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Seroquel Support Group


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Posted

Hi:

 

I decided to start this group because I know many people are on that evil Seroquel. I have been on 200 mg for more than a year. He first tried 25, 50, 100, 150 with no luck. I simply cannot sleep without it. I went through 10 months of no seroquel at the beginning of my K taper and in all of these months, I slept no more than 3-4 hours a night. It finally drew me to the edge of a cliff where I didn't want to live anymore.

 

I could not think, drive and wanted so badly to nap but my body was all revved up. Finally, my anti-med pdoc put me on it. I knew in advance it was a bad drug, so I'm not making any excuses. I just would do anything at that point~~except for benzos~~ to sleep again. And I did and I am. My pdoc said I won't have any trouble tapering off it because he won't permit me to do so until I am healed from my benzos. He said those trying to taper off it w/o having healed are the ones who get into trouble. I know he is very good but whether I believe him or not has yet to be determined. He never took it so how would he know? I tried once knocking off 12.5 mg, and could not sleep for 7 days and gave up and reinstated. I paced all night.

 

So this little thread, which I hope will grow, is talking anything about Seroquel and even people taking another type of an AP are welcome too. We can exchange ideas, offer support, talk about our problems or just bitch about it. Who's next?

 

Betsy :)

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Posted
Just curious, were you already off Klonopin when you tried cutting Seroquel? I find Valium sedating so I took the bulk of my dose and eventually all of my dose at bedtime. Maybe you could try cutting Seroquel a bit again and move more of your Valium dosing to bedtime at the same time?
Posted

I guess everybody is different... I have been on it for a week now and it works like a charm in knocking me out for 6-7 hours. I take 25 mgs.

It doesn't make me feel tired during the day at all nor makes me dumb.

I wish it could be more helpful for anxiety! It just seems to wean off after a while.

 

I'm tapering Klonopin off too. Insomnia was the reason I originally took it so I guess ill have to work on it once I stop it.

Sorry to hear about your experience, at the moment I need it for sleeping and I used Trazodone before switching to it. It provides me some sleep while Trazodone some nights didn't work for no apparent reason.

Posted

Just curious, were you already off Klonopin when you tried cutting Seroquel? I find Valium sedating so I took the bulk of my dose and eventually all of my dose at bedtime. Maybe you could try cutting Seroquel a bit again and move more of your Valium dosing to bedtime at the same time?

 

I tried tapering it while I was tapering the K. But the K didn't matter as I was paradoxical to it, so for me, less was better. When I told my pdoc about it, he got kind of angry, saying don't drop two drugs at the same time! He is hell bent on getting me off benzos first. My last cut of V was a tad larger than previous cuts. I normally feel the effects between 6-9 days and then back to baseline. My normal symptom is not bad, just not very good sleep. This time around, this is my 17th day of cutting, and I haven't been able to sleep at all. I don't know whether it was the cut itself or I am now feeling the cuts from two months ago, as they too were a larger cut than normal. I was never sensitive to any benzo cuts at all, but this Valium is a real stinker!

 

Betsy :sleepy:

Posted

Thanks for starting this, Bets.

 

I'm on Q for sleep, too. Like Bets, it was take it or die from lack of sleep. Now I am trying to reduce it to see how low I can get and still sleep. I'd like to get to half the tablet. Then I will go back to reducing my L.

 

I have been having terrible neuropathy for over a week and I'm wondering if anyone else has had this symptom from trying to taper Seroquel.

 

Gard

Posted

Cutting those pills is almost impossible, especially if you get the tiny 25 mgs one! Also, the compound in insoluble in water and this makes liquid tritation problematic as well.

 

Sleep is the only reason I started it as well...

 

I'm sorry to hear you all are struggling with it, I know how it feels like, but I think when it comes to heal GABA receptors sleeping properly is essential, even if this involves using another psychodrug. Sleeping is essential to heal your body in general and of course, preserve your sanity!

 

http://www.tabletsmanual.com/img/online/seroquel_dosages.jpg

Posted

Hey FOL:

 

Thanks for those pics. Mine would be on the top right corner. I'd hate to be on the top left corner. 200 mg is too much anyway, but lower doses did not work at all. I wonder if you can MT it, w/o using a compounding pharmacy. I hate those.

 

((((Hey GARD and welcome aboard. We need ppl like you!))))

