Castor strange saga; trying to get off seroquel (alive)

[Castor]

hi survivors,

 

My story is really long, but here's the short version: I'm in my mid-thirties, male, an intellectual/creative type. I developed panic attacks from adolescent trauma and was diagnosed with an "anxiety disorder." All through my 20s I was rx-ed higher and higher amounts of benzos. Eventually multiple failed benzo withdrawals on my own (c/t and rapid tapers) led to a serious suicide attempt and 2 month hospitalization 3 years ago.

 

In the hospital I was taken off benzos and put on 300mg seroquel xr (against my wishes) along with a host of other drugs. I was in very bad shape for over a year, but then started to get much better-- the benzo w/d seemed to ease up a lot and I managed to ditch the other drugs over time and ween down to 150mg Seroquel XR a year ago. However when I tried to cut down to 100mg xr on my own all hell broke loose-- the worst symptom being strange painful brain spasms (my main symptom) which made me suicidal again. So I was put on way more Seroquel-- up to 600mg. I "stabilized" but was miserable on a drug I should never have been put on in the first place.

 

So at present I'm on Seroquel 400mg xr and really wanna get off of it. I am not suicidal and I'm very grateful to have survived thus far, but life is not what it should be. I can't work yet, but I try to make the best of things by exercising, keeping up a good diet, staying active as much as possible, But the scary effects of the drug have started to really kick in more noticeably during the last several months-- emotional flatness, cognitive impairment especially memory issues, and that indescribable symptom of being "absent" in my own body and mind. It's a frightening feeling-- I've been through a ton of horrifying experiences with meds, but this eerie, soulless, "absent" feeling might be among the worst.

 

So I want to get off this ****. The problem I think is that when I try to taper on my own I tend to rush it and I get hit with the brain-spasms and outrageous insomnia. Even when not tapering I have persistent problems with my sleep being disregulated, which I am positive is an effect of the drug. Anyway, there's gotta be a (better) way to do this.

 

I don't know why I haven't checked in here before, it seems like a great site. I'm looking for feedback, support, and maybe even friendship on this lonely journey.

 

Cas

 

Edited July 19, 2016 by scallywag
tags added

[LoveandLight]

Hello

 

I'm so glad you've made it here

 

A lot of us have tried and failed to get off these drugs..but I think you will find the advice and support here invaluable. I'm glad you've come here in a relatively stable state to start to taper slowly.

 

I also relate to the soulless feeling..it is inhumane really and one drug effect that I'm looking forward to disappearing.

 

Welcome

[Fresh]

Hi Cas ,   welcome from me too.  You've landed in a wonderful place , and you'll get lots of information and support.

 

Try reading "Why Taper by 10%" in the Tapering section , and then "Tips For Tapering off Seroquel" , to start.

This time you'll be tapering with a good knowledge base under your belt , and it will a lot smoother than previous attempts.

 

Best wishes ,  Fresh

[ang]

Hi Castor, and welcome

 

What other drugs are you on?  It might be better to switch to the non slow release version of Seroquel,(instead of the XR) then if you take it mostly at night, it should help you sleep.    I also think I heard somewhere that the non XR version is easier to taper.  That's why I am on the non XR version.

 

Also, when you get time, you might be able to fill in your "signature",  with drugs you have been on, and where you are at now...      all this information is so very, very helpful.

 

Best wishes!

[LucaDiProspero]

'It's a frightening feeling-- I've been through a ton of horrifying experiences with meds, but this eerie, soulless, "absent" feeling might be among the worst.' (quoted)

Hey Castor...that's exactly what I wrote some days ago in another thread. I'm living in this no-feelings condition since november 2014 when I stopped risperdal (was taking only 1mg a day) and nothing has changed since then.

I don't know what to do, maybe with summer and the beautiful days outside something will change also inside us, I hope so...welcome!

[nz11]

Welcome Castor .........you have found a place sought by millions but found by few!

[Altostrata]

Welcome, Castor.

 

Please see Why taper by 10% of my dosage?

 

Tips for tapering off Seroquel (quetiapine)

 

When was the last time you reduced Seroquel?

 

(Fresh, sometimes people don't know how to use search.)

[Castor]

Wow, thank you so much for all of the kind welcomes. 

 

Alto: my last reduction of Seroquel was 3 weeks ago-- from 450mg to 400mg xr.

 

Ang: I am not on any other drugs at this time. I have tried Seroquel IR but it typically hits my hypersensitized brain too hard. I think the only way I'd be able to do it might be to take it 4 or even 6 times spaced out over the day. At this point I don't think I can manage that, so I think I will have to stick with the XR

[Castor]

p.s. Is it really possible to get Seroquel XR compounded into tablets at different amounts than the 50mg increments?

