My doctor put me back on. Was only on it for a week before at 25 mg. Put back on at 12.5mg. Tonight had horrible anxiety, extreme crying spells, panic horrible agitation and anger. Am on this with Zoloft which isn’t working and Klonopin that I have been.
On for four years everyday because we have not found a med out of 47 to work for my four year treatment resistant depression. Has anyone had these terrible reactions to Seroquel. I mean, I have been emotionally unbalanced for four years but this was unbelievable. Is it possible to go into a remission after four years without meds? I mean after 47, I feel like it’s getting ridiculous . And will my brain ever recover from all these meds? Sorry for the long post - I am beyond over all of this .
Started Seroquel a week ago. Stopped for two days because it was horrible?
- Asked
- 2 Jan 2021 by Hysterical
- Updated
- 27 March 2021
- Topics
- seroquel, anxiety, panic disorder, agitation, generalized anxiety disorder, anger, doctor, crying
Answers
My thought is you react pretty badly to all meds - over the past year almost every med has caused an increase in anxiety/mood related symptoms from the get-go. You also react badly to what are very low doses, thus you never have been able to tell if you would eventually respond to the normal therapeutic dose of any med. Technically speaking you would not be "treatment resistant" because to be truly "treatment resistant" you have to "fail" at a med after 6 weeks at the therapeutic, which you generally never manage to do. (this is not criticism, just pointing out some things).
Your progression is also confounded by the continual use of a benzo at moderate doses, which can result in rebound anxiety over time. My guess is you have been on benzos for so long you are no longer getting any relief from them and that is the main reason for the anxiety--not the other tiny doses of new meds.
Finally, yes it is possible to recover and these meds have not damaged your brain in any permanent way.
It may make sense to go off everything, but I don't see an easy solution to your anxiety issues if you do that. Perhaps a benzo w/d clinic -- but that will not be an easy thing to do I'm sure.
You got off alcohol, my bet is you can get off benzos as well.
I hope this doesn't seem too negative, but just stating what I see 'from this distance'.
@WildcatVet knows your history likely better than me, perhaps he can weigh in on options.
Hello,
Realistic and to the point, I agree with you. I am not judging but I have followed up on all the posts regarding Hysterical, just kept it to myself, and again in a good way elandem, I could not agree more with you.
Wouldn't it be great if there was a way we could take away all of our ailments!
All the best, masso
Thanks, Masso. Yes, it sure would be great if we could find something that would fully work for all of us... till then we have to just do the best we can. I truly feel for my friend Hysterical, which is why I try to help her in any way possible. I'm sure she appreciates your concern as well.
Best,
Bev
You are honestly a great person, no need to thank me, just wish more people like you had the empathy and sensibility to help a friend, I have no words.
Take care, masso
I thank you both for your concern. Elandem you have been such a blessing and support. I just don’t know where to turn next and what is one to do when nothing works. I am in a complete state of emotional unbalance and so very scared.
First thing to remember is, you have not exhausted all possibilities. There are many remaining. 1) Thyroid supplement, 2) Esketamine, 3) Ketamine, 4) MAOI --there are 4 of those, 5) Going to a treatment center and getting off all meds, 6) TMS and from what I have read this treatment is getting better and better results and is effective in treatment resistant depression, 7) ECT as a last (or even sooner) resort.
It does seem like you either can't take, or do not respond to, any of the "typical meds" (SSRI's, TCA's, SNRI's, usual augmentation). Thus, I think any of the 7 options I've listed seem reasonable for you at this point and maybe you can ponder those with your Dr.
I'm sure that detox from drinking was hard, and I assume detox from benzos would be similar, but you survived that--so you can do this too if needed, especially when you might feel less (not more) anxiety once you are drug free. I have not given up on you and you should not give up either -- you will eventually beat this if you continue to fight.
The thing is, I have had such terrible anxiety, agitation and panic. Actually since I went off the elavil and lamictal a couple months ago, I have been this way, but it’s getting worse. I don’t know what drug is making it worse. Also, does it make sense to keep going up on the Zoloft to a therapeutic dose, which I guess is 50 mg? She is hesitant because it makes me more agitated and anxious but I just have to get someplace where I can stay and see if it works. Am I making sense? As far as the TMS, if I start that in the near future, can you stay on Klonopin and whatever dose of Zoloft while you’re doing it. I know I am negative because I’ve just been through so much but I think I’ve been in a treatment resistant depression for so long, that this isn’t going to work and will make my anxiety worse. Plus I am now on another medical leave and if I lose my insurance I can’t do any of it anyway. Gosh I have written a novel and I’m sure it won’t go through. How have you been doing off your medicines? I admire you so much.
I actually stopped drinking cold turkey - that’s when this whole thing started. Maybe if I hadn't detoxed the drinking, I wouldn’t be in this mess - but who knows? I keep thinking if I go back to drinking I will get all better, but I know that’s not true.
I think going to the hospital would be one way to actually get to a therapeutic dose of something. But I understand you don't want to do this (again). I do think if you were able to find something besides benzos that would help your anxiety -- and you could get off benzos -- you would feel better. Again, there are treatment centers that do exactly that.
I"m still off benzos, but I'm not off lexapro and not sure if I'll be able to get off that anytime soon.
TMS can be done with most medications, in fact studies show it works better if you are on an antidepressant, however, they would rather you not be on benzos -- but I think they would still do it as long as you kept the dose constant. The main thing they want is NO CHANGES on meds during TMS treatment for ~ 12 weeks.
My doctor keeps insisting that Zoloft will fail as a stand-alone and I get so upset everytime she says it because I am not big in multiple meds, which has been the case for me all this time. Do you honestly think it can’t work on it’s own? I am still at 37.5mg. I know she is going really slow because of the terrible anxiety I get from these meds but I just am getting so impatient with all of this. Do you think it’s better to stay at the 37.5mg and do TMS or go to 50 and see if that works before doing TMS? Did I already ask you this in a prior post? If I did - I’m sorry. Have you heard also that Zoloft is supposed to be pretty successful with treating anxiety? If it could just help me, maybe I could come off the Klonopin. Maybe this is all wishful thinking but my medical leave is running out and I will soon not have insurance and will have to pay in my own.
What are your thoughts my friend? And how long were you on benzos cause you said I should go to a treatment facility, but you were able to do it. Do you think 50 mg is a therapeutic dose or is it possible I may need to go higher? That has always been an issue with me but regardless of the hell I might go through, it might be worth it. Can you tell I have no idea what direction to go in anymore.
So one more thing that I just have a hard time understanding. How do you know what a therapist dose is? I mean, I guess obviously when it starts working for you. But like with this Zoloft, I have been on 25 mg for four weeks and felt nothing - although Seroquel was in the mix. Now I am at 37.5mg for one week and feel nothing. Do you stay on each mg for the 8 weeks and if it doesn’t work , then you go up? What happens if you are on a dose for 8 weeks and it doesn’t work so you stop , but maybe you should have given it more time or raised the dose again. My side effects with the increased anxiety were always so bad at any dose - I am assuming that is why I haven’t been on a therapeutic dose - but I think I have for some of them. So again, how do you know what the therapeutic dose is and how long to stay on a dose before raising or just quitting?
I was not on klonopin or xanax as long as you have been, and my dose was never over 1 mg per day of Klonopin, thus I was able to do the taper on my own. Plus, I think my level of anxiety is generally not as high as yours, otherwise I might have had more trouble getting off of all benzos. Currently, I have them and can use them on an "as needed" basis, but I try not to do that unless really necessary.
As for theraputic dose, there is a known (lab determined) "serotonin transporter occupancy" associated with all drugs that work as SSRI's. In theory you would like that to be at a level of 80% occupancy or higher for any given drug. So, for example, a dose of Lexapro of 10 mg will result in an occupancy rate of 80% for most people (but can vary some, of course, depending on any person's metabolism). So, if you are taking a low dose it isn't doing the "full job" that it can do at the receptor level in your brain.
So you might get some benefit, but not full benefit. This occupancy rate is not linear, so you can't say 1/2 dose is 50%, ect... it's more complicated than that.
If I were you I would try to get to a dose of 50 mg Zoloft as soon as you can, then once you are stable and feel like you can stay on that for 8 weeks or more I would start TMS ASAP.
Whether or not Zoloft is good for anxiety all depends on how it works on you, how you metabolize it, etc... as always it is trial and error.
I'm not sure if you can be on just one med, or need more, but I assume your Dr. thinks your anxiety is too severe to be managed by just an SSRI, or SNRI, or TCA...
Sorry that I've been unable to question sooner. Actually, I agree with elandem's earliest comments. You need to get off the Klonopin. It's not doing you any good at this point in time and the long-term use of any benzodiazepine has the potential, among many other adverse mental and physical side effects, to cause chronic anxiety and/or depression.
So much of the literature focuses almost exclusively on the problems of habituation and addiction and doesn't address the concerns of long-term use (long-term being anything over three months).
or more).
It may be difficult to withdraw from your Klonopin but research shows that any adverse side effects usually resolve within three to six months after discontinuation.
Also, and I've mentioned this before, you have to try to work with your medications rather than approaching treatment with a negative attitude. You say they "never work" but I don't recall you giving many, if any, of them a "fair trial" and certainly not without the Klonopin clouding your judgement. You stop them because of their side effects and and those side effects may very well be the result of the Klonopin and your own anxiety talking you down.
Once your brain is clear you may very well find that many of your medications would have worked if they had been able to become fully effective.
Off point, I have two questions that you may have touched on but I don't remember. If I may ask, are you seeing a psychiatrist? Are you working with a therapist and are you getting Cognitive Behavioural Therapy? You mentioned once something about a psychologist which made me wonder about the treatment you're receiving aside from the medical aspect.
I'm not being nosy, okay? Just wondering.
WC
Thanks, WCV, for giving your input - I agree with you 100%.
Hysterical, I think it is hard to hear this (and please don't be offended) but your rapid and extremely bad reactions to most meds is pretty atypical and doesn't really make sense "biologically" speaking. Feeling extreme anxiety from 1 or 2 days on a low dose of any given SSRI, SNRI, TCA is likely not what is going on, but rather it is your expectations that get the best of you and make you anxious -- compounded by the fact that Klonopin is not working (and may be increasing your anxiety).
So, I think what WCV, Masso, and I are all saying is -- it would be really good to get off the benzos and see how you feel at that point. If you are strong you can do this at home yourself and there are many taper schedules for exactly how to do it--but slow is the key. I agree that w/in 6 months you should be able to be benzo free if you decide to do so.
Going inpatient. Take you off of benzo in 5-14 days. Wish I could say I feel good about this but I totally don’t. Thank you all for your support.
I’m beyond scared to say the least. Also I guess I stay on the Zoloft - second day on 50 mg and with all due respect, low dose or not, I have increased anxiety, agitation; etc. That could be going away to a rehab also where they are taking me off benzos in very fast time.
They will take you off benzos but will do it in the best way possible -- they will help manage your anxiety during this time. I think this is a step in the right direction and seems the only logical choice. We will keep you in your thoughts and hope you come out much much better. To the extent possible, keep us posted.
But everything you read says to go really slow. 5-14 days. .. seriously- isn’t this just setting me up for failure. I don’t think I could take anymore. I am having extreme emotional numbness. It seems to be getting worse. I feel completely lifeless - like a ghost. I feel disengaged from everything. What is happening? Is it the Klonopin , the long term depression, the Zoloft. I just don’t know what to do and that detox just seems like I’m doomed to fail. Everything I read says you have to take a long time to go off.
So you didn't go inpatient? Yes, that was fast but what these places provide is a safe way (biologically speaking) to get you off benzos quickly. They prevent seizures, keep you hydrated, keep you physically "comfortable" while you w/d from the medication. They are not really there to provide long term psychological help - that has to come from your psychologist and the work you have to do to get off. If you want to do long term w/d you can do that at home yourself by using a really slow tapper.
Increased dose of Zoloft to 50 mg two weeks ago. Nausea and diarrhea seem to be getting worse the longer I am on 50 mg. Does this seem normal?
For me that symptom never went away - even after a month and taking antidiarrhea meds. I think after two weeks it should be certainly better, not worse, if it is going to subside.
They say with increasing the dose sometimes that can get worse. I feel OK during the day but around 4 til the rest of the night - not good. Also not sleeping - really never do - but last night woke up after 3 hours with the worst panic symptoms and of course didn’t get back to sleep. Hoping it’s all the Zoloft and by some miracle if I stay on the 50 mg the whole time til like 8 weeks maybe the side effects will get better and maybe I will feel a little better. Can’t get to rehab feeling like this.
Hey guys ... I am not in rehab yet but I have read tons (shocker) of horror stories about going inpatient and the fast withdrawal of Klonopin. Please convince me this is the right thing to d . I am so scared as any thing I do anymore doesn’t seem to help.
If it were me I would do a w/d at home, on your own time -- follow a strict schedule and stick to it. But if you can't do that then a rehab is basically the only choice. It may not be "fun", but you will live thru it and likely come out better on the other side. Glad you are hanging in with Zoloft and I hope it helps.
I'm going for Spravato tomorrow... nervous but really hoping it helps. The Dr. at this clinic says he has had an 80-90% response rate and of 300 people treated less than a handful have stopped treatment. So one more thing to try, can't hurt, might help.
I don’t think that’s a choice at this point. Both psychiatrist and psychologist said I am beyond outpatient help at this point. Was also told by psychiatrist to file for SSI disability. She doesn’t see me able to work again. Never thought the words rehab and disability would ever be used for me. I feel totally defeated and a failure. This illness has now cost me family relationships, my job, my faith, possible my marriage and maybe my life. I am so hoping the Spravato works for you. My doctor switched around the Klonopin disease to give me more at night four nights ago and ever since then I have gotten up in the middle of the night several times or in the morning in a complete panic. She said it has nothing to do with rearranging the Klonopin. The dosage remained the same. It is at 1.25. Do you think going off will make me much worse - or is there the tiniest of possibilities my anxiety could get better? I just can’t keep going anymore.
My spravato apt got moved to Monday due to snow on the roads.
I do think that getting off Klonopin can help, but sounds like you need a rehab to do that. At least if you can't work you have things in place to get disability. But I hope you don't give up because there is no reason to do so - lots of options still out there. But it does sound like things are at a point where you need extra help and I hope you take it when offered. Yes, is hard on family, friends, but most of all it is hardest on we who suffer. 4 years is a long time, but there is no reason why things can't eventually turn around for you in time.
My doctor switched my dosage of Klonopin around. I was taking 0.25 mg in am 0.25 mg in afternoon and 0.75 mg at night. She has since taken away the afternoon dose and put it in the evening so I now take a full mg at night. Ever since she did that I am waking up in the night in full panic mode. Is this from increase I Klonopin at night? She did it to help me sleep but it’s not helping and I feel it’s making me even more anxious. My God, will this ever get better. I know in my heart I have quit. I never get out of bed and since taking the medical leave over a month ago, I have not been outside my motel. I know this isn’t good but I’m just done and now that Inwas told to go on disability, I just feel nothing and I no longer care. I truly just keep getting worse.
Maybe going on disability will take some pressure off and you can get in a rehab to get of benzos and then things may slowly get better. I honestly don't know what to make of the changes in timing of your dose and how you are waking up in panic mode--doesn't really add up physiologically speaking. Actually, the slight change in timing shouldn't matter much at all because once you are on X dose of any given drug for a prolonged time (several weeks) your blood levels somewhat "normalize" to a general level that doesn't change much over the course of 24 hours (due to repeated doses, half-life of drug, etc.). My guess is your night time panic has nothing to do with when you take your med.
Thanks. Ever since I was told I needed to go on disability and trying to decide if this rehab is the best thing, my anxiety has been worse than normal - so that’s probably what it is. Other than detoxing me quickly from the Klonopin, which I am scared to death of, I don’t know what good it’s going to do. I keep thinking, what if going off the Klonopin makes no difference and I’ll be incredibly defeated again. The doctor keeps saying the dose is too low for tolerance or increased anxiety and depression to be coming from the Klonopin. So when she says that, I just feel like, why am I doing this?
Still on the 50 mg of Zoloft. Think it’s been about four and a half weeks in the 50. Not really working. She wants me to keep taking it at reha . Like, wh ? Wouldn’t you say by now, it’s not going to work?
Well sometimes takes up to 6 weeks, but yes, you should see some good sign soon. Your Dr. is right that you are on a low dose of klonopin, but I guess the issue is that it does not seem to be helping at all. But no need to rush to get off of it really.
How was the Spravato?
Went to a rehab to get off Klonopin for 30 days. Absolutely horrific experience. Horrible conditions. