Hi, are there any Dutch people or people from other countries who can help me with the following:

 

I've been living in hell for four years after incorrectly tapering off Venla and Mirtazapine.

 

Then I started again, and now I'm tapering off again. I experience extreme depression, anxiety, depersonalization, and blurred vision. It's truly torture. Every day is a fight for survival. Will it ever get better? Does anyone have any tips?

 

Five years ago, I started tapering off with my doctor. From 225 mg Venla to 150 mg, then to 75 mg, and then to 37.5 mg.

Then Mirtazapine from 15 mg to 7.5 mg. Eventually, I managed to taper off both doses completely. I managed to hold out for three weeks, but I had to sound the alarm, otherwise I wouldn't have survived. I experienced extreme anxiety, brain shocks, and went completely crazy.

 

Then I had to immediately start again with 15 mg and 75 mg, and quickly went down to 150 mg and 225 mg. In those 3.5 years, I never returned to my old level.

 

Then I started tapering down to 187.5 mg and then to 150 mg. My anxiety and depression worsened.

 

After that, the mirtazapine went to 7.5 mg and the venlafaxine to 112.5 mg.

After reducing the mirtazapine, I also experienced blurred vision and depersonalization.

 

I've now increased my mirtazapine back to 15 mg, hoping the blurred vision and depersonalization will improve. It's truly hell. Will this ever get better?

I don't believe the depression or anxiety has returned. I think this is PAWS. But no one around me believes that. Even doctors and psychiatrists don't. But I never had these symptoms before I started the medication.

 

I don't dare change my medication anymore. I might have to stay on this dosage for a long time in the hope that it will improve.

 

Sometimes I feel a little better for an hour or two, but that doesn't last long. I can no longer do my work properly. I can no longer be a good father to my children. It's truly torturous, something you wouldn't wish on anyone.

 

And you're especially afraid that the symptoms will never go away, especially after such a long time.

 

I hope you have some tips for recovery.

 

My biggest complaints now are akathisia, extreme restlessness, and torture. Blurred vision, depersonalization, and severe depression. My life has been hell for four years because of this.

 

If you can help me or give me advice, please feel free to send me a message. Thanks in advance.

Hi @Menno

 

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.

I'm so sorry to read about the tough time you've had recently you will find plenty of support here for sure.

 

15 hours ago, Menno said:

Hi, are there any Dutch people or people from other countries who can help me with the following:

I have taken the translation of your post and broken the text up to make it easier to read. 🙂 We only allow English on here im afraid. We do have many people from all over the world. If English is difficult for you please use google translate to make your posts for us.

 

Reading your post you have tapered much too quickly and also reinstated at a much too higher level. You also appeared to have moved doses around a lot whilst not stable. This can cause kindling which only makes things worse.

 

Tapering Information

 

Hypersensitivity and kindling

 

To make it clearer for us can you please redo your signature for in the following format with all dose changes:

 

01 Jan 2025 Mirtazapine 50 mg

01 Feb 2025 Mirtazapine 25mg

and so on...........

 

Makes it much easier for us to understand what has happened to you. 🙂 

 

For the minute I think you are right you should keep your doses as they are and not make and more changes. It can take some time for find stabilisation especially after everything you have been through.

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 

How long does it take to stabilize after reinstating or updosing?

 

The Windows and Waves Pattern of Stabilization

 

15 hours ago, Menno said:

Will it ever get better? Does anyone have any tips?

Yes! It will get better but as I said above it can take some time Im afraid. Have a read of these if you are able to:

 

Apathy, anhedonia, emotional numbness, emotional anesthesia 

 

Derealization or Depersonalization

 

Non-drug techniques to cope with emotional symptoms

 

Easing your way into meditation for a stressed-out nervous system

 

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

Ways to cope with daily anxiety

 

"Change the channel" - dealing with cognitive symptoms

 

Dealing With Emotional Spirals 

 

Shame, guilt, regret, and self-criticism

 

Important topics about symptoms, including sleep problems

 

We wait for your updated signature with all your dose changes.

 

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.

 

Chippy

Hi @Menno,

 

Welcome to the forum. 

 

15 hours ago, Menno said:

I think this is PAWS. But no one around me believes that. Even doctors and psychiatrists don't. But I never had these symptoms before I started the medication.

 

This is unfortunately very common. In general, you know how you feel, you know how you felt pre-drug. If you have new symptoms that feel like nothing else that appeared after starting or reducing medication doses there's a good chance it's related. I'd trust your intuition on this one.

 

 

Some stability after lots of dose changes is likely a good idea. If you were previously stable on the 15mg the hope would be that in time, you will restabilise on that. In how much time, it is difficult to say, but feeling better for brief periods is a good sign.

 

Would you mind summarising your taper with some dates a little, and when you increased mirtazapine again? Some bullet points with doses and dates or months would be useful.

 

How long has it been since you came off of Mirtazapine and then reinstated?

