AlexandertheGreat: Introduction and seeking help - akathisia

[AlexandertheGreat]

Hello all,

Back in April I tried to come off the drug Seroquel (300 mg XR) cold turkey and developed suicidal akathisia. I tapered off it in about a week. I felt fine at the time-- but then the boil frog of slowly intensifying, horrifying anxiety and restlessness began to take hold. I went about 2 months cold turkeyed, waiting for the akathisia to go away. Eventually it became so severe I started looking for relief. I took some old benzos which helped but eventually ran out. I then tried to go back on (reinstate) the Seroquel. I spent about 1 month of terrible suffering "re-stabilizing" at 300 before then starting to slowly come down (12.5 mg come down doses). I was doing this mostly on the Seroquel alone (only an occasional benzo for relief), but this was (still) a period of a lot of suffering.

 

I then went back to work. However, I was getting symptoms: amotivation, sedation, depression, etc, so I began taking a benzo a day. I then tapered while taking benzos (but I'm not sure about this because it seems the benzo simply "covers up" the akathisia without treating what's underneath).

 

I'm taking 1 lorazepam a day, 1 remeron a day (4 days in), and currently at 150 mg Seroquel XR/50 mg Seroquel IR. (Usually dropping by 12.5 mg when I'm "stable.") However, today was a scary day as I had akathisia at work through the one benzo. So, I took a second one.

 

Anything you share I will share with my psychiatrist. I'm not sure really what I should do...? I thought I could find sound guidance here.

 

So my questions are:

 

1 Should I quit my job, go back to Seroquel alone, and try to taper just from that without benzos? (Unpleasant though that will be)

2 Should I keep working, take the extra benzos, finish tapering the Seroquel, and wait for the brain to restore itself? Can I then come off the benzos afterward? (Or does the brain not know how to do this?)

 

The akathisia is the usual. Very severe. Dysphoric speech, pacing, movements, twitching in the limbs, intrusive negative memories, depression, lack of motivation, sedation, insomnia, no appetite-- a nightmare.

 

(And FYI, I've tried propranolol, vitamin b6, benztropine, etc-- only the benzos treat the akathisia. The remeron is new: so maybe it will have an effect in future weeks. Again anything you share I will run by my psychiatrist. I just want my brain back and my life back, and to be off all these drugs. =/)

[Jane318]

Greetings @AlexandertheGreat and welcome to SA!    We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes. 

 

Thank you for completing your signature.

 

I am sorry you have been through such an ordeal.  As you and many of us here at SA have discovered first-hand, these drugs usually cannot be stopped quickly without severe withdrawal symptoms such as the ones you have been experiencing.  

 

In most cases, SA recommends tapering off the antidepressant Seroquel first and then the benzo.  Definitely not both at the same time.  Please read: Taking multiple psych drugs? Which drug to taper first?

 

Please maintain a consistent dose of Seoquel - I see you are "Usually dropping by 12.5 mg when I'm 'stable.'").  This is playing havoc with your brain.  You might want to stay at a consistent dose for a week or two before you start to taper.  And if you choose to taper Seroquel first, please read 

 

Here as SA, we recommend a hyperbolic taper method, which you can read about here: Why taper by 10% of my dosage?  

 

We have some great tools to help you with this at:  https://www.survivingantidepressants.org/forums/topic/9167-how-to-calculate-dosages-and-dilutions-spreadsheets-and-calculators/

 

It’s important to keep tabs on your symptoms and adjust your taper amount and schedule as needed.  I now track my symptoms every day, rating them on a scale of 1-10 for severity.  This will help you identify your windows and waves and reveal your progress, which is encouragement we need!  You can use the following list of typical withdrawal symptoms as a template for a journal, if you wish:

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

You may choose to also track your foods and activities to identify things that trigger symptoms as well.  We do encourage people who are tapering to avoid caffeine, alcohol, and recreational drugs.  Many prescription and OTC drugs can cause problems too and should be avoided as much as possible. 

 

We recommend only two supplements here at SA, magnesium and omega-3 fatty acids.  So if you decide to try a supplement, even those we recommend here, start with a very low dose.  If you tolerate it well, you can increase the dosage slowly over time.  

