hankhzs for Carrie: Domperidone withdrawal and Lamictal withdrawal

[hankhzs]

Hi everyone, I'm posting here to ask question for my wife who was just completed off of domperidone for 3 weeks and in the process of tapering Lamictal.  Domperidone is not a typical antidepressant but it blocks dopamine receptors making them supersensitive. It gives her the same withdrawal effect as that of antidepressant. She's now suffering depression, anxiety/panick attacks,  severe insomnia, nausea, palpitations, hypertension. She has read a lot of info, some encouraging, some discouraging. She thought she should stop browsing infos on her symptom to avoid too much mood swing.

 

Here's a brief history:

Early 2018, Carrie started to take domperidone at 160mg per day prescribed by a lactation doctor for boosting her breast milk for breastfeeding. We live in Canada, doctor can use domperidone for that.

She took domperidone for 11 months at 160mg per day, then started taper off at 1 pill (10mg) less per week. When she's at 50 mgs per day, she started to feel anxiety, only in the morning upon waking and disapear once she left for work. She searched on youtube and learned there's a thing called morning anxiety. So she started to deal with this by deep breathing and walking outside. Symptom would relief a bit, and lift away during the day. However, as she continue to drop the dose, her symptom got worse to the point that she started to think it's her job giving her too much stress, so she quit her job. That didn't help of course. When she's at 0 pills, she lost the ability to sleep and became severely depressed. I started to think whether this is due to domperidone withdrawal. After some brief google, we learned this would be the result of domperidone withdrawal. So she started to take 60mgs of domperidone per day again as that's when she started to experience the symptoms. However, that only helped for 2 weeks and the symptoms showed up again. The symptoms are anxiety, palpitation, depression, insomnia, nauseous. Among those, depression is the lastest to come in every episodes and the first to go away. So whenever she has depression, i knew it's really bad for her.  Symptoms came in waves and after hanging there for 5 weeks at 60mg with no improvement, then at the advice of her doctor, she started to take Lamictal to relief the withdrawal symptoms of domperidone and begin to taper off domperidone because it's causing her low potassium which worsen her symptons. She took  25mg lamictal and increased to 37.5mg per day after 4 weeks. It helped her going through the tappering process of domperidone by taking  5mg less every week for 12 weeks in total. Symptoms would come back during this period, but she didn't have any prolonged depression. 

 

She had a wave of symptons 3 days after stopping domperidone which got better in 2 weeks. 3 weeks after she's completely off of domperidone, she reduced her lamictal from 37.5mg per day to 35mg per day (the 35mg was done by taking 7 x 5mg lamotrigine chewable). We thought this would be a tiny drop, she wouldn't feel anything. However, this became an unbearable experience with all her symptoms came back including the depression. And the depression lasted a good 5 days for her unitl last night she finally felt the depression went away but she still has all her other symptoms. 

 

We spoke with our family doctor again today. The doctor suggests her to take Lamictal back to 37.5 mg (with regular pill not the chewable ones as he didn't want her to drop it) and let her symptom stable for at least a month first. The doctor said she's still recovering from the domperidone withdrawal, and she should wait and be patient.

 

So based on Carrie's situation, she's wondering whether she should continue to stay at 35mg of Lamictal (after the almost 2 weeks of suffering), or listen to the doctor going back to 37.5mg. What can be considered as "stablized"? As there are various syptoms with various degree intensity. How long should she wait at a "stable" state before she proceed to taper off? Does taking chewable Lamictal affect the tapering symptoms? Carrie took the chewable for the first time and then the severe depression showed up after 4-5 days (other symptoms showed up immediately). I'm wondering whether something is different in the pills that caused this.

 

Thank you for taking the time to read this wall of text. Appreciate all advices. 

 

Hank

[Sassenach]

Hello     Hank   and welcome to SA.

 

This site is run entirely by volunteer Administrators and Moderators, all have been through or going through withdrawal.

There are no commercial interests or influences  involved .

 

I am sorry your wife ishaving such a rough time but you are now in the right place.

 

Please note we prefer to deal with the person who required our help if possible.

 

To begin we need information regarding your wife's drugs.

 

You have done good job of outlining her meds and doses but we need a timeline.

You can provide this in a simple format.

Drug/ date/ dose/ taper dates and percentages if possible.

Please all supplements.

 

Her doctor is doing better than most however he was responsible for her original taper which set the ball rolling.

