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pharmharmed: Mirtazapine nightmare to harm reduction advocacy

Featured Replies

Hi everyone,

My name is Emma, I'm from Ireland, and I experienced antidepressant harm as a result of being prescribed mirtazapine. As a result, I am now campaigning for change in the Irish healthcare system and advocating for informed consent for all patients. If you thought the UK doctors were bad when it comes to deprescribing, welcome to Ireland! I joined Antidepressant Recovery to share my story, learn from others, and also invite other Irish people to consider volunteering in sharing their own story with me in the hopes I can share them on my site once it launches. The website centres on antidepressant withdrawal (acute and protracted) and iatrogenic injury, with emphasis on akathisia induced by antidepressants and antipsychotics (but also gapapentinoids, antibiotics and antiemetics) and guidance for clinicians on safe tapering in line with the Maudsley Deprescribing Guidelines. I am looking for stories from those who have had personal dealings with the Irish or Northern Irish healthcare system. As I wait for domain approval, I would love if anybody who lives in Ireland, is from Ireland or knows someone from Ireland who experienced psych drug harm could get in touch with me.

I will keep my own story as brief as I can. I was never on any mental health medication for my whole life before mirtazapine, in fact I was very averse to pharma. I was a natural remedy junkie, and believed that I had all the power to heal my body. I had caught covid before and developed long covid for a few months, but managed to clear it up with a supplement regime. I figured I had it all under control. That all changed when I caught covid for the second time in September 2023, and by April 2024 it had become a neverending long covid nightmare, far more severe than before. Unable to sleep at night for waking up out gasping for air (I was having adrenaline dumps and histamine overload), my doctor prescribed me 7.5mg mirtazapine. Initially I thought it was a miracle drug. I was able to sleep the whole way through the night, I got my appetite back. But I was still suffering from a heap of long covid and chronic inflammation symptoms during waking hours. A month in and I started to get side effects, a feeling of restlessness in my arms before I would go to sleep. I decided I wanted to come off the mirtazapine, as I felt wanted to attempt a natural approach to my long covid again. My doctor simply suggested to take every other day and then jump off. When I did, I started to get a relapse of some of my old long covid symptoms. So I reinstated.

Not knowing the harms, I went through multiple failed CTs in the space of a month. Then I took an antihistamine one day, and all hell broke loose. I had a horrendous adverse reaction: all the blood began to pool in my legs and wouldn't go back up. I ended up on blood thinners for clots. I also started getting weird neuro issues. I thought that maybe the mirtazapine was making it worse, so I came off again, on doctor's advice. Withdrawal and kindling hit me like a freight train. I had horrendous akathisia and intrusive thoughts, terror, panic.

I made an emergency appointment with the only available doctor and told him what had happened. That I had a reaction to an antihistamine and that I had CT'd the mirt again. I was sitting in a chair, rocking back and forth. He asked me had I thought of harming myself. I said yes. He then said "I don't think you had an averse reaction to the antihistamine because it would be out of your system by now. What is clear to me is it seems like your anxiety is very bad. Go back on the mirtazapine 7.5mg, and updose by 50% weekly for the next three weeks." He had NO idea I was presenting with akathisia!! I told him I didn't originally have anxiety and that I was only prescribed mirt for sleep, but he dismissed me. I praise God for giving me intuition because I told him I didn't feel stable enough to be updosing like that. So he said fine, take a smaller dose, and gave me a syringe and a soluble tab and said to take 3.75mg in water and updose the next week.


I took 3.75ml and I knew instinctively something was terribly wrong. The mirtazapine flakes were falling to the bottom of the glass jar, and what did hit my system hit me like a truck.The combination of the brand change, the formula and the withdrawal threw me into the most horrific akathisia. I could no longer sleep for waking up with hypnic jerks. I would pace around my garden like a wild animal, or be walking the streets from 5am for hours in absolute terror. I couldn't even nap during the day because I would be jolted out of my sleep the second I would drift off. The absolute soul crushing terror was unimaginable. I wanted to jump out of a window and I ended up self harming. I was calling crisis helplines daily. Then I found the mirtazapine Facebook group, shared my story, and they helped me change my formula to their maple syrup recipe using my original pills- not the soltab. Immediately I stabilised. The akathisia subsided, but because of the amount of nervous system kindling, I experienced waves consistently and am still stabilising 2 years on. For the most part, I am stable, but still experience very subtle waves.

