SaraInCanada: tapering Seroquel

[SaraInCanada]

Hi everyone,

 

I joined this website because someone on Facebook suggested it. I really, badly need help tapering off 87.5 more mg of Seroquel. (Nope, antidepressants aren't the major culprit in this story - but I gather this site is for other kinds of psych drugs too.)

 

I was forced into psychiatry through extreme experiences and being hospitalized, I never came to it willingly or believed I was "sick". Between 2002 and 2006, I was in an out of hospital every year or 2, then immediately went cold turkey and went on with my life until the next time. However, sometime in there they started keeping me longer, 2 or 3 months, and I developed physical dependencies. That's when withdrawal hell started. Even out of the hospital, I struggled - with panic, mostly. And in 2006, they locked me in for long enough, drugged up high enough, that they broke me. I believed I had the illness they said I did, and faithfully tried various cocktails of drugs, none of them making me more functional or human, falling further and further into the trap of lifelong mental patient.

 

I left that hospital with a heavy dose of Seroquel, and I can't remember all the combinations they tried in the years that followed. I was a zombie on 300 mg Seroquel, so there were other things tried. At one point I was on Celexa, at one point lamictal, and Wellbutrin on and off. The Wellbutrin gave me more energy, but it didn't actually make me feel "better". Nothing did. It was the zombie-effects of Seroquel (and lithium for some time) that were really making me suffering. Risperidone and Valproic acid both made me feel freaked out all the time - the description of akathisia didn't do it justice.

 

And the worst of it was that in the years SINCE I "developed insight", I was hospitalized MORE times than before. It was a terrible cycle. The very worst was when I finally decided to try lithium, being told it was the "gold standard". That's the first time I ever thought about killing myself. I felt so hopeless.

 

Sometimes in the months after December 2010, something woke up in me. I realized I was in a prison, and getting out of the prison would depend on my own good behaviour, so even chemically lobotomized, I had to be on my own side, figure out a lot about myself, learn to develop a stronger sense of self. I worked for 13-16 months (I can't really remember now), at a job I didn't much like but was able to tolerate during that time, partly because I was a chemically lobotomized half-human, until I couldn't stand it any longer because I've been sick of the field for years. I tried a series of other jobs, but couldn't stand those either. Around these times I was also lowering the drugs to not feel like such a zombie, so I could interact like a normal human being instead of feeling trapped inside myself and unable to relate to even the most basic human things. I was withdrawing from both Seroquel and Wellbutrin at the same time, though taking steps with just one of them at once, and there reached a point when the Seroquel was low enough that the 100 mg of Wellbutrin I was still on was causing rage and irritability. That, coupled with how boring the job was, was probably why I quit a job after about 5 weeks. I realized I had to get off Wellbutrin or someone would shove me in the hospital and jack up the Seroquel for the rest of my life and repeat over and over again how seriously mentally ill I am and in need of lifelong drugs, so I went off 100 mg of Wellbutrin all at once.

 

That wasn't actually that bad. Dysphoria and feeling slowed down, perhaps, but it passed.

 

What IS bad is Seroquel withdrawal. I've been lowering it by 12.5 mg every 4 to 6 weeks since starting at a dose of 275 mg. (I went from 300 to 275 all at once, and it was so unpleasant I never did it again.) Between 275 and 100 or 125, it wasn't so bad. I had a few nights of troubled sleep about 2 nights after the reduction, then maybe some uncomfortable feelings, which I can't remember clearly. But the past few dosage drops, it's been horrible. Extreme panic and rage, stomach pain, dizziness, nausea, feeling hot all over last time, being too scared to sleep, even vomiting once, little appetite (aversion to food), muscle spasms (which have been hitting me now and then over the past few months anyways - may or may not be correlated with Seroquel), very dry mouth. A few weeks ago my stomach hurt all week. It will hit suddenly, like a mountain of anxiety coupled with stomach flu. My stomach will feel like it's full of gas, and the feelings are only relieved on the toilet or by throwing up. A couple nights ago I was up all night with combination rage and terror and finally threw up at 5 am. We went to the ER then, and the doctor there denied that Seroquel had any withdrawal symptoms, and basically blamed the psychiatric label for my problems. But at least I got some Ativan that let me sleep all afternoon Saturday and all night Saturday night. (I don't take the stuff normally, but in this case, none of the tools in my book were working.)