Your wife is almost certainly suffering W/D.

The early taper off Domperidone was too fast and her CNS ( central nervous system) has never caught up.

This has been further exacerbated by dose changes of the Lamictal.

There is also the possibility of interdose withdrawal but one of our senior mods will need to look at that.

Please see the links below for info. on what is happening to your wife.

the-windows-and-waves-pattern-of-stabilization/

why-taper-by-10-of-my-dosage/

the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

dr-joseph-glenmullens-withdrawal-symptom-checklist/

In the meantime your wife should continue taking her current dose of Lamictal.

 

As soon as we recieve the drugs info. we can assess your situation.

In the meantime DO NOT MAKE ANY CHANGE TO YOUR CURRENT MEDS please.

Please feel free to browse the site, it is a wealth of info.

Other members threads will give you an insight and the opportunity to share experiences.

 

Again welcome.

 

Sassenach

 

[Rhiannon]

On 11/2/2019 at 7:35 PM, hankhzs said:

 

Early 2018, Carrie started to take domperidone at 160mg per day prescribed by a lactation doctor for boosting her breast milk for breastfeeding. We live in Canada, doctor can use domperidone for that.

 

Excuse me while I step outside and scream at the top of my lungs.

 

 

 

I mean, I always liked La Leche League's advice for increasing milk:  Go to bed with the baby for a few days and nurse as much as you can. Have dad and friends and grandma take care of the other kids and the housework for a while, and just rest, nurse as much as possible, pump a little if that works for you. Supply and demand, there's a mechanism whereby the more you empty the milk out of the breast, the more milk will be produced.  It's pretty straightforward. I mean, evolution KINDA designed lactation to be a thing that works pretty well, mammals are doing pretty well on this planet BUT NO LET'S GIVE HER A DRUG SURELY WE CAN IMPROVE ON THREE BILLION YEARS OF EVOLUTION YEP YEP YEP

 

Forgive me, I know that you must have been struggling for this solution to have been proposed, and I am not blaming you. New parents really want to do the best thing they can for their babies and will try almost anything if they think it will help their baby. But it's a good thing your doctor's not here in this room with me right now.

 

As far as advice, you will get excellent advice here. If your wife doesn't have any other history of taking drugs that screw around with neurotransmitters, she does have a bit of a journey ahead and needs to be cautious about how she walks that path, but she has a very good chance of recovering fully as long as any future tapers are done slowly and she doesn't make any abrupt med changes.

Edited November 9, 2019 by Sassenach

[hankhzs]

9 hours ago, Sassenach said:

You have done good job of outlining her meds and doses but we need a timeline.

You can provide this in a simple format.

Drug/ date/ dose/ taper dates and percentages if possible.

Please all supplements.

 

Hi Sassenach, thank you for responding. My wife has read your reply, I'm sure at some point she will be willing to communicate directly with you guys. She's too busy doing her self mediation and trying to get sleep every night. (most of the time she's just laying in bed without actually sleeping). 

 

I have summarized her timeline below, I will be as detail and concise as I can:

Domperidone / April 1, 2018 - Feb 2019/ 160 mg per day for 11 months/ no taper

Domperidone/March 2019 - June 2019/160 mg per day /Started tapering Domperidone by reducing 10mg per week down to zero 

Domperidone/June 2019-July 2019/60mg per day/2 days after stopping reinstate due to unbearable withdrawal and stayed there for 5 weeks with windows and waves

Domperidone/July 2019 - October 2019/60mg per day/ tapering domperiodone at 5mg every week down to zero as it's giving her bad side effects and all doctors suggest that (depleting her potassium)

Lamictal/July 2019 - now/started at 25mg per day for 4 weeks and increased to 37.5mg per day. Reduced to 35mg from Oct 24, 2019/only reduced once at 6.6%

 

Supplements and other drugs - 

Potassium - 600mgx3 or 4 times a day (during tapering of domperiodone, bloodwork repeatedly shows low potassium, potassium is still on the low range even with supplementation even weeks after stopping domperiodone)

Melatonin - 1.5mg to 3mg as needed

Benadryl - 25mg to 50mg as needed - 1-3 times per week depending on severity of insomnia

Zopiclone - took in total of eight 5mg pills so far since beginning of experiencing withdrawal. Try not to use it at all. 

 

Hope these info helps. 