 

As you taper, and even in protracted withdrawal, it is very normal to have periods where you feel better, and periods where you feel terrible.  This is what we call the windows and waves pattern of stabilization.  This is actually a good sign of healing!  Read more about windows and waves here:

 

Windows and waves pattern of stabilization

 

We have many threads on how to cope with symptoms – I encourage you to check out the various forums / links on the SA.org home page, including our our Symptoms and Self-care area. You might find some useful strategies, if you don't already have some.

 

This is your introduction topic.  Each member gets one intro topic- please post updates and questions here, in this thread.

 

Do explore the rest of the forum – there is a lot of great information here.  Be sure to read “About SurvivingAntidepressants.org,” which has good information about how to use / search the site: https://www.survivingantidepressants.org/forums/topic/54-about-survivingantidepressantsorg  

 

Also, feel free to read and comment on the intro threads of other members.  This is how you build a community of people who understand what you are dealing with.   It is so helpful to connect with others who are experiencing the same things.

 

I look forward to following your journey, and helping out in any way I can.

 

Best wishes.

 

 

 

Edited October 25, 2024 by Jane318

[Jane318]

Greetings @AlexandertheGreat - Checking in to see how you are doing.  Let us know if you have any further questions.  Hope you have a good weekend - Best wishes.

[AlexandertheGreat]

16 hours ago, Jane318 said:

Greetings @AlexandertheGreat - Checking in to see how you are doing.  Let us know if you have any further questions.  Hope you have a good weekend - Best wishes.

Thank you Jane, and I’m grateful to have this site as a support group. Well, the  benzos simply stopped working around October 20th. I could tell they were weakening as the malaise kept growing when I was at work. Around the 22nd/23rd I stopped taking them and descended into a horrible, akathisia-hell, the worst day of which was the 24th. I do think the remeron is of some help; I did have intervals of the suicidality I experienced over the summer, but they were passable and I was able to weather it and simply suffer through the days. (The summer akathisia was indescribable.) I followed your advice and stayed at 150 mg for two weeks which did allow my nervous system to stabilize. I had a short hope I might be stable enough to work and taper—but the side effects are too severe to do this. I ended up requesting a sick leave from work, which they were kind enough to grant to me with a doctor’s note explaining the situation. I’m also grateful for missd.co which has resources explaining to people what akathisia is.

 

I began my at home tapering yesterday, and things are relatively “OK.” I’m at 100 mg extended release/40 mg immediate release. Symptoms today have included some twitching, unpleasant nerve signaling, and a few mild panic attacks—but I’m not pacing, getting arm movements, or having vocalizations (just to be clear—that’s a euphemism for screaming). I’m “OK” now without the benzos—so, it gives me hope I can continue this slow tapering and—God forbid—maybe be normal within the next months.

 

I will say—to any psychiatrists who read this—the prescribing practices for these drugs needs to change. Robert Whitaker is right in his theses about iatrogenic harm—and that the drugs are themselves disabling. These medications should be given only on a short-term basis, and a goal of treatment should be weaning the patient off them and restoring them to full social functioning. I’m also inclined—after having endured this—to think prescribers need to take these drugs themselves. Otherwise, I don’t think you can comprehend the seriousness of the side effects.

[Jane318]

@AlexandertheGreat -

 

Thank you for the update - I am encouraged by how you are moving forward in a thoughtful and informed way.  You are courageous!

 

Just to clarify - it sounds as though you essentially cold-turkeyed the benzos?  I am concerned that you will suffer withdrawal effects from the benzos and from tapering the Seroquel at the same time.  Please continue to be mindful of your symptoms and be ready to hold wherever you are to stabilize.  Also do not taper too quickly - we advise cutting no more than 10% of prior dose no more often than every 4 weeks.  Many find it helpful to hold longer than 4 weeks before next cut.

 

Can you please update your signature for today and as you go?  Include date you stopped the benzos.  Include dates you make each Seroquel cut and list all drugs you are currently taking.  This helps us immensely.

 

We are here for you - let us know if you have any other questions or concerns.  Best wishes - Jane