[Fresh]

I stopped Seroquel by cutting XR tablets.   

I changed onto the XR because it was easier than taking multiple doses throughout the day.  No problems tapering off.

[Altostrata]

Very interesting, Fresh. Please add to Tips for tapering off Seroquel (quetiapine)

 

Castor, that is a good question. Breaking an XR tablet may reduce its extended-release properties. I've updated Tips for tapering off Seroquel (quetiapine)

 

To taper from Seroquel XR gradually, the best way is probably to get part of your dosage in XR tablets and part in immediate-release tablets, and cut up the IR tablets to approximate a 10% reduction.

[Castor]

So I remain on 400mg seroquel xr and that's it.

 

I am fairly stable, I guess, although I have some occasional very depressive thinking and some weird physical head discomfort-- odd vibrating sensations-- along with strange tastes in my mouth. 

 

I think I am going to ask my pdoc this week to reduce by 25mg. I wonder if I should try to plan it all out or just take one step at a time and improvise? 

 

I will have to take 350xr plus 25 ir

 

Sleep could be more consistent but working on that. 

[mammaP]

Hi Castor,  you need to be consistent with your dosage and the cuts need to be no more than 10% of the current dose with at least 4 weeks between cuts. I wouldn't plan too much and listen to your body. 25mg is a good cut well below the 10%, if you get any symptoms then it's a sign that the cut was too big, or too close to a previous cut. You will soon get to know how your body is affected and know when to cut and when to hold. 

[Castor]

I am on Seroquel and trying to withdrawal after a history of bad benzo withdrawals. 

 

My worst symptom is the feeling that my brain is pushing against my skull, a sort of strange nerve pain. Sometimes it's not so persistent and my brain feels almost like an itching, tingling sensation and I'll feel the need to pull my hair very aggressively (but not pull it out). When this is happening I also sometimes feel lots of weird tastes in my mouth.

 

Should I see a neurologist about this? Can anyone relate to or explain it? It's really, really unpleasant.

 

cas

[a99]

I am on Seroquel and trying to withdrawal after a history of bad benzo withdrawals. 

 

My worst symptom is the feeling that my brain is pushing against my skull, a sort of strange nerve pain. Sometimes it's not so persistent and my brain feels almost like an itching, tingling sensation and I'll feel the need to pull my hair very aggressively (but not pull it out). When this is happening I also sometimes feel lots of weird tastes in my mouth.

 

Should I see a neurologist about this? Can anyone relate to or explain it? It's really, really unpleasant.

 

cas

I get this occasionally ,  it's so horrible 

[Petunia]

Hi Castor,

I moved your most recent post from another part of the site to your introduction thread here because it was related to your own situation specifically. Please add information and updates about your changing circumstances, and ask questions here.

 

Strange head symptoms are very common in withdrawal, in fact withdrawal symptoms can effect any part of the body. Please add to our head symptoms topic here:

Head noise and other symptoms in the head

I think you have been tapering too fast and this may be why you are getting these symptoms. As others have suggested, I think you should hold for now and not attempt to taper until your symptoms have settled down. Please read through your thread and the links which have been posted.

 

Please would you put your drug and withdrawal history in your signature. Putting a short version of your drug and tapering history in your signature helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

 

Petunia.

[Castor]

* moved from symptoms

 

I have been on Seroquel xr for 3 years and am trying to withdrawal. Recently I did an overly aggressive reduction (from 400mg to 350mg) and got hit with this incredibly uncomfortable sensation of my brain "swelling" in my head. It has been going on for 2 weeks and I'm concerned that it hasn't improved, even though I raised my dose to 450, then 500mg. I am wondering whether I need to raise my dose even more to try to stabilize again.

 

I am extremely sensitized to medications because before seroquel I had multiple bad benzo tapers. Currently I am only on Seroquel.

 

Any feedback would be appreciated.

 

Cas

[Altostrata]

Castor, as far as we know, there are no shortcuts to gradual tapering. You will need to be disciplined to do it at a rate that minimizes withdrawal symptoms. We recommend trying a 10% taper per month.

 

Please read the topic Tips for tapering off Seroquel (quetiapine) carefully.

[Castor]

An update since I haven't been on here in awhile....I tried to cut from 400mg xr to 350mg xr (a 12% cut) around May 15 and it turned out to be a total disaster. I started getting a lot of pressure and my brain feeling really raw, especially at night. I tried to "grin and bear it" for about a week but that only made matters worse-- by day 6 I was suffering a lot at night, very agitated, etc.  So I wound up having to increase my dose, only stabilizing at 550mg xr, which is where i am now. In other words, I lost at least 3-4 months worth of tapering by trying to white-knuckle through a too-aggressive withdrawal. Extremely frustrating, but I hope a lesson learned. Because of all my previous med history, I think even 10% is way too aggressive. I might be able to cut at 10% to get back down to 400mg, but after that I will need to take it much slower. I am going to stay at 550mg xr a few more weeks at least before making any more changes. Ugh.