 

12.5 mg is the smallest dose these pills can be cut into, and I always wait at least 4 weeks between dose changes, usually as much as 6. With the exception of rebound insomnia which hits a couple nights after the reduction and lasts a couple nights, the heavy, horrible symptoms hit 10-14 days post reduction. I am now afraid to proceed any further. I still know I will not be at my best until I am off these drugs and in charge of my life, but at this stage I'm worried that proceeding as is will land me in the psych ward when I freak out. At 5 am a few nights ago, I was on the verge of screaming, I was so terrified. It was a blessing I vomited. But it was very clear what the attitude of "providers" would be - you need more drugs, you should never be off them, etc. My blood work was normal, by the way, except a slightly lowered potassium, which they attributed to vomiting and dehydration.

 

I've been trying so hard to move on with my life and get out in the world and do things, and it just seems so very hard at times. I don't want to think of myself as disabled. And now, I don't know what to do with my drugs anymore. I feel like I'm at a dead end.

 

Someone suggested I do a water taper from now on, where I switch to crushing my pills and taking them three times a day dissolved in water, then slowly remove bits of water with a syringe before swallowing the rest. But I wonder if I have to go that far, if there is some way that is a little less inconvenient, e.g. that doesn't require 3 doses per day. I could work with a compounding pharmacy to get custom dosages, e.g. reduce by 4 or 5 mg instead of 12.5, but I don't know if that will be safe enough.

 

I also need to know that these are withdrawal symptoms, just to keep myself sane. I've been through such hell lately. And not working, and not having a place in society, are both so hard. I'm very frustrated because I'm an intelligent person with a lot to give, and I am just not consistent enough to give it now, with this psych drug and withdrawal hell. I've also had the accomplishment of staying out of the hospital almost 2 years and 5 months, which is the longest I've been free since 2002, and I don't want to ruin that by getting thrown back in.

 

Any thoughts or suggestions would be most welcome.

 

Thanks,

Sara

---

Started at: 300 mg Seroquel, 300 mg Wellbutrin, 0.25 mg Clonazepam (last known combo - many before that)

Currently at: 87.5 mg Seroquel

[strawberry17]

Hi SarainCanada

 

Welcome to the forums here, you've had a horrific time over the years, like many others here sadly, but you've come to a good place for support with tapering off your last bit of Seroquel, I don't know anything much about Seroquel, but, here is a link from the tapering forum about it, in fact it might be worth you doing a search for Seroquel to bring up some more info:

 

http://survivingantidepressants.org/index.php?/topic/1707-tips-for-tapering-off-seroquel-quetiapine/page__p__16437__hl__seroquel__fromsearch__1#entry16437

 

Someone or some others will be along later who know a lot more about this particular drug and can give you some pointers as well. People are very friendly and supportive here.

[Altostrata]

Welcome, Sara.

 

The topic to which strawberry pointed contains tips on how to titrate Seroquel.

 

If prior withdrawals caused you to be rehospitalized, you'll want to go very slowly to avoid destabilizing your nervous system again. See Why taper by 10% of my dosage?

 

This probably will mean making a liquid from your tablets or having a liquid made up at a compounding pharmacy.

[Edted]

Dear Sarah: Good for you for recognizing the madness in the medical merry-go-round. Sorry you're having a rough time right now. I'm not an expert, by any means, but when my son has been in withdrawal, I've tried to learn a little about the neuro-transmitter piece of the puzzle (that is just a piece). To answer your question, if you are experiencing withdrawal symptoms, sure sounds like it. Seroquel hits quite a few receptors, and withdrawing can trigger a "blowback" effect in any or all of them. At this point in your withdrawal, it less likely to be with the histamine receptors (that would be expected around 50 Mgs). It would be expected to have already happened for dopamine (at around 250 Mgs). Right about now, you could have problems in three different areas: serotonic, muscarinic, and/or adrenergic. Mild serotonin toxicity is often characterized by nausea/vomiting, diarrhea, muscle spasms, and fever (the list is actually longer than that, but you will probably look up the symptoms to know more and I'm typing on an IPhone, so trying to keep it brief). The surest indicator of serotonin toxicity is sustained muscle over activity). The next time you feel hot, take your temperature. With serotonin toxicity, your temperature will actually be elevated. If you find indications that you might have serotonin toxicity, you might try a day of altering your diet to see if you feel significantly better. Eliminate high serotonin foods (nuts, chicken, turkey, lean meat, fresh veggies, eggs, dairy, bananas, etc) instead have broth and potatoes, rice, overly boiled veggies, etc) and push water (no pulpy juices or pineapple). If the problem is cholinergic blowback, you might try a day of foods high in atropine (bell peppers, potatoes, etc). If you are a smoker, you might wish to cut back just a little to see if that helps. If the problem is adrenergic. Then you want to try to work off some of the excess epinephrine with very light exercise and see how you feel. People on this site know a lot more than I do and may correct some of my advice. I know they will tell you to be cautious, make small changes, and pay careful attention to the effects of changes. You didn't mention how you split up your 87.5 Mgs for your 3X day doses. How you do that can effect things too. Hang in there and welcome to the best site on the web.

