Hippopotamus tapering off Seroquel

[hippopotamus]

Hi all,

 

I discovered this group through Beyondmeds and understand that, although the main subject is how to get off antidepressants, you guys have experience with getting off other meds as well. I hope you can be of help to me, since from what I have read, I'm under the impression that there is wealth of knowledge here.

 

I started to taper off Seroquel this summer, without any knowledge about possible withdrawal-symptoms, or knowledge about the advisable rate of tapering. I guess I possibly went too fast, and wonder if the flu-like symptoms that I have been suffering from for over a month right now, could be related to this.

 

 

I have been on Seroquel XR for 4,5 years right now. My dosage has been as high as 800 mg. For the last 2 years the dosage fluctuated between 400, 450, 500 and 550 mg, depending on how I was doing.

 

The main thing the medication did for me, was helping me sleep and it also took the edge off of some psychotic experiences, although it didnt help me get rid of them. What DID help me in being less and less bothered by these and other complaints, was starting to work through and integrate the whole bunch of traumatic experiences I sufferered in my youth. This has made an enormous difference in my life and has opened up a whole new 'me' for me.

 

Because I started to feel so much better, somewhere in the summer this year, it might have been June or July, I started to cut down on my meds. When I started to cut down, I guess I had been on 450 mg for quite a while. I cut down with steps of 50 mg. About a month ago, I had cut down to 200 mg. A week ago I increased again to 250 mg, because I was afraid the continuing flu I was having, was caused by withdrawing too fast.

 

I think that about 8 or 9 weeks ago, I started to experience pretty severe muscle spasms whenever I was lying down and my body started to relax. Since working through trauma also seems to include release of physical tension, at first I thought it had to do with my trauma-therapy. However, now I'm not so sure anymore. It could be withdrawal-related, or even worse, it could be tardive dyskinesia. In any case, it hasnt stopped or lessened and seems to increase in response to stress and emotions.

 

So anyways, I already had flu-like symptoms before I cut down to 200 mg, but there was a flu going around my town anyway, so I guess it could have very well been a real flu, or it was a delayed withdrawal-effect of cutting down to 250 mg. In any way, I cut down to 200 mg whilst I was still having some flu-symptoms and the flu-symptoms havent cleared up - I've been having them for over a month right now. When I found out this could be withdrawal-related, I increased my dosage to 250mg. I have been at this dosage for a week now and still suffer from the same flu-like symptoms.

 

Does anyone know if there is anything else I can do about this? Does it sound like it could be withdrawal-related, even though the symptoms havent (yet) cleared up in reaction to increasing the dosage? Any other thoughts on the subject?

 

Thanks a bunch to anyone reacting to my post. It's highly appreciated!

 

hippopotamus

[Skyler]

Hi hippopotamus, Welcome to the forum!

 

A miserable experience for sure. It sounds like you may have had the flu AND withdrawal symptoms at the same time. The flu like symptoms you still have are due to withdrawal. Others here who know more about tapering Seroquel will be along to give you more detailed feedback, but for now, you did the right thing updosing to 250 mgs of Seroquel. A cautious and correct move.

 

Schuyler

[Altostrata]

Hello, Hippopotamus, welcome.

 

How about those muscle spasms, did they go away? Those sound like unambiguous withdrawal symptoms.

 

It could be you still have some kind of bronchial infection. Have you had that checked?

 

Has your dosage reduction affected your sleep?

[hippopotamus]

Thanks for the reply guys!

 

I still experience the muscle spasms / contractions, although it fluctuates from day to day. If I could be sure that they're withdrawal-related, it wouldnt bother me as much, although it would definitely still unnerve me. But the realization that it could be permanent damage, as in tardive dyskinesia, which was already there (before I started withdrawing) but at the same time was being covered up by the higher dosages, really freaks me out. I guess only time can tell what it is.

 

I started to experience sleeping problems when I reduced the dosage before, every 50 mg off would make me lay awake at night for hours before I fell asleep. When I noticed that drinking alcohol helped in falling asleep, I started to self-medicate with drinking a couple of glasses every night. I thought this wouldnt cause me a lot of harm, since my liver turned out to be fine whenever I went for check-ups. But (how naive) I didnt know that the combination of alcohol and meds (greatly?) increases the chance of brain-damage. I wish my psychiatrist had been more specific about this.

