slowphie: Hi, I am terrified

[slowphie]

Hello everyone.

 

I’m an Australian living in Berlin. I have had health anxiety since I was 12, but it never really impacted my life. 
 

From the age of 23-24 I had a depressive episode, went to therapy but decided to try medication. Was prescribed 37.5mg of desvenlafaxine, I took it for 10 months and tapered off rather quickly without incident - I had no idea that antidepressants could be dangerous back then. 
 

I’m 31 now. 2021 was the hardest/worst year of my life. After working a lot throughout the pandemic, I lost my job earlier last year. I was pretty miserable but slowly picked myself up. I was a sad but totally functioning human being. 
 

Mid year, I was working on my folio and getting excited about future creative projects. Then two weeks after my second Moderna shot, I woke up in the middle of the night shaking and having waves of heat come over me. Felt really sick… it was like some intense inflammation response. 
 

Following that, I would often wake up every 10 days or so with shaking episodes. I could manage to calm myself down and go back to sleep normally. I found it weird but tried not to think about it too much. 
 

Then in late August, I began taking antibiotics for a H. Pylori infection and my life imploded. 
 

I couldn’t sleep or eat for 2 weeks and became ridiculously anxious, anxiety I’ve never experienced before. My husband didn’t know what to do and I ended up in a psych hospital despite how badly I didn’t want to be there.

 

Despite my pleas and fears about benzo dependency, they got me dependent on lorazepam over 6.5 weeks, and I tapered off in about 5.5 weeks. Of course my worst fears became reality and I’ve been going through benzo WD. I took the last lorazepam dose 25 days ago (Which is hard for me to comprehend, I rarely even drink alcohol). 
 

I wish I had just accepted the benzo rebound insomnia and lack of appetite. I started Mirtazapine and have been on it for 2 months, I’m at 15mg now. 
 

My eyes have been weird, I’ve been getting double vision and things have just been strange. I thought it was from benzo WD but decided to get checked out today. 
 

The doctor told me my eye pressure is high, and this is a side effect from Mirta. I’m a graphic designer and my vision is so important. I desperately don’t want to lose it, I also don’t want to just CT Mirta, especially after I’m only 25 days in benzo WD.

 

I’m so terrified, I wish I would have just accepted the benzo rebound insomnia. Now I’m scared I’m going to be sick and disabled for years. 😭 I look at photos from 5 months ago and cry. 
 

I don’t know what to do. I’m sitting in bed shaking from fear rn. Someone, please help me 😞 when I mentioned my fears to the psychiatrist, he told me to split the Mirta pill in half, but idk if that’s a good idea. 

 

 

[Kiasofia]

Welcome @slowphie

I am sorry you are going through this and are suffering, but relieved you have found us. This forum is run by others like you who have been through and survived, or are surviving, the negative effects of psychiatric drugs.

 

As there are common misconceptions about how these drugs work I found this post helpful to understand what is going on:

How Psychiatric Drugs Remodel Your Brain 

 

How soon after starting mirtazapine did you start experiencing double vision? What other symptoms are you having? How is your sleep?

 

Ideally, after more than 4 weeks exposure, we advise testing with a 10% cut to see how you handle that. And then assess if you can reduce faster. However, if the reaction you are having is severe then a faster taper (with the risk of withdrawal) might be necessary. In that case, reduce by 50% and then 50% and then quit over a week or two.

Tips for tapering off mirtazapine (Remeron)

 

To help us better advise you, can you please create a signature with all of the drugs that you are taking and have been taking in the last couple of years following these instructions:

How to List Drug History in Signature

This is your Introductory topic, where you can ask questions and connect with other members.  We're glad you found your way here.

Edited January 5, 2022 by Kiasofia

[slowphie]

Hi, thank you so much for your response. I actually began having some vision difficulties in the hospital, but it was always brushed aside. They became more pronounced once I left the hospital, but by this point I was on Mirtazapine and tapering Lorazepam. My vision has become consistently double since I took my last Lorazepam dose 25 days ago. 😕 I’m so confused and don’t know what it causing what. 😞 I wish the doctor had warned me, I even mentioned my vision issues to him several weeks ago, and he was rather nonchalant about it. 
 

