YellowRoses: the beginning of the end of psych drugs

[YellowRoses]

Hi, my signature has a potted meds history, there were others I don't remember. I recently spoke to my prescribing doctor (pdoc) and she agreed to assist with withdrawal from quetiapine (Seroquel XR) but when I tried by reducing 50% over the fifth day I unravelled completely so went back to full dose feeling like I a failure. She seems not to have a handle on what to do, so it is up to me to get informed. Have been on quetiapine since mid-2014 with a brief hiatus when a psych added Lithium which was disastrous, huge anxiety spikes and meltdown in public. But the psychiatrists said the response may have been psychological, rather than the lithium. I stopped the lithium anyway. I feel I am under a constant mental and physical oppression, I developed tinnitus in 2016 when I was briefly on another brain med, can't remember which one, the tinnitus continued when I stopped it. I struggle to be creative, I want to write, paint and create meaning in my life but mostly can't be bothered. I cycle through hypomania and despair with regular monotony. The drugs seem to do nothing to stop the bipolar cycle, although truthfully the lows are not as low since the mirtazapine increase last year, and the highs are not as high nor as prolonged as they used to be before the quetiapine/Seroquel. The only plus side is it regulates my sleep well most of the time.

I found this forum via Mad in America when I searched for quetiapine withdrawal on that site.

Brief on physical health: I am in my mid 50's. I have gained 30 to 35 kilos since 2014 I had a full hysterectomy and oophorectomy so instant menopause and also went onto quetiapine at that time mid-year. I am SO hungry all the time, I try to eat sensibly, but I eat too much and as I have a back injury and neuropathy in one leg, walking is difficult - I can do 1 to 1.5 km a day that's it. I started swimming again to try to reduce weight but both shoulders developed bursitis. So exercising is in the 'light exercise" range. I really want to lose most of the drug-induced weight gain.

My goal is to come off Quetiapine all together eventually and reduce mirtazapine back to 30 mg.

Because I am on an XR coated Seroquel the lowest dose available to reduce is 50 mg at a time I see from the information pages you recommend 10% at a time. I don't really know how to go about making a long-acting tablet into a 10% reduction. I am wondering if I could try to reduce 50mg (I went straight to 100mg skipping my morning dose and that didn't work) for 6 weeks and see how I go?

I have read some of the advice here. I forgot I also have 25mg IR quietipine as a PRN but have not used it for some time. Perhaps I could do this and see.
Drop 50 mg of XR and take 25 mg of IR so = 1 x 50 mg XR + 1 x 25 IR in the morning and the two 50 mg XR (=100mg) at night for say a month, to see what the effects are, keeping track of any withdrawal symptoms, then drop the 25 IR so only on 1 x 50 mg SR in morning for a month, watch and wait, drop that to 25 mg IR for a month, then stop the moring dose for a month.
Then possibly go to the same formula as all that - repeated at night. Does that sound possible or sensible to begin?

 

[ChessieCat]

Hi YellowRoses and welcome to SA,

 

I'll give you some links to check out which may answer some of your questions.  This is your own Introduction topic where you can ask questions and journal your progress, so after reading the information please ask your questions here in this topic.

 

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

What should I expect from my doctor about withdrawal symptoms?

 

Before you begin tapering what you need to know

 

Why taper by 10% of my dosage?

About reinstating and stabilizing to reduce withdrawal symptoms
 

Taking multiple psych drugs? Which drug to taper first?

 

Tips for tapering off Seroquel (quetiapine)

 

Tips for tapering off Remeron (mirtazapine)
 

Windows and Waves Pattern of Stabilization

 

Brain Remodelling

Video:  Healing From Antidepressants - Patterns of Recovery

[YellowRoses]

Thank you ChessieCat - lots to process here, feeling unwell will come back to all another day now.

[ChessieCat]

Yes, it can be a bit overwhelming when you first get the information.  Just go through it bit by bit as you are able to.

[YellowRoses]

Have read all the recommended parts and watched the video.
Discussed with my partner and will proceed to have a chat with my p-doc about compounding chemist script for  10% reduction in Seroquel. Don't see P-doc until end of the month. In the meantime will prepare myself for the changes. Thanks for all the info. Will taper Seroquel first, was not intending to taper mirtazapine, but see the info there and will consider once I am out the other end of Seroquel after a period of settling and having my brain re-set. Have found a compounding chemist on a route home from my doctor's office to make it easy to get the 10% reduction made up (hope they do it there.) Thanks for everything. will come back when needed. ta.

