KramerNiles: daughter's Seroquel taper has gone badly

[KramerNiles]

Our 29 year old daughter has been undergoing a taper of Seroquel since February 2021. She went from 350 mg to the current 160 mg and was handling cuts fairly well until the 170 mg mark. At that point she underwent a sudden deterioration in her condition. It should be pointed out that she is also on .475 mg of clonazapam, and that she has suffered repeated movement disorders, including dystonia and dyskensia, as well as heart problems and rapid weight gain (120 pounds to 208 pounds in a few months) since beginning medication. We are at a loss right now as to how to deal with this. She has become violent towards herself and towards us. She is alternating between a week of a time with no sleep and no food and manic behaviour, and then a week of some sleep, a little food, but almost no activity (she sits in a room staring at the wall, once in awhile talking to herself). Her psychosis has gone off the charts, with her insisting we aren’t her parents, and with her talking to people who aren’t there. She grabs every household item not secured and insists it is hers (sticking items down her shirt and pants to hide them from us), and we have had to fight to get toxic cleaners and other dangerous items away from her (she sticks things randomly in her mouth and sprays anything she can find at others and herself). We are doing everything in our power to keep her safe at home and out of the hospital. We don’t know whether to increase the Seroquel up to where it was when she began deteriorating, increase the Clonazapam, or continue with the taper. It should also be noted that she is increasingly resistant to any medication, including supplements and vitamins. It takes hours to convince her not to just cold turkey the medications and take a dose, and she cannot be convinced very often to take supplements or vitamins. She is currently at 150 mg of seroquel, and 0.6 mg of clonazapam a day (taken in three increments).

 

Our daughters history is below in the footnote. She was hospitalized in Sept. 2020 with severe psychosis, including Capgras and Cotard delusions, following a very traumatic and abusive 8 month relationship, and was prescribed Invega at 9 mg (which she came off of very rapidly, over a few week period, following hospitalization).  We went six weeks antipsychotic free after the Invega discontinuation, but started up Seroquel due to increasingly self destructive behaviour by my daughter in January of 2021. She was also administered Halidol as an emergency chemical restraint while in the hospital at least three times. We had the Genomind gene testing done on her, and she is not a good metabolizer of antipsychotics or SSRIs, and is prone to side effects on antipsychotics according to her genetic profile. It is recommended by Genomind that she not take antipsychotics.

 

We have also discussed the possibility that she should be given a mood stabilizer (she was taking Lithium Oretate at 5mg, with very limited visible effect) in place of the antipsychotic.

 

Any advice would be appreciated.

 

Daughters History
Seroquel  Started on Sept 15, 2020 - 50 mg for sleep, discontinued two weeks later, restarted Jan. 17, 2021 at 50 mg due to psychosis. Increased to 350 mg by Feb. 17th in increments.  Began taper in response to an oculogyric crisis. Initial taper was quick because of small time on neuroleptic, but taper decreased to 2.5 to 5 percent after initial quick decrease. Feb. 18th, 2021 – 300 mg; March 16th – 275 mg; Apr. 29th - 262.5; May 24th - 250 mg ; June 4th - 237.5 mg ; July 15th - 231.25 mg; July 18th - 225 mg; Aug. 9th - 213.75 mg; Sept. 11th - 200 mg; Oct. 5th - 195 mg; Oct. 24th - 190 mg; Nov. 16th - 185 mg; Dec. 13th - 180 mg; Jan 5th - 175 mg; Feb. 5th - 170 mg; Mar. 3rd- 165 mg; Apr. 4th – 160 mg. June 1st - 150 mg.

Clonazapam Started on Sept. 15, 2020. Intermittent use of Clonazapam from Sept. 15, 2020 to Jan. 19, 2021, often with 3 to 4 days between doses. Doses ranged from 1.5 mg in September to 0.25 mg intermittently between Dec. 2020 and Jan. 16, 2021.  Began using Clonazapam regularly on January 16th. 0.25 mg a day until February 16th when dosage was increased to 0.5 mg (0.25 mg twice a day). Cut to 0.475 mg (cut into two doses a day) on March 15th, following suspected paradoxical reactions to the Clonazapam. Split Clonazapam into three doses (still 0.475 mg total a day) on Feb. 10. 2022.

Invega Started on Sept. 15, 2020 at 9 mg following involuntary hospitalization. Tapered down to 6 mg in two weeks in response to dystonic reactions and high prolactin levels, then to 3 mg on Nov. 19th. Discontinued Dec. 4th, 2020. Rapid taper due to psychiatrist refusal to prescribe lower dosages through compound pharmacy.