Thanks,

Hank

[hankhzs]

1 hour ago, Rhiannon said:

Forgive me, I know that you must have been struggling for this solution to have been proposed, and I am not blaming you. New parents really want to do the best thing they can for their babies and will try almost anything if they think it will help their baby. But it's a good thing your doctor's not here in this room with me right now.

 

Yea, now we realized taking medicine to boost milk supply was a really bad idea, but at that time, it seems to be a great solution. No one educated us about the withdrawal and there is very limited information on Domperidone withdrawal on the internet.

[Sassenach]

Hi Hank.

 

As Rhiannon has had her rant I need not do so now.

She is however totally correct.

Time after time we see docs and psychs believing a pill is better than nature, or trying to find and treat an underlying course.

Your wife is definitely in W/D because of all the dose changes.

12 hours ago, Rhiannon said:

she has a very good chance of recovering fully as long as any future tapers are done slowly and she doesn't make any abrupt med changes.

This is spot on and had she not been given Lamictal she would be further down the recovery route.

 

On 11/2/2019 at 7:35 PM, hankhzs said:

let her symptom stable for at least a month first

It will take more than a month for her to stabilise fully before tapering off these drugs one at a time in the future.

As for insomnia, your wife is currently taking 2 sleeping aids with Zopiclone in the background.

Zopiclone is a Benzo and is highly addictive and taken intermittently will complicate your wife's stability.

11 hours ago, hankhzs said:

Melatonin - 1.5mg to 3mg as needed

Benadryl - 25mg to 50mg as needed - 1-3 times per week depending on severity of insomnia

Taking more than one sleep aid can cause a parodoxical reaction causing the body to fight back against sleep.

Again it is important to keep doses and times regular.

I am going to create a report to our senior mods as I know very little about Domperidone .

I will also ask that they look at any possible parodoxical reaction.

They will need to know your wife's current symptoms, are they better or worse at any particular time of day?

Your posts will no longer require approval and will appear immediately.

Incidentally having a supportive partner is a major help during recovery.

 

Sassenach

 

 

[Altostrata]

Welcome, hank.

 

How long has your wife been taking 35mg lamotrigine?

 

Does she have any domperidone left? In what form was the domperidone -- capsules, tablets, etc.?

[hankhzs]

13 hours ago, Sassenach said:

Taking more than one sleep aid can cause a parodoxical reaction causing the body to fight back against sleep.

Thank you so much for the advice. My wife is reading this thread on and off. Her insomnia still persist, and she is very concerned about her sleeps. So she will only take Benadryl twice a week max just so she can have some relief from insomnia.

 

8 hours ago, Altostrata said:

How long has your wife been taking 35mg lamotrigine?

 

Does she have any domperidone left? In what form was the domperidone -- capsules, tablets, etc.?

 

Hi, My wife had been taken 35mg lamictal per day for 2 weeks and today she went to her orignal dose of 37.5mg due to inable to stablize her symptoms after two weeks. At the end of the day today, she still has nausea, palpitations, and insomnia. Her symptoms were much milder before she dropped her lamictal dose. Now she has got back to her normal dose of 37.5mg, would that be sufficient for her to reach her milder condition like before?

 

She no longer takes domperidone as 5 weeks ago. So she's completely off of domperidone now, but still requires Lamictal to relief the withdrawal effects. The domperidone was depeleting her posstasium everytime she tested her blood, causing her heart problem. Also, she tried to increase domperidone as a relief before, that didn't help. So it is not an option for her to get back to domperidone. 

 

Thank you for all of your advices. Carrie will be continuing following this thread.

Hank

 

 

[Altostrata]

1 hour ago, hankhzs said:

Her symptoms were much milder before she dropped her lamictal dose. Now she has got back to her normal dose of 37.5mg, would that be sufficient for her to reach her milder condition like before?

 

I don't know. If she feels ill after taking Lamictal, 37.5mg might be too much. What time of day does she take it? Did you say she has 5mg tablets?

 

In what form and dosage was the domperidone -- capsules, tablets, etc.? If she takes a crumb of it, it may stop the withdrawal symptoms without causing the issue with potassium.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

[hankhzs]

9 hours ago, Altostrata said:

I don't know. If she feels ill after taking Lamictal, 37.5mg might be too much. What time of day does she take it? Did you say she has 5mg tablets?

 

In what form and dosage was the domperidone -- capsules, tablets, etc.? If she takes a crumb of it, it may stop the withdrawal symptoms without causing the issue with potassium.