Ed

[Altostrata]

Ed, that's far more detailed information than I could have provided. Thank you and please add your info to the Seroquel tapering topic -- it's invaluable.

[SaraInCanada]

Thanks for the replies.

 

Right now I only take Seroquel 1x per day, at night, 87.5 mg. Three 25 mg pills and 1/2 a 25 mg pill, because that's the smallest it can be cut. Someone else suggested I switch to 3x per day and do a water taper (crush and dissolve my dose in water, divide it in three, take it three times a day, take away a little more water each day), but that sounds hard to get right, and like a lot of fussing with crushing pills and moving liquid around in syringes. I wonder if I can just get a compounding pharmacist to, say, give me 85 mg or 82.5 mg pills next time, so the taper is a small number but I'm still taking it once a day. But that same person said that even that slow a taper could cause long-term withdrawal symptoms, even ones that happen after you are off Seroquel for months, so I am scared.

 

Yeah, I noticed the dopamine withdrawal effects a long time ago (being a little sped up for a few days, then it calming back down), and they seem to have passed. With this last bout of symptoms, I was thinking I was dealing with adrenergic due to the panic/rage, but those serotonin symptoms sound very familiar too. I'm not sure what muscarinic even is. The pharmacist said things usually get smoother when you get down to 25 mg - I suppose by then it's all histamine.

 

The panic/rage feels like my sympathetic nervous system is on overdrive. It's not accompanied by thoughts at all, just a feeling in my body. It mostly passed after I vomited, and hasn't come back since that time (Saturday morning at 5 am). Right now I don't have any of the major symptoms anymore, am just mostly scared because of what I've been through, and a bit subdued.

 

The hot feeling meant I had to take off all my clothes and was still hot, but when I tested my temp, it was all over the place. 98.6, 99, 100.2, it varied. In the ER, after I'd vomited at home, it was fine. This is the first time my withdrawal symptoms have featured so much of a feeling of heat, tons of stomach pain or enough nausea to vomit. My stomach hurt for what seemed like a week. But the muscle spasms have been happening on and off for the last few 12.5 mg reductions. They can be very painful. I can mostly head them off now, though, by subtly stretching as they start to happen.

 

I haven't landed back in the hospital the whole time I've been tapering Seroquel + Wellbutrin + Clonazepam since Dec 2010 (the last time I was in there). In the past, there were years where they'd hospitalize me for 3 weeks to 3 months, I'd leave and go cold turkey, THEN I'd have serious problems. This time I've been going as slow as I can. My life has been under control. Saturday morning was the first time I'd been to an ER in years, I think (last time was due to a bought of vertigo... in 2011?). And I went because I was terrified I was going to die. At its highest, the panic sensation felt like doom, like I was going to scream and freak out of my mind. Thank god for the puking.

 

I hope this makes things clearer. Even reading that list of serotonin-related withdrawal symptoms makes me feel better. And today I am feeling much more in control again... Just wanting to wait a long time (maybe the whole summer) before trying to reduce again, and wanting to have a more gradual strategy, since 12.5 mg (smallest that can be cut) is apparently way too much at the dose I'm at currently.

 

Thanks,

Sara

[Rhiannon]

Given your lengthy and chaotic drug history, I think waiting for several months (at least) before trying to cut again is a very good idea.

[Jemima]

...Even reading that list of serotonin-related withdrawal symptoms makes me feel better. And today I am feeling much more in control again... Just wanting to wait a long time (maybe the whole summer) before trying to reduce again, and wanting to have a more gradual strategy, since 12.5 mg (smallest that can be cut) is apparently way too much at the dose I'm at currently.

 

Thanks,

Sara

 

It's important to listen to your body during withdrawal from any psychotropic drug, so do what feels comfortable to you. If that means staying where you are for the summer, so be it. The idea is to come off as comfortably as possible, not to win a race!

 

I'm so sorry to read of all the hell you've been through in the hands of psychiatry, and I suspect there are a lot more people with similar experiences who don't understand what has happened to them.

