PortugueseSea: metoclopramide, akathisia and mirtazapine

[PortugueseSea]

Thanks Alto!

 

I am slowly coming to grips with the fact that it is going to be like this for a while. I have gone over my case with some coaches and they seem to think that is the case, I will see a slow recovery like everyone else.

 

That said, I was also advised to get a full neurological work-up as I had a low-grade fever, nausea, lack of appetite and constipation when this started. They suspect that, although quite unlikely, I could have encephalitis, namely anti-nmda encephalitis. It can lead to severe reactions to medication, like the one I had to metoclopramide. Chances are slim to none but I guess it will help my peace of mind to get that ruled out, I have ruled out everything else anyway.

 

In retrospective, I can't believe the psychs didn't screen for this when I first developed this syndrome, well, I shouldn't be surprised. They are psychs, science does not come strong to them.

[PortugueseSea]

20 months off the causative agent and 5 months off the mirtazapine, off all meds, the mother of all waves has unfolded, my agitation is through the roof. Impossible to distract. It is absolutely unbearable.
I have heard that late crashing waves can be brutal, this might be the case.

This too shall pass.

[Altostrata]

Any triggers for this that you can recall?

[Rosetta]

PortugueseSea,

Are you feeling any better?  I had a pretty bad wave at one point long after I thought I was well on the way to recovery.  Yes, it will pass.

Please let us know how you are doing.  Alto asked a question, too, above my post.  Normally, I don’t post under her questions to avoid the possibility that you would miss her post.

 

🧚‍♀️Rosetta

[PortugueseSea]

On 9/6/2023 at 2:11 PM, Altostrata said:

Any triggers for this that you can recall?

 

On 9/13/2023 at 5:29 AM, Rosetta said:

PortugueseSea,

Are you feeling any better?  I had a pretty bad wave at one point long after I thought I was well on the way to recovery.  Yes, it will pass.

Please let us know how you are doing.  Alto asked a question, too, above my post.  Normally, I don’t post under her questions to avoid the possibility that you would miss her post.

No, I have been off alcohol, off caffeine. Little sugar. My sleep has been better than fine.
My hypothesis is that this might be a late crashing wave as I am 6 months off all meds.

The wave seems to switch between intense agitation and intense dysphoria. It is pretty bad, but it will pass.

The alternative hypothesis I am working on disproving is autoimmune encephalitis.

The intensity of the symptoms led me to seek a neurological referral in a Hail Mary attempt to find... something, I got an MRI and an EEG. Waiting for bloods.
To my surprise the EEG was abnormal. Front Temporal Lobe, left side.

I am going to push for a lumbar puncture as bad reactions to anti-psychotics can signal encephalitis. 

I know nothing will come of it but the EEG gave me some hope. 

I will keep everyone posted, bloods come out on the 22nd, should push for the lumbar puncture on that day.
At this point, I am on the autoimmune encephalitis team.

Anyhow, I am sure I am not the first member to get an abnormal EEG and come out with nothing...
No human being should suffer like this, but I will make it through.

[PortugueseSea]

I had 2 weeks of an anti-emetic in December, during which all hell broke lose, use on and off after that. Then maybe 3 months of medication trials, through which things got worse, then I got the Mirtazapine for like 10 months, taper included. Been clean of substances since March 2023.

I feel like 6 months off everything, things should be better. I do not understand.

But I guess I am not the first not too, could this be a mix of the original adverse reaction and now a tardive mirtazapine withdrawal syndrome?

God knows, makes more sense than the encephalitis theory. But, hey, at least the encephalitis we will know soon as I will get full tests for that.

[Rosetta]

Thanks for updating us.  I quit everything in mid-February and in August, I realized that I wasn’t getting better.  Rather I was getting worse.  That’s when I found SA.  I didn’t start posting for several months after that.   I would say I was very, very sick for about 5-6 more months.  Later, I had some very hard times, but the trajectory was toward healing, overall.
 

I doubt you will be very sick that long, but whatever happens, do not give up hope.  I am always very sad to see people give up when they are likely close to the bottom or past it.  They cant know that; we can’t promise that, but if I had given up too soon . . . well.  Your doctor won’t tell you what we know — this recovery can be very long, and there is no new mental condition (other than the perfectly normal despair brought on by this condition), and we are not malingering!  Yes, our condition can get worse and worse for several months — it’s called a tardive condition.  However, you will recover!