My sleep was okay up until the last 3 nights, I’ve been waking up after 3-4 hours shaking. I read quite a few stories about how dangerous Mirtazapine rapid tapers can be and my anxiety sky-rocketed. I rarely even drink alcohol, so comprehending the fact that I’ve been going through benzodiazepine withdrawal is really overwhelming, the thought of adding to this misery is - quite frankly - horrifying. 
 

I still have WD side effects like light tinnitus, muscle twitching, and the skin on my back regularly feel like it’s sunburnt. Luckily, many of the other acute WD symptoms have passed… but I’m not sure if Mirtazapine is masking them.  

[Kiasofia]

Unfortunately, when there have been many drug changes it is hard to know what is withdrawal and what is an adverse reaction and what drug is causing what.

 

Why were you prescribed Milnacipran?

 

Why was Mirtazapine started while you were also taking Milnacipran and Lorazepam?

 

Did the horrible side effects from Milnacipran start before or after you started taking Mirtazapine?

[slowphie]

Sorry I didn’t add that in my introduction. When I was in the psych hospital, they decided I had severe depression - even though I was there with sudden unexplainable severe anxiety, and suggested Milnacipran. I was nervous as hell about starting it, but my husband encouraged me to “trust the experts”. I was confused and wanted to get better… this is when the Lorazepam dose was increased from 0.75mg to 2.5mg 😔 (oh the regret). The head doctor even suggested 4mg of Lorazepam, but I refused. 
 

The side effects of Milnacipran were too much for me, and I didn’t feel like my condition was improving in that hospital, so after 6 weeks, I asked to be discharged. They lowered lorazepam down to 2mg, and by the time I got home, I was only sleeping for 4 hours a night. 
 

I was miserable and horrified that I’d gone to a hospital and left so ill with the prospect of benzo WD ahead of me. 😒😞

 

During that first week at home, I tapered of Milnacipran after 3 weeks. I saw the outpatient psychiatrist about a week after not sleeping much and that’s when Mirta began.

 

I’ve spoken to a few people who have come off benzos and Mirtazapine since making my intro, and they’ve suggested getting eyedrops for my vision, waiting a few more months for the benzo WD to stabilize, and then slowly taper off Mirta. I’m okay if it takes over 2 years… I’ve seen some horror stories about fast Mirta tapers and it genuinely terrifies me. 

[Kiasofia]

I see. In your signature it says you were taking Milnacipran until Nov 21 and started Mirtazapine Nov 2nd. But they did not overlap? Can you correct your signature so it shows when the one was stopped and the other started. They can cause a serious interaction, so that is why I was thinking that might have caused some of your symptoms.

 

We have many cases of people who have quit antidepressants, and then get withdrawal symptoms (such as anxiety) triggered from taking antibiotics. It is possible this is what happened to you.

 

Did you notice any difference in symptoms when you increased mirtazapine from 7.5mg to 15mg?

[slowphie]

Hello, sorry about that. I will update my signature - I meant that I tapered off in November 2021, by the end, just before I started Mirtazapine. 🥲

 

I don’t remember many increased side effects when I went up to 15mg of Mirtazapine, but it’s hard to know because I was tapering lorazepam simultaneously.

 

I don’t think antibiotics triggered withdrawal symptoms from anything… as this was many years after I tapered off desvenlafaxine without incident. However, Clarithromycin can cross the blood brain barrier and act as a GABA-a antagonist, basically, the opposite of what a benzo does. So one can imagine how that could turn out. 😩 Especially because my body already seemed very sensitive after the second Moderna vaccine. I only realised all of this in retrospect. 

[Kiasofia]

Oh, I see. It was the year, not date of month. I got confused. To try to determine if your symptoms are caused by mirtazapine and/or withdrawal you can consider doing a daily symptoms journal:

Keep daily notes of drug schedule and symptoms to track patterns and progress

[slowphie]

Thanks for the advice! I have been keeping a diary since I jumped off Lorazepam. I should have done that earlier 🥲. Hindsight is a b****. It seems like a lot of my benzo WD symptoms are easing off, so if I can manage to calm myself down and sleep somewhat normally again for a few weeks. I will slowly start tapering off Mirtazapine. 