 

Welcome to the forum.

[Edted]

Alto: When I get to a computer (I'm on my IPhone right now). I 'll paste the info to the "tapering Seroquel" page. I'll try to put whatever I think I know/suspect about Seroquel, when I get a block of time to give it my best shot. I don't know how you do all that you do.

Sarah: Great to hear that things have settled down abit. You sound like you are stabilizing. Jemima's suggestion of a hold period makes sense to me. I don't believe that "head stuff" is just about the brain, and holding gives the mind (as opposed to the brain) a chance to get a handle on things. The muscarinic system has to do with acetylcholine. If you google the parasympathetic system, you'll find some interesting stuff regarding "rest and digest" and "feed and breed". You might want to look at pns and the vagus nerve too. Some abdominal issues appear tied to the vagus nerve where it wanders around the thorax. So glad things have settled down.

Be well,

Ed

[SaraInCanada]

I guess my big question at this point is: Is it worth switching to 3x a day dosing, including water tapering, or are people successful at withdrawal by sticking with 1x a day and just getting a compounding pharmacy to give them small enough dose reductions? The water taper folks seem to think that any withdrawal symptoms are dangerous and it's better to use a titration that allows tiny amounts to be taken out every day or two instead of a chunk every few weeks. But that sounds terribly inconvenient, and error-prone, plus my body is used to 1x per day.

 

I need to feel that I'm okay, so I'm giving it a rest for now. Probably the summer. At least I'm not a zombie at this dosage.

 

Sara

[primrose]

Good luck with tapering seroquel.

Last year, I was on 150mg seroquel.

I paused my benzo taper to water-taper down in 12.5mg decrements to 100mg.

It went without event.

When I tapered the last 12.5mg I switched to 4 x a day dosing and it also went without event.

I stopped tapering seroquel and resumed tapering valium.

[Emely]

Hello SarainCanada,

 

So sorry for your story and what you are gone through !

 

You already got down to 87,5 mg Seroquel.

That is very good ! So I would stay a while at this dosage for some months.

I was already at 25mg without any w/d and was not thinking that anything will happen, but it was to fast and now I am in a nightmare and it´s very hard coming down again. I am at 225mg now.

So I would be very lucky on 87,5 mg. So if you are stable stay there a while .

 

Emely

[Emely]

Hello SarainCanada,

 

What is about your Thyroid ? That also can effect so many things especially the emotions.

[Meimeiquest]

I tried Zyprexa (a different antipsychotic) from a compounding pharmacy. He said he mixes it in methyl cellulose, which makes it somewhat sustained-release, it is absorbed over 8 hrs. Zyprexa is usually just dosed once a day, at bedtime. Best!

[Altostrata]

What a great discovery, Meimei. Please add it to the Zyprexa topic http://survivingantidepressants.org/index.php?/topic/3743-tips-for-tapering-off-zyprexa-olanzapine/ when you have a chance.

[SuperRyu]

Hi SaraInCanada,

 

Let me tell you a bit about my story.....

 

I was taking Seroquel for more than 5 years (if my memory serves me right at least it was seven 7 years).  This was the last anti-psychotic that I used. I had gone through several pych meds for about 14 years of my life beginning from anti-depressants, becoming anti-psychotics, then a combination of them, then they added a few benzo's then. My problem began in 1995 during a high school "core energy" retreat that stressed me out. My problem continued until college and at work. During these 14 years I was almost the same as you..... feeling like a zombie..... being inconsistent and not having my freedom inside...... (it's screaming inside beleive me)... I had very low self esteem as i can't feel my self controlling my life up to the point where I questioned my being a human person already.... I'm almost living like a dog.....

 

I was able to take it off with only that thing in mind...... ALL of it up to 0mg of Seroquel up to now in 2013..... I was tapering for more than 1 year.... I was already beginning to taper off when I was at work (btw i'm an engineer) and then our company shutdown and I thought this was the perfect timing to get off it..... It took me at least (or more than) a year to do this.... tapering 10% in 2 weeks time.... I was not always successful..... I had to go back from time to time to a higher doseage..... but then I would always try to get back on track after a few weeks or months...

 

One thing that really helped me was taking a bike, jogging or walking to our church in the mornings.... i did it most of the times and I tried to keep it regular during the tapering (I still try to do it up to now.....) This was very important to me as I approached the 200mg to 150mg stretch mark..... this was the hardest part for me as this was for me was the dopamine part.....

