Patrickdot: introduction

[Patrickdot]

This history will serve to introduce myself.  
I have had generalized anxiety disorder, OCD, and depression since I was a teenager.  My depression became severe in my early 20’s and I was put on lithium very briefly for a few weeks.  I had a severe reaction and convulsions.  I was given a shot of I think Valium in emergency and was taken off the drug.  I never recovered from a fear of medication after that.  I spent 12 weeks in an integrated psychotherapy program instead and managed to spend the next 20 years happy and free of any medication.  Then in my early 40s I had severe depression.  I was hospitalized for a month and put on Remeron at 60mg per night.  I spent the following 10 years on that dose.  I felt drugged all the time but somehow remained highly functioning.  I eventually tapered off Remeron over a few years.  I thought I was successful at quitting but I suffered severe insomnia for months.  Very soon anxiety and depression took hold and I was back in hospital.  

 

This brings me to recent years.  I’m 20I8 was put on 15 mg Remeron for sleep and I took it knowing I would not want to stay on it for more than necessary.  I got a new psychiatrist who switched me to Lyrica in 2019.  I never adjusted to that drug. It was horrible.  I was put back on Remeron in Nov. 2020 at 15mg only because it was considered something my body was used to.  I’ve tried to reduce the dose to 7.5 mg and then 3.75 mg. over a year with the idea that I was doing CBT, it was more helpful than drugs, and I wanted to be drug free.  The Remeron had always been a problem for me with sleep.  I had period leg movement disorder as a side effect (sleep tests showed this).  
 

I tried to stop Remeron CT several weeks ago from 3.75 mg as 2 psychiatrists told me it was a low dose and I would have NO withdrawal.  I stoped for 14 days and every day was a living hell.  I was told to keep going as it would get better.  I gave up.  I spent 10 hours in emergency investigating seizure like symptoms. Was told it was anxiety.  Even my psychiatrist said Remeron does not cause these symptoms but if it made a difference I should restart Remeron and he would get a compounding pharmacy to make me a liquid to taper slowly.  But unfortunately I cannot seem to stabilize back on Remeron. I have had terrible withdrawal, endless list of symptoms from shaking and tremors to stinging prickly skin sensations and hyperreflexivity.  My head has constant pressure which feels like my sinuses hurt or my brain is damaged.  My jaw shakes.  My toes are numb.  Insomnia persists. Everyday it seems to be different.  I feel hopeless at this point. I don’t have confidence in doctors.  These drugs are not worth it.  There must be a better solution.  But I’ve run out of time and I don’t know what to do anymore.  

[Patrickdot]

Patrickdot Introduction

 

I have Generalized Anxiety Disorder, OCD, and am prone to severe Depression.  Much of this since a teenager.  

 

My first encounter with psychiatric medications was in my 20s.  I was put on lithium for only a few days maybe a week and had a severe reaction.  I had a few hours of convulsions and in emergency was given a shot of Valium and medication was stopped.  This experience made me terrified of medications, something I have never gotten over.  

Instead of medications I attended a 12 week integrated psychotherapy program for 8 hours a day.  It was incredible.  For the next 20 years, I was fine. Happy.  This kind of therapy worked for me. 

 

Then in my early 40s I had a bout of severe depression and ended up in the hospital for one month.  I was eventually put on 60 mg of Remeron along with a daily small dose of clonazepam. I stopped the clonazepam easily after a year.   I remained on that 60mg dose of Remeron however for 10 years.  I felt drugged during that whole time but did not want to risk the severe depression returning. I managed to remain highly functioning at work. It was later discovered that the Remeron was causing periodic leg movement disorder and I was becoming quite sleep deprived.  So I tapered off the Remeron over 2 years.  I also wanted to not feel drugged anymore. 

 

At first I felt incredible having had the fog of Remeron lifted.  This lasted 6 months. But soon severe insomnia set in and I became intensely anxious.  I ended up in emergency where I was given 15 mg of Remeron.  I said, “oh no, I just got off this!”  But I desperately needed to sleep so I took it.  I spent about two months on this 15mg dose and then tapered off fairly quickly.  But the insomnia returned.  And then paralyzingly anxiety.  I got in touch with a psychiatrist and she put me on Lyrica and I was hospitalized again for 9 days.  I managed to recover and spent about 8 months on Lyrica at only 75mg.  I couldn’t go higher as I found the drug too intense.  I wanted off of it.  Then the pandemic hit.  I was assigned to a new psychiatrist who helped me get off the Lyrica.  It took 6 months to taper.  The withdrawal was horrific.  Because of Covid I was isolated from everyone which made it even more difficult.  I then tried three days of Effexor but I immediately felt sick from it and it was stopped.  My psychiatrist suggested I start to take a 15 mg dose of Remeron to calm down and sleep as I was familiar with the drug and it seemed a safe bet.  And everything was locked down so I needed a solution.  