[Kiasofia]

4 minutes ago, slowphie said:

It seems like a lot of my benzo WD symptoms are easing off

That is good to hear.

 

For when you are ready:

Tips for tapering off mirtazapine (Remeron)

[slowphie]

Thank you! Appreciate it  

[slowphie]

If anyone else is out there and has been through something similar… is it possible to stabilize on Mirtazapine and then safely taper off? I’m so so scared that I have destroyed my life by agreeing to take another medication. I’m only 31, I want to live… but the anxiety of this mess I’m in is so crippling right now that Idk what to do. Nobody understands 😞. I feel so overwhelmed and get scared that I won’t get better. I’ve hardly slept this week from the anxiety (I just keep getting waves of trembling and sometimes feeling hot) it comes throughout the day and wakes me up frequently at night. I’m scared that I won’t heal from benzo WD until I’m off Mirtazapine but also know that rapid tapering is dangerous. I wish I had discovered this place first. I guess this is a message into the void, I don’t want to tell the therapist I see, she’ll probably just talk to the psychiatrist and they’ll try to give me more medication. *sigh* 

[Kiasofia]

9 hours ago, slowphie said:

is it possible to stabilize on Mirtazapine and then safely taper off?

Yes!

9 hours ago, slowphie said:

I’m scared that I won’t heal from benzo WD until I’m off Mirtazapine

There are very many cases of people stabilizing from withdrawal from one drug, while still taking another. I recovered from lexapro withdrawal, while remaining on lamictal and (stupidly) adding in lithium. Try not to feed these thoughts. I understand them well. Had them myself. But scaring yourself doesn't help.

 

Acknowledge, Accept, Float

EFT (Emotional Freedom Techniques)

Non-drug techniques to cope with emotional symptoms

Pranayama Breathing for Anxiety and Depression

[slowphie]

Thank you so much. ❤️
 

I managed to calm down a lot yesterday, but I’ve slept terribly this week. Last night I went to sleep at 10pm and woke up at 11:30pm shivering cold, then 3:30am feeling too hot… then around 4am again and couldn’t really go back to sleep.

 

Throughout that time, I was also having some waves of heat come over me and couldn’t fully relax. My feet were getting sweaty. 🥲 I have so much sleep debt accumulated this week, but don’t feel sleepy. Which is very unusual for me, before this mess began, I slept well and loved sleeping.

 

I have also been noticing that my vision is better in the morning and deteriorates as the day goes on. Still have very light tinnitus. 
 

I know nobody can know for sure, but perhaps somebody can chime in as to whether this is a benzo wave or Mirtazapine turning on me? 🥲 

 

Last week my sleep was a lot better, and it’s just completely gone to hell in the last 8 days.

 

Hoping for some stabilization soon, I miss sleeping. 

 

 

[ChessieCat]

This wasn't very long ago, so you might still be recovering from it:

 

October 21 - November 21 - Milnacipran up to 100mg for 3 weeks, rapid tapered off in one week at my insistence, horrible side efffects on medication, including two days of Akathisia. 

[slowphie]

Good point. Wow, I feel like the doctors have really screwed up my brain. 🥲 I was aware of how dangerous benzo withdrawal can be, but I genuinely had no idea that the withdrawal from other psych meds can be just as bad. I’m actually almost in disbelief that doctors don’t mention this at all. If I had known, I would have never agreed to take any of this crap. I would have found a way to move past whatever was going on with me. I can’t believe this isn’t illegal - failing to tell patients about the risks involved when you want to stop. 

[Kiasofia]

10 hours ago, slowphie said:

I know nobody can know for sure, but perhaps somebody can chime in as to whether this is a benzo wave or Mirtazapine turning on me?

We might be able to if you start posting a daily symptoms journal, showing when you take mirtazapine (and any other medications, supplements) and your symptoms through out the day. Make sure to take mirtazapine at the exact same time every day.

