VitaminB: slow Clozaril taper

[Shep]

VitaminB, I noticed that this is several days old, so I'm a bit late in jumping in to "scare" you. But the fact that you're asking in this fashion means you do know the answer already.

 

I hope that it didn't trigger a wave and that you're feeling alright. I don't know if alcohol hits the same receptors as Seroquel (although it has a very similar affect on the brain as benzodiazepines), but it does affect the central nervous system.

 

This thread may help explain why it's best to avoid stressing out the CNS:

 

Limbic Kindling -- Hardwiring the brain for hypersensitivity

[VitaminB]

Thanks for the link Shep.  I have opened the links to the brain retraining programs, I am not sure about them, but they are interesting. I have been having more anger and outbursts. I have been on 100 in the morning and 300 at night for two weeks and I intend on staying on the dose until my anger subsides. It has really been a terribly reactive and loss filled time. 

 

I have been getting back at these old threads of art that I have been kicking around. I have just been hopeless about my reactivity and appropriateness and feeling like the world is coming down on me. 

 

I haven't been drinking at all. 

 

I have heard that Ashville NC has places to go and get off drugs. I need a structured retreat I think to get off this stuff. There is no support for getting off of seroquel. Please PM me if you know of more places to go and retreat and heal. My anger is out of control. 

[Shep]

Hi, VitaminB.

 

It's so good to hear you're not drinking and that you're going to hold your taper until the anger settles down.

 

This is a great post by Brassmonkey where he describes what he calls "the anger spiral":

 

There are pretty much four steps: 1) identify that it's happening, 2) defuse the situation, 3) change the channel, 4) go on with life. . . . 

 

The key aspect of the anger spiral is ruminating thoughts.  Once the trigger happens it sets off of series of mental events that build out of control. There is the initial trigger which is frequently followed with a small flash of anger and then dropped.  A few minutes later the ruminating kicks in with an "I should have..." followed closely by "that's like when....." "those b******s" "I always get treated like this..."  all these thoughts swirling around and compounding each other.  This builds until there is an explosion.  Changing the channel at "I should have..." is the best way out, but it can be done effectively at any point in the spiral.  As soon as one realizes that the spiral is happening changing the channel is called for. I frequently use a stern "don't go there" close my eyes, deep breath and concentrate on what I'm doing.  While distracted I do deep breathing and progressive relaxation to regain control of my body.  I can take several tries to get control back and I need to keep an eye on things so the spiral doesn't try to sneak in several hours later.  This is the part that takes a lot of practice but with time becomes second nature and very effective.

 

http://survivingantidepressants.org/index.php?/topic/3458-brassmonkey-talking-about-myself/?p=229162

 

 

Are you able to catch your anger at the initial "rumminating thoughts" level? That seems to be key, and once you have this self awareness, you can stop your thoughts from spiraling out of control.

 

Brassmonkey lists "change the channel" as one of the steps. This is a great post on how to do this part:

 

"Change the channel" -- dealing with cognitive symptoms

 

I don't have any information on drug withdrawal retreats. From what I understand about them, though, is you risk being placed on more drugs and / or being subjected to supplements. Depending on the level of limbic kindling, this could be extremely destabilizing. 

 

Perhaps read the links I've posted, as well as the Neuro Emotions link.  If you can recognize when your thoughts are first hitting the spiral, then distance yourself from the situation, if you can. Take a walk, excuse yourself to go to the restroom to regroup, listen to a favorite piece of music, etc. This is temporary. Remind yourself of that often. 

 

If you can learn to control this anger spiral, by the time you're off of Seroquel, you will be a master of handling anger.

 

Sending healing vibes your way. 

[VitaminB]

Thanks Shep. I have been looking at the links. I need to get my brain back into training. Still at 100 morn/300 night. I was planning to go down 12.5 tomorrow but not really ready. I am down a hole and someone close to me said that God will help through unexpected places. It is a better attitude to think of empowering myself as a mastering anger for the future. 

 

Been watching David Healy talks on Youtube. Went to his website Rxisk.org. Looks like there is some expensive legal help available there. 

[VitaminB]

I spent the last few days turning back to myself when emotions came up and asking myself how I wanted to respond. I have my meds set up to go from 400 to 381.25 over the next month. 

[VitaminB]

There are many small pieces in the 393.75mg. 200+25+25+25+12.5+6.25 at night. I have been spreading out the dose over a longer period for emotional reasons. Is this a good idea? To spread out the dose over 6 hours or so? I read that seroquel has a shorter half life so maybe this is a good thing? 

[Shep]

Hi, VitaminB.