 

Betsy :)

Posted

Hey FOL:

 

Thanks for those pics. Mine would be on the top right corner. I'd hate to be on the top left corner. 200 mg is too much anyway, but lower doses did not work at all. I wonder if you can MT it, w/o using a compounding pharmacy. I hate those.

 

((((Hey GARD and welcome aboard. We need ppl like you!))))

 

Betsy :)

 

I'm sorry to hear you're not sensitive to low doses of the drug. It's a shame because at 200 mgs it may have some antipsychotics effect and affect your serotonin/dopamine receptors as well. This may not be the case, it just depends on your sensitivity to the drug. When used for insomnia is supposed to act only on adrenaline and histamine... and maybe a little bit on serotonin! I also read antihistamines like Benadryl didn't work for you, so maybe since low-doses of Seroquel are basically like strong antihistamines you just don't respond well to this category of compouds...

 

Posted

Hey FOL:

 

Thanks for those pics. Mine would be on the top right corner. I'd hate to be on the top left corner. 200 mg is too much anyway, but lower doses did not work at all. I wonder if you can MT it, w/o using a compounding pharmacy. I hate those.

 

((((Hey GARD and welcome aboard. We need ppl like you!))))

 

Betsy :)

 

I'm sorry to hear you're not sensitive to low doses of the drug. It's a shame because at 200 mgs it may have some antipsychotics effect and affect your serotonin/dopamine receptors as well. This may not be the case, it just depends on your sensitivity to the drug. When used for insomnia is supposed to act only on adrenaline and histamine... and maybe a little bit on serotonin! I also read antihistamines like Benadryl didn't work for you, so maybe since low-doses of Seroquel are basically like strong antihistamines you just don't respond well to this category of compouds...

 

Hi:

 

I know that but don't feel that way. I asked my pdoc about this high dose, and he said some people need an even higher dose and in my case, since I am not sensitive to drugs at all, it will work as a sleep aid. The thing about the Q is that it makes you fall asleep, while not making you stay asleep. The Traz does the opposite. So I take both. I may regret this mess I am in. Valium is bad enough for me. And the K taper was so easy. I should have done a direct taper.

 

Betsy :)

Posted

Hi all and thanks again Betsy for starting this group.  :thumbsup:

 

I am on Seroquel 25mgs since last March 2015. I went on it basically because I just was in bits after a failed crossover from Xanax to Valium. One of the worst medication experiences of my life. I could not sleep , eat , I was I hell with physical pain. Presently , I am down to 3.125 mgs. I started tapering it in February 2016. I am on the small orange colour tablet in the photo above and yes its tiny. I dry cut it with a pill cutter. Its a fiddly crumbly job but it is manageable. The lower I go it definitely becomes even more sedating. It is a strange med and doez act like an antihistamine in these low doses.

 

As I tapered the symptoms I noticed that increase are :

 

Headaches for sure. But they do go away after a few days after the cut.

A little nausea.

Dizzy spells/head swirls. Much improved.

Paresthesia has increased but I have had this on and off for over two and half years. Burning.

Muscle twitching - much increased. Like bubbles popping under my skin..

Some electric shocks. Much improved now

Neuropathy - continues for now. I have had this for two over two and half years . Increases with Seroquel withdrawal.

Bloating - known with Seroquel.

Some itching. Crawling type sensation.

 

 

Symptoms slightly decreasing :

 

Muscle stiffness/ pain -  it varies on a daily basis. Backpain,  legpain. Buttock pain Mostly left sided.

Nerve pain

 

Symptoms much better :

 

My sleeping has become a lot more solid. Less waking up , no night eating.

Less anxiety.

Less irritability.

I can think clearer.

Eyes less foggy.

Concentration is getting better.

Less noise and light sensitively.

Less constipation.

Appetite is better - eating healthy.

I can exercise a little more but it's gonna take more time.  Benzos wiped me out . The physical pain of withdrawal and being on different combination of meds has taken its toll on these muscles and nerves of mine.

 

 

If I think of more I will add them in later.

 

This is just my experience with this pup of a medication.  It certainly knocked me out at 25mgs and probably (definitely) has added on a longer road for me as regards the healing process.  I am very very close to jumping and its been a long long road. Three and a half years of withdrawl. I am 15 months off my last benzo tomorrow .  I have tapered off 11/12 medications.  :-\  . 