 

🧚🏻‍♀️Rosetta

[Altostrata]

17 hours ago, PortugueseSea said:

To my surprise the EEG was abnormal. Front Temporal Lobe, left side.

 

What does this mean?

[PortugueseSea]

On 9/16/2023 at 7:32 AM, Altostrata said:

What does this mean?

An electroencephalogram detected abnormal electric activity in the brain. Namely in the temporal lobe, on the left brain. It could mean something, it could mean anything.
Follow-up bloods were ordered, the doctor just said it was abnormal localized activity. He said it was not epileptic.

Sorry, maybe I am not explaining myself very well. I have 0 experience with EEGs.

I will know more on the 22nd.

[PortugueseSea]

On 9/15/2023 at 5:42 PM, Rosetta said:

Thanks for updating us.  I quit everything in mid-February and in August, I realized that I wasn’t getting better.  Rather I was getting worse.  That’s when I found SA.  I didn’t start posting for several months after that.   I would say I was very, very sick for about 5-6 more months.  Later, I had some very hard times, but the trajectory was toward healing, overall.

Thank you, rationally, I know that.

But daily agitation/dysphoria has really taken a toll. I will keep posting, I will keep healing.

When I went to the neurologist to test for possible encephalitis, it was because I found that underlying encephalitis can cause adverse reactions to anti-emetics/anti-psychotics. I was 1% hopeful that it would be my situation, after the abnormal EEG I am 10% hopeful.

So, I am 90% sure this is just the adverse reaction plus subsequent drugs/withdrawal.

But hey, tests will not hurt, do not need any drugs for any of them, except maybe a local anesthetic.

I would like to thank you for following my thread Rosetta, this is very lonely and I sometimes despair. I will keep walking!

I hope 2024 will be the year things become bearable!

 

[Altostrata]

On 9/14/2023 at 10:29 PM, PortugueseSea said:

But I guess I am not the first not too, could this be a mix of the original adverse reaction and now a tardive mirtazapine withdrawal syndrome?

 

Given you have a potential medical cause for your current symptom pattern, no one can answer that question.

 

There is no such thing as a late-crashing wave. There is such a thing as a medical condition, such as covid, causing further upset to a nervous system already sensitized by withdrawal.

[PortugueseSea]

9 hours ago, Altostrata said:

Given you have a potential medical cause for your current symptom pattern, no one can answer that question.

It is probably a red herring, something to exclude rather than include. I will know more next week. I will keep everyone posted.
The doctor hinted at not expecting too much of it.

 

 

9 hours ago, Altostrata said:

 

There is no such thing as a late-crashing wave. There is such a thing as a medical condition, such as covid, causing further upset to a nervous system already sensitized by withdrawal.

Really? I see. Maybe something happened to destabilize me that I did not realize. An infection or something like that...

Thank you.

[Rosetta]

I’m still shocked that a doctor recognized the akathisia!
 

I understand why it matters so much to you WHY what is happening is happening.  I was obsessed with how and why my waves happened, what had happened in my brain to create the torture, and trying to figure out a way to control it.  Whether it was simply an OCD type reaction to my predicament or my natural personality, I read as much as I could and thought about the issue non-stop.  My brain did not reason very well, did not retain information very well, and the recurrent anxiety attacks made it very hard to think.
 

My understanding is that sometimes there may be a change in the brain that does not cause too much turbulence on the surface — where the symptoms show.  Maybe you feel worse, but it’s manageable.  Then, the healing brain makes a change that is quite consequential or possibly, several changes intersect, and wham! Suddenly, you are feeling much, much worse.  That is what seemed to be happening to me.  Whether the change was more significant or the result of the change was more intense, there were some waves that were devastating.  Many, many people report this phenomenon.  Because this pattern is different than most other types of healing (and because mental symptoms are often significant components), we are very distressed by the fact that we are feeling worse.