Example template:

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

6 a.m. Woke with anxiety (but less than yesterday)

[slowphie]

Thank you, I’ve been keeping notes everyday and will start adding them here soon.

 

For the 9th day in a row, I went to sleep around 10pm, woke up at around 11:30pm, then went back to sleep but woke up again at 3:30am feeling wired and twitchy. By 4am, I’m wide awake, despite how little I’ve slept since Monday.

 

This is so disappointing because prior to that, I had been sleeping for 6-8 hours. Idk what’s going on. I guess the positives are that the wake ups haven’t been quite as anxiety fueled as earlier in the week. 
 

I really wanted to start tapering Mirtazapine a month after lorazepam (it’s exactly a month benzo free today 🎉) but I guess that’s not a good idea rn. I wish there was a faster way to get off this drug, I’m so frustrated at myself for starting it. Ugh. 

[slowphie]

I ate a chocolate croissant today (otherwise I’ve been super healthy lately) and a few hours later, the burning skin sensation on my back came back (arrived during acute benzo WD). Seems like the benzo WD is not over… as much as I wish it was, and I might have to hold Mirta for longer. As much as I wish I wasn’t putting this stuff in my body. I’ve noticed my vision is better around 4am-10am and then it slowly gets worse. 

[slowphie]

So I’m 53 days free of benzos right now. My sleep has been relatively okay for a few weeks now. I feel a bit less oppressively fatigued lately. However, my vision is still atrocious - which really sucks, and stops me from doing much. I’ve also started gaining weight from Mirt, which is annoying. My intense ear pressure after I jumped has turned into light tinnitus. I’m hoping to start slowly tapering off Mirtazapine at day 90. I’m thinking about making my own liquid. Would it make sense to start converting my tablets to liquid now and holding at 15mg until day 90 before making a reduction? Or would it be okay to immediately start reducing when I crush the pills into a liquid? Thanks in advance. 

[Kiasofia]

Good to hear sleep is ok at least. The body absorbs liquid faster so switching to liquid will feel like a reduction, so stay on liquid for a few weeks before reducing further.

[slowphie]

Ah wow okay, I didn’t even consider that. I thought it would be the same if I make my own liquid, but good to know. Thank you! 

[Lilabella]

Poor you it sounds like you've been through the wringer. Just reaching out to say hello. Listen to the mods they can help you. Doctors have no idea of the dangers of these drugs it should be front page news but it sadly isn't. It's a total scandal. 

[slowphie]

Hey @Lilabellathanks so much for stopping by. I agree re: doctors, after all, they’re the ones who got me in this mess! It’s sad because I was going against my instinct every time I was encouraged to do what they instructed. Ugh. 
 

Anyway, despite my double vision which is exceptionally heart breaking as a designer, I feel lucky considering all the crap my poor body and brain have had to navigate in the last five months. I genuinely - and I don’t say this lightly - felt brain damaged after I jumped off lorazepam. It was horrifying, and seeing some of the stories here, of people suffering like that, feeling horrendously cognitively impaired for years, I feel lucky that this feeling faded relatively quickly. 
 

I have been very open about my experience on social media (mostly my insta) and I really want to help spread awareness. My husband and I will be releasing music this year, and I hope it gives me even a tiny platform to discuss this. It seems like a silent epidemic with an inhumane level of misery. The things people must endure to find themselves again… it’s just so cruel. 
 

I hate, hate, *hate* feeling dependent on a drug like Mirtazapine, but I know I have to swallow that sense of dread and taper off slowly. 
 

Anyway, wow, what a rant. I hope you’re doing okay, I wish you all the best tapering off Quetiapine. ❤️

[Lilabella]

I know it's completely inhumane. The more voices out there the better but sadly it's hard to be heard when you have been stigmatised by mental health issues.

I too went against my own knowledge and intuition. I have to fight that anger with myself everyday. I know it gets me nowhere. I am now on olanzapine after I was switched in a hospital. Sadly I thought it would be easier to get off this but I don't think any drug can be described as easy to get off. Initially I was prescribed quetiapine for sleep and thought I could take it for two weeks. What a joke. 