 

Then came the serotonin, histamine part (or whatsoever....)., This was being apparent as I was already having stomach issues.... and not only that even the muscle spasms would come......  sometimes on my calf or back of my ribs, sometimes being INSIDE my HEAD literally..... feeling my innermost brain cramping or beginning to get hard... at the same time my stomach and brain would do a contest with each other.... I would also feel very strange like an auto-immune thing or something that eats me up and can't understand the feeling.... It would come and go......

 

I discovered many things while tapering off (specially as I was reaching 50mg - 25mg  and 12.5mg). Vitamin C would help in my panic attacks .... also in my feelings of paranoia or being suspicious. I also discovered for me that Lactobacillus casei (shirota strain) "YAKULT" was also good for me as it helped me have nice feelings of being alive (and a ticklish feeling inside).  I discovered that Vitamin C and also Yakult would help me as Vitamin C is a good companion for the adrenals...... Dopamine needs to by synthesized into epinephrenine..... Vitamin C can help with this......   With the Yakult part I discoverd that probiotic strains can have a relationship with epineprenine..... I was also taking a good form of B-Complex....

 

A word of caution though is not to overdo the vitamins and supplements at it can hurt the stomach also if taken too much..... Also, during the withdrawal, certain high dosage of vitamins (for me some high dose B-vitamins) would actually aggravate your symptoms as it might interfere with neurotransmitter production). Care and experimentation should be taken.........

 

Now that I've taken them off, I still continue the journey..... It's not gonna end there...... In fact..... the personality or emotional things you had "before" taking the psych meds comes back...... AND you have to deal with them...... sort of dealing with the real world...... At some point your tapering off will be useless unless you come back to society...... and try and try again because you will never get better unless you do it...... It's a continuing process that doesn't end when you take them all off.... the only difference is there's nothing like the true taste of freedom.......

 

Regards, Goodluck my friend,

 

SuperRyu

 

P.S.

 

Nutrition also plays a very important role.... I tried to stay away from sugar, soda's, softdrinks and sweet shakes with too many artificial things..... I always tried to eat the right things and had protein in my diet.

 

 

 

 

[Altostrata]

Thanks, SuperRyu. That is a very interesting story.

 

Please start a topic for yourself here in the Intro conference, so others may see it.

[SaraInCanada]

I wanted to share some good news somewhere! After 10 years of being on Seroquel and feeling depressed, lethargic, unmotivated, mentally and emotionally dulled, I finally successfully tapered off of it! I've taken it in doses from 275 to 400 mg the past few years. After tapering for the better part of a year, a week ago, I took my last dose.

 

Since stopping, I've noticed the following benefits:

- My sleep is much better. Deeper, more restful.

- I don't need to sleep a ridiculous length of time and still feel groggy all day. My body wakes me up rested after about 7 hours.

- I feel more in touch with my thoughts and feelings, more myself. Even at the lowest doses during the last 3 weeks of my taper (25 mg, then 12.5 mg) it was still making me feel bad.

 

Withdrawal symptoms from the last reduction (12.5 mg to 0):
- Very itchy, especially at night - I think that's antihistamine withdrawal

 

This is at least the 3rd time in the past few years where I've attempted to taper slowly off of Seroquel, and the other times I failed at doses slightly below or above 100 mg, so this is a first for me. It might be helped by the fact that I've grown as a person, have become more connected to family and friends and society in general (feel less alienated), done some freelance work that has made me feel that I have proven I can get out there in the world and be a real person, learned to discharge trauma in my body, become more aware and mindful of being triggered into shame or rage, started to pray, and developed greater tools for enduring and working through painful emotions, e.g. journaling. Maybe fish oil is helping too, who knows. Also, the Tegretol I've been on since fall has in effect lowered the Seroquel concentration in my blood, so even though the taper was 25 mg every 2 weeks, and 12.5 mg for the last week, it was equivalent to a smaller taper, when blood concentration is considered.

 

I'm still on clonazepam and Tegretol, and will eventually be coming off the clonazepam, but my doctor insists we wait 3 months before starting the clonazepam taper. To make sure that if there's a problem he will know which drug to look at. I agree with the idea of giving it some time, but I also don't like the implication that the only solution to Sara's problems is another pill. He even has his "Plan B" in case being off Seroquel doesn't work - "Latuda"! I tried to talk to him about counseling or other approaches to help me before there's a crisis, but he doesn't believe that stuff is effective given the diagnosis they have pinned on me (which never felt like it grasped the nature of my difficulties). I feel like he believes in pills more than he believes in me, but that's because he's a psychiatrist. I've had to fight to get to the point where I'm on little enough medication that I can actually function. My life did not feel worth living when I was zombified - and I've never considered killing myself when I wasn't on psych drugs.

