ativan. My doc tried switching me to Valium to slowly taper off of that and that went terribly. I could not tolerate it. I felt high and anxious, lost my appetite altogether, and the brain fog came rolling right back in. I began to question if I had broken my brain somehow with the breastfeeding drug. This is still my narrative, quite honestly. Finally, my doc put me on 15 mg Mirtazapine to get some sleep and ease the anxiety as I finally weaned myself all the way off of the Ativan. You can see the cycle here. I get put on one drug to wean me off of another. It seems endless. I'm sure many people here can relate. I NEVER needed medication prior to the entire breastfeeding drug debacle. In any event, the Mirtazapine provided such welcome relief and AMAZING sleep!! But I began to gain some weight and decided that I no longer wanted or needed to be on meds. I felt stable and was ready to be drug free. So my doc quickly tapered me off of 15 mg mirtazapine (over a few weeks) and we decided to swap that out for trazadone, as needed (since it's "non habit forming"). And actually, that went smoothly as well. I only took the trazadone for a few weeks, and then I was FREE OF MEDS for almost 3 months!!! So from Jan 2018-March 2018, I was sleeping well on my own (with some melatonin here and there) and feeling like my old happy self. I was so grateful and relieved to have this all behind me. I REALLY thought I was done with all of this crap. Then in March of this year, I had taken 5 mg of melatonin 5 nights in a row (while on a vacation, after witnessing a man have a fatal heart attack on the beach) and my sleep fell apart...and the anxiety, brain fog, irritability, and other symptoms slowly crept back in. I was shocked!!!! I thought I was past this. This didn't feel like my normal anxiety...it felt like withdrawal!!!! So what now? You guessed it. As of late March, my doc convinced me to take Mirtazapine again (but I'm trying to hold out at between 3.25 -7.5 mg per night). I tried just doing 1.25 for the first two months, but it began pooping out on me at that low dose. The problem is: my sleep is still TERRIBLE!!! I have about 2 good nights per week (if I'm lucky) and the other nights, I am getting anywhere from 0-2 or 3 hours. It's torture. I wonder if the different doses on different nights is really messing with me. My psychiatrist didn't seem to know. I'm a working Mom (and have a 5 year old and 2 year old and a husband) and I am in such bad shape. I actually just took a leave from work and feel so much shame around it. I've never taken a leave before (other than to have my babies). My anxiety has crept back in, but so has a terrible depression, and some pretty dark thoughts. Have I ruined my life? I can't seem to get past this. It feels like a never ending cycle and I'm afraid I won't get my brain back. It's hard for me to feel joyful and loving with my kids when I feel so detached, exhausted, and in despair. That's probably the hardest part. I feel so alone and so baffled by what has all happened in the past two years...all because I wanted to nurse my daughter. My brain is telling me that I should reinstate the Mirtazapine at around 7.5 nightly until I stabilize and maybe chill out there for at least a month or so. Then I should begin a very slow and methodical taper. Is there a link on here on how to do this if I take that pills? Will I need to purchase a scale and a pill grinder, and create my own liquid suspension? I can't believe this is what my life has come to!!!! I am just in agony. Please...if anyone has any HOPEFUL words or useful tips, please share. Only positivity here, please. No judgment. Fast forward
  10. Hi all, This is my short story... 06/2016 - 11/2016 - Domperidone for increasing breast milk supply (30mg-60mg was my daily dose) 11/2016 - I stopped Dom. cold turkey (30mg) => my life was in ruins...terrible strong withdrawal sypmtoms: anxiety, panic attacks, heart palpitations, intrusive thoughts, trouble sleeping, headache, vertigo, fatique, body pain and spasms, low appetite, etc. etc. etc..... These problems are improving and disappearing and some of them re-appearing again to a lesser extent. I can say that overall I am better than a year ago. But still it is not my old myself. I am very sensitive to stress and any changes in my life (for example to weather changes too). I refused any psych. treatment. My problems are clearly due to stopping Domperidone. I have never taken antidepressants, benzos or other psych stuff in all my life except for Domperidone. I have no psychiatric history. Please...ask all of you (especially breastfeeding mothers) to avoid this dangerous drug. There are FB groups where mothers give advices how to take it, where to buy it, etc...It is one big dirty bussiness with health. And what now? I will still fight... Sorry for my English...