 

Anyways, to my amazement I havent been experiencing sleeping-problems during this last tapering off. I attribute this to the trauma-therapy: I have been having severe sleeping problems for all of my life, from the age of 6 I guess. Experiencing sleeping-problems is one of the manyfold symptoms of trauma. I never expected that starting to work through the trauma's would actually relieve my sleep-problems, I just assumed my nerve-system was too fucked-up from being in hyperarousal for almost all my life that it would be kind of stuck in that mode for forever. However, I have been able to cut down from 450 to 200 mg Seroquel without notable sleep-problems and without me needing to drink alcohol to be able to fall asleep. I just keep my fingers crossed that the sleep-problems wont return when I try to taper off further.

 

So does anyone have any ideas with regards to what I can do about the flu-symptoms? This is the fifth week I'm having them... should I just wait it out? Any ideas as to how long this could last?

 

Thank you so much!!

[areyouthere]

Hi,

 

New here myself. Just wanted to say "Hi", welcome you and tell you that you are brave and fortunate to have found this forum. Your last post already sounds more upbeat.... it is such a relief to know that we are NOT alone and that there are knowledgeable people who, as far as I know, don't have "MD" behind their names and are serious, forthright and will tell you like it is. No games are played here....just good Karma!

 

As for advice I can only say that there is a common theme here... it's called "hold and wait" and speaking of brave and strong, holding and waiting especially at first, can be daunting. But that is one thing I can attest to.... it's worth it. So that is what I would do for now until someone else besides me stops in to answer your last question. Just don't change anything and wait until you hear differently.

RU

[annej]

Hi Hippopotamus,

 

The flu-like symptoms sound very much like withdrawal. Although agranulocytosis is less common in Seroquel than Clozaril, if it were me, I would see a medical doctor and get some lab work done (CBC, full Chemistry panel, Thyroid panel).

 

Your symptoms of "muscle contractions/spasms" sound much like what I experienced. Tardive Dyskinisia (TD) is my hunch secondary to exposure to antipsychotics. This movement disorder may appear during initiation, dose increases, or dose reductions. I want to offer some reassurance that TD is not always permanent and that your CNS may heal given time. My neurologist said that my TA/TD might take "months to years" to resolve since my last exposure to SSRI's/SNRI's and atypicals. There are Internet support/information groups for those suffering from neuroleptic-induced movement disorders.

 

A consult with a neurologist specializing in movement disorders may be helpful. I found a knowledgeable, compassionate, and supportive neurologist and this has been very helpful to me with my situation.

 

If you have not already done so, may I recommend the Icarus Project's "Harm Reduction Guide to Coming off Psychiatric Medications"? It discusses a "pragmatic not dogmatic" approach to reducing the harm caused by long term use of psychotropics. Here is the link: http://theicarusproject.net/HarmReductionGuideComingOffPsychDrugs.

 

I wish you wellness and health. Hugs, Annej

[hippopotamus]

For anyone who might be interested, here's an update.

 

My flu-like symptoms lasted for two months, after which I felt fine - for about one month. I thought I had recovered, but then after a month I got the same kind of symptoms all over again and am currently in my fourth week of them. Apparently, it was just a window of feeling good.

 

I do want to continue withdrawing though. I have been reading more stuff about the way long-term antipsychotics usage seems to cause brain-shrinkage and it scares the hell out of me. I feel kind of claustrophobic when I think about it. It feels like there's something inside of me that's slowly erasing my brain, and all I want to do is yell 'get it out of me, get it out of me!'. But I cant do that, because of the obvious dangerous withdrawal-consequences this could have.

 

I am afraid of how continuing tapering off will make me feel. I miss it so much to be able to dance, which is my passion. It feels like a part of my heart is taken from me.

 

However I intend to start doing neurofeedback and I really really hope this will ameliorate my withdrawal-complaints. I will keep you guys posted on how thats working out.

[Altostrata]

It's a good sign you had that window, your nervous system is stabilizing.

 

Suggest you hold for another month, then very gradually reduce 10% per month.

 

You should feel better if you can stabilize and reduce gradually.

[hippopotamus]

Thanks for replying Altostrata! You've given me a little bit of hope

[Barbarannamated]

Just stopping by to say how insightful and informative your posts around the forum are. Thank you for your thoughtful and kind input.

 

I wish you the best with your own journey.

B

[tezza]

Just stopping by to say how insightful and informative your posts around the forum are. Thank you for your thoughtful and kind input.

 

I wish you the best with your own journey.

B

 

 

I totally agree! Thank you again for the kind reply you extended to me in Linda's thread.

 

Hugs,

Tezza

[hippopotamus]

Wow, thank you guys. And thank you for the warm and supporting atmosphere on this forum and all the valuable information that you all contribute to it!

[primrose]

Hi Hippo

 

I am a fellow quetiapine taperer.

 

I am tapering benzos, so I have in the past, tended to taper benzos a bit, hold, then taper quetiapine, hold etc.

 

I am holding valium and just cut my Q to 100mgs a day taking 25mg four times a day. (gonna tell doc that tomorrow to check all is well)

 

I wish I could give you some helpful advice, but I don't have any.

I cannot get the liquid quetiapine as that would be easier.

Quetiapine is not soluble in water, see http://www.drugbank.ca/drugs/DB01224

When I made my cuts from 150mg to 112.5mg, I either split the pills with a pill splitter, (not accurate), or I put a 25mg pill in 50ml water, waited for it to disintegrate, and divided it in half by the following way. I would shake up that suspension and take the lid off quickly, dump a prepared syringe in there, draw 25ml off. (again, not accurate)

 

They say, for antidepressants, cut 10% off. I didn't really stick to that rule cos I was impatient, but I could have given myself symptoms which may not have been easily got rid of.

 

What withdrawals have you experienced? Anxiety was the only one that I experienced.

[Altostrata]

http://www.drugbank.ca/drugs/DB01224 lists quetiapine solubility in water as Moderate.

 

It also comes in a wide range of tablet dosages. See http://survivingantidepressants.org/index.php?/topic/1707-tapering-off-seroquel/

[primrose]

http://www.drugbank.ca/drugs/DB01224 lists quetiapine solubility in water as Moderate.

 

It also comes in a wide range of tablet dosages. See http://survivingantidepressants.org/index.php?/topic/1707-tapering-off-seroquel/

 

Hi Alto

 

Thanks. Does moderate mean that it is relatively ok to divide it the way I was doing it?

[Altostrata]

Were you making a liquid with tablets and water?

[primrose]

Were you making a liquid with tablets and water?

 

Yes

Just taking tablets at the moment.

[hippopotamus]

Hi Primrose,

 

'Nice'to have a fellow seroquel-taperer

 

You can read about my withdrawal-complaints in the previous posts. I also became very sensitive to stress and easily overburdened when I tapered to quickly. I remember just getting off of the couch already felt like an impossible accomplishment.

 

One nice side-effect of the Seroquel I never realised it to be (instead I thought it was just an extra sign that I was completely nuts)has been uncontrollable eye-rolling. Luckily not vertically (that must be a really freaky experience), but just horizontally.

[hippopotamus]

Primrose, may I ask what your highest seroquel-dosage has been? And how long have you been on it?

[hippopotamus]

Ah and another thing which I have been noticing lately, since a couple of weeks, is that I sometimes have a lot of difficulties forming adequate sentences. Dont know if its related to the Seroquel, but I certainly dont like it. It feels like I lack control over my brain.

[primrose]

Hi Hippo

 

I've been on seroquel since late 2009. I started on 25mgs then went up to 100mgs. In 2011 I went up to 150mgs, and in early 2012, I went upto 200mgs, but, for a couple of months of that time, I was taking 300mgs by accident.

 

In July I went down to 150mgs. I could not handle the oedema that I got, after about 8-9pm, walking got really difficult.

 

I then had an interruption in my valium taper in the second half of 2012 and tapered seroquel down to 112.5mgs.

Then last week down to 100mgs.

I am feeling ok so far, but on Friday, I had this horrible attack of rage.

Sleep is slightly affected, so I am holding all tapers for a bit until I am ready to start again.

 

I plan on staying on 100mg seroquel till I get off the valium, but as I have a vestetd interst in this subject, I will be reading posts enthusiastically.

 

Sorry to hear you are having struggles getting off it.

 

Not being soluble makes it quite awkward to taper off.

 

I will be watching your progress Hippo and I am behind you and wish you the very best in your taper.