You can do this, slow and steady is the way. All the best lila 

[slowphie]

@LilabellaI wish you all the best tapering off Olanzapine, like you said, slow and steady!

 

As for my own update. I’m at day 5 of 14.7mg of Mirtazapine, I started with a 2% cut and will make another 2.5% cut after day 7. I decided to go along with the “brassmonkey” method, as it seems to work well for sensitive people. 
 

I’m at day 64 benzo free, so it’s hard to know what are Mirtazapine side effects, wirhdrawal or remnants from benzo withdrawal. 
 

On the first night of my cut, I woke up shivering cold, and then woke up in the morning with aches and nausea. I woke up with muscle aches yesterday too. Woke up feeling less uncomfortable today. 
 

The dreaded Mirtazapine weight gain is finally catching up with me, and after getting to the thinnest I’ve ever been during benzo withdrawal, I’m now getting to the heaviest I’ve been for around 5 years, which is really frustrating. 
 

Going to have to try and be a lot more careful with my calorie consumption. My vision is still horrible. I recently saw another ophthalmologist who didn’t understand how my vision has become so bad, so quickly, at my age. 🥺 I had a breakdown at that point and couldn’t stop crying. My husband explained the situation, and the doctor told us if I can manage to get off Mirtazapine by May (at our next appointment) hopefully my vision will be improved. We explained it’s likely to take a lot longer than that, and we hope it improves as I gradually lower the dose. 
 

 

[Bestill]

@slowphiethe body aches are wonderful, aren’t they?  🥴. Some days my body just hurts like I worked out but didn’t.

 

sorry about the vision.  Is it blurry all the time or do you have moments of normalcy?
 

Bestill 

[slowphie]

Hey @Bestill there are essentially no moments of normalcy with my vision  just different degrees of really bad. This is why I’m beginning to suspect that Mirtazapine is the cause. All my other benzo wirhdrawal side effects are improving, except for this. 😫😫

[Bestill]

@slowphie Agh.  If it makes you feel any better. My air hunger is slowly getting better as I decrease and I was at a point I was gasping for deep breaths so believe your vision will get better as you get lower with your taper.

 

sending healing prayers 

[slowphie]

@Bestillooh, I’m so glad the air hunger is easing off! I’ve had air hunger just from my own anxiety before, and it’s such an uncomfortable feeling.

 

Thanks so much! I’m so glad there are others at a similar stage of their tapers with Mirta. It’s nice to not feel alone with this. 😊

[slowphie]

So, I’m feeling stable. Not healthy, but stable… honestly haven’t felt particularly healthy since I got entangled with psychiatry. 😫

 

Planning to make another 2.5% drop tonight, that will take me to 14.33mg

 

I called Charité in Berlin today, and made an appointment to see Dr. Volkmann in early April. He seems to understand psychiatric withdrawal (I hope anyway) and it would be nice to speak to a doctor who understands this. I’ll report back here to share how it goes, and maybe post it to the thread for cooperative clinicians. 
 

Thanks to @belikeabamboo for sharing that info with me. 

Edited February 14, 2022 by slowphie
correcting emoji xD

[Bestill]

@slowphieim doing a drop tonight too!  

[slowphie]

@Bestillgood luck!! ❤️

[slowphie]

So, I was doing some calculations. If I follow the brassmonkey slide method until the very end (0.05mg) it would take me 6.75 years to finish a taper of a drug I took for 3(!!) months. Is that normal? Starting to think I should speed it up and go for 10% per month to begin with. 6.75 years seems insane. 

[Bestill]

@slowphiedid you do your calculations on your own or through a website?

[slowphie]

Hey @Bestill I did the calculations on my own. Once I’m at six months lorazepam free, I think I’m going to try 10% every 4 weeks. If Mirtazapine is impacting my vision, and leaving me essentially disabled rn (I can’t work when my vision is this bad), I’m okay with dealing with a bit more discomfort, if it means my taper is a little faster. I really hate this drug rn. 😤😤😤