 

Please list your dose and symptoms as listed in this post:

 

Keep notes on paper about your drug dosages and daily symptom pattern

 

Because of Seroquel's short half life, you may wish to spread out your dose. And by tracking your symptoms throughout the day, you'll be able to see if spreading out your dose is helping or not. Do this for several days and see if you see any patterns emerge.

 

Some of this is personal preference, as well as taking into consideration your current life style and responsibilities. For instance, if you have to work or take care of children early in the day, you want to keep from being overly sedated in the morning. 

 

It sounds like you're dealing with quite a bit of neuro emotions such as anger, so if it helps to take the drug throughout the day, then that's a good game plan. 

 

 

I have heard that Ashville NC has places to go and get off drugs. I need a structured retreat I think to get off this stuff. There is no support for getting off of seroquel. Please PM me if you know of more places to go and retreat and heal. My anger is out of control. 

 

 

I don't know of any place to go and safely get off these kinds of drugs, but feel free to research this. The safest way we know is to do a slow taper while learning non-drug coping skills. There aren't any short cuts to this. 

 

If you do allow your anger to get out of control, you are likely to end up on a higher dose of Seroquel or polydrugged. So it's imperative that you learn how to de-escalate your thoughts, to step back, and to look at the larger picture of being drug free. 

 

I posted a few days ago here on your Intro thread about BrassMonkey's anger spiral technique. And there are many other non-drug coping strategies for dealing with extreme emotional states linked here on your Intro thread.

 

This is not something that happens overnight - this is a process. Most of us who have come off these drugs after many years are profoundly changed by the time we've finished the taper and are into the recovery phase. This transformation comes partly from removing the toxic drugs from our minds and bodies, but it also comes from the hard work we put into learning how to handle our emotions, how to de-escalate our thoughts. Learning not to engage in conflict with my own thoughts is one of the best take aways I've gotten from this experience. 

 

Again, there are no shortcuts to this, and it's very hard work. But I would encourage you to continue practicing mindfulness, yoga, distraction, and / or other forms of non-drug coping skills.

 

Sending healing vibes your way. 

[Shep]

As a follow up, VitaminB, while you are keeping your Seroquel notes according to this post - Keep notes on paper about your drug dosages and daily symptom pattern - please also list your supplements.

 

I'm wondering if your use of B vitamins might be ramping up symptoms such as anger. A close cousin to anger is anxiety, and the B vitamins are notorious for ramping that up during withdrawal. 

[VitaminB]

I landed in the hospital and they switched me to Clozaril. I don't have a clue about getting off of it because they take my blood levels of the drug with regular blood draws. Looks like my medication days won't be over. 

 

The medication makes me drool at night and I have major constipation.

 

Yippee for me  

[Altostrata]

Sorry to hear that. You might request they reduce your dosage to minimize side effects.

[VitaminB]

Got a NutrEval test back and I have the same problem pattern with my vitamin B complex. Very low vitamin B2, B6, Biotin, folic acid and B12 levels. Day 29 on a no grain, no gluten and no alcohol diet. I am adhering to a ketogenic diet... low carb and high fat. Still on 300 mg clozapine.

[VitaminB]

Down to 275 clozapine. I have been weighing pills out and making small cuts all summer. Even with all the hassle of getting blood draws every week I think I am better off then being on seroquel. 

 

I started taking vitamin k2 with vitamin D. My vitamin D levels finally improved to 44! 

 

Focusing now on fighting candidiasis found in stool test. I have the book, "The Body Ecology Diet" by Donna Gates which talks about it. 

[VitaminB]

I punched in the numbers from the downloadable document for withdrawal amounts and got sad at how long it takes. 

 

I did the math for how much clozapine a month I am NOT taking because I have tapered 25mg over the summer. 

 

I am not taking 750 mg a month that I would have been taking had I not tapered. I am NOT taking the equivalent of 300mg for 2 and a half nights a month. 

[VitaminB]

 

 

I thought I could talk about my meditation stats. I have three parts to each session each day. 

 

I use inner balance for 10 minutes to start the session off.  It is made by a company called HeartMath. It is a biofeedback machine and helps me breathe deep. Then I move the Headspace app for a 10 minute session that is guided.

 

Then, for the last part, I use a regular timer to sit for 18 minutes (and counting).  I stared out at 3 minutes and added a minute every Wednesday to add up to 17 minutes. It took me 118 days in a row and counting. I haven't sat at the exact same time each day though. I am making the goal to sit at 7pm.  I want to aim for the same time (not late or early.)

 

I am still at 275 mg of clozaril. 