 

I am wondering whether or not I have healed somewhat even with a layer of this medication Seroquel ? ...

Anyone with any thoughts on this ? .

 

So very close now .  ::)

 

 

Posted

Hi there:

 

Your sig says you are still on benzos. If this true? And did you taper the S while tapering your benzo? You did say that you are off benzos or in this just stuck in my idiot mind? Benzo brain, ya know. I know my pdoc would never agree to taper my S while still on my Valium. But I have read numerous times that the lower you get the better you sleep, like you said. So I will question my pdoc when I see him tomorrow. When he started me with a very low dose (25 mg) it did nothing for me. Neither did higher doses. I am wondering if I could just cut my dose in half it will help me sleep better. I do sleep pretty well but I often have night time wake ups and very vivid nightmares, and those scare me.

 

I go back to bed only to restart the same awful dream. I suspect I will have trouble with the S as I am still tapering my Valium, which hasn't gone well lately. I think I was dropping by too much and it has caught up with me. Sleep is the only issue I have but it's been 17 days since my last cut and I normally only feel the cut on days 3-6 and then back to baseline and sleep. 17 days is too long for me as it never lasted this long for me. In the meantime, I am in a holding pattern. I don't know what to do but I am already assuming my pdoc will tell me to keep holding my Valium and don't even think about my Seroquel. I know him so well so I shouldn't have to pay him his "child's rate" of only $200. He normally charges $300/hour. He never has 15 minute checkups. I'm assuming he will yell at me tomorrow because I cut more than he told me to and per usual, when I don't do what he say I run into trouble. I better get my ear plugs out. Cause he yells mean!!!

Posted

Hi, Thread.

 

Rose, I'm glad you're so close to the end.

 

I am having unbearable neuropathy and I don't know why it has flared up like this. It had been improving and now I'm thrown back in. I take the little 25mg tablet for sleep. I have been cutting it but am wondering if I am so inaccurate that I am really yo-yoing on it. I think I'm down to 17mg, but I don't have much confidence in my scale or my measuring.

 

My benzo was originally prescribed for a severe sleep disorder. I habituated to it quickly and it did nothing for sleep any more. Switched doctors. New psych wanted me off the benzo and used the Seroquel so I could sleep. But I wake up so drugged and groggy and can barely function in the morning. Yet it gives me 5-6 hours of sleep. Before the meds, I was getting 0-2 hours and was in agony. So this is less agony, I guess. Except for the neuropathy.

 

Rose, Can you describe what yours is like? I am trying to figure out it it's the taper doing this or something else. My symptoms are so weird. They change from burning to piercing to scraping and wander all over my body.

 

I have had some help with how to do a water titration of an insoluble. It is possible, so I am going to try that if I can get my brain working. That will be a challenge! :wacko:

Posted

which one is Rose?

 

That's what I'm calling Aoibherose. ;) That avatar does look like a rose, doesn't it?

Posted

Note to self: Cry on the phone to young adult son who is always to busy to stop by that the pain is too much to be stuck home alone with and he will say he will come to visit you.

 

Anyone want to place bets on whether or not he shows up? I'll bet a leftover bottle of expired Xanax liquid that he forgets.  >:D

 

(Mods, I'm kidding!!! Don't boot me out!)

 

Gard :laugh:

Posted

My guess, from having three brothers, is he would not visit you even if you were healthy..........men are like that ya know? I hope you prove me wrong. I didn't see anything from you to get booted. Me, yes. Several times. :idiot:

 

Betsy :)

Posted
Well, I think volunteering to give away my Xanax would be a little bit illegal if I were serious about it. ;)
Posted

Well, I think volunteering to give away my Xanax would be a little bit illegal if I were serious about it. ;)

 

You're right. But I suspect this is a common occurrence. Even my so called friends who know I am tapering offer me Xanax. They are no longer my friends......... ::) I'll hang out with people who don't think benzos are good. If I can find them, that is.

Posted

Well, I think volunteering to give away my Xanax would be a little bit illegal if I were serious about it. ;)

 

You're right. But I suspect this is a common occurrence. Even my so called friends who know I am tapering offer me Xanax. They are no longer my friends......... ::) I'll hang out with people who don't think benzos are good. If I can find them, that is.

 

Yes, that is quite a hard thing to find, isn't it? 