[ChessieCat]

Sounds like you've got the information you need.

 

It's a good idea to get quotes for compounding:  http://www.pccarx.com.au/contact-us/find-a-compounder?param_zip=Enter+Postal+code

[YellowRoses]

Since I discovered this fabulous site and set my mind on a course of action, knowing it is doable to come off tthe anti-psychotic meds I feel SO much more in control of my life and have hope that I can get mySelf back.

 

Thank you to the founders and the admins who run such a professional lived experience site.

[YellowRoses]

TAPERING OFF SEROQUEL - Quetiapine XR 
In preparation for talking to my Dr later this month and to get my head around what this means and what compounds I will require, I have just done a spreadsheet reducing my dosages from 200mg to 2 mg of Seroquel XR at a calculation of 1 month per reduction. (2mg being 1% of the overall starting dose.) On the understanding it is not an exact science and some may go slower and some faster than a month per incremental taper depending on waves and windows and my responses and what else is happening in my life too probably.

Calculating that it If I start 1 November 2018 it will be November 2021 before I am off the Seroquel at 10% increments.

Data attached showing the rough guide by months AND -the compound medicine I would need for the first year.
I take my 200mg dose spaced evenly morning and night - currently, 100mg am + 100mg pm. (Which is an unusual way to take it apparently).
Just saving this here as my first foray into this relatively complex process.

A Maths thing!
I also learned something about maths today LOL! I
You can reduce 10% infinitely! 😆I was still going up to line 50 something before my partner said... "Ummm, there might be a cut off point, why don't you ask."
So I checked and read this Why Taper by 10% of my Dosage? page and found the answer.
 

Quote

"Mathematics whizzes may recognize that the 10% reduction formula is a geometric progression (asymptote) approaching but never equaling zero. At a very small dosage, likely less than 1mg, when reductions no longer cause any withdrawal symptoms, you may want to simply stop."

 

More here about: Tips for tapering off Seroquel (quetiapine)
 

[ChessieCat]

When to end the taper and jump to zero?

 

If the amount you want to measure is a "difficult" number it can be easier to round the number - round UP, not down.  The next reduction will need to be calculated on the dose you took (ie the rounded up amount).

 

It is important to throw out the calendar and listen to your body.  If you are going through a stressful time, eg holidays, sickness, etc, it is better to hold for longer.  

 

Stabilising After a Reduction - What Does That Mean?
 

Withdrawal Normal Description

 

One of the mods created this:  Tapering Calculator - Online
 

Keep it Simple, Slow and Stable

 

This topic has links to various symptom lists which you can either print out or download.  Dr Joseph Glenmullen's Withdrawal Symptoms

Rate Symptoms Daily to Check Patterns and Progress

 

Keep Notes on Paper

 

Unfortunately during tapering there will most likely be times when you feel discomfort.  It is important not to panic and to try and stay as calm as possible.  We recommend learning and using Non-drug techniques to cope

[YellowRoses]

😆 Thanks Chessie Cat.
I sure could have used that spreadsheet took me hours to do mine. <LOL>. But I learned something important and really got my head around what the reductions look like by doing it all with a calculator and punching it into a spreadsheet. Thanks so much for the next round of in-depth knowledge. Will peruse over next week. ta.

Understood the time is all based on my tolerance and reactions and that slowly is the key. I am prepared that there will be setbacks etc. 

[ChessieCat]

8 minutes ago, YellowRoses said:

slowly is the key

 

It is very easy to get impatient and want to go faster.  I've experienced it several times myself and I've noticed the same thing with other members who have been plodding along and then suddenly have the urge to hurry.  So be prepared for that.  One tip is to look at how much you've reduced by, not how far you still have to go.

[YellowRoses]

Then there is the compulsive thoughts like this morning before I have even started...
"Look, it's gonna take years that way. Let's try dropping 50mg in the morning and see if we cope".
"Umm, nope, been there done that before remember! Unravelled in the first week. This is a MUCH more sensible approach and all that lived experience knowledge and strength in SA telling us how to do it, chose that."
 

'slowly is the key' must become my new mantra.