After taking 37.5mg lamictal, her symptoms didn't improve but they didn't get worse. She was taking 25mg Lamictal before she began taper the domperidone, and that's enough to control her symptoms. However, when she started tapering the last 60mg of domperidone, she had to increase Lamictal to 37.5 just to avoid the depression and that's marginally enough for her. There would be other symptoms still, but she can bear with all other symptoms. Depression is really unbearable for her as it will completely mess up her mood and thoughts. 

She has the 5mg chewable lamictal for tapering purposes, but now she's just taking regular Lamictal which is 25mg a pill, and she takes 1 and a half pill everyday in the morning around 7am.

 

She flushed all of her domperidone into toilet as soon as she was complete off of domperidone, as she never want to get back to that evil drug. When tapering, she was scared of the drug but felt compulsed to take the drug. 

 

Now she's wondering with her 37.5mg Lamictal dose, would she be able to stabilize again? Or does she require more than that? It seems she had enough of insomnia and nausea which made her life quality suffer greatly. 

 

I will add her drug history in the signature block when I get to a computer. 

 

Thank you. 

Hank

[Rhiannon]

On 11/5/2019 at 7:40 PM, hankhzs said:

 

Yea, now we realized taking medicine to boost milk supply was a really bad idea, but at that time, it seems to be a great solution. No one educated us about the withdrawal and there is very limited information on Domperidone withdrawal on the internet.

Yes, absolutely. Good, loving parents worry about any problems and will do anything if they are told it will help their babies. I don't blame you. I am just angry at your doctor, and at whoever taught your doctor. Sometimes medicine is the opposite of what it's supposed to be.

[Altostrata]

What time of day does she take Lamictal? Is she taking it in 5mg tablets? In the hours after she takes it, does she regularly get any particular symptoms, better or worse?

 

Carrie -- Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, with a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

[hankhzs]

On 11/7/2019 at 12:56 PM, Altostrata said:

What time of day does she take Lamictal? Is she taking it in 5mg tablets? In the hours after she takes it, does she regularly get any particular symptoms, better or worse?

 

Carrie -- Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, with a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

Hi Altostrata, here is a daily log from Carrie that's on Friday. Yesterday (Saturday) we spent a whole day at hospital due to depression and her confidence and mood meltdown. She talked to crisis worker  but that didn't help. They apparently don't understand withdrawal.

Friday's log

0600 hrs: woke up with adrenaline surge

0640 hrs: 37.5mg Lamictal

7:40 600mg potassium after breakfast

6:00-11:00 anxiety, palpitations, and obsessive thinking about not able to make it, some consistent nausea

11:12:15 walk outside and anxiety lift a bit

12:30 Lunch and 600mg potassium, fast heart rate (80-90) Norm is around 70 so she feels the fluttering in her heart whenever it's over 80

13:00-15:00 anxiety and obsessive thinking

17:20 Dinner and 600mg potassium. Appetite a bit improved.

15:00 to 20:00 no other symptoms but fast heart rate persist

8:30pm took tylenol 500mg for menstrual cramps

8:15pm-11:00pm anxiety, obsessive thinking and palpitations

11:00-2:00am lay on bed but couldn't fal asleep

2:00-5:00 sleep

5:00 woke up with Andrenaline surge, pounding heart, panics (this is a daily symptom. she wakes between 4:00 to 6:00)

Felt so scared she won't get better and worried she may need to take antidepressant for life. Obsessive thinking about the whole situation and ended up going to ER at 6:00

 

 

 

[Altostrata]

If she frequently has nausea at about the same time of day, I believe that may be an adverse effect of Lamictal.

 

She may also be getting interdose withdrawal from Lamictal, in early morning. Lamictal has a short half-life; immediate-release Lamictal is often taken twice a day.

 

I would move 5mg Lamictal from morning to evening by taking 32.5mg at the usual around 7 a.m. and 5mg at 9 a.m., then move the 5mg an hour later each day until she's taking 5mg at around 7 p.m.

 

As Carrie's nervous system might be upset, I suggest this very gradual change so as not to upset it further. Carrie, please keep daily notes throughout this process.

 

follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[Sassenach]

Hi Hank

 

I have completed Carrie's drug signature as Alto requested.

Please check and confirm it is correct or amend accordingly.