 

Personally, I think it’s likely to be the case that several changes intersect or pile up to make a particularly bad wave.  The reason I think this is because when someone is tapering, and they reduce the drug dose too soon after a previous reduction, they may feel stronger symptoms that would not have occurred if they had waited longer between reductions.  The only control the person has over how fast the brain is making changes is the timing of the dose reductions and the amount of the reductions.  

As cold turkeys 🦃, we have no control.  As adverse reaction people, we have no control.  The brain is doing its thing, and we are along for the ride.  Changes happen when the brain makes them.  They pile up or happen too fast, and it’s truly awful😞.   There are probably not too many natural substances that could put us in this type of danger.  Our bodies were never designed/never evolved to handle this situation.  They are carrying out a systematic repair procedure that is inadequate to provide a smooth or less rocky transition to normal brain function.  
 

The best analogy to what is happening to us is the healing of traumatic brain injury.  If you read the possible consequences of TBI, you will see a lot of similarities.  Of course, for us, the good news is that no structures have been destroyed permanently, but the trajectory of healing is very similar and just as frustrating and scary.  The neuroplasticity is the saving grace for both conditions.

 

🧚🏻‍♀️Rosetta

[Altostrata]

Usually there is a trigger, such as covid, for a resurgence of withdrawal symptoms.

 

@PortugueseSea do your current symptoms feel like those you had a year ago?

[PortugueseSea]

On 9/18/2023 at 6:25 AM, Altostrata said:

Usually there is a trigger, such as covid, for a resurgence of withdrawal symptoms.

 

@PortugueseSea do your current symptoms feel like those you had a year ago?

Yes, though they have never stopped, they slowly lowered in intensity and recently increased again.

Last, year it improved. I went from full blown akathisia to bad agitation, to agitation. That and dysphoria, this one has been less reduced, those are my two demons that are yet to let go.
Oh, and the feeling I have acid running through my neck, head and upper back.

It is pretty bad.
They all got better and then recently gotten worse, I do not think as bad as 2022 levels, but worse.

None of this is new, it all started with the adverse reaction in December 2021.

Thinking of it right now, I did have an issue at work which led me to leave that particular workplace. The transition was smooth but that could have set me off to a degree (?).
This wave took me back to the worst periods of 2022.

I am sure it will settle, It is just so emotionally and mentally exhausting. I find myself questioning even my supplement regimen which I built pretty carefully. "Maybe they are holding my back", I do not think that is the case though.

Urgh, I just want to get better so I can go back to living, not just suffering.
 

[PortugueseSea]

On 9/18/2023 at 2:43 AM, Rosetta said:

I was obsessed with how and why my waves happened, what had happened in my brain to create the torture, and trying to figure out a way to control it.

Same, for me it is the constant discomfort that causes this, I am a pretty distractable person in normal circumstances, I am the day dreamer type. The timeline scares me too, I thought I would be better by now. 

 

On 9/18/2023 at 2:43 AM, Rosetta said:

As adverse reaction people, we have no control.  The brain is doing its thing, and we are along for the ride.  Changes happen when the brain makes them.  They pile up or happen too fast, and it’s truly awful😞.   There are probably not too many natural substances that could put us in this type of danger.  Our bodies were never designed/never evolved to handle this situation.  They are carrying out a systematic repair procedure that is inadequate to provide a smooth or less rocky transition to normal brain function.  

That is very interesting, I still think, all in all, I am improving. It is just that at 20 months I am completely exhausted of living like this. The brain is doing its thing and we are going along for the ride, huh. That makes complete sense, we, adverse reaction people, have no control whatsoever, I feel like a hostage in my own body.

Maybe my body is simply revolting against the constant suffering?

I have a pretty good life beyond this, it is just that the constant suffering precludes enjoyment. Trying to make sense of this at times seems non-sensical.

Thank you Rosetta, I hope I will be able to deliver good news sooner rather than later...

[Rosetta]

You will start to relax eventually.  Yes, it’s utterly exhausting.  
 

Epsom salts baths help.  Any kind of heat helped me.  I got a shoulder wrap that I could heat in the microwave.  I wish I had had two.  The warmth helped me endure.  I would heat water on the stove and put my feet in it.  There are some chemically activated heat wraps that last eight hours.  You can buy them at any pharmacy.  They have sticky areas, and you can put them on your shoulders or calves.