[YellowRoses]

My brain is not working very well this am -  if the initial 10% taper brings on withdrawals that don't stabilise, perhaps I should have a further compound in the cupboard so I can add back in say 5mg.

Perhaps it would be best if I have two compounds made - 1 compound equalling the 40mg needed + a standby 5mg? and if that works to stabilise the withdrawal stay on the 50mg+40mg+5mg for a few weeks (4-6 whatever) then drop the 5mg. Perhaps better to have that 5mg on hand to begin with to save having to jump straight back to 50mg or spin-out and rush off to doc (who is miles away) and organise yet another compounding. If I don't use them though they could be held for when I am at a multiplication of 5mg.

 

Does that sound like a sensible approach?

[YellowRoses]

Conversely, from the leap in and be damned approach above, the next moment I am clutching my meds mentally saying "Why play with the danger!" and "Can you cope with (potentially) years of destabilisation?"

So I googled "pros and cons of 10% taper from psychiatric drugs."

Found a very helpful site to help prepare: https://withdrawal.theinnercompass.org/taper

[ChessieCat]

This is SA's discussion:  inner-compass-and-the-withdrawal-project/

 

[YellowRoses]

2 hours ago, ChessieCat said:

This is SA's discussion:  inner-compass-and-the-withdrawal-project/

 

 

Politics everywhere. Glad to read the discussion thanks. 

[YellowRoses]

I am going overseas to a new destination I have never been before in Asia early next year. It occurs to me with all the reading about withdrawal perhaps the best thing is to wait until I get back before starting the taper. OR - If I start in November - that's nine weeks to January to stabilise. Hold on that reduction through the trip and then taper when I get back. 
 

Travel always rocks my sleep patterns although the time difference where I am going is not the day is night, night is day I usually have when going to the opposite side of the world in the same hemisphere. 

A consideration.

[YellowRoses]

Reading Anatomy of an Epidemic by Robert Whittaker. First time I have learned that I DO NOT HAVE A CHEMICAL IMBALANCE that is being "corrected' by these medications. OMG.

Now also really understand why and how tapering is the best approach possible. Here's a very light on description as I understand it now: 

• There was no chemical imbalance, the medication creates one,
• the medication causes the brain to go into homeostasis mode,
• it creates many more receptors (in my case serotonin)
• then sometime after the huge pile on of receptors and trying to get back to 'normal' it breaks.

So (in lay terms) the tapering allows the brain to slowly - reset, reset, reset, reset, reset in increments.

Understand now why day 5-6 of the big drop offs I tried several times, both 50% and 25%, I was unravelling, hypersensitive to sound and light, unable to process any emotion but fear, tremors, dissociation - my brain was literally not coping. Not ME - not coping, my brain.

I need to get lots of skills under my belt for preparation for distress tolerance.

 

[ChessieCat]

3 hours ago, YellowRoses said:

the medication causes the brain to go into homeostasis mode,

 

The brain is always trying to maintain/regain homeostasis or factory settings.  So if a drug is added the brain adapts to take the drug into account.  When the drug is reduced the brain again tries to adapt.  If the drug is taken away too quickly the brain has problems and that's why we get withdrawal symptoms and because many different things can be affected, that's why there is such a wide variety of withdrawal symptoms.

 

It definitely helps you to be more patient when you understand what is happening.

 

I really like the Rubik's cube analogy.  The vine and trellis analogy is also good too:  how-psychiatric-drugs-remodel-your-brain

[YellowRoses]

The more I am reading and accepting the angrier I am becoming that the chronicity of my mental illnesses may have been CAUSED by long term anti-depressant use. On top of that an antipsychotic and my life spiralled out of control. I THOUGHT that the drugs were helping a worsening situation, I now see that they MAY have caused it. I am so angry and upset by this but know I must stay calm and rational when I approach my doctor about tapering and be careful to not go off the deep end rambling about iatrogenic disease. I don;t have ANYONE to talk to about this. My partner is tentative in their support for my withdrawal, but thinks by observation I am "better' with the meds than I was without them. But, since taking them I have become totally disabled whereas before I 'coped', worked full time, ran a hosuehold, volunteered my time for charity etc etc.

It is a difficult time. The more I delve into online work like Mad in America, Drop the Disorder, Robert Whittaker's book 'The Anatomy of an Epidemic' - the worse I feel. I feel betrayed by doctors who were there to 'help' me. I guess there will be times when tapering, I will feel scared at the responses (waves and windows understood theoretically at least), my concern is that when (IF) I talk to my pdoc about these symptoms of withdrawal it will be labeled 'relapse' rather than the natural process of my brain reaching for homeostasis.