I have not reduced from 3.75ml, and have no intention of doing so at this time because I still have long covid (the remaining mirtazapine is the only antihistamine I can take) and I feel like I have PTSD from my experience. I know I will have to taper again in the future, but I am trying to buy myself time as I still get waves especially when introducing new supplements - it has taken me over a year just to be able to tolerate magnesium again.

I was lucky to be able to book a consult with Dr. Mark Horowitz during this dark period of my life. I bought a copy of Maudsley Deprescribing Guidelines and have been studying it, as has my doctor who has told me she will be ready to support me when I choose to taper. She still denies any wrongdoing, but I appreciate that she is open enough to work within the guidelines. My hope is that my situation will save her other patients, though I do wish she would refer the other doctor to the guidelines also (perhaps wishful thinking). I have spent the past 2 years educating myself on withdrawal, akathisia and iatrogenic harm to the CNS from antidepressants including SSRIs, SNRIs, NaSSas, benzos...which is why I am launching a website of my own to minimise harm and would appreciate if there happens to be any Irish members on here, please get in touch.

Thank you for creating this space. I know for a fact that if it wasn't for online support groups, I would not be here today. And that is an absolute travesty.

-Emma

April 2024: Prescribed mirtazapine for sleep issues associated with long covid. 7.5mg.

May 2024: Started having side effects (mild aka), advised by doctor to alternate days and CT.

July 2024: Anxiety after CT. Took chlorphenamine antihistamine, severe adverse reaction. Reinstated mirtazapine 7.5mg.

Early August 2024: CT'd mirtazapine again on doctor's suggestion. Moderate akathisia, intrusive thoughts.

Late August 2024: Reinstated mirtazapine again, 3.75mg. Brand change. Severe vomiting, catastrophic akathisia

September 2024: Found mirtazapine support group. Switched back to original brand. Found homemade taper recipe. Akathisia resolved

September 2024-present: Stabilising, still experiencing waves, yet to taper. Still have long covid.

  • Chippy changed the title to pharmharmed: Mirtazapine nightmare to harm reduction advocacy

Welcome to the forum!

 

This is a volunteer-run, community forum aimed at helping those who are tapering and/or experiencing difficulties with psychiatric medications and withdrawl syndrome. We are not medical professionals and cannot offer medical advice. We simply offer support and opinions which you could use as talking points with a medical provider knowledgeable in withdrawing off psychiatric medications.

 

Please familiarise yourself with the forum rules and the disclaimer located here: Guidelines

 

Please make sure your signature is kept up to date with your drug history. This will allow members to see some basic information about your drug history and situation so that they may help you best. Information on how to do this is located in the FAQs section above, but here is a direct link: Update Signature

Once this is done, future posts made by you will have this signature turned on by default. For this reason please keep it clear but condensed as possible.

Please use the format outline here Preferred signature/drug history format

12 hours ago, pharmharmed said:

My name is Emma, I'm from Ireland, and I experienced antidepressant harm as a result of being prescribed mirtazapine. As a result, I am now campaigning for change in the Irish healthcare system and advocating for informed consent for all patients. If you thought the UK doctors were bad when it comes to deprescribing, welcome to Ireland! I joined Antidepressant Recovery to share my story, learn from others, and also invite other Irish people to consider volunteering in sharing their own story with me in the hopes I can share them on my site once it launches. The website centres on antidepressant withdrawal (acute and protracted) and iatrogenic injury, with emphasis on akathisia induced by antidepressants and antipsychotics (but also gapapentinoids, antibiotics and antiemetics) and guidance for clinicians on safe tapering in line with the Maudsley Deprescribing Guidelines. I am looking for stories from those who have had personal dealings with the Irish or Northern Irish healthcare system. As I wait for domain approval, I would love if anybody who lives in Ireland, is from Ireland or knows someone from Ireland who experienced psych drug harm could get in touch with me.