 

Had a disappointing visit with my doctor today who thinks my symptoms are psychosomatic. She seems to believe I need to be on all these meds because of stress and anxiety and my w/d symptoms need to be treated with therapy. She encouraged me to take more meds, not less. I guess I should be grateful that she writes the scripts so I don't need to worry about a forced rapid taper. But somehow, this sort of thing gets me down. Really wears on me. This journey would be so much easier if it weren't so lonely.

Posted

Hi Bets

 

No I am not on benzos. I am 15 months off benzos today.  :)  is the ticker I put on showing this. Hope so  ?

 

I was crossed ( badly ) over from Xanax to Valium in early 2015. I was in an awfully bad way at that time. After all the previous meds and ct from Cymbalta.  One drug after another. It really messes with a person's head , heart and soul doesn't it ?  ???

 

I did as best as I could with the Valium taper but I went on Seroquel as I just couldn't sleep.  So I have now tapered the Seroquel.

 

You may not have trouble with Seroquel Bets. None of these meds are easily tapered . I had pretty awful nightmares on Seroquel and as I got lower they started to ease up and my sleep became less broken .I stopped roaming to the kitchen for a snack or two.. Benzos for me were the beasts. The beast of all beasts.  Those doctors sure have a lot to answer for. I used to get sooooo angry in 2014 especially.  I stomped around raging at the world in my bedroom. I had to let this anger go or it would eat me up inside. I took control of my medications and my doctor knew I was aware and well capable . I read and understood my meds well enough at that stage so I was able to make informed decisions .

 

Please do not let your doctor yell at you Bets.  They are there to help , one hopes . And it is for you so expensive so make sure he listens to you.  :smitten:

Posted

Gardener

 

Sorry to hear about your tough disappointing appointment with your doctor today. I know that feeling. My doctor is very much the same so I have really had to get more informed about my own condition and mental health. I can see tbat she is there just to write a prescription for me if I need it and thats pretty much it. Small talk after that. As for  your doc encouraging you to take more meds .... that is so harsh. You know better right ?

 

Yes it is such a lonely journey but you are not alone. I am so grateful that someone like you reads and responds to my posts because you know what pain is like. It so hard for others to understand as its such an invisible illness. You are not alone here.

 

The neuropathy I have appeared to come on after I had been on many meds so I honestly don't know which one brought it on. I do know that I had been tapering Xanax and Lamictal at that time in January 2014.

Its a burning pinprick sensation that had mostly been on my left back and left leg for over two years.  My leg would go quite numb and a general feeling of weakness. Since I began tapering off the Seroquel , especially as I got lower , it has gotten worse and has moved. It can become very nervey in nature. It can stab , prickle , tingle , burn anywhere .  Today was not too bad but then again  my muscles are in knots so I cannot win. Recently ,  I have been diagnosed with Piriformis myofascial pain and Lumbar Facet Arthropathy. ( I went to see a Pain consultant )  Basically a glute muscle injury and facet joint degenerative changes . I firmly believe that it is due to the medications in part.. My muscles and nerves just became so overwhelmed.

 

Yes I did see on another thread that you got help with your water titration .This is great. :thumbsup:

 

 

Posted

Hi Bets

 

No I am not on benzos. I am 15 months off benzos today.  :)  is the ticker I put on showing this. Hope so  ?

 

I was crossed ( badly ) over from Xanax to Valium in early 2015. I was in an awfully bad way at that time. After all the previous meds and ct from Cymbalta.  One drug after another. It really messes with a person's head , heart and soul doesn't it ?  ???

 

I did as best as I could with the Valium taper but I went on Seroquel as I just couldn't sleep.  So I have now tapered the Seroquel.

 

You may not have trouble with Seroquel Bets. None of these meds are easily tapered . I had pretty awful nightmares on Seroquel and as I got lower they started to ease up and my sleep became less broken .I stopped roaming to the kitchen for a snack or two.. Benzos for me were the beasts. The beast of all beasts.  Those doctors sure have a lot to answer for. I used to get sooooo angry in 2014 especially.  I stomped around raging at the world in my bedroom. I had to let this anger go or it would eat me up inside. I took control of my medications and my doctor knew I was aware and well capable . I read and understood my meds well enough at that stage so I was able to make informed decisions .

 

Please do not let your doctor yell at you Bets.  They are there to help , one hopes . And it is for you so expensive so make sure he listens to you.  :smitten:

 

Hi:

 

Nice t see you are off both meds. I wish I were you. I was only joking about my pdoc. He doesn't yell. At worst, when he's mad at me, he stares, as he now knows me to be a bit odd. Anyway, I went for my appointment today and it was not for today. It is for next week! He just laughed when I knocked on his door and said, Betsy, you're brain is fried. I had to agree with him on that one. My K taper went easy as pie and so far, so good with Valium, but once I tried cutting just a slice of the Q I could not sleep for 7 days and paced all night. After that week of hell, I reinstated so here I am! If you only knew my pdoc you would wish you were his patient. Yes, he's that good. I would not trade him for all of the gold in Fort Knox.

 

My original provider who put me on 10 mg of K and when I asked her to taper me off it, she said she did not know how to and besides, I could use even more. That made me as mad as you got.  I hope we follow the UK and begin to sue those lousy ones. I bet the FDA can't be sued.

 

Betsy :)

Posted

Well, I think volunteering to give away my Xanax would be a little bit illegal if I were serious about it. ;)

 

You're right. But I suspect this is a common occurrence. Even my so called friends who know I am tapering offer me Xanax. They are no longer my friends......... ::) I'll hang out with people who don't think benzos are good. If I can find them, that is.

 

Yes, that is quite a hard thing to find, isn't it? 

 

Had a disappointing visit with my doctor today who thinks my symptoms are psychosomatic. She seems to believe I need to be on all these meds because of stress and anxiety and my w/d symptoms need to be treated with therapy. She encouraged me to take more meds, not less. I guess I should be grateful that she writes the scripts so I don't need to worry about a forced rapid taper. But somehow, this sort of thing gets me down. Really wears on me. This journey would be so much easier if it weren't so lonely.

 

I really hate it when people say this. Nobody has ever said this to me or else they get a boot print on their arse. My feeling about that is they say it because they don't have an answer and are clueless in general. They are not worth your time and money. And medical schools seem to get worse every year. It's the vets who are smart, as it is much harder to get into vet school than medical school. If you have an animal, just check your last bill. ::)

Posted

Gardener

 

Sorry to hear about your tough disappointing appointment with your doctor today. I know that feeling. My doctor is very much the same so I have really had to get more informed about my own condition and mental health. I can see tbat she is there just to write a prescription for me if I need it and thats pretty much it. Small talk after that. As for  your doc encouraging you to take more meds .... that is so harsh. You know better right ?

 

Yes it is such a lonely journey but you are not alone. I am so grateful that someone like you reads and responds to my posts because you know what pain is like. It so hard for others to understand as its such an invisible illness. You are not alone here.

 

The neuropathy I have appeared to come on after I had been on many meds so I honestly don't know which one brought it on. I do know that I had been tapering Xanax and Lamictal at that time in January 2014.

Its a burning pinprick sensation that had mostly been on my left back and left leg for over two years.  My leg would go quite numb and a general feeling of weakness. Since I began tapering off the Seroquel , especially as I got lower , it has gotten worse and has moved. It can become very nervey in nature. It can stab , prickle , tingle , burn anywhere .  Today was not too bad but then again  my muscles are in knots so I cannot win. Recently ,  I have been diagnosed with Piriformis myofascial pain and Lumbar Facet Arthropathy. ( I went to see a Pain consultant )  Basically a glute muscle injury and facet joint degenerative changes . I firmly believe that it is due to the medications in part.. My muscles and nerves just became so overwhelmed.

 

Yes I did see on another thread that you got help with your water titration .This is great. :thumbsup:

 

Rose, those nerve pains sound just like mine. I have found when explaining my pain and how it affects me to regular people, if I say it's something like fibromyalgia (which it really isn't) they at least get that it is invisible and exhausting. Seems like fibro is becoming more and more known, so I find more and more people who get the invisible illness and pain part of it. Doctor's, though, that's different story! I think they just are taught to never admit they don't understand something so they have to act like they do and make something up.

 

I have all my equipment for water titration now and hope to try it tomorrow after I practice a bit with plain water. Wish me luck!

 

Gard :smitten:

Posted

Bets, have you ever considered liquid titration so you can make teeny tiny cuts?

 

Gard


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