How have other's coped with the brand new information now available and finding oneself in a state where the cause of the chronicity and worsening of the symptoms may be iatrogenic? What do you do to mitigate against the arising feelings?

[ChessieCat]

Have you read the two "doctor" topics I provided in a previous post?  Some members have decided not to "confess" to their medical professional that they are tapering.  Some members have had a medical professional who has stopped prescribing after they have told them that they are tapering.

 

You need to weigh up the pros and cons of discussing tapering and withdrawal with a medical professional.  What you need to consider is that you need to be able to get the drug/s for the duration of your taper.  It doesn't really matter if they are on board with what you are doing.  Not many doctors recognise, know about or acknowledge withdrawal symptoms and the need to taper slowly.  You have the information provided by SA and the support of members here.

 

And it will be important to stay calm but assertive during your appointment so that you don't get labelled.

 

You might find it helpful to rehearse what you are going to say before the appointment.

[YellowRoses]

1 hour ago, ChessieCat said:

Have you read the two "doctor" topics I provided in a previous post?  

...And it will be important to stay calm but assertive during your appointment so that you don't get labelled.

...You might find it helpful to rehearse what you are going to say before the appointment.

 

Hey ChessieCat - thank you I HAD read them but forgot the contents of those two posts. Have just reread them.

In preparation I wrote a 'letter' to help order my thoughts, not to send to the doctor, rather to have clarity about my request and how to best discuss the 10% tapering method. Because I am on Seroquel XR I need to have compounded scripts for 40mg and a back-up of 5mg  to add-in if the 40mg a day drop is too extreme for my system. 

Thanks for pointing me back to those two posts. I think my Doctor will be supportive, but is not knowledgeable about it. I have been consistently saying for 12 months I want to come off Seroquel, but then re-presenting having reinstated my dose after 5 days or so because of nasty withdrawal effects at the 50% or 25% drop off rates. Each time she has been supportive, but never suggested a slower withdrawal. Maybe she doesn't know.

 

[ChessieCat]

One way of "talking" to her is to say that you would like to lower the dose, rather than saying that you want to actually going off it.  Alto uses the term lowest effective dose.  This post was made by another member recently and my response is below the quote.

 

On 10/17/2018 at 12:15 PM, H8FXR said:

I am more than happy to ask my doctor to reduce my medication and let them follow my along on my journey, and actually my doctor is on board tapering off the venlafaxine XR.

 

The problem is this: his taper is going to be 112.5mg to 75mg to 37.5mg perhaps with some alternate-day dosing to step down "gradually". And as ghastly as this is it is all he really has to work with because the drug only comes in those doses.

 

I have to convince him that all kinds of intermediate doses can be made if I open up the capsules and mix and match and cut up the minitabs. But that is not standard procedure of course!

 

Further more, I need access to the 150mg caps which contain 50mg minitabs which would be useful to me but 150mg is above my current dose so how could I justify being prescribed that?

 

"If you explain to him that you would like to go much slower than what he suggests because you are very concerned about experiencing withdrawal symptoms and that you believe that it is better to go slow and not risk getting them, instead of going too quickly and suffering.  You can explain that you have done your research and found Surviving Antidepressants which was started back in 2011, has many case studies of people tapering a variety of psychiatric drugs and found a way to taper using a harm reduction method.  If he baulks at your proposed method, tell him that you would like to try doing it your own way to see how it works.

 

It's important to be gentle, calm but firm when discussing with a medical professional.  Try not to seem like a know-it-all.  Many of the product leaflets now have warnings about withdrawal symptoms and the DSM has "Antidepressant Discontinuation Syndrome DSM-5 995.29 (T43.205A)" which you could mention.

 

You could also show him this:  Why taper paper: dose-occupancy curves  There are graphs which follow a similar curve to the 10% taper recommended by SA.

 

And there are many submissions about withdrawal available for reading here, some from medical professionals:  http://www.parliament.scot/GettingInvolved/Petitions/PE01651

 

One member recently made a post about if a doctor doesn't want to prescribe a certain form of drug because of the cost that you can mention that the medical community has caused you to become physiologically dependent on the drug so it is their responsibility to get you off safely.  However I would use this as a last resort."