Hey Emma very nice to meet you. My wife is half Irish :) I am sorry to hear you were harmed by Mirt, me too. Many others here were as well. Awful drug. I love you are doing your bit to help the community.

Feel free to link any resources in a topic in the advocacy section, you could link this in your signature too so others may see it.

Perhaps you might link our site on your new site as folk may find our more Global community helpful as well.

12 hours ago, pharmharmed said:

will keep my own story as brief as I can. I was never on any mental health medication for my whole life before mirtazapine, in fact I was very averse to pharma. I was a natural remedy junkie, and believed that I had all the power to heal my body. I had caught covid before and developed long covid for a few months, but managed to clear it up with a supplement regime. I figured I had it all under control. That all changed when I caught covid for the second time in September 2023, and by April 2024 it had become a neverending long covid nightmare, far more severe than before. Unable to sleep at night for waking up out gasping for air (I was having adrenaline dumps and histamine overload), my doctor prescribed me 7.5mg mirtazapine. Initially I thought it was a miracle drug. I was able to sleep the whole way through the night, I got my appetite back. But I was still suffering from a heap of long covid and chronic inflammation symptoms during waking hours. A month in and I started to get side effects, a feeling of restlessness in my arms before I would go to sleep. I decided I wanted to come off the mirtazapine, as I felt wanted to attempt a natural approach to my long covid again. My doctor simply suggested to take every other day and then jump off. When I did, I started to get a relapse of some of my old long covid symptoms. So I reinstated.

I was the same really, very happy chappie before Mirt. I am sorry to read all of this, covid can really mess with the nervous system for sure, long covid can often look a bit like WD and I think two can interact imo. I suspect getting covid 8 months off worsened me.

12 hours ago, pharmharmed said:

Not knowing the harms, I went through multiple failed CTs in the space of a month. Then I took an antihistamine one day, and all hell broke loose. I had a horrendous adverse reaction: all the blood began to pool in my legs and wouldn't go back up. I ended up on blood thinners for clots. I also started getting weird neuro issues. I thought that maybe the mirtazapine was making it worse, so I came off again, on doctor's advice. Withdrawal and kindling hit me like a freight train. I had horrendous akathisia and intrusive thoughts, terror, panic.

I made an emergency appointment with the only available doctor and told him what had happened. That I had a reaction to an antihistamine and that I had CT'd the mirt again. I was sitting in a chair, rocking back and forth. He asked me had I thought of harming myself. I said yes. He then said "I don't think you had an averse reaction to the antihistamine because it would be out of your system by now. What is clear to me is it seems like your anxiety is very bad. Go back on the mirtazapine 7.5mg, and updose by 50% weekly for the next three weeks." He had NO idea I was presenting with akathisia!! I told him I didn't originally have anxiety and that I was only prescribed mirt for sleep, but he dismissed me. I praise God for giving me intuition because I told him I didn't feel stable enough to be updosing like that. So he said fine, take a smaller dose, and gave me a syringe and a soluble tab and said to take 3.75mg in water and updose the next week.

Wow, me too. Antihistamines certainly added to all this for me. Wish I knew better then.

Emma I am so sorry to read this. Your system just really snapped, all those kindling events just adding to the fire, when the nervous system goes it really does go like a forest fire. Just awful.

You did well here to realise his advice was wrong. We really need better understanding of drug harms from doctors, they only see relapse and worsening symptoms.

12 hours ago, pharmharmed said:

I took 3.75ml and I knew instinctively something was terribly wrong. The mirtazapine flakes were falling to the bottom of the glass jar, and what did hit my system hit me like a truck.The combination of the brand change, the formula and the withdrawal threw me into the most horrific akathisia. I could no longer sleep for waking up with hypnic jerks. I would pace around my garden like a wild animal, or be walking the streets from 5am for hours in absolute terror. I couldn't even nap during the day because I would be jolted out of my sleep the second I would drift off. The absolute soul crushing terror was unimaginable. I wanted to jump out of a window and I ended up self harming. I was calling crisis helplines daily. Then I found the mirtazapine Facebook group, shared my story, and they helped me change my formula to their maple syrup recipe using my original pills- not the soltab. Immediately I stabilised. The akathisia subsided, but because of the amount of nervous system kindling, I experienced waves consistently and am still stabilising 2 years on. For the most part, I am stable, but still experience very subtle waves.