 

So here I am.  I have been on Remeron again since November 2020.  I began on 15mg, then reduced to 7.5mg about 6 months in, and then reduced to 3.75mg about 6 months ago.  

 

Most recently I decided, with the advice of my psychiatrist, that I would like to do talk therapy and CBT, and to look at other options besides antidepressants.  I was told by two psychiatrists that I was on such a low dose of Remeron I could just stop taking it without any side effects.  Boy were they wrong!  I did a 4 day trial of no Remeron and then two days back to 3.75mg.  It felt rough but I thought maybe I could do it.  I tried another 4 days off and two days back on 3.75 and it seemed a bit worse.  I then decided to make the jump anyway and stopped the 3.75 cold turkey.  I lasted 14 days.  They were excruciatingly difficult days. Everyone kept telling me to keep going as it would get better eventually and did I want to waste all that suffering?   Such bad advice.  I woke up one night and my chest was clenched tight and I thought I was convulsing.  My psychiatrist sent me to emergency where I was told it was anxiety.  And that Remeron did not cause withdrawal.  My psychiatrist was on sick leave so I met with her replacement and he too said Remeron does not have withdrawal.  But he agreed to send me to a compounding pharmacist to get a liquid for slow tapering if I insisted.  He said all of my withdrawal symptoms were in fact withdrawal symptoms but Remeron doesn’t ordinarily do that.  (I feel so unsupported by these psychiatrists who prescribe this poison and then glibly deny anything you claim it does to you.) 

 

So the replacement psychiatrist told me to reinstate my last dose of 3.75mg and my withdrawal would stop immediately.  Then I could taper however I want.  Unfortunately, when I reinstated the 3.75mg, it didn’t work. I felt worse.  I felt like I was being electrocuted.  I tried this for 4 nights.  Only one of those nights the Remeron knocked me out for 9 hours and I felt like I had been hit by a truck. The other nights were sleepless and electric.  

 

I read somewhere on your Surviving Antidepressants site to try a tiny amount of the reinstating drug instead of a full dose.  This worked better for sleep.  But I am still consumed by constantly changing symptoms: upset stomach, sinuses sore and inflamed, muscle rigidity, flu like sensations, restless arms and legs, hyperreflexia, pins and needles, numbness in my toes, tremor, blurry vision…  it moves around.  I do not understand this degree of  wild sensations so suddenly.  I was absolutely fine only a few weeks ago.  I feel like I will never get better.  That something terrible is happening.   I don’t have a plan for what to do next.  My psychiatrist is away for another month due to illness.  Her replacement is unsympathetic.  

 

Edited August 21, 2022 by ChessieCat
added Intro topic title before merging with intro topic / resized font

[Altostrata]

Welcome, @Patrickdot

 

On 8/21/2022 at 1:15 PM, Patrickdot said:

So the replacement psychiatrist told me to reinstate my last dose of 3.75mg and my withdrawal would stop immediately.  Then I could taper however I want.  Unfortunately, when I reinstated the 3.75mg, it didn’t work. I felt worse.  I felt like I was being electrocuted.  I tried this for 4 nights.  Only one of those nights the Remeron knocked me out for 9 hours and I felt like I had been hit by a truck. The other nights were sleepless and electric.  

 

Are you still taking 3.75mg? How has your symptom pattern changed in the last several days?

[Patrickdot]

Thank you Altostrata!  I started taking smaller broken pieces of a 3.75 dose and worked my way back to full 3.75 as of last night.  My symptoms remain severe all day with some variations.  Restless arms and legs, pins an needles, very jumpy and some tremors  that move around.  I also have flu feeling.   Fatigue.  Some breathing anxiety.  Very depressed.  Stiff.  It’s been quite a hell.  I am on sabbatical so my schedule is open for now.  I’m very much on edge.  

[Patrickdot]

Oh, and the Remeron is helping me get about 3 hours of sleep, then I am awake and unable to relax to sleep any more.  

[Altostrata]

We advise people to be very consistent with their dosing. Are you confident you're taking 3.75mg mirtazapine? How long have you been taking 3.75mg this time around?

