My anti-depressant nightmare - A warning for others

 

This isn't a creative post. It's real. And it's long overdue I spoke about it. 

(Oct. '22)

The Problem

Cold Turkey 

I've had lifelong anxiety issues. From childhood. Depression comes and goes. These things weren't diagnosed in my day. I self-medicated with alcohol.

In my late thirties, I was put on anti-depressants Cymbalta, (also known as Duloxetine) after a type of breakdown.

12 years later, I decided to come off them as I was still struggling mentally and it seemed pointless. I aimed to do a reset.

Within one day, withdrawal effects began. Within a few days, they were huge.

• Increased heart rate (palpations)

• Dizziness

• Constant tinnitus in both ears, 24-7

• Increased anxiety (near panic). Not being able to cope.

• Highly emotional. Crying etc.

• Depression.        

• Brain fog (difficulty concentrating etc)

• 'Brain zaps' - a type of electric shocks through the body. Hard to explain but many others complain of the same problem.

    

They were pretty severe effects. After a week, there was no decrease. I thought surely it would get better. I'd already suffered enough so I thought it would be like heroin and just had to push on through the cold turkey. 

It NEVER got better. A few days later I got the doctor to put me onto another anti-depressant but it didn't help. After weeks of this, I was ready to do myself in. When your mind is affected it is very hard to see outside of that. In other words, the enemy is not just the drug. It's your own brain.

I went back on the damn thing. I had lasted 54 days. In all that time, the withdrawal effects never got better. Not even 5%.

Re-instating 

After re-instating, the brain zaps disappeared but everything else remained. Just not quite as severe. I still have all those effects. I have PAWS. (Protracted Acute Withdrawal Syndrome). It will be five years in January. I've never been the same since.

During this time I began doing research and found that many others were in the same position. I found a Facebook Group, one of many actually, called Cymbalta Hurts Worse, with 35,000 members. Most from the U.S. but other parts of the world too.

I learnt that most had the exact same problems. It even has a name. Cymbalta Discontinuation Syndrome. Some had taken their own lives. There was a class action against the pharmaceutical company Eli-Lily. They settled out of court. They kept on with operations as normal. Doctors are no use because there's limited medical material published on these problems. It's been buried. I found one Doctor who knew about it but most think it's the patient's delusions. (Mental health problems, correct?). My normal doctor put me through the ringer to find out what was causing my dizziness etc. Heart test (overnight). Sleep test. MRI scan. etc. Nothing was found.

Tapering

I learnt about tapering. Proper tapering. Not just morphing from one drug to another over a month as doctors would have you do. This group has many files you can download, including how to taper slowly, how to live with different symptoms and a copy of the original clinical trials. There was never any long-term human studies done. There was one done on rats that showed that it was passed from mother to baby in the milk. And still, they passed it. If you've seen the 2021 series Dopesick, you'll understand how this happens.

I was supposed to taper slowly. Very slowly. They recommended drops between 2.5% to 5%. 10% at most. I wanted off it asap and tried it at 10% but failed. The side effects were too much. I let things settle awhile and tried again at 5% but failed again. 

Finally, I began doing it properly. I believe the longer you've been on the drug, the more significant the chemical changes to your brain (that's how the damn thing 'makes you better' after all) and the longer it comes to take off. I now drop one bead every six days. You have to tip out all the tiny beads from the capsule and count them back in. Each capsule does not have the exact same number of beads. I found that out the hard way. 

Me counting the beads and how I feel about it. 
(Down to 65 beads now, from 220).

I've got it down to a fine art now. Any faster and I start to get highly emotional and anxious. The feeling that I can't cope with life. (Some people can't even leave their beds). And I'm already bad enough. I wake with anxiety every day. I sometimes cry for little to no reason. I struggle with normal life. I can't do physical work because of the dizziness. I had to quit my part-time job at the nursing home. 

I present okay so you wouldn't know. It's not like you can physically see it. It's getting harder as I'm getting lower but I'm actually doing okay. Plenty of people don't cope at all.

(My last novel, Perve is a metaphor for the horrors of anxiety as half of it is set in a prison. I literally just transcribed how I was feeling. It was the hardest thing I've ever written, and  until I'm free of this, the last).

I've been tapering properly since January 2020. At the current rate I should be off by November 2023 but people say it gets harder towards the end. You have to listen to your body (and mind, which can be hard to be objective), and adjust accordingly. I hope to be clear in 2024 sometime.

My only hope is that my body will start to recover once I'm free of this poison. But I may never be. Have to wait and see. The tinnitus alone is enough to drive you crazy. It's made life very difficult at times and has placed great restrictions on my life. 

(May 2024 Update. I've had to hold for longer the lower I go. Sometimes a month at a time. I still have to function, work etc. I got to 20 beads then began getting seriously dizzy, anxious etc and had to go up to 21, which I held for 80 days. I'm still bad so just gone up again to 23. I've never been this bad. Extra stress in my life is probably playing a part too. I feel as though I'll never get off. And I'm barely coping. The worst I've ever been). 

(August 2024 Update. I've admitted defeat. I've come too close to suicide (I had taken action) and I'm really struggling to cope with work and life. I cry a lot. I'm anxious all day. It's a living nightmare. So I've started going back up. I've gone from 23 beads (which I was on for 3 months) to 25. I will keep going up until I feel normal. Otherwise I'm just not going to make it. Every day is a battle and life just shouldn't be this hard. 

If I don't stablisise... I just can't see me putting up with this for much longer. I'm already exhausted. I know people love me and I'll hurt them immensely but I'm stuck in this body. This mind. It's a living hell). 

(Original 2022 post continued); 

I could go into more detail but if you'd like to know more, I'm happy to answer any questions. If you're on this drug it may be too late. Just don't ever go cold turkey. You're screwed. 

I've been on other drugs and had no issue coming off.  This one is just evil.

Talk is growing on these issues. Too late for many but at least it's happening. Certainly when I began there was nothing. 

This is an excellent resource for safely coming off  psychotropic drugs and tips on how to cope if you're struggling. I only found it this year. The Withdrawal Project.

I hope this helps someone. 

This Ted Talk may help you dealing with the core problems. Anxiety and depression.

If you have any suggestions what I could do with this information to help others, or if you've been through similar, please leave a comment or share. Anything to make sure people know that this one drug is one to avoid.

Peace

Anthony

My new book will be out soon. Perhaps you'll be able to appreciate how much effort its taken me to put it together. It's not something that comes easy. The opposite. It's a huge struggle. Why I do it, I don't know.

(It will be the last book until I am free of this drug. I expect things to get worse as I get closer to the end).

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