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1168718 tn?1464987135


hi everyone, was just wondering if you guys have had any trouble with Seroquel?  I am being put on it for sleep, and I have read up on it, and the side effects are kinda scarey.  Does anyone have any input?  My Dr. is putting me on a very tiny dose to start, as I reacted to Nortriptyline and have been on nothing for sleep for 3 days now.  Can anyone give me some help please??  
17 Responses
Avatar universal

I don't want to scare you but I took it years ago and don't remember if I took a low dose to begin with but I do remember what happened.
But please remember after reading this that people react to meds differently and I am a baby with meds. I was put on klonipin and only took it the first time which made me sleep for way too long and hubby had a hard time waking me.
I took Seroquel and, everyone still thinks I'm crazy, but I swear that I laid there awake but could not move and my heart was throbbing like crazy. I thought I was going to die. I was trying to say something to my husband but couldn't.
At any rate, I never took it again and wouldn't recommend it to anyone. But again, it wouldn't be on the market if it didn't help someone...
My favorite though from the psych drugs for sleep was Trazodone. If started with low dose, and after gettting used to the side effects, took a good while, I actually was able to sleep really well. It was also before my physical side effects of MS too. I don't know how that would work because the sleep meds I'm on now don't keep me asleep through the pain.

I probably didn't help at all but just a warning from someone that did have an ugly side effect from it...

987762 tn?1331031553
I only have a horror story, not me, a young man with GAD was put on it to relax him enough to sleep. It was to replace the sleeping pill he was on (it was addictive) and seroquel was the replacement. What ensued was a nightmare, his behavior became psychophrenic, complete with visual and audio halusinations, his short term memory was depleted so he couldnt even remember a conversation he'd just had. He was a danger to him self and sheesh i could go on and on with all the horrible things that has happened to him whilst on seroquel, he's still trying to get his life back.

Just google and you'll find a gaggle of horror stories and warnings, i even asked for help here about a month ago. It was created as a replacement drug for psychophrenia, and as a replacement of what was available, it is better but even people with psychophrenia have a 70% refusal rate because of the adverse side affects. I've got a truck load of research somewhere, if such a large % of psychophrenic's would rather live with their condition than the side affect of seroquel, well thats saying something!

My conclusion about this drug, dont take it unless you have tried everything else available, and only then do it after you've tried using a hammer!

Sorry I dont have anything good to say about seroquel.

Avatar universal
I agree with JJ, don't take it. Refuse and refuse some more. Back when I took it they didn't think I had MS, they thought bipolar disorder, then with the psych drugs, my condition worsened and they gave me more meds. Til I got smart and did what I felt was right which 2 years later turned out to be the MS.

The more I thought about it today the more I wanted to beg you not to take it. There are so many other ones they can give.

Please let us know how things are...
1168718 tn?1464987135
You guys are scaring me.  !!!   When do we start to trust our Doctors???   I have been on such a roller coaster ride this last 2 years, that I don't even know which end is up anymore.   The Dr's keep giving me different med's to try because some of the ones just don't work for me.  The only one that has worked is the Gabapentin.  I did try Trazadone, but with my Zoloft, they would not give me more than the 200mg dose, because it would react with the Zoloft.  The 200 dose just didn't seem to work.  Then they tried Nortriptyline, and I used it for 3 days, and had the worst nightmares of my life, so, stopped that.  Waited for 3 days before anyone got back in touch with me, so had no sleep help or pain help at night for that time.  Then yesterday that is when he called and said the Seroquel.  He has me on a 1/2 pill of 25mgs. dose, because he says that I am sensitive to the drugs.  Sometimes I just want to jump off a bridge and get it over with.  

But, I can't really do that because we have to much to live for.  So, now we have to figure out what to do.  I was on Zoplicone to help sleep, but it seemed not to work to well, but I have to say that it is the best I have had yet, and I don't know if I should go back on it or not.  Now that it is a weekend, and the Dr's aren't in, and my appt, isn't until the 17th which is Wednesday, maybe I just won't take it at all.  

I HATE MS !!!!!!!!!!!!!!!!!

667078 tn?1316004535
I love Seroquel! I have been on it for years and it is one drug I have never, ever had a problem with. I have been on so many drugs that I had problems with. I usually take 25mg  and if I am having a bad time I might take two 25mg in a day. I like the regular over the extended release because it does not leave me spacey.

Everyone is different. The Doctor is the key ingredient. Every drug has side effects. Everyone reacts differently to each drug. There is no one size fits all. I have good Doctors who if something does not work try something else and consult other Doctors. I have had Doctors I could not work with and I have learned the Doctor patient relationship is so important. I do my research, we discuss a drug and I respect my Doctor and try it. If it does not work its back to the drawing board.

There is a horror story for every drug, herb, and procedure in medicine. Ask yourself do I trust my Doctor? All of mine are on my team with out a doubt and want for me to be as well as I can be.


987762 tn?1331031553
Sorry for the scare, that really wasnt my intent! I think one of your main issues is your sensitivity to the drugs you've already tried, i actually think your dr's are trying to find something that will help you, please dont mistrust your dr because he's perscribed seroquel, it is commonly perscribed for insomnia because it does have a seditary affect.

It may not cause YOU any problems, and like Alex you might find it really worth taking, as i said i dont have any personal experience except for knowing a young man who has been negatively affected by taking the drug. In truth i think the main reason he had the reactions he did was because it was too heavy a drug for what he needed, his morning drug made him a bit hyper and unable to sleep, in my mind he would of benefited from a lower dosage or an alternative SSRi but his psyciatrist just kept uping his meds and adding more meds when things went from bad to worse.

Zoplicone is a short term drug so thats probably not going to be worth taking for a long while yet, though you did say Neurontin (Gabapentin) was the only one that worked, could you not try that again, sorry i cant work out why this one wasnt explored futher. I'm speculating that it just didn't quite do the job and thats why you started trying other meds, i am sorry your dealing with this, it shouldn't be so hard but it often is until you find the combination that works best for YOU!

I went looking for something to help you find an alternative to Gabapentin and came across this site: http://www.emedexpert.com/compare-meds/gabapentin.shtml  if you have a chance to look it may help you with some direction or maybe something in this class that you havent tried yet. So sorry your in pain and cant even sleep, hang in there please!!

562511 tn?1285907760
I've had a few horror stories myself with medications, BUT the key to success is to be aware of any unexpected or adverse side effects.  Be wary of adding another med if you don't do well on it.

Many people use seroquel successfully.  It is certainly worth a try.  You need to sleep.  Just have someone who knows you well keep an eye on you.  If you are feeling way too freaked out to try it, let your doc know.  

At one point in time I was having horrendous nerve-type pain and my neuro suggested Elavil.  I read the possible side effects and did not take it.  I suffered horribly until I talked with my neurologist and he explained a few things to me.  He was right.  It worked a miracle for me.  Sometimes you have to depend upon your doctors experience in managing meds. Sometimes you have to chance it to obtain relief.    

supermum - I was wondering how this young man was doing.  What a disaster.    
1168718 tn?1464987135
Hi JJ,
I thank you for your input.  I think I did not say it right, but the Gabapentin, is the ONLY drug that I AM taking, that is working for me.  I don't want to try anything else, that one at least is working for me.   LOL   But, the other ones, have been a nightmare.  

I really appreciate your looking up stuff for me, that was sweet.  I agree with Karen99, how is the young man that you were talking about??  

Karen, thank you too for your response.  Boy, who would have thought there were so many of us out there with MS and all these issues.  Sure is nice to know there is somewhere where we can go and spout off.  It does make it a little more bearable to hear that someone else has been where you are.

Thanks again guys, I really do appreciate it.,
take care,
987762 tn?1331031553
Hey Candy,

This young man is still on seroquel 300mg at the moment, 1/3 of the dose the psych put him on. He dropped that dr after he would only prescribe Zyprexa and told him the side affects would be the same as seroquel, didnt say anything about the high risk of diabetes. He's lost confidence in that dr, couldn't see the logic of replacing one drug that made him loose his sense of self, with another that could be worse. And he didn't want a dr that didn't care or even think it a problem that he'd gone from being independent, to being totally dependent and now functioning like he was schizophrenic.

He's had to wait for an appt with a new psychiatrist, its taken a while but this week he gets to have his say and get some help to safely get off this drug. He likes the way he feels on the pristiqu (sp) it lifts his mood but makes him still too wired to sleep which is the only reason he had to take a sleeping drug in the first place, something that seemed to be forgotten by the other psych.

I've talked to him a lot and i think he actually uses inflamatory language with out understanding what that means to a psych, he used the term 'manic' quite a few times but when i asked him what he is doing (behavior), how he feels (emotion), where he is (control) etc when he thinks he's being manic. There was nothing beyond the realms of normal behavior, just a young man letting his hair down at a night club, happy, his bloods pumping cause he's dancing to music he loves. What he describes as manic, is too situation percific, too normal, too controlled and this mania he's talking about only happens when he's out having a good time with friends and thats it. Not manic at all!!

Oh, he uses the term 'depression' to describe relitively normal reactions to disapointment, anger, frustration and even bordom. He uses the term for any initial negative reactions he feels/felt when something went/goes wrong in his life. He doesnt really understand depression and the emotion behind it, his issues seem to be more about confidence, worrying he's not good enough to achieve his goals. Each time something doesnt work out it reinforces that negative belief of himself, he's got CAPD and he's grown up believing he was a failure.

Sorry i didn't mean to go on and on, i just find it very interesting that this young man has been told all his life very inflamatory descriptions of quite normal feelings, never had help for his learning difficulties or low self esteem but he was put on anti depressants by a psych way back when he was a little boy and to this day no psych has ever been able to dx him with a definitive diagnosis. He's bright, caring, loving, funny, talented musician and it probably hasn't helped that his mum discourages his musical ambitions and wants him to be a lawer like the (other) golden child, he doesnt seem to have ever had a say in what or even who he's allowed to be.

Anyhoo, i'm pleased in a way that you at least have something that is working for you, can they not play around with the dose or something without introducing such a heavy class of drug, hypno therapy anything, sheesh i'm probably clutching at straws but there has to be something to help you, the trick is going to be in finding it!


Avatar universal
I am so sorry for scaring you. Wish I would have stayed with the first response. I just care about others so much even though I don't know you and I guess after going through the psych meds for so long for false dx's and trying to treat my pain with them, and bad side effects, I'm just so weary anymore.
But, they are all right. It does go down to your trust in your doctor and treatment plan. The neuro I have, I would definitely trust because she sends me home with the info and then we discuss whether I should take it. Whereas the other one talked with me about 10 minutes and insist I take whatever it was. Back then I was so naive believing docs were like Gods. Knew everything.
Again, I am really sorry for scaring you. Wasn't my intention. Guess I was scared for you.  If  you trust your doctor or your team of doctors and feel they really mean the best for you, give it a chance. Like I said, it wouldn't be on the market if it didn't help some people.
1168718 tn?1464987135
Hi you, I really appreciate the support and concern from all the members on this site, which is why I keep coming back.  I am relatively new here, with only 42 posts, but I do like it and take to heart the comments made by people that have or are in the same situation as me.  It is so hard though, I care about people like you, and that was and is my role in life.  I was a nanny foar 28 years, and we fostered and cared for sexually abused and emotionally abused kids.  I also ran my own day care so I could stay home and watch my own 2 kids.  Now, that they are grown, married with children of their own, my world is quite different now.

With the diagnosis of MS last year, I almost fell off my chair.  I actually went into the Dr. for a prescription renewal, and was told, oh, by the way, your tests came back, and you have MS.  So, that is how this cycle all started for me.  It has been a roller coaster, as you can well imagine, and I'm sure it is for all of us out there with our Dr.'s.  I have been to 7 different neuro's, and am going back to one of the first ones on the 31st of March.  The MS clinic wants me to give her another chance, so I guess I will.  It was my psychiatrist that gave me the nortriptyline and it didn't work, ( made my mouth and toungue numb), then went a few days with nothing BUT the gabapentin, then he called and put me on the Seraquel.  I'm on a 12.5mg. dose, and it does seem to help me sleep.  That is what it is for, just a sleep aid.

Sorry for going on so much, I guess this is also a response to JJ..... *S*  Hi JJ .....
1168718 tn?1464987135
I wasn't finished typing , guess I hit the wrong button.  Anyhow, thanks guys for
your concern.  JJ, I almost feel the pain of that young man.  I have dealt with people like him too, and it is so disconcerting that the parents can't encourage the will of the child.  
It drives me crazy.  I have a relative like that too, and it is very hard . For the individual, as well as those caring for and raising.

I applaud you for keeping in touch with this man, and encouraging him.  We all need someone who will listen and not judge.
Good for you,

Cheers for now, and thanks....

*HUGS* to both of you......
1168718 tn?1464987135
Has anyone had any trouble with the sleeping drug called "Zoplicone"....... I don't know it's generic name......
Avatar universal
Hi everyone,

Does anyone know if there is a link between using seroquel and the onset of MS?
667078 tn?1316004535
   I am sure there has been no scientific link between using Seroquel and the onset of MS because there is not enough know about MS to say anything scientifically triggers it.

One theory is you have MS dormant  in your genes and something a virus or environmental triggers it. No one really knows.

Avatar universal
Thanks Alex!

So if it's dormant in your genes is a DNA test for a known MS marker available, and if so I'm assuming carriers could be identified from birth?  
667078 tn?1316004535
The dormant in your genes is just a theory. No one really knows what MS is. No there is no genetic test. They do not even have MS in mice they use another disease they theorize is close to MS.

I recommend a book Curing MS: How Science is solving the Mysteries of Multiple Sclerosis by Howard L. Weiner. He has been a researcher for a long time and goes step by step as to where they are in the mystery. According to him we have a ways to go in understanding what MS even is.

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