 

But anyways, this is my success post.

[Simmering]

Mega Congrats, Sara!! I tapered off Seroquel many years ago and know what a difficult feat it is and how much better I felt without it. Plus, I'm impressed with all the positive things you have done in your life since your previous attempts to taper, very inspiring. Simmering

[Shep]

Hi, SaraInCanada. 

 

I just merged your last post with your Intro/Update thread from 2013. Please note there's only one Intro/Update thread per member.  This will help us see your whole story in one place. 

 

Yes, I would definitely wait before reducing the clonazepam and Tegretol.  In the meantime, here are some links for the next phase in your tapers:

 

 

Taking multiple psych drugs? Which drug to taper first?

 

Why taper by 10% of my dosage?

 

What is withdrawal syndrome? 

 

The Windows and Waves Pattern of Stabilization

 

Symptoms and Self Care

 

 

There's a benzo section of the forum which you might like to explore for information on clonazepam:

 

Members only benzo forum

 

 

Please please your medication information in your signature. Here's how:

 

Please put your withdrawal history in your signature

[andy]

Well done Sarah,I came off quetiapine and it was hard.Its good to hear you feel so much better ,I also feel the same after coming off all the meds I've been on for the last three years

Well done

[SaraInCanada]

Hi everyone,

 

It's been a couple of years since I last posted, and I read my previous message with some sadness. Shortly after that point, in spring 2016, I had a massive episode and was hospitalized, on and off, for about 5 months. I can't even describe this episode clearly. I had delusions, some of them paranoid, and in the hospital they called it mania, as usual. They changed my drugs around and put me on lithium (600 mg) and paliperidone (Invega). I couldn't sleep, I thought it was all-out world war, that I was a hero journalist (I had previously worked as a university journalist), even that aliens were invading. It was a lot of play-acting. I even drove my car out of town and ran into a field to hide from the invading armies.The hospital had absolutely zero empathetic response to my psychotic state, which I think is sad, because psychosis comes from trauma in my opinion.  I think my substitute decision-maker was being threatened with the possibility of putting me on a long-acting injection, which thank god didn't happen.

 

After the last hospitalization in that bunch, they released me back to my home again. I spent many months barely able to get out of bed. I ended up having a voluntary hospitalization where they added Paxil to the Lithium (I was already off the antipsychotic by then - it was way too expensive) and they increased Lithium to 1200 mg. At that point I was barely able to get out of bed, but I would still just sit and sit and sit, my head cloudy and just unable to find that inner handle to get myself moving. I also had sleeping problems, having trouble falling asleep at night due to extreme fear and just not being tired. I credit the extreme fear to traumatic memories/flashbacks that trouble me at night, and maybe even the fear that brought me into the hospital in the first place. So my sleep got into this horrible pattern where I fell asleep later and later each night, and woke up later and later each day.

 

For a long time I was able to manage that sleep pattern, but needless to say, between the cloudiness and the degrading sleep, I couldn't really commit to activities. Plus it was really hard to just move. I was quite frozen.

 

Sometime during the time on lithium, maybe in the fall, they discovered I'd developed hypothyroidism (probably due to the lithium, though I have a family history). I was very tired and weak and had a skin problem. So they put me on levothyroxine, but since then have still not managed to get my TSH into a healthy zone although I don't feel as tired and weak.

 

Then I started spending a lot of time on the trauma work I've been doing with my therapist for the past 3 or 4 years. Little movements, visualizations of energy, sound work, whatever seemed to help. I really felt like I was starting to wake up again. I was releasing trauma the way my therapist had helped me learn. I think during this time we might have been tapering a benzo, too, but I can't remember which one. Anyways, eventually I just had trouble sleeping, period. Couldn't fall asleep, the fear in my body as usual. It lasted several days, and apparently by that point I was quite incoherent.

 

So I got hospitalized again (involuntary as usual). Again they said it was mania, but I was sitting around doing nothing in the hospital. Doesn't seem very "manic" to me. I definitely wasn't happy or in anyone's face. My mom said I didn't even have "pressured speech" this time. It was different. Doctors didn't see it that way. They kept me on 1200 mg lithium and added 200 my Seroquel, 200 mg Tegretol, and 2 mg clonazepam (to replace the other benzo, I think). As usual, no therapy or real help in the hospital. I felt very angry for many weeks, because nurses kept saying I'd be out right away (because they saw how settled I was), and doctor kept being an ******* instead. Ironically my anger worsened after they added the Tegretol (They started with the clonazepam, then the Seroquel, then the Tegretol). The doctor claimed it was a sign of "irritability" that after a meeting in which he said he was forcing me on Seroquel, I threw my styrofoam cup of water on the floor. But I was upset!