 

Vitamin B

 

[VitaminB]

I wanted to start a new thread for a new drug. I switched from seroquel to clozaril a year ago. I slowly tapered down from 300mg to 275mg this summer. There is a lot of drooling at night which is embarrassing to admit, but it happens on this drug. Clozaril has a low occurrence of movement disorders and I don't have any movements at all. 

 

My p-doc noticed the 25mg change in dose though blood tests. Clozaril requires blood tests to check to see if the  blood level of clozaril is at a "therapeutic dose." (Also to see if you have a white blood cell problem.) I told her I was cutting a 100mg tablet in half and then shaving off tiny bits with an exacto knife and getting to the correct dosage amount with a gem scale. She discouraged me from doing it by bringing up my last hospital stay. I have to admit that I was on the "neuro genetic solutions" plan and going off seroquel way to fast when I ended up in the hospital. There were some other facts going into it too, but I will leave those off the internet. 

 

I have been on a streak of 142 days in a row of meditation. I have the app "Headspace" and it is really helpful to log in everyday. I am also sitting without any apps for 18 additional minutes that is going up slowly over time. I read an article from the New York Times linked from  beyondmeds.com that these meds can cause a 1% decrease in brain matter every tear. I am sitting in meditiation and hoping that neuroplasticity will keep my poor prefrontal cortex in better shape then the slow slide down of doing nothing. 

 

http://www.nytimes.com/2008/09/16/health/research/16conv.html?_r=2

 

 

Listen to more experienced people about supplements, I am sharing what seems to be working for me.

 

So here I am on one of the oldest anti-psychotics. I am still taking supplements. My multi-vitamin is Pure Encapsulations brand's, "O.N.E. Multivitamin." It has CoQ10 and an easily digestible form of riboflavin. The book "Drug Muggers" from Suzy Cohen RPh says that CoQ10 and B2 are "mugged" from the body from anti-psychotics. (Anti-depressants have a different set of nutrients that get mugged.) The multivitamin is expensive, but it covers a lot of bases. If you can see a functional medicine doctor they might be able to get you a discount. I take a "Swanson Vitamin" brand "strontium complex" that has vitamin D and vitamin K-2. My vitamin D tests finally got out of deficiency levels by introducing K-2 to the mix. 

 

 

 

 

 

 

 

[nz11]

1 hour ago, VitaminB said:

I wanted to start a new thread for a new drug

Beep!

Sorry ya cant do that ...its only one intro thread per person...ingenious idea eh ..then your whole story is trapped in one place and not scattered all over the show. Makes your iatrogenic harm recovery journey easy to follow.

 

[VitaminB]

Can I change the name of my thread? 

[VitaminB]

I wanted to start a new thread for a new drug, but that isn't allowed. I wish I could change the name of my thread since I am not on seroquel anymore. 

 

 

I switched from seroquel to clozaril a year ago. I slowly tapered down from 300mg to 275mg this summer. There is a lot of drooling at night which is embarrassing to admit, but it happens on this drug. Clozaril has a low occurrence of movement disorders and I don't have any movements at all. Actually, I have a tongue movement that I have never experienced until clozaril. My tongue wants to fold in half in my mouth. It is annoying, but not as bad as full blown akathisia. 

 

My p-doc noticed the 25mg change in dose though blood tests. Clozaril requires blood tests to check to see if the  blood level of clozaril is at a "therapeutic dose." (Also to see if you have a white blood cell problem.) I told her I was cutting a 100mg tablet in half and then shaving off tiny bits with an exacto knife and getting to the correct dosage amount with a gem scale. She discouraged me from doing it by bringing up my last hospital stay. I have to admit that I was on the "neuro genetic solutions" plan and going off seroquel way to fast when I ended up in the hospital. There were some other facts going into it too, but I will leave those off the internet. 

 

 

 

I have been on a streak of 144 days in a row of meditation. I have the app "Headspace" and it is really helpful to log in everyday. I am also sitting without any apps for 18 additional minutes and I am increasing a minute every week.  I read an article from the New York Times linked from  beyondmeds.com that these meds can cause a 1% decrease in brain matter every tear. I am sitting in meditiation and hoping that neuroplasticity will keep my poor prefrontal cortex in better shape then the slow slide down of doing nothing. 

 

http://www.nytimes.com/2008/09/16/health/research/16conv.html?_r=2

 

Listen to more experienced people about supplements, I am sharing what seems to be working for me.

