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Malina: going off ADs and how I need help now


Malina

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Posted

Hello everyone, I want to share my story and what is going on as for now, 1 month after going off duloxetine. Looking forward to any advice or warm words from you 🙏🏻 
This post will be long but I hope any of you will be kind to read it. (pls note that english is not my first language and I am sorry for any mistakes).

 

So, my history with ads as I tried to remember it is in my signature. I started at 20 yr old as I was then diagnosed with depression and anxiety and had major panic attacks. I must say that starting paroxetine at that time was life-saving for me. I stayed on it for a couple of years as I was battling depression, searching for therapies and anything that will help. For many years I took paroxetine and then venlaflaxine, was in different therapies, learned self care, found a supporting group of friends and changed my approach to life. I became very self-aware, gained a great knowledge of antidepressants, mental illnesses etc. I self-diagnosed with CPTSD and read a bunch of books which helped me more than anything before in my life. 
 

Fast forward to 2022, still on antidepressants (finally it was duloxetine 60mg for about 6 months), I ended 4 years long therapy, I started feeling really good (with only exception constant fatigue and some mild pain here and there). I decided to go off duloxetine as I felt 1. I no longer need it 2. It is actually making me worse with side effects. Of course my psychiatrists only idea was to get me off 60mg duloxetine to 30mg in a WEEK and from 30mg to 0 in a second week.. Which as you imagine ended up with me feeling like I was literally d*ing. So after 4 days of agony I came back to 30 mg and with the help of this forum ( consulted with my a doctor again) I started tapering by cutting the pill to smaller and smaller pieces, which took almost 3 months altogether. I was determined. I was feeling okay. I was so so hopeful and full of positive imaginations of living my best life after going off the meds. In the last stage I went off about 2mg to 0 in 2 weeks. The smaller the dosage was, the better I felt, and finally couple of days with ZERO duloxetine I was even happy and full of energy. 
 

And then all hell broke loose. Around 2-3rd of July 22 I was woken up at night with terrible leg pain. That pain was horrific and nothing I ever felt in my life, crying, screaming on the floor. My legs hurt from hips to ankles. After 3 days of it I drove to the hospital and got injection which helped for about 12 hours. Also it turned out at the same time my rectum prolapsed (rectal prolapse) which scared me as f*k.. 

 

It has been more than a month now and countless visits to the doctors (GP, gynie, orthopedist, neurologist, rheumatologist, gastrologist etc). I did so many blood tests and many kind of tests I don’t even remember the names of it all. I lost all my money on it. Nothing came out, nothing indicates any sickness and the doctors are hopeless. For today, I still await many more visits but already some of the doctors suggested seeing psychiatrist and taking antidepressants. 
 

Could it be the withdrawal? 
It is my biggest fear. I cannot imagine going back to antidepressants especially that mentally I am feeling too good for that. I am hanging in here But with every day living with this pain I am starting to loose hope and will. I have trouble with walking and climbing stairs. I cannot work and function. My legs, hips and pelvis hurt so much, some pain going now to the lower back too. I became very sensitive to sound and light and at least a couple of times a day my body kind of shakes for a minutes. 
 

If it sounds familiar to you, please contact me. Also, if you have fibromyalgia please let me know, it will be helpfull as it is one of my guesses for this situation. Thank you

2014-2016 paroxetine
2016 venlaflaxine 75 mg 
2017-2020 venlaflaxine 150mg 
2021 tried to switch to Wellbutrin (bupropion) but didn’t work out, 
2021 started duloxetine 30mg 
Nov 2021 - 2022 duloxetine 60mg + flupentixol
April 2022 flupentixol cold turkey and started tapering duloxetine
1st July off ad

  • ChessieCat changed the title to Malina: going off ADs and how I need help now
Posted

update: I am still digging in this forum and reading more and more, I now understand that I indeed have a very bad withdrawal syndrome,

somehow I was hoping to discover other illness… It is getting so bad I do not know how I will survive. I am in so much pain, I am thinking of going to the hospital every 2 hours or so. But I know there is no doctor that would help, I swear. so I am relying mostly on this forum and some internet research. I am thinking about contacting my psychiatrist again but I do not have trust in her and she might get me back on duloxetine without any advice how to taper it. What do you think?

As for today my symptoms are: weak legs, leg pain, terrible muscle stiffnes of the whole body, paresthesia, nausea, vomiting, back pain, panicking, feeling like my nervous system is burning, suicidal thoughts

2014-2016 paroxetine
2016 venlaflaxine 75 mg 
2017-2020 venlaflaxine 150mg 
2021 tried to switch to Wellbutrin (bupropion) but didn’t work out, 
2021 started duloxetine 30mg 
Nov 2021 - 2022 duloxetine 60mg + flupentixol
April 2022 flupentixol cold turkey and started tapering duloxetine
1st July off ad

  • Moderator
Posted

@Malina

 

Welcome to SA. This is a volunteer ran site helping people taper off psychiatric medications or have tapered off and are now healing.

 

This is your introduction page where you will receive information, ask questions and meet other members. We ask that you only have one introduction page so we can keep all your information in one place.

 

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications:

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

 

I'm going to give you some links to read that I think will be helpful:

 


Why taper by 10% of my dosage?


Tips for tapering off duloxetine (Cymbalta)

 

 

Withdrawal Normal Description

 

 Waves and Windows in SSRI Withdrawal

 

What to Do for Nausea, Queasiness

 

Digestive Problems

 

 

 

Because you have only been off Duloxetine a little over a month, you could try a reinstatement of 1 mg. It takes approximately 7 days for it to reach stability in your bloodstream and few more days for your brain. We suggest a small amount because you can always go up a little if needed.

 


About reinstating and stabilizing to reduce withdrawal symptoms


What is withdrawal syndrome?


How do you talk to a doctor about tapering and withdrawal?


Dr. Joseph Glenmullen's withdrawal symptom checklist

 

 

 

We don't suggest supplements on here as they can be stimulating to the central nervous system (CNS), except 2. If you would like to try one, try a small amount and wait a few days before introducing the other.

 

Magnesium

Omega 3 Fish Oil

 

 

After you have read the links provided please reach out with any questions you may have.

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper. Last dose June 24, 2024

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

  • Moderator
Posted
On 8/13/2022 at 6:31 PM, Malina said:

update: I am still digging in this forum and reading more and more, I now understand that I indeed have a very bad withdrawal syndrome,

somehow I was hoping to discover other illness… It is getting so bad I do not know how I will survive. I am in so much pain, I am thinking of going to the hospital every 2 hours or so. But I know there is no doctor that would help, I swear. so I am relying mostly on this forum and some internet research. I am thinking about contacting my psychiatrist again but I do not have trust in her and she might get me back on duloxetine without any advice how to taper it. What do you think?

As for today my symptoms are: weak legs, leg pain, terrible muscle stiffnes of the whole body, paresthesia, nausea, vomiting, back pain, panicking, feeling like my nervous system is burning, suicidal thoughts

You might want to try a weighted blanket. They sometimes help with leg symptoms. Please read the links provided and let us know if you have any questions.

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper. Last dose June 24, 2024

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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