[Altostrata]

Sorry to hear that. Yes, you might have to taper at less than 10% per drop.

 

You might be interested to see this Why taper? Paper demonstrates importance of gradual change in plasma concentration

[areyouthere]

 Extremely frustrating, but I hope a lesson learned. Because of all my previous med history, I think even 10% is way too aggressive. I might be able to cut at 10% to get back down to 400mg, but after that I will need to take it much slower. I am going to stay at 550mg xr a few more weeks at least before making any more changes. Ugh.

Castor... I am so glad that you didn't taper more than 12% and that you have decided to remain at a consistent dose for awhile. Your brain and body will thank you in the long run. 

 

Yes. We all learn lessons during this journey.

 

I have experienced tapering by small amounts only to find that it was wayyyy too fast and then , at other times, found that I was able to sneak in a larger cut when I just didn't expect it.

 

The only thing that I have consistently found to be steady and true is that making very small cuts is ALWAYS more likely to work.

 

You can always try another small cut sooner and back up without losing much ground, but once you make an over exuberant large cut ,  it is much more likely to set you back.

 

Smal, small, small, hold, hold, hold and SOMETIMES you can sneak in a little extra!!

 

Congrats on a lesson well learned!!! We all go through it!!!

 

RU

 

Castor... I just went back and read your introductory thread and was struck by several things. First, your description of how you feel on seroquel is so familiar to me. You said, "emotional flatness, cognitive impairment especially memory issues, and that indescribable symptom of being "absent" in my own body and mind."..... and I say  EXACTLY!!!!! That is EXACTLY how I felt on twice the dose of Lexapro that I am on now!!! 

 

Secondly, it hasn't escaped me ( has it you?!) that you are very aware of your tendency to push too far too fast. That is good. And now that you've pushed too far , you at least know by what amount and so you can now more accurately make a smaller cut. If I were you, I wouldn't try any more than 5 %, and probably less than that to start with. You will likely have to hold a little longer at first too. Don't worry, all of this waiting will pay off later...

 

And finally.... you mentioned that you were exercising & "keeping up a good diet". I want to emphasize how great that is!!! Keep up the good work!!!

 

again.... RU & welcome, Castor. 

[Castor]

Thanks RU and Alto. The feedback is super-appreciated.

[Castor]

It's been over a week since I posted so thought I'd update. Things seemed to be settling down at 550mg XR. But then one night I couldn't sleep and decided out of desperation to take 20mg of Amitryptiline (which I was prescribed PRN several months ago). Put me to sleep but over the next few days things got worse-- the return of extremely painful swelling sensation in my head-- as if my brain were smashing up against my skull-- and weird salty tastes in my mouth. That was 5 days ago and things only starting to settle again.

 

Basically I am incredibly sensitized at this point-- to everything. Not only can I not tolerate coffee, alcohol, nicotine, etc.--even a very small dose of an antidepressant I used to take sets off awful somatic symptoms. How I am ever going to get off all this Seroquel with this sensitized a brain I don't know. In all honesty I'm not sure it can be done-- the somatic withdrawal effects are too brutal. But I have to try. Going to wait at least a few more weeks on 550mg with the hope things re-settle again.

 

If anyone has any experience with the physical symptoms I've described, I'd be very grateful. Maybe I should see a neurologist? Also any other feedback is appreciated.

[Altostrata]

You need to let your nervous system settle down. Going up and down in dosages and throwing in other drugs here and there adds to the uproar.

[areyouthere]

It's been over a week since I posted so thought I'd update. Things seemed to be settling down at 550mg XR. But then one night I couldn't sleep and decided out of desperation to take 20mg of Amitryptiline (which I was prescribed PRN several months ago). 

 

This is a normal and one of the most frustrating parts of WD. I wouldn't try desperate measures.

 

I agree with Alto... don't change anything, be patient with stabilizing and in the mean time look at alternative and natural ways to remedy difficulty sleeping.

[Castor]

Having a rough time. My sleep is very erratic, and especially lately I find the cognitive and emotional blunting really severe. This is partly because I'm still on such a large dose (550mg seroquel xr). My short-term memory is also quite diminished.

 

I sometimes even wonder whether I'd have an easier time switching from Seroquel xr to another AP like Latuda or Saphris which supposedly have less of this blunting (something my psychiatrist has raised as an idea). But idk, seems risky.