 

So here I am on one of the oldest anti-psychotics. I am still taking supplements. My multi-vitamin is Pure Encapsulations brand's, "O.N.E. Multivitamin." It has CoQ10 and an easily digestible form of riboflavin. The book "Drug Muggers" from Suzy Cohen RPh says that CoQ10 and B2 are "mugged" from the body from anti-psychotics. (Anti-depressants have a different set of nutrients that get mugged.) The multivitamin is expensive, but it covers a lot of bases. If you can see a functional medicine doctor they might be able to get you a discount. I take a "Swanson Vitamin" brand "strontium complex" that has vitamin D and vitamin K-2. My vitamin D tests finally got out of deficiency levels by introducing K-2 to the mix. 

 

Thanks for reading if you got this far

 

VitaminB

[VitaminB]

I have been thinking more about my tongue movements and how they maybe the beginning of tardive dyskinesia. I read that tardive dyskinesia gets worse the longer you are on clozaril. My tongue wants to fold in half the long way. It makes me want to bite my tongue to try to keep it from folding into itself. It is worse at night after I take the drug. I don't have akathisia at least.  

[JanCarol]

Hey B - 

Good work on the meditation!  I don't know many drugged people who are able to sit for that long - so you are doing really well!

 

So - according to the chart - you cut to 270 mg in December?

That was a nice, long hold from September to December.

 

I was wondering if you are ready for a cut again.

Can you update your signature to make it more accurate?  (to show the dates of cuts and step-down amounts?)

How much niacin do you take?  How much CoQ10?

I find that Multivitamins - even the good ones - are shot-gun approaches.  They are often too high in B6, and not high enough in Niacin - and  I just looked it up - the CoQ10 in there is only 50 mg, and the Niacin is only 20 mg (I take 1 gram Niacin a day, and you might want even more than that, if you can take it safely).  If you're diet isn't the best - a multi is a way to "cover your bases," to get those weird things like molybdenum, lutein, and lycopene.  But it's not what I would call "therapeutic levels."  (egads, now I sound like the shrinks - but - Niacin and Zinc are important therapy for "psychotic intrusions").  Just to give you a comparison - because I'm older, and was on statins for 10 years, my daily CoQ10 dose is 600 mg.  

 

I looked to see if there was anything on ConsumerLabs that might help with TD.  Your Multi would help a little with that.  Also - melatonin (10 mg/day! - which is extremely high by SA standards), Vitamin E (their best shot, recommending 400-1600 iu/day - but NOT if you smoke!).  Remember - titrate up very carefully, you don't want to take anything that will throw you out of balance.  Make sure you can tolerate a supplement before you add it in.

I am not wise enough to recommend this - but ConsumerLabs are starting to recommend CBD oil for muscular disorders. (they do not yet have a review of brands - which is - buyer beware!)

 

They recommend avoiding phenylalanine - found in aspartame, but also in eggs, organ meats, chicken, milk, and soybeans.

Just for fun, they recommend Gingko to help with cog-fog while on Clozaril.

I don't usually suggest supplements - but since this is early onset (you're not even sure you have it yet) - there is hope that we can head it off at the pass, and that it will go away as your drugs do.

 

And remember - don't get caught.  Behaviours which get you caught are showing extravagant emotions that scare other people, behaving in non-social ways in public spaces.  It may be a game - but play by the rules and stay out of hospital!

Take care, and I hope you see the sun today!

[VitaminB]

Hello,

 

Thanks for all your good advice JanCarol, you are a treasure. 

 

I changed my signature, but it doesn't seem to have loaded.

 

I have updated the dates of my taper in my signature. It goes from pretty erratic for the first 25mg and then I start using percentages for the latest 25mg. I have taken a year to go down by 50mg in clozaril. I am at 250mg right now. 

 

I am at day 271 in a row on headspace for meditation. 

 

This year I learned about "Kaizen" from Dr. Robert Maurer and read Stephen Guise's work. 

 

https://stephenguise.com/how-to-be-an-imperfectionist/

 

Both authors talk about taking small steps. If you won't start because the project/chore/research is too scary break it into smaller steps and take the tiniest step you can. It is about tricking the flight or fight brain that the small step is insignificant enough that it need not bother to engage. I have started doing things that I have talked myself out of for years. I am engaging in the smallest way possible, and the fact that I do it everyday is what matters. 

 

Some nurses told me 200mg is a low dose of clozaril. Psych people around me are getting nervous as I want to approach 200mg. I try to remind them how slow I went these last 50mg and I haven't been in the hospital for a year and a half. 

 

 

Thanks for reading this. Please reach out and talk to me if you want to. 

[Carmie]

Hi Vitamin B, 

 

How are you doing? Sending hugs🤗