[A123]

Hi Hank,

 

I am 1 of relatively cured of Domperidone withdrawal. Look at my history. I was in a terrible state. It took me almost 3 years to get out of it. Your wife primarily still fights with  Dom withdrawal. It is like I feel about myself...Although taking other supportive medicines (sleeping pills, etc.), domperidone withdrawal is extremely strong. I also communicated with other women who went through it. 

 

She has all the typical symptoms: intrusive thoughts, anxiety, depression, panic attacks, tachycardia, trouble sleeping, strong morning anxiety, waves and windows...and so on...What to say? Terrible, terrible drug....

 

But! Symptoms will fade over time. She must to learn to live that. She will get out of it...gradually. Patience and love. It will probably be a long journey...

 

The best medicine:  TIME TIME TIME

Supportive treatment: Music, some kind of sport (yoga, etc.) , outdoor walking...(everything that removes the thoughts or requires a focus) and avoid stressful situations...

 

I think of you and I wish you a lot of strength...

 

 

 

 

 

[hankhzs]

41 minutes ago, A123 said:

Hi Hank,

 

I am 1 of relatively cured of Domperidone withdrawal. Look at my history. I was in a terrible state. It took me almost 3 years to get out of it. Your wife primarily still fights with  Dom withdrawal. It is like I feel about myself...Although taking other supportive medicines (sleeping pills, etc.), domperidone withdrawal is extremely strong. I also communicated with other women who went through it. 

 

She has all the typical symptoms: intrusive thoughts, anxiety, depression, panic attacks, tachycardia, trouble sleeping, strong morning anxiety, waves and windows...and so on...What to say? Terrible, terrible drug....

 

But! Symptoms will fade over time. She must to learn to live that. She will get out of it...gradually. Patience and love. It will probably be a long journey...

 

The best medicine:  TIME TIME TIME

Supportive treatment: Music, some kind of sport (yoga, etc.) , outdoor walking...(everything that removes the thoughts or requires a focus) and avoid stressful situations...

 

I think of you and I wish you a lot of strength...

 

 

 

 

 

Thank you for your support, I'm a bit worried to tell my wife that it can take as long as 3 years to recover, that's going to be more stressful for her rather than encouraging. She's in a relatively long window right now after she restarted taking 37.5mg Lamictal per day. This window is getting into 4th week, she never had a window that's more than 3 weeks long, so this is a very encouraging sign for her. I know anything can kick start another wave for her. I hope this window can be as long as possible. 

 

[hankhzs]

On 11/10/2019 at 1:30 PM, Altostrata said:

If she frequently has nausea at about the same time of day, I believe that may be an adverse effect of Lamictal.

 

She may also be getting interdose withdrawal from Lamictal, in early morning. Lamictal has a short half-life; immediate-release Lamictal is often taken twice a day.

 

I would move 5mg Lamictal from morning to evening by taking 32.5mg at the usual around 7 a.m. and 5mg at 9 a.m., then move the 5mg an hour later each day until she's taking 5mg at around 7 p.m.

 

As Carrie's nervous system might be upset, I suggest this very gradual change so as not to upset it further. Carrie, please keep daily notes throughout this process.

 

follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

Hi Altostrata, my wife's symptoms are a lot milder than before. Her last wave of symptoms happened two weeks ago which only lasted 4 to 5 days with only insomnia and nausea. Now, she has been able to sleep without waking up in the middle of the night. And she still feels some manageable level of palpitation everyday. This palpitation feeling is only noticeable to her when she's not doing anything. Carrie wants to know if she can start to taper off Lamictal if she still has the minor palpitation feeling on and off on daily basis. If the symptoms are consistent for a month neither improving nor deteriorating, then can she start her taper safely? In her mind, she's thinking that waiting for her to be absolutely symptom free would be too long, she doesn't want to take more Lamictal than necessary. 

Thanks for your help. 

[Altostrata]

It's a little premature to think of going off lamotrigine. Let her nervous system settle for a few months at least, make sure stability is a real habit.

 

I need to see daily symptom notes, like you posted on November 10. When did the palpitations symptom start? Are they better at some times than others? Have they increased or decreased with the lamotrigine dosage change?

 

Please ask Carrie to note times of worst palpitations.

[Tfalkris]

@hankhzs

Hello.  I am also going through the Domperidone withdrawal.  Can you give me an update on how your wife is doing?

Looking for support. 

Thank you!