 

Do you feel better or worse after you take it? FYI Tips for tapering off mirtazapine (Remeron)

[Patrickdot]

Hello Altostrata,

I was unable to access the SA website for some reason.  I was using my email address correctly.  

I have not been precise with doses for the past 5 nights because I was taking less than the 3.75 dose, breaking that down with my fingernails to get a smaller dose pieces to reinstate.  The 3.75 dose I was breaking was gotten by using a pill cutter on a 15mg tablet.  Makes it even less accurate. So only last night, for that one night, did I use a 3.75 pill at the full 3.75 strength for the first time in weeks.

The Remeron has not been working. I woke up last night having my chest muscles tight and shaking badly. It felt seizure like.  I had this same chest shaking about 2 weeks ago and went to emergency.  I was told it was anxiety.  It felt more like an effect of the inconsistent doses.  

I’m not sure I’m being clear.  There have been so many symptoms and much unpredictability.

Here is how I have been reinstating in the past 5 days:

Aug 21 1.875mg (approx)

Aug 22 2.00mg (approx)

Aug 23 2.75mg (approx)

Aug 24 2.75mg (approx)

Aug 25 3.75mg

Aug 26 3.75mg (planning to)

 

Edited August 27, 2022 by ChessieCat
Resized font

[Patrickdot]

I wrote the above last night before bed.  Last night, Aug 26 I took a full 3.75 dose.  I fell asleep but had the same chest shaking waking me up 3 times.  It’s frightening.  This never happened to me before - it has only happened since I did the 14 day cold turkey (Aug 1-14).  Yesterday instead of lying in bed all day I tried to have a normal day.  I’m stiff and jumpy and feel like I have flu symptoms. My arms and legs are restless.  My whole body is heavy and beaten down.  To think I was functioning normally only a few weeks ago before I stopped the 3.75 cold turkey.  Now nothing works.  

[Patrickdot]

I just read the entire forum on reinstatement and it gave me a better understanding of potential methods to reinstate safely and how they might work. 
I have a few observations/inquiries regarding my own circumstances.  I took Remeron at 60mg for 12 years for severe depression and then recently it was given to me, under different circumstances, at 15mg for sleep and anxiety.  It really is a completely different drug at these different doses - and I understand that it is considered a paradoxical drug for this reason.  I tapered slowly off the 60mg dose period over 2 years and at zero I had manageable withdrawal and felt generally so much better off of it.  I did eventually have crippling rebound insomnia but that was it for WD symptoms.  Coming off my current period of Remeron I am experiencing a quite different withdrawal.  It is a much longer list of symptoms (see my stories above).  And from the very first day of CT I felt a raging of these symptoms.  So I have two experiences that are very different from the same drug.  
My other observation is about keeping better track of my symptoms in relation to my activities.  I need to do this.  I just realized that these very recent new chest “convulsions” (I don’t know what to call them) have happened at roughly the same time - an hour or two after I take the reinstated Remeron while I’m asleep.  Could they be a bad reaction to reinstating?  Should I stop Remeron altogether?  Is there a compatible bridge drug I could take that would be easier to taper from and relieve my WD symptoms?  
Regardless I continue to suffer and try to find some better path forward. 

[Patrickdot]

One more thing (and sorry if I’m inappropriately using this as a kind of WD diary), I must now be in a state of withdrawal, reinstating, and relapse of past symptoms.  It’s hard to know what’s happening and why.  

[Altostrata]

The site was down for several hours last night.

 

20 hours ago, Patrickdot said:

Oh, and the Remeron is helping me get about 3 hours of sleep, then I am awake and unable to relax to sleep any more.  

 

At what dosage did you get this effect?

[Patrickdot]

It doesn’t seem to be dose specific. And I sometimes don’t get any sleep on the Remeron.  I also wasn’t getting any sleep at all when completely off cold turkey.  The most I get is 3 hours now from any dose - which has been 1.875 to 3.75.  

[Patrickdot]

2 hours ago, Patrickdot said:

I just realized that these very recent new chest “convulsions” (I don’t know what to call them) have happened at roughly the same time - an hour or two after I take the reinstated Remeron while I’m asleep.  Could they be a bad reaction to reinstating?  Should I stop Remeron altogether?  Is there a compatible bridge drug I could take that would be easier to taper from and relieve my WD symptoms?  

Any thoughts on these new symptoms waking me?  Are they withdrawal, reinstating reactions?  I am too anxious to go to sleep now.  

[Altostrata]

Please describe this chest symptom further. Does it happen at any particular time of night?