 

So now here I am on a cocktail again. The inpatient doctor was SO STUPID that he reduced my clonazepam from 2 mg right down to 1 mg immediately before releasing me - I had to struggle so much with anger and overactivation after release! The only good news is that I've been working furiously on the trauma work, because I think it's the only way I'm going to be able to self-regulate adequately to at least reduce these drugs. Since the hospital (I was released in late May - this time it was only a 7-week stay), my outpatient doctor and I have removed an additional 1/8 of clonazepam, 100 mg of Tegretol, and 150 mg of lithium. I've been able to get myself slightly more functional with intensive mind-body work and mindfulness in general, to the point where I've worked on a few projects (with concentration difficulties), but I still feel pretty awful. I suspect a lot of it is trauma and unprocessed feelings, but some of it likely comes from drugs.

 

I just finished the 150 mg lithium taper, and I have to say that although it was unpleasant at the time (weird sensations of activation), now I feel that it was very much worth it. I feel calmer, and my brain fog is better. (Though I think the brain fog is also a function of trauma.) I also feel less exhausted.

 

So now this is my cocktail:

 

Lithium - 1050 mg

Seroquel - 200 mg

Tegretol - 100 mg

Clonazepam - 7/8 mg

 

Now you're probably going, "Whoa Nelly! That's a lot of sedating drugs!" And yep. It sure is. No antidepressants or stimulants here! (They took me off the Paxil.)

 

I'm trying to figure out my reduction strategy, because I'm a "frequent flyer" as they say. The system has pretty much given up on me being without drugs, and I'm not even sure myself, so my strategy has to be a bit more conservative, perhaps more towards risk reduction than complete elimination of all pills.

 

So here are my thoughts:

 

LITHIUM:

It upsets me that the lithium is doing bad things to my thyroid and possibly also exacerbating acid reflux. On the other hand, in the time I was just on lithium, even with hypothyroidism, I didn't gain any weight, unlike on anything else. But, I've also felt emotionally awful on lithium every time I've been put on it. This recent dose decrease was such a relief after I got through the withdrawal activation. But, maybe that means I could just leave it at this level for now. Also, still haven't done the blood work yet to tell the doctor if it's "therapeutic" (not that that kept me out of the hospital before).

 

SEROQUEL:

Over 11 years of my relationship with it, Seroquel has put 80 extra lbs on my 5'6" frame despite eating healthily, causing me to develop abdominal obesity and debilitating foot problems that have finally been shown, on ultrasound, to be due to my weight. On the other hand, I needed it to help me finally sleep in the hospital. And there's an anxiolytic quality that helps with nighttime fear/flashbacks. I worry that I have metabolic syndrome and will never be able to heal without getting off Seroquel, but my sleep is incredibly important for stability right now. We could trade it out for a couple other drugs, say Prazosin (alpha blocker used for PTSD - not my diagnosis but I believe I have something like that) and an anti-histamine sleep aid, to see if we can play with the individual neurotransmitters that Seroquel hits at 200 mg.

 

TEGRETOL:

I wonder sometimes if this one causes a bit of activation in a negative way. It screws with the levels of other things, notably the Seroquel. Right now it's bringing down the level of Seroquel. If I got off of it or reduced it, I would have to beg my doctor to lower the Seroquel, and he'll make ridiculous claims about me needing to be on at least 200 mg since we've been lowering the lithium. Yet right now I"m on an "effective dose" of 150 to 175 mg Seroquel, due to Tegretol.

 

CLONAZEPAM:

I am terrified of lowering the clonazepam further. The last 1/8 mg drop was really awful. I think I would like to wait. I suppose the benefits of lowering it earlier might be a decrease in sedation, but all my drugs are sedating, and drugs like Seroquel and Lithium have worse risk profiles (although doctors claim they're "mood stabilizing" - which seems like nonsense to me). I would rather go easier on my GABA system. On the other hand, my doctor views this drug as less necessary than Seroquel or Lithium, so something worth reducing or eliminating.

 

I read the order of weaning thread, and I think all my drugs fall into the same category - brakes. POSSIBLY Tegretol is a bit more activating for me, but I'm not positive. That would be a reason to eliminate it next. But it will introduce all kinds of wrinkles with Seroquel.