Hello @Mennoand welcome to the forum, we’ve got you here and we understand your suffering and story. I’m terribly sorry to hear of your case, it sounds truly devastating but you’re not alone in what you’re going through. 
 

It definitely sounds like some form of withdrawal syndrome from taking these medications. Venlafaxine is regarded as one of the more brutal SNRI’s to come off and others here on the forum have had their own brutal journey coming off and healing from Mirtazapine. Definitely sounds like your original tapering process was probably far too rapid for your brain and nervous system to bounce back quickly, which has most likely resulted in dysregulation. Going back on the medication can disrupt the brain and CNS even further in some and it’s much more common than people and especially medical professionals think. 
 

You could very well still be in withdrawal syndrome whilst even on the medication still because the doses aren’t exactly back to their original levels. I believe I suffered from the same issue when I was on my medication still and stabilising may involve returning back on the Venlafaxine + Mirtazapine and up dosing back to your original levels and holding and seeing if your symptoms improve from there. This however could further disrupt your brain and nervous system so it’s definitely a risk but only you can determine whether you’d be interested in trying that. 
 

If you’re having periods of feeling better that definitely points at signs that despite being on the medication still and dysregulated that your symptoms can fluctuate and improve even if it’s very brief and temporary. This is probably a windows and waves phase occurring. I experienced this whilst still being on Venlafaxine myself as well, long after my original withdrawal from Sertraline. 
 

Either way, you definitely need to come off the medication entirely so you can heal from this. It’s clear you’re stuck between dependency and withdrawal, so you need to make a decision on whether to continue through your taper and come off and push through the symptoms or go back up and try to stabilise. Only you can make that choice for yourself. 

11 hours ago, Luke said:

Hi @Menno,

 

Welcome to the forum. 

 

 

This is unfortunately very common. In general, you know how you feel, you know how you felt pre-drug. If you have new symptoms that feel like nothing else that appeared after starting or reducing medication doses there's a good chance it's related. I'd trust your intuition on this one.

 

 

Some stability after lots of dose changes is likely a good idea. If you were previously stable on the 15mg the hope would be that in time, you will restabilise on that. In how much time, it is difficult to say, but feeling better for brief periods is a good sign.

 

Would you mind summarising your taper with some dates a little, and when you increased mirtazapine again? Some bullet points with doses and dates or months would be useful.

 

How long has it been since you came off of Mirtazapine and then reinstated?

 

I experienced a lot of trauma in my youth. I had a troubled home life. I was sexually abused by a soccer coach for four years, which included violence and then stalking. I received a lot of medication and diagnoses. I developed ADHD, borderline personality disorder, and then PTSD. I underwent four years of therapy and was eventually put on venlafaxine and mirtazapine through a private psychiatrist.

June 2021

My doctor called to ask if I wanted to reduce my medication because they're looking at people who have been taking antidepressants for a long time and might not need them anymore. I wasn't depressed, so I said yes. I was never anxious at the time. I was confident, perhaps a bit arrogant. I had a great sense of humor, made lots of jokes, and didn't really think about anything.

Venlafaxine dosage tapered from 225 to 150 to 75 and to 37.5 in 6-8 week increments.

Few withdrawal symptoms.

Mirtazapine was finally reduced from 15 to 7.5 mg.

I was always stable and drank a lot, 8 beers a day. No problems.

I was on a dosage of 37.5 venlafaxine and 7.5 mirtazapine for 4 months.

June 2022

According to the doctor, I could stop and go to zero with both medications.

I developed many symptoms: anxiety, difficulty sleeping, nightmares from the past. Extremely tired. Brain jerks all day. I felt strangely dizzy. Sometimes I couldn't feel parts of my body. I thought I was paralyzed. I had suicidal thoughts. Extremely restless. I continued for 3 weeks.

July 2022

Called my doctor and had to start medication again. Venlafaxine 75 mg and mirtazapine 15 mg

August 2022

Called my former psychiatrist, Mrs. Lahade from Westerparc Voorschoten. I was able to return to her. My dose was increased to 150 mg of venlafaxine. I remained restless and was given oxazepam to help me cope. The build-up was hell.

September 2022

Venlafaxine was increased to 225 mg due to anxiety and fear. The build-up was hell. Sometimes I had a reasonable day and other days I felt terribly anxious and depressed. According to Mrs. Lahade, this was due to the alcohol. I tried various brands of venlafaxine to see if that was the cause. I stopped drinking alcohol. Sometimes I felt a little better and sometimes very bad. I relapsed into alcohol consumption several times.

March 2023

I felt better for two weeks, but I had frequent food cravings from the mirtazapine an hour after taking it. Psychiatrist Lahade asked if I was sleeping well. I slept well, so she said to reduce the mirtazapine to 7.5 mg. Over the next two weeks, I became increasingly restless and decided to go back to 15 mg with Mrs. Lahade.
I had a DNA test done for the medication through the pharmacy.

May 2023

It took seven weeks before I felt normal again. I regularly took oxazepam to get through the days. I had many complaints, feeling strange, anxious, and depressed.

June 2023

I felt good for two weeks, and then, from one day to the next, I became extremely nervous. I spent the whole day completely crazy and anxious. I thought I was going crazy.

July 2023

Discussed with Mrs. Lahade and increased venlafaxine to 262.5 mg. I continued to be restless, extremely tired, anxious, and nervous.

September 2023

In consultation with Mrs. Lahade, I went back to 225 mg of venlafaxine. In one step. I had reasonable days, but also extremely restless and nervous.

January 2024

I decided to quit alcohol permanently because I continued to have anxiety and nervous feelings. I had reasonable days, but also very bad ones. I never stabilized at all. Often, extreme restlessness and anxiety would suddenly appear after a reasonable day.

May 2024

I had reasonable days, but also bad days. I thought it was the medication that was preventing me from stabilizing, and I know from the past that I also felt well with less medication. I reduced my venlafaxine by 37.5 mg to 150 mg over two months.

August 2024

I continued to feel restless and anxious and saw an energy therapist. He told me I was out of balance. From there, I decided to reduce my mirtazapine to 7.5 mg in two steps over two months. Meanwhile, my GP referred me to Neurocare The Hague for RTMs therapy for depression.

September 2024

In addition to anxiety, depression, and feeling nervous all day, I also developed a feeling of being outside my own body, blurred vision, and panic attacks.

October 2024

I spoke with the psychiatrist Guit at Neurocare The Hague, and he told me to reduce my mirtazapine to 3.75 mg. I slept very little to nothing for six weeks. My vision became even more blurred, and I no longer felt completely in my own body. I had RTMs, 40 sessions at two different locations. It didn't help.

January 2025

I decided to go back to 7.5 mg mirtazapine because I'm having suicidal thoughts and feelings, being anxious all day, having blurred vision, and feeling out of my own body. This has helped me sleep better again, but the anxiety and depersonalization remain.

March 2025

I completed RTMS without success. I've been thinking about PAWS syndrome for a long time, but psychiatrist Guit doesn't believe in it and has no experience with it.

 

 

He doesn't want to change my medication and sends his advice to see a haptonomist back to my GP. In the meantime, I've also contacted the tapering clinic in Amsterdam and the psychiatrist Christiaan Vinkers who works there. I wanted to register for the tapering clinic, but there's a very long waiting list.

May 2025

I contacted my old psychiatrist, Ms. Lahade. She doesn't want to take me back because she's unfamiliar with Paws syndrome. I asked her what I could do to improve the blurred vision and depersonalization. I'm considering reducing my mirtazapine dose to 15 mg or slowly reducing my venlafaxine. She advised me to reduce the venlafaxine dose but to wait for Leiden. I decided to remove the granules from the capsule myself at the beginning of May to gradually reduce my symptoms, hoping they would improve. Unfortunately, not so far. I'm now on 112.5 mg.

What have I done in those 3 years?

Acupuncture, energy therapist, sacral therapist, vitamin coach. I've taken vitamins, also on the advice of a psychiatrist. Vitamin B complex, magnesium, vitamin D, and fish oil. Blood tests: once my iron was too low. once my vitamin B6 was much too high. twice my blood sugar was too high in the morning. Vitamin B6 was even so high that my psychiatrist called me over the weekend to stop taking the B complex tablets. I was already experiencing numbness in my ear, for which I had to see the ENT specialist twice. I had to take the B complex because I quit drinking alcohol.
I googled a lot about complaints about paws, anxiety, etc. I took courses on anxiety online. I tried to contact many psychiatrists. I asked psychiatrist Jim van Os questions at Psychosenet. I contacted the Association for the Abolition of Pain and I'm still in touch. I read a lot about paws, anxiety, depression, physical complaints, etc. I consulted many Facebook groups for advice. Mindfulness meditation. I went to the opticians for three different measurements. I went to the ophthalmologist for an examination and measurement. I contacted Pauline Dinkelberg from the Afbouw Association, who has been researching PAWs for years. She told me about people with brain damage caused by these medications. I've taken courses on anxiety, which are offered by Wouter Manders and Wijnand van Dam. I listen to a lot of podcasts.

My current symptoms:

Depression
Anxiety all day
Fear of anxiety
Depersonalization
Blurred vision
Unable to relax
Restless all day
No peace of mind, always on edge
Just surviving
Problems at home
Problems at work
Extreme fatigue
Lost confidence in my body
Worrying, lost confidence because I can't explain why I feel so bad. And I can't explain it to anyone because it's incomprehensible to myself, let alone anyone else. No one dares to give advice or a solution. Panic attacks
Feelings of despair, this will never be okay.
How can I keep feeling so bad?
What's the cause?
Could ECT help with this?

What would I like to do?

Do you have experience with Paws syndrome?
Looking at medication.
Correct dosage based on blood levels.
Brain damage, neurological abnormalities
Fear that something is wrong in my head
Acceptance support
Living instead of surviving
Becoming stable