 

Quote

Nov. 2020 to Jan. 2021 Remeron 15mg  0.5mg Clonazepam use as needed

 

How often were you taking clonazepam?

[Patrickdot]

2 hours ago, Altostrata said:

 

Please describe this chest symptom further. Does it happen at any particular time of night?

 

I wake up with my chest and shoulders locked tight and shaking.  I feel seized.  And I feel like if I move it will get worse.  I stay still and it passes in about a minute.  It happens in the night roughly around the same time at 3:00 am.  It happened twice in one night though.  One right after the other about 15 minutes apart.  I fell back to sleep and woke up tight again.  
 

2 hours ago, Altostrata said:

How often were you taking clonazepam?

I took the clonazepam only twice and both times it was half a tablet .25mg.  I took it during the day to see if it made any difference.  It was powerfully sedating and I decided it was too risky to get used to.  I am not willing to take benzos ever.  

[Altostrata]

This sounds like a reaction to mirtazapine. You may wish to try 3mg.

[Patrickdot]

1 hour ago, Altostrata said:

This sounds like a reaction to mirtazapine. You may wish to try 3mg.

Yes.  It does seem more like a reaction. I fell asleep for a while last night before I took my 3.75 and so I eventually took my dose late at 3:00 am instead of midnight.  Then I had the chest tightness around 5:00 am.  So there seems to be a relationship between taking the Remeron and two or three hours later having this chest problem as a possible reaction. 
I will try your suggestion of reducing to 3mg tonight although I have pills.  
My question at this point is is there a bridge medication I could switch out the Remeron for that would help the withdrawal and be an easier taper off?  

[Altostrata]

Please take 3mg at the same time every day. This will give a more accurate report of any adverse effects.

 

There is no bridge for mirtazapine. You will be able to taper off directly.

[Patrickdot]

30 minutes ago, Altostrata said:

Please take 3mg at the same time every day. This will give a more accurate report of any adverse effects.

Thank you.  Yes, will do this. 

[Patrickdot]

Hello!

I am quite desperate today. Should I go to emergency?  Every time I take any dose of Remeron, whether it’s 3.75, or the now suggested 3.00mg, I wake up around 2 hours later with my tachycardia, irregular heartbeat, and my chest seizures - which feel like hypothermia, I realize.  My nose is cold too. I have hyper reflexes.  I stand beside the stove with all burners turned on to heat up. This stops the chest seizures eventually.  Clearly the medication is making things worse whether I take it or if I try to stop it.  Please help.  I am inclined to go to emergency but here in Montreal it will involve waiting 10-20 hours in line.  

[Altostrata]

Suggest you try 1mg. 

[Patrickdot]

Ok. Is it possible to have mild serotonin syndrome?  Given all the jumping around in terms of doses recently.  Is it possible that a low dose of Remeron could cause it?  

[Altostrata]

Very unlikely you have serotonin syndrome or toxicity from that low dose of mirtazapine. Rather, you may have become sensitized to mirtazapine.

[Patrickdot]

When I went down to 1mg dose I had my first brain zap.  I didn’t know what was happening but then remembered reading about this phenomenon.  It was exactly as people described.  It was shaped like a lightning bolt and travelled across my head.  Very strong. Scary at first but it didn’t affect me beyond the sensation. Only had that one. I bumped my dose back up to 1.875 and that seems to have stopped those. I’ll hold at 1.875 for a few days and then try lowering slower by 10%.  
I saw my psychiatrist and he did a neurological exam. He said my symptoms are all anxiety.  He does not believe Remeron can cause withdrawal. He is firm about this. It’s difficult to deal with him.  I am trying to switch to another doctor but in Canada you don’t get to choose in the socialized medical system. 

[Altostrata]

8 hours ago, Patrickdot said:

I’ll hold at 1.875 for a few days and then try lowering slower by 10%.  

 

Strongly recommend that when you receive the warning sign of a withdrawal symptom, you stabilize for much longer before attempting another reduction.

 

Most likely, your psychiatrist doesn't know anything about psychiatric drug withdrawal or tapering. That is why this site exists.

[Patrickdot]

I went back up from 1.875 to 3.75 mg last night as I felt my symptoms were too disruptive. I feel slightly better this morning. Wondering if I need to go back up to 7.5 and start over from there. My reductions have been too big. I would love some relief from symptoms.  They’re unbearable.  

[Patrickdot]

I am noting that my resting heart rate this morning is 66.  It hasn’t been below 85 since I started this whole attempt to go off Remeron a month ago.  This has to be because last night I returned to the higher dose I was on before I started to discontinue.  I just need to stabilize for a few months.  Then I will try a much much slower tapering process.  

[Altostrata]

6 hours ago, Patrickdot said:

 I just need to stabilize for a few months.  Then I will try a much much slower tapering process.  

 

Good idea.

[Patrickdot]

An update.  I have continued to try and stabilize at 3.75mg of Remeron but it isn’t really making much difference.  3.75 was my last dose and I was at this dose for 10 months.  I still have muscle stiffness that is exhausting, shaking, little spasms, reduced fine motor skills in hands, dizziness that is sometimes leaves me stumbling, and clenched jaw.  My mouth is dry and chewing is often unpleasant.  I can’t concentrate.  I get these overwhelming pangs in my stomach like butterflies, but it’s an awful feeling like loose anxiety.  
 

I was advised to go to emergency three nights ago as my heart rate was around 110 all day and my heartbeat irregular.  A cardiologist confirmed my heart has suddenly started to take extra beats- sometimes two or three rapidly in a row between regular beats.  He said it was nothing to worry about. Everything else looked normal.  Including blood work.  But my heart has never done this before.  Ever.  Has anyone else been dealing with heart irregularities?
 

My psychiatrist gave me a prescription for propranolol as a way to cope with some of my symptoms.  I don’t want more drugs, I haven’t filled the prescription.  He still prefers that I take a benzo but I’ve said no, that’s even more addictive.  
 

My ordeal has been ongoing since August 1st; 5 weeks now.  I am losing my will.  I don’t see  a way out of this.  

[Patrickdot]

Given my entries above, could someone direct me to an appropriate chat here?  
Thank you!  

[ChessieCat]

There are many existing topics on SA.  For symptoms you can use the search bar (top right) in the Symptoms and Self Care forum.  Or you can use an internet search engine and add site:survivingantidepressants.org to the search term.

 

Using the search term "irregular heartbeats", both search methods, found this topic:

 

irregular-heartbeats-palpitations-tachycardia-bradycardia

 

[Altostrata]

@Patrickdot how do you feel before and after taking 3.75mg mirtazapine? What is your heart rate about 3 hours after you take it?

[Patrickdot]

2 hours ago, Altostrata said:

@Patrickdot how do you feel before and after taking 3.75mg mirtazapine? What is your heart rate about 3 hours after you take it?

Hi Altostrata!

Thank you.  I take the Remeron at midnight when I go to bed because it makes me sleepy.  I usually wake up three to four hours after that with racing heart. It takes a while to calm my heart rate.  I usually can’t get back to sleep.  As for before I take it, I generally feel better later in the evening than I do all day. So I feel best before I take it.  

[Patrickdot]

7 hours ago, ChessieCat said:

Using the search term "irregular heartbeats", both search methods, found this topic:

 

irregular-heartbeats-palpitations-tachycardia-bradycardia

 

Thank you ChessieCat. 

[Altostrata]

16 hours ago, Patrickdot said:

I usually wake up three to four hours after that with racing heart. It takes a while to calm my heart rate.

 

This suggests 3.75mg is too high. You might reduce to 3mg.

[Patrickdot]

Update: As recommended, I have reduced to 3mg Remeron taken at bedtime.  The Remeron gives me about 4 hours of sleep.  That’s the best I can do with sleep.  I’m concerned that all day now my entire body is variously numb, pins and needles and shaky.  I feel hyperreflexive.  It’s hard to do anything.  And I have this constant heightened adrenaline or electrical butterflies burning sensation that feels horrific.  It’s in my stomach too. I can’t help feeling like I’m never going to get better and I keep wanting to go to emergency and beg for relief.  Please tell me how to stop this.   I think of suicide all the time but I’m not drawn to going through with it.  I do wonder though, at some point, will I give in.  I can’t keep crossing these terrible lost days off the calendar with nothing to look forward to.  I’m not getting windows, just waves.  And I’m not even off the drug yet.  Will things get worse?  My psychiatrists want me to take benzos and propranolol but I am too frightened of more drugs and deeper dependences.  
inforce myself to go out every evening and I try to speed walk up the hill for about 10 blocks and then back home.  It’s hard to do and I don’t really feel better or worse after.  

Is there such a thing as a face seizure?   In the night when I’m lying down, the skin area around my eyes and forehead seizes up suddenly and my eyelids crush into a twist and I cannot see.  It lasts a few seconds.  I rub my eyes and my vision slowly comes back.  It’s utterly strange and creepy.  Does anyone have this?