  11. Hello I have been taking sertraline 100mg for 2.5 years and am starting a 10% of previous dose cut and hold style taper from 75mg. I cut to 75mg in October 2018 on advice from my therapist to alternate 100/75 for a month and then hold at 75, but I started experiencing WD symptoms in waves and have held at 75mg since that time while I have researched tapering. When I started having these WD symptoms I finally feel as though I had confirmation that my original symptoms for which I was prescribed sertraline were actually WD symptoms for a drug domperidone (see bottom of post for details) which I was prescribed off label as a lactation aide. These more recent WD symptoms I have experienced are a mild version of what I experienced initially. My initial thoughts at the time were that domperidone was the culprit, but after raising this with several doctors I was told that I was experiencing anxiety/PND/panic disorder which I eventually accepted. This led to spending two months in a psychiatric ward and being prescribed sertraline. I have seen that a few users here had the same reaction to weaning off domperidone as I did. So my theory is that going on and off a high dose (120mg) of this drug twice in a month was the start of this. I hope that because I am 2.5 years on from this experience it won't be factoring in to what's happening now, but I'm putting it here so you all know about it. So, my plan is to do a 10% taper from 75mg and just hold until stable each time. My main symptom is I think a kind of kindling thing? My nerves just feel like they are all switched on and overreacting to everything. The post about PGAD resonates with me, but I think I feel it because all my nerves are sensitised. And the other one is GI related. My theory is my vagus nerve gets irritated and I get pain, heartburn and diarrhoea but no nausea. I get some dizziness, and feel a bit disconnected to reality in the worst bits. My strategies for coping are tapering slowly, mindfulness and meditation, a small daily dose of magnesium, I've just started some yoga. Anyway, I'm going to hang around here while I taper and hopefully contribute some useful information and support! Nice to meet you all and thank you for existing!
  12. HI, I'm brand new to this site. I've had a hard couple of years. It started with a drug called Domperidone. It is a drug that inhibits dopamine. It's widely prescribed off lable (although not in the US, but a nurse told me about how I could get it from a site in Montana) for increasing milk production in lactating mothers. While I was taking it I started to feel a deep internal "itch". I felt it first in my lower abdomenal area. I went off of this drug too quickly--I didn't know it would be so serious, but I know now that it was like stopping an anti-psychotic drug too quickly--everything went haywire. Terrible depression and insomnia set in immediately. So I got Zoloft. I took that for 2 weeks and slept less and less until I was up for a week straight and checked into a psych hospital for 3 days. After that I tried to stay off Psych meds, but I had recurrent insomnia and depression that came in waves. I was given benzodiazapines, mirtazapine, amiptriptylene, ambien, and others in the next few months. It was suggested to me by a couple of friends that maybe I had bipolar disorder, so I sought out a diagnoses in the hopes that I could get on a mood stabilizer and "feel fabulous". So I started Lamictal. I started having itching again 2 weeks after starting it, but not on my skin. It was internal--in my stomach, chest, bladder, heart, spine, and back. I had this sensation off and on for the year that I took Lamictal. I also still had to take a small dose of Klonopin every 3 days or so to sleep. Seroquel was in there at the beginning too. The itching and not sleeping were getting worse, so I quit Lamictal and Klonopin slowly. Then I started Risperdal in January. That is when I learned about protracted withdrawal syndromes and the recovery movement. I no longer think I had bipolar disorder. It is clear to me that these drugs can devastate the brain, and that is what made me sick. Even though I have been off of Lamictal for 6 months now I still have the itching dysesthesia sensations just about every day around 2 pm. I'm hoping someone can shed light on what is going on. I have nearly tapered off of the small dose of Risperdal that I began in January, and my mood symptoms are 99% gone, but I still have this itching symptom. I've been going on the assumption that my nervous system was damaged by these drugs, and that the itching is caused by that. I've searched high and low for someone who has this symptom, but I can't find anyone who knows for sure what it is. No diseases seem to have it listed. If it's a drug side effect or a withdrawal side effect I can handle that. I am just afraid that it may be some other disease that I am neglecting because I'm assuming it's a med effect. My PCP and Psych doctors have no knowledge of this kind of symptom. I've had an X-ray of my chest. I've had all kinds of tests, so I am trying not to freak out. Has anyone else had this? Thanks for your kind support!
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