I have not reduced from 3.75ml, and have no intention of doing so at this time because I still have long covid (the remaining mirtazapine is the only antihistamine I can take) and I feel like I have PTSD from my experience. I know I will have to taper again in the future, but I am trying to buy myself time as I still get waves especially when introducing new supplements - it has taken me over a year just to be able to tolerate magnesium again.

I am so pleased to see switching back to your OG tablet but in a solution helped stablise you. Basically you ended up RI on a lower dose. Good. Yes you will know when is best to start your taper and you are gonna want to feel ready and nice and stable for sure.

12 hours ago, pharmharmed said:

I was lucky to be able to book a consult with Dr. Mark Horowitz during this dark period of my life. I bought a copy of Maudsley Deprescribing Guidelines and have been studying it, as has my doctor who has told me she will be ready to support me when I choose to taper. She still denies any wrongdoing, but I appreciate that she is open enough to work within the guidelines. My hope is that my situation will save her other patients, though I do wish she would refer the other doctor to the guidelines also (perhaps wishful thinking). I have spent the past 2 years educating myself on withdrawal, akathisia and iatrogenic harm to the CNS from antidepressants including SSRIs, SNRIs, NaSSas, benzos...which is why I am launching a website of my own to minimise harm and would appreciate if there happens to be any Irish members on here, please get in touch.

Thank you for creating this space. I know for a fact that if it wasn't for online support groups, I would not be here today. And that is an absolute travesty.

Amazing, Love Dr H. Hero without cape.

Pleasure, anything we can do to help let us know, we are all in this together for sure.

 

In the mean time this is what I would do if I were you:

 

-Stay Hydrated 

 

-Eat a good clean whole food diet, avoiding processed foods and sugars.

 

-Stay away from caffeine, alcohol and antihistamines and any other psychoactive substances.

 

Supplements are to be avoided initially, as they often irritate our nervous systems. Try to get your nutrition through food.

 

Down the line, you may wish to introduce Fish Oil and Magnesium. Those who can tolerate them have found them calming to the nervous system. Be careful try one at a time and start low and see how you get on should you choose to try them.

 

A daily walk is very important as much as you can manage, if you can manage it. Gets you your fresh air and Vitamin D does wonders for your mind!

 

You are very welcome here and I hope you find the site supportive.

I’m not a medical professional and cannot offer medical advice. I only offer my thoughts as support. Please speak to your health practitioner about your care. This is a peer site where we support each other on our taper/recovery journeys. 

 

If you are from the UK please make sure you fill in a 'Yellow Card' report for the MHRA. It is you doing your bit to help make a difference.

Please take the time to do it today 🙂 https://yellowcard.mhra.gov.uk

For US members details here.

Welcome to the forum.

I was also severely harmed by mirtazapine. I've been doing what I can with the authorities in the UK but I believe that they're not acting in good faith at this point.

Nothing I say is medical advice, it is simply my opinion. I am an anonymous person on an internet forum with no relevant qualifications other than being badly harmed by a drug. For all you know, I could be an idiot. You are making your own decisions and part of that is deciding how much to listen to my opinion, if at all.

 

Perhaps you should consider this post an artistic work of fiction written for entertainment purposes.


Story from SA: LukeUK: Remeron/Mirtazapine Severe Withdrawal - Introductions and updates - Surviving Antidepressants

 

15mg Remeron/Mirtazapine November starting 2022 (severe physical side effects)

Attempted to taper off January 2023, ended up having a major breakdown and going up to 30mg, took weeks to stabilise

1 month taper  to 0mg

Last dose April 2023

Severe withdrawal syndrome with many physical symptoms

Summary: 5 months using Mirtazapine, including 1 month taper ending late April 2023.

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