 

What do you guys think?

 

Thanks,

Sara

 

---

 

Lithium - 1050 mg

Seroquel - 200 mg

Tegretol - 100 mg

Clonazepam - 7/8 mg

 

Latest withdrawals: Lithium (1200 -> 1050), Clonazepam (1 mg -> 7/8), Tegretol (200 -> 100)

 

 

 

 

 

[Carmie]

Hi Sarah, 

 

Wow! That’s quite a cocktail of meds. I’m sure someone will get to you as soon as they can to help you figure out what to taper first. 

 

Wishing you all all the best with your taper 💚

[PoetJester]

Hi SaraInCanada

 

i was reading your post and can sympathize with the "end of the world" and "hero journalist" manic scenarios that play out in the mind during wd.  mine are mostly removed by many years so i don't recall them all that much, thankfully,  although there is usually is  some sort of a "liberate me from a depressing living situation during a med withdrawal" going on.  i think wd tends to be an isolating and somewhat hopeless experience sometimes and we are all hoping for ways out of the hopelessness.   to be fair, the world is a pretty horrible place  often  without a lot of sympathy for the suffering of others and people can be heartless and cruel intentionally so i don't think it's entirely unfounded to want some better life, although the mania inspired scenarios where we are combating the world and hoping for help may be to an extent in our head.

 

there are people who eventually get liberated from degrading circumstances, like internment camps or the holocaust or slavery so it's not entirely unheard of to hope for a change.  i had a manic period in 2005, which was actually exacerbated by being held up at gunpoint by a group of younger kids and having my wallet taken and when i reported the crime, having the police accuse me of filing a false report merely on the basis that i told them i was taking zoloft and then threatening to have me arrested.  the handgun and my wallet were found two days later in a nearby apartment after an assault.  the police never apologized and wouldn't even give me back my wallet claiming it for evidence.  i even called my father the next day who couldn't say that anything had been wrong about how i had been treated except that i "shouldn't have been out at that hour"  (i had walked to nearby Walmart to get groceries.  the store had 24 hour shopping and it was easier to get groceries at that hour).  

 

it kind of ended up setting me off and influenced my state of mind a few weeks later when i quit zoloft (and zyprexa) cold turkey.  i ended in a confrontational state of mind when i quit the drugs and coupled with the insomnia that goes along with wd, i began speaking German to people on walking paths near my apartment.  At one point, i can remember hoping to "trip out" America's nuclear weapon arsenal telepathically to end the world.   besides the police incident weeks earlier, so much had been done to me in institutional settings in the past that i just didn't care and there had also been the Iraq Invasion and Abu Gharib torture revelations that made me wonder what kind of world or country i even lived in anymore.  and  also wd is also a pretty hopelessly lonely experience mostly. 

 

another time i vowed to put an end to all unnecessary lawn upkeep.  i just hated lawnmower, weed whackers, chem-lawn etc.  this was during a three day span off the pills in 2004 and without sleep and walking the city for three days.  i had seen a man in his garage getting his lawnmower ready to mow the lawn and i walked up to his garage and pulled his garage door down, thereby locking him in the garage with the mower.  he started yelling at me, and after a few minutes of holding down the door, i ran off and was later apprehended by the police and taken to a treatment center.  

 

i am trying to be more understanding these days and accepting.  time and work and having some social connections (and also nieces and nephews now) in the world helps .   when i had the manic episodes  before in 2004 and 2005, i had just moved out of a group home (similar to a halfway house) into my own apartment in a town where i didn't know anyone at all, which made wd even more difficult since i had no social circle or network what-so-ever to ground me and was just on my own with my cat in a town of 30,000 strangers.  

 

i am having a hard time receiving treatment at hospitals for non psych med issues these days and had talked to a kinder, older woman  last week in a hospital elevator who asked how my appointment had gone (we were taking the elevator together from the primary care department).   i told her that "surprisingly, it had gone ok, although mostly my doctor visits have been a waste of time with doctors who don't care or are incompetent"  and she had said "yeah, there are a lot of people going through that right now.  who are the having the same trouble finding help"   so, it's not like we are totally out there and off our rockers as they say.  She was a competent lady and around my mother's age and was finding, like i have been, that many doctors do pretty shoddy work these days if they do any work at all.   

 

anyways, i am glad you posted on here and i can definitely related to these fantastical scenarios of the mind from the meds and withdrawal.

 

Poetjester (Derek)