[Altostrata]

Seroquel is moderately soluble in water http://www.drugbank.ca/drugs/DB01224

[hippopotamus]

Thanks for the info Alto!

 

Primrose, do you feel your original problem has been taken care of? I mean, the problem that made you go on this stuff in the first place?

 

Thanks for the encouragement. Right back at ya!

[primrose]

Thanks for the info Alto!

 

Primrose, do you feel your original problem has been taken care of? I mean, the problem that made you go on this stuff in the first place?

 

Thanks for the encouragement. Right back at ya!

 

Thanks Hippo

 

I went on seroquel to help valium withdrawals but all it has done is cause me more problems.

[hippopotamus]

Ah thats too bad. I'm sorry to hear that. Were you adviced to do that by psychiatrist?

[hippopotamus]

Can anyone help me with the following question? Should I wait with reducing my dosage untill I am completely stabilized on my current dosage? And how can I decide IF I'm stabilized on my current dosage?

 

I'm asking because, up until a month ago, I thought my withdrawal-symptoms had gone away. However it turned out to be only a window, because right now I've been feeling sick, flu-ish, dizzy etcetera for over a month. The window of feeling well in between lasted for a month.

 

How will I know if I am just experiencing a window once again if I'm feeling well for a couple of weeks?

 

And should I wait untill I dont experience any withdrawal-symptoms anymore before a next reduction? I'm asking because I'm worried about the fact that the longer on antipsychotics, the greater the chance for permanent brain-damage. So it feels a bit like a catch-22.

 

And a last thought thats been occupying my mind... how can I tell if symptoms I'm experiencing are due to withdrawal or maybe due to drug side-effects / brain-damage stuff? I've been having serious problems with speaking lately and have also had some awkward 'motoric' feelings. Involuntarily swinging arms when I relax, I can feel my head kind of wants to move in strange ways sometimes (although I can suppress the actual movement) and just a general awkward 'motoric'feeling. I know it probably sounds vague, but I dont know how to better define it.

 

Is it withdrawal? Or is it tardive dyskinesia as a side-effect? How on earth can I tell the difference?

 

A big thanks to anyone who can help me out here!

[Altostrata]

It is a Catch-22. You are correct that a symptom such as tardive dyskinesia can be an adverse effect while taking an antipsychotic OR a withdrawal symptom.

 

All you can do is keep on moving forward. If you feel you need more time to recover from a decrease, delay your next drop.

 

As you decrease the medication, adverse effects are also decreased. While you're still on the antipsychotic, it's is doing less and less damage as the dosage goes lower.

[hippopotamus]

Thanks for that Alto. Can you say anything sensible about the need to completely stabilize from withdrawal-symptoms before reducing further?

[Altostrata]

On November 19, it looks like you were taking 250mg. Are you still taking 250mg?

 

Do your flu-like symptoms have any daily pattern? At what time of day do you take Seroquel?

 

Has the jerking when you lie down to relax diminished?

[primrose]

Ah thats too bad. I'm sorry to hear that. Were you adviced to do that by psychiatrist?

 

My anxiety from benzo wd was so bad at the time that I asked for more meds.

That's when I got trazodone, then as the anxiety did not go away (surprise, surprise), so I went to the psych and he chose quetiapine.

 

I'm not glad I am on it, but I am glad he chose that out of all the others, as I have read worse things about the others.

It's a pain that seroquel is not soluble.

When it comes to my time to taper it, I might experiment with a daily titration by making up a set amount in suspension and taking one, or a half of a 1ml syringe-full out the first day, and one more the next, and one more syringe-full the next, and so on.

As it's not soluble, I'll have to give it a shake after each syringefull.

This will enable a smooth slide down rather than bumpity bump.

There is, however, one problem, the partial solubility means that each of my four doses won't be equal.

 

For now though, I am still holding, as it is only a week since I cut that 12.5mg off.

I have been feeling really depressed and un-motivated, and the day after, had a rage attack.

The depression may possibly be due to the cut in seroquel, but the rage was only two days after, so I am not sure the cut caused that.

 

Overall though, I am glad I cut, because I get an even dose every 6hrs now with one 25mg pill, and I don't have to mess about trying to achieve that 12.5mgs by either adding water or halving the pill.

Lol I rambled, hope you don't mind. You only asked one question, but I never got to talk to a seroquel taperer before, only ever read retrospective posts from others past experiences.