 

It does end.  It really does.  And before that it lessens - a lot.  The contrast will make you really appreciate the lower level of activation.  I’m doing very well, now.  All that agitation and activation is gone.  Very, very rarely it comes back, but disappears within hours or even less than an hour.

 

Im so sorry this happened to you - to all of us!

 

🧚🏻‍♀️Rosetta

[extraordinary]

Hi PortugueseSea- just wanted to say sorry you are in this battle. Loneliest hardest walk yet for me - even with my husband so supportive. I wanted to check in and see how you are  - my journey started with Metaclopromide too - 12 days that changed my life  - followed by benzodiazepines and 6 months of mirtazapine. Now 9 months off and dysphoria and intrusive negative thoughts and anger - all the opposite of the lovely life and happy person of before- continue to be exhausting.  Praying our way through! Sending prayers of peace and healing your way.

God Bless 

[PortugueseSea]

On 9/19/2023 at 12:51 PM, Rosetta said:

It does end.  It really does.  And before that it lessens - a lot.  The contrast will make you really appreciate the lower level of activation.  I’m doing very well, now.  All that agitation and activation is gone.  Very, very rarely it comes back, but disappears within hours or even less than an hour.

It is thanks to kind people like you that I have made it this far. Words such as these fill me with hope, all the agitation and activation gone, that is what I yearn for every day.
I will get there. We all will.

Actually, the agitation has calmed down recently, it has been more "constant discomfort" lately, yey?

I will make a full symptom update later. It is also worth mentioning that my "red herring" results will come next Friday, I am just trying to exclude confounding factors as I mentioned. Will update you on the day.

Thanks, lots of love.

[PortugueseSea]

On 9/22/2023 at 6:27 PM, extraordinary said:

Hi PortugueseSea- just wanted to say sorry you are in this battle. Loneliest hardest walk yet for me - even with my husband so supportive. I wanted to check in and see how you are  - my journey started with Metaclopromide too - 12 days that changed my life  - followed by benzodiazepines and 6 months of mirtazapine. Now 9 months off and dysphoria and intrusive negative thoughts and anger - all the opposite of the lovely life and happy person of before- continue to be exhausting.  Praying our way through! Sending prayers of peace and healing your way.

Nice to make your acquaintance @extraordinary, it seems we are on the same boat, literally. I had it like two weeks, then PRN, then some drug trials and finally Klonopin PRN with Mirtazapine 10-12 months. 

I am like 7 months off everything, my worst symptoms are agitation, discomfort dysphoria and somatic sensations (inner tickling, piercing, burning, specially on the neck).

I will follow your intro. We will make it through this, both of us will, in @Rosetta's steps.

Thank you, lots of love.

[Rosetta]

Hang in there!  I know it’s very hard to live through this. -Rosetta

[PortugueseSea]

Thanks Rosetta, 

Actually, in the last two weeks activation/agitation have calmed down quite a bit, though I am still struggling with high levels of dysphoria/terror. I am not sure if this is a result of the original adverse reaction or a product of the fact I have come off Mirtazapine. Either way, it will go.

I will hang in there.

Muchas gracias Rosetta!

[PortugueseSea]

Update on tests;

As expected, the CSF analysis revealed nothing. There is no encephalitis. The neurologist will redo the MRI and the EEG just in case but that is that.
Thus, the results were a red herring and I am most likely dealing with drug damage as expected.

Alas.

I will keep moving forward.

[PortugueseSea]

Symptom update;

This have gone from unbearable to terrible recently, which is progress, no matter how little:

Agitation                    5/10                                                   Has come down somewhat, it was awful 6 to 10/10 all the time in 2022 and the first half of 2023

Terror                         7/10                                                   The symptom that has imply refused to budge, I life in irrational physical terror 24/7.

Somatic symptoms   3/10                                                   This is the symptom that has improved the most, it still strikes with a vengeance sometimes.


I have been doing my best to distract and not focus on the constant discomfort, that said, it is very difficult and feel very fearful this will last for a long time. I also have an irrational fear of permanent loss of quality of life. I am aware this second fear not rational and it is just a brain scared out of its mind. The first one, this lasting for a long time, is a perfectly reasonable fear as it has been 22 months since onset and 7 months off all psych drugs.

I feel that the fact that even on better days one of those three symptoms is constantly biting is major source of distress, I believe that when I start having days where all of the three are below 5 in intensity the war is won. I fully understand giving excessive attention to symptoms can make them worse, I am trying my best not to but I feel so uncomfortable I can't help it for the most part.

All in all, things are getting better after that hellish wave during the Summer, it is just that my baseline is still dreadful.

[PortugueseSea]

Landmark day;

On the 19th of October 2023, I had the first moments without any agitation/activation while standing in 22 months, although the agitation/activation was still noticeable while sitting down, the fact that it was not there while standing was a first, it is huge and definitely a clear landmark sign of healing.

[willieverheal]

Hi! I also have had aka for a while. I get vibrations and tension and inner tickle in different places travelling over my body. Comes and goes. 

[PortugueseSea]

Hello @willieverheal,

If it is any consolation my fasciculations have really improved. They happen rarely if at all. =D

Tension is still massive, specially on my back, neck and shoulders, though I do not know if and how to differentiate it from all the other terrible sensations going on.

One day at the time!

[PortugueseSea]

Symptom update;

This have gone from terrible to bad recently. This in the interval of one single month. I am trying not to be overly optimistic but I finally feel I am meaningfully moving forward.:

Agitation                    4/10                                                   Has kept coming down somewhat, it was awful 6 to 10/10 all the time in 2022 and the first half of 2023.

Terror                         6/10                                                   I think I have had my first improvements here, minimal, yes, but something.

Somatic symptoms   2/10                                                   Steady improvement continues.

The last 30 days have been more bearable than usual. I have found it easier to distract, maybe too easy at times. I have committed the sin of binge gaming in the evening sometimes. On the one hand, it is obviously bad, my wife things it can worsen my akathisia the next day and, tbh, I tend to agree, despite it not affecting sleep much.

I have also had a win that I thought I might never have when this whole mess started. At times, at times, I can actually enjoy reading. I can kind of focus on a book. This has become possible as the agitation has been slowly calming down. I am looking forward to that moment where I can read fully relaxed at a cafe, it might be the ultimate threshold for healing to me.

 

Now, the devil itself, my terror neuroemotion continues to be excessively sticky, it keeps my eyes teary and my mood low. I was telling a sad story to a client the other day and started tearing up. Like, what? That said, there have been ocasions where it has felt relatively better.

All of this is good news, it has taken so long for consistent gains. I will take it. I feel I can really relate to the veterans. Of course, I am saddened because my timeline to healing is years, not months. That said, I am moving... forward!

[PortugueseSea]

@Altostrata

As expected, the exams were a red herring, I will get retested (MRI;EEG) in March 2024 but the lumbar puncture was clean and the EEG results are non-conclusive.

November has also been better than previous months, it remains a mystery why I crashed so bad when I did in Summer/Autumn. I keep your words in mind, there are no late crashing waves, but I really have no idea what might have triggered it.

Alas, well,  thanks for keeping an eye on me.

 

[PortugueseSea]

I have decided to start including body tension and breathing discomfort in my symptom reports as these have become more prominent as other symptoms calm down or vary more.
I don't know, it seems like my brain is not okay with minimal symptoms, sometimes has to bother me and cause discomfort every single day.

I guess it rings true with that idea that the brain "works" on healing different parts of the "building" at different times.

[SlowVeil]

On 11/15/2023 at 1:36 PM, PortugueseSea said:

If it is any consolation my fasciculations have really improved. They happen rarely if at all. =D

 

Hello PurtugueseSea,

 

you mentioned here that your fasciculations have improved, but there was a lack of report on your fasciculations in your previous updates. Can you share a time line of your fasciculations and related symptoms? My fasciculations has been around 180 tics per hour. Glad to see you have doctors supporting you and recognizing your symptoms. Doctors like these are super rare in United States.

 

I had akathisia and restlessness in the beginning of my adverse reaction and they resolved ~3 months after stopping the medication, and the akathisia was going in a windows & waves pattern. My fasciculations have been present and very constant ever since mirtazapine was introduced (and taken off after 3 days), and so are the rest of my symptoms. Recently sleep spasms have joined the symptom list. I have never experienced any window in these symptoms.

 

it truly sucks that these medications can just send the entire body into a mess, sending you healing wishes.

[PortugueseSea]

Hello @SlowVeil, yes, I do not generally report on them because they have become minor! When this started I had fasciculations every 10m or so, they were pretty uncomfortable but, to be honest, terror and agitation were so overwhelming I barely minded them. They continued to happen regularly until, say, one year in. From then, they decreased in regularity and now if it happens once a day that is unusual. That is pretty much it!

 

Hope it helps!

As for my akathisia, yeah, it has been terrifying. I haven't had a comfortable day since this started but I have seen improvements. I had catastrophic suicidal akathisia at first. Now, it is "just" damn uncomfortable. The agitation has improved over time but the chemical terror aspect of it has been more sticky.

I am 20 months off or so off my reaction and about 8 off meds. 

 

Certain symptoms go away more quickly some heal more slowly, it is a mess =(

Nice to make your acquaintance! You too! Prayers of healing!
If you want a look at how one of my bad days looks like check out my next post, urgh...

[PortugueseSea]

A wave day with a full symptom cycle;

Today I have had a really difficult day, it is worth revisiting as I experienced all my major symptoms throughout the day. It shows how unpredictable things are and how long it takes for things to normalize. I have become quite functional but I suffer, rather than live, through my day:

I woke up and felt fairly okay, over time my ways felt more and more teary and psychical fear/chemical terror grew in me. One hour after waking up I was at the verge of tears. I left for work, taking a walk is soothing, I got some sunlight. I was able to work through it knowing that anything and everything could make me cry. Incredible dysphoria.

On my way home, slowly body tension started building, as this happened, the dysphoria/chemical terror started calming down a bit. As if my body/mind by focusing on a different horrific sensation had "let go" of the first one. The whole afternoon I felt like my body was imploding. I do not really know if it was simply tension or a mixture of tension and agitation.

I eventually left the house for another walk, during that walk, that bodily tension sort of "converged" into my upper spine/neck area, it felt like I had a ball of acid energy emanating from there. When that took place, my chemical terror was calmer, so was body tension everywhere else in my body.

I took deep breathes and kept walking. In the evening, as I stopped by my son's nursery school to pick him up, I was back to sheer chemical terror. My eyes pregnant with tears and the darkest dysphoria. Again, at that time, bodily tension, neck symptoms and tension/agitation had calmed down again.


This is what I deal with now that I am functional, last year, all of these were often simultaneous and I just squirmed at home. Healing happens, but it is messy and suffering constant. I look forward to a better 2024.

 

[peaceandlove]

^ The fact that you still go to work through all of this is incredible. You’re so strong. I hope this wave passes for you soon. 
 

question, is “Akathisia” just a movement disorder where you can’t stop pacing or is there a “mental Akathisia” as well where your mind will not stop the mental torture (intrusive thoughts) & extreme fear?? 

 

[PortugueseSea]

Dear @peaceandlove, thanks for stopping by!

The wave has indeed passed and I have actually stopped by to journal how I have been doing and check on some people!

As for the akathisia question, yes, there are three key components for akathisia, pacing/movement, terror and agitation. These symptoms fade over time but they might not fade at the same pace or present with equivalent intensity.

My case is paradigmatic, my pacing has gone some time ago. I do very rarely get bouts of it, but it has largely gone. My agitation stayed super high for the longest time but has come to calm down in the last few months. Terror, well, terror has just improved slightly and it seems that, for me, it will be the last to go.

I have a friend for whom terror left in a matter of months but agitation took literally years. Unfortunately, it is very individual.

Hang in there, I will follow your intro!

 

[PortugueseSea]

Symptom report; neck/head pressure/discomfort/acid feeling etc:

This symptom was practically constant through all of 2022, then it entered a windows and waves pattern in 2023 and now it happens only very occasionally. Great news!
This seems quite different to how agitation and terror work. Agitation has been in the decline slowly, with the occasional 3/4 day spike, and terror has been just... there, it has been the stickiest of symptoms. It probably got worst after I came off mirtazapine so that is probably why it is the stickiest one.