Antipsychotic free from Dec. 5th, 2021 to Jan. 16th, 2021.

Supplements  AM - Lithium Oretate 5 mg, Omega-3 3000 mg, Vitamin B12 1200 mcg.

 

 

[Altostrata]

Welcome, @KramerNiles

 

It happens quite frequently that people are able to taper about half-way off a drug with few problems and then encounter greater difficulty. Too-fast reduction of antipsychotics can cause psychosis-like symptoms (supersensivity psychosis) in anyone, but those who have had prior symptoms of psychosis are especially vulnerable.

 

Your daughter has good health reasons to minimize antipsychotic dosage. Since she was doing better at 170mg Seroquel, my guess is restoring that level of dosage might be helpful. If it is, I would stay at that dosage for several months before resuming a very careful taper. We recommend no more than a 10% reduction per month, calculated on the last dosage (amount of reduction keeps getting smaller). 

 

Here are Tips for tapering off quetiapine (Seroquel)

 

It is imperative that your prescriber assist you by prescribing a liquid formulation or compounded capsules so your daughter can taper very gradually to the lowest effective dose that will control her symptoms, if she agrees this is what she wants to do.

 

Her daily use of clonazepam may also be causing problems related to interdose withdrawal or other clonazepam effects. 

 

On 6/10/2022 at 11:07 AM, KramerNiles said:

Seroquel  Started on Sept 15, 2020 - 50 mg for sleep, discontinued two weeks later, restarted Jan. 17, 2021 at 50 mg due to psychosis.

 

Your daughter did not originally have symptoms of psychosis when she started Seroquel? These emerged only when she went off the drug?

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[KramerNiles]

Thank you for the response. My daughter's psychosis symptoms were present when she was initially prescribed Seroquel (as a sleep aid) during her hospitalization, but it was Invega that was being used as the primary means of combating the psychosis by the hospital at that point. We quickly quit the Seroquel (50 mg a night when she got out of the hospital) and then did a quick taper of the Invega (she was showing dystonic reactions even at the beginning of taking it, plus her prolactin was too high), after which she was anti-psychotic free for six weeks. However, her psychosis (which never really left with the Invega) came back with a vengeance, and she began to self harm, so we followed the doctor's advice and put her on Seroquel as her main anti-psychotic at this point (it was upped to 350 mg very quickly). At the time we didn't realize that this may have been withdrawal psychosis, and we regret since that we didn't stay the course and give her a chance to improve without medication. She began having mouth movements and an Oculogyric crisis when the Seroquel was upped to 350 mg, so she was brought down from 350 to 300 quickly, then slowly after that. Even prior to any meds being administered, before hospitalization, my daughter's delusions were severe (Cotard and Capgras delusions, as well as a complex delusion involving cell phones, the Matrix and people being switched around by her actions on the cell phone). She was not sleeping at that point ... having gone 6 days with no sleep. During her recent episode, she also went sleepless for a week. We also suspected at one point she may have been having a parodoxical reaction to the Clonazapam, as she became increasingly agitated and anxious 45 minutes to an hour after administration on a number of occasions. A slight reduction in regular Clonazapam dosage seemed to have helped with that. I should also note that movements have always been a problem during her antipsychotic use, both with neck movements and with mouth movements (they seem to alternate). A movement specialist called them ticks, but conceded they were medication induced. Her mouth movements became really pronounced shortly before her most recent deterioration. They have, strangely enough, improved even as everything else has deteriorated.

[Altostrata]

She was prescribed Seroquel with Invega, even though she already had dyskinesia? That is not appropriate.

 

3 hours ago, KramerNiles said:

Her mouth movements became really pronounced shortly before her most recent deterioration. They have, strangely enough, improved even as everything else has deteriorated.

 

This is an indication the movement disorder may not be so deeply rooted yet as to become permanent. You may have found her ceiling for quetiapine dosage, at least the level that does not aggravate the dyskinesia.

 

3 hours ago, KramerNiles said:

We also suspected at one point she may have been having a parodoxical reaction to the Clonazapam, as she became increasingly agitated and anxious 45 minutes to an hour after administration on a number of occasions. A slight reduction in regular Clonazapam dosage seemed to have helped with that.

 

Correct, that is the fix for a paradoxical reaction to a benzo. You will need to monitor her benzo use closely.

 

I would question the competence of her current prescriber. Perhaps another avenue might be found to help her control her symptoms with a lower risk of tardive dyskinesia, because she is certainly headed down that path with the antipsychotics. As this site provides peer support for going off drugs, we cannot further advise you on fine-tuning her current drug regimen for symptom control with minimum adverse effects, only tapering of Seroquel.