I don't really know why I am having so much trouble, as I am only on 2.76mg valium a day, 300mg trazodone, and 100mg quetiapine, seems hard to beleive that a cut of 12.5mgs seroquel would cause so much trouble. It wasted the week really, cos I got nohting much done.

I'll look forward to next week which will be better, and I now have the worst over with my seroquel cut.

[hippopotamus]

Hi Alto,

 

I am still on the 250 mg. The jerking when I lie down has been almost completely gone away for a couple of weeks, but now since a couple of days or so I'm again experiencing some of those problems.

 

The seroquel is in the XR-form. I take it at night before I go to sleep. If I'm going to cut down with 10 % I'll have to take 25 mg 'regular' seroquel, because there are no XR-tablets smaller than 50 mg.

 

I havent really been able to discern a pattern in my flu-symptoms. They fluctuate. Some days are better than others. I'm under the impression sugar worsens them, so I'm reducing my sugar-intake.

[primrose]

I hope you don't mind me answering the posts separately, I get confused as a side effect of withdrawals from the medication and it's easier for me.

 

I would hold until stable. Reducing from an unstable place can only add problems.

 

How to decide if you are stable? I can only give my experience. The more stable the better, really. I know it's hard to feel stable at all on these meds, but we need to be at a certain level of stability to tolerate a cut. We don't want that cut to stop us functioning. We don't want withdrawal symptoms to be so bad that they interfere with our lives. We don't want the symptoms to stop us doing things we enjoy. We want to know, that after a cut, we can still get on with our lives. I hope that gives a clear explaination of what it means to be stable enough to cut. You will know, just listen to your body, and if in doubt, make a smaller cut.

 

When did you last cut, and by how much? Are you still on 250mg?

I've never really experienced windows, just very gradually improving anxiety and depression which often worsens but never gets as bad as it was when I c/t valium.

I don't know how to tell a temporary window from genuine healing. The only thing I can suggest is that you wait another month and take it from there, or wait a month after this current bout of symptoms is over. I know it's long winded, but slow wins the race in the end.

 

It is a cruel catch 22. I am not aware that you can get permanent brain damage from seroquel. Our anxiety can fool us into worrying about these things though. I've been there myself but I tend not to think about that stuff and get on with tapering.

 

I'm really sorry you are experiencing all of these uncomfortable feelings.

 

I thought tardive dyskinesia was an involuntary mouth movement.

 

I hope this post also has been helpful.

[hippopotamus]

Thanks a lot for your elaborate reaction Primrose. Your story makes a lot of sense.

 

I'm afraid my worries about permanent brain-damage arent unrealistic. See for example: http://www.mindfreedom.org/kb/psychiatric-drugs/antipsychotics/neuroleptic-brain-damage

 

I have been on this stuff for almost 5 years. The majority of this time I have been on dosages between 450 and 800 mg. Thats quite a lot of exposure to it.

[hippopotamus]

I dont mind you rambling Primrose. Ramble away as much as you like!

 

I'm glad you're glad to have tapered off another step. Sorry you feel your week's wasted. I know the feeling. It's not completely wasted though, since you're taking less seroquel now than you used to.

 

I'm no expert, but I would think that withdrawal-reactions can still show up after a couple of days, even if you're micro-tapering. But maybe someone else is better equipped to answer that question.

[Altostrata]

hippo, since you've been on it so long, I wouldn't rush to reduce it. It's a good sign the jerks are going away. They're probably symptoms of your earlier large reductions.

 

Why not hold for another month?

[primrose]

Thanks a lot for your elaborate reaction Primrose. Your story makes a lot of sense.

 

I'm afraid my worries about permanent brain-damage arent unrealistic. See for example: http://www.mindfreedom.org/kb/psychiatric-drugs/antipsychotics/neuroleptic-brain-damage

 

I have been on this stuff for almost 5 years. The majority of this time I have been on dosages between 450 and 800 mg. Thats quite a lot of exposure to it.

 

Hi Hippo

 

You would drive yourself mad worrying whether or not you have brain damage from seroquel.

Chances are you haven't, and the only thing you can do about the situation is to taper off safely.

 

How many times a day do you take your dose?

I am not advising you change, but after discussion with my doctor, I am finding the four times daily dosing better.

 

I agree with Alto about holding for another month and taking it from there.