    

[YellowRoses]

See my p-doc today. Very prepared, calm, concentrating on what I will say, not the 'iatrogenic harm' rave I want to say! Wish me luck. :-)

[YellowRoses]

It is on! Dr was supportive. 

[Gridley]

Good for you, YR!

[ChessieCat]

That's great news.  Hopefully another doctor who has gained withdrawal knowledge and will possibly pass on the information to colleagues.

[YellowRoses]

One thing I was NOT prepared for and fumbled was the comment, perhaps when you come of this we can try Lithium? I saw RED for a nanosecond, then smiled and said, well umm, last time I was a raving mess by day 6 and another salt, valproate caused me to develop alopecia... so... maybe.... not. Instead I said... "Let's cross that bridge when we come to it."<----- Will be my new mantra. 👀

[ChessieCat]

Well done.  Great response.  If you get desperate you can always say that you'd prefer not to be experimented on.

[YellowRoses]

Nothing worthwhile is easy. My compounding scripts have been held up being sent to the wrong address. I thought I would be starting my taper this week... but looking like it might be next week now. 

 

Meanwhile I am reading Anatomy of an Epidemic by Robert Whitaker and am bouncing between anger and sadness that my life has been hijacked and chronicity of my responses/symptoms made worse because of the medications. it is hard to square that away - 25 years of them... believing what I was told. I feel duped and experimented upon but without anyone checking the results of the experiment!

Anyways, soon. I am raring to start this, but nervous too. HAving lived with Chronic pain and learned how to mitigate agaisnt the pain signals (refute, redefine and redirect) I am hoping some of my life's experience will help with coping with withdrawal symptoms.

[ChessieCat]

Many of us feel the same way.  As Alto says, we are all an experiment where N=1.

 

My family doctor didn't pick up that the increase in my Pristiq from 50mg to 100mg was the cause of my diastolic blood pressure increasing.  My blood pressure meds were doubled from 4mg to 8mg Perindopril.  I've since reduced it myself and told him last week when I went in for a script.  However, I was surprised that he didn't even bother to take my blood pressure.  This is a family doctor that I have been seeing for 34 years.  He is aware that I am tapering and last year when I said that I realise that most people probably get off their AD without much trouble he shook his head and said not many.  This year I told him (and his student doctor who was sitting in on my appointment) that it would be better if psychiatric drugs weren't prescribed in the first place.

[YellowRoses]

9 minutes ago, ChessieCat said:

As Alto says, we are all an experiment where N=1.

.  This year I told him (and his student doctor who was sitting in on my appointment) that it would be better if psychiatric drugs weren't prescribed in the first place.

 

Thanks ChessieCat. I am no sure what N=1 means tho. 

 There was a student medical student sitting in on my Withdrawal Taper discussion too so I educated two medicos. :-)

[YellowRoses]

Found it! An N of 1 trial is a clinical trial in which a single patient is the entire trial, a single case study. A trial in which random allocation can be used to determine the order in which an experimental and a control intervention are given to a patient is an N of 1randomized controlled trial.

[ChessieCat]

2 hours ago, YellowRoses said:

There was a student medical student sitting in on my Withdrawal Taper discussion too so I educated two medicos. 🙂

 

That's great.  And hopefully they will pass on the information and/or recognise withdrawal issues in the future.

[Altostrata]

N = 1 is not much of an experiment, given there are no comparisons, such as a control subject. There's no way to tell if results might be random.

 

Good to hear about the physician education effort!

[YellowRoses]

Good news, the compounding chemist called and the first taper meds are made up - paid over the phone. They will be couriered to my local pharmacy next week. Everything seems to take and age when you are raring to start.
 

On 11/1/2018 at 11:16 AM, Gridley said:

Good for you, YR!

Hi Gridley - I see you are taking a number of supplements and am interested in how one knows what is the best ones to take? 
How did you, for instance, know to take magnesium glycinate?
And is adding it in at the very beginning before at the time of starting taper advisable?
Who can reliably advise on supplements and or nutritional support when tapering?

 I have searched for 'supplements' but no clear post came up. 

 

Added later: As usual! Once I know to ask the question I get all self-sufficient and research myself! I am making a spreadsheet of nutrition sources of mental health supporting nutrients/foods and a noting a few supplements.