 

Two nasty recent events. I stupidly had a coke the other night and one hour after drinking it the physical sensation of "swelling" in my head was intense, my heart rate shot way up, and I was dizzy and totally panicked for over an hour. I had to stay on the phone for over an hour with a friend who has also suffered withdrawal.  I have become frighteningly sensitized. 

 

The second is ongoing-- over the last two or three days I've developed a twitch in my right eye, a sort of pulsating sensation that is possible to see close-up. I'm hoping that it's because I've been stressed out and underslept lately and that some regular sleep and exercise will make it go away. But I've also heard Seroquel can effect peoples in negative ways. Idk even feel like I have the energy to research it.

 

I wish I had something more positive to report, but feeling pretty bad lately. No change in my medication, sticking at 550mg xr. 

[Petunia]

Are you taking any other medications at the moment castor?

 

 Because of all my previous med history,...

 

What date did you last stop taking benzos?

 

Please would you put your drug and withdrawal history in your signature. Putting a short version of your drug and tapering history in your signature helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

 

 

Here's how to add your signature from a phone or tablet:

 

http://survivinganti...nature/?p=84105

 

I'm thinking that as you are able to reduce your dose, by tapering carefully and slowly, you will probably start feeling better.

[Castor]

Hi again friends. 

 

FYI Petunia: I stopped taking benzos in the summer of 2012. I am not on any medication other than the Seroquel xr. I will try to add more exact dates to my signature when I have a little more mental energy.

 

Still experiencing rough sensations of my brain "swelling" at night, at different intensities. Last night this was accompanied by some frightening intrusive suicidal thoughts/images for about an hour, but thankfully not active suicidal ideation. 

 

I am going to break up my dose, starting tonight with 500mg xr at night and 50mg xr in the morning b/c I suspect the night dose might be triggering some of these sensations-- it might be toxic to take that much at once. I don't know if thats true but its possible. 

 

Wondering how slowly I should transfer more of my dose to the morning? Not sure about this. I just feel like I need to do something to get back to stable ground where I can start tapering again. I have just messed so many things up with this process, I should be on way less of the drug. But I can't try to speed things up, that's just courting disaster. Gonna give 550mg at least another week while trying to shift some more of the dose to the morning... unless friends object.

[Altostrata]

Coke is loaded with caffeine, plus it messes up your blood sugar pretty severely.

 

Yes, it's possible 550mg Seroquel is too much for you and causing a paradoxical reaction at night. Dividing the dose as you proposed sounds like a good idea to me.

 

The way to do it is to gradually take 50mg a couple of hours earlier each day, moving it from your nighttime dose to a morning dose.

 

Is your psychiatrist cooperating with your tapering plans?

[Castor]

Hi Alto. Yes, I have a new psychiatrist as of this month and he is cooperating. 

 

Today will be my second day taking 500mg xr at night, 50mg in the morning.

 

No return of suicidal ideation last night, generally it was a better night. Fingers crossed for tonight.

[Altostrata]

Good to hear. It will take at least 4 days for the dosage change to fully register.

 

Does your new psychiatrist know anything about tapering?

[Castor]

Hi again alto. Yes, he is a self-identified "holistic psychiatrist" and is on board with tapering gradually, although i don't think he quite gets how gradual I will need to proceed given my complex med/withdrawal history and sensitization. No more cutting 50mg at a time, or even 25mg for that matter. I know I need a different strategy, but I think he will be on board for it. He does not quite believe my whole history and has ordered a battery of lab tests etc....he also raised the idea of switching APs, but I think I made it clear I don't think that is a good idea.

 

I will stick to my current dosing level and schedule for at least 4 days.

[Altostrata]

Switching drugs always brings an additional risk.

 

In a bit, if you feel you can recommend him for tapering, please add his contact information here http://tinyurl.com/7cp8l8v

[Castor]

My sleep schedule is really messed up-- last night I didn't get to sleep until 5am. When I woke up at 12:30pm I had some weird body sensations-- like it was hard to move-- plus head pressure, and a bit of strange thinking. This lasted for about 20 minute before starting to fade away. Essentially symptoms that I typically get at night were spilling over into the day. 

 

I really feel like I'd be helped if I was able to sleep regular hours, as those are typically when symptoms are worse. Idk, feeling concerned.

 

This will be my fourth day taking 50mg xr in the morning, 500mg xr at night. Very eager to start tapering but not sure I'm ready yet after the turbulence of the last 2 weeks (caffeine, failed amitryptiline experiment, etc.)

[Altostrata]

How is this different from when you were taking 550mg at night?

[Castor]

There was no typically no harsh symptoms during the day. They were all at night. 

 

My last period of harsh symptoms during the day was during the week after (rashly) cutting the dose from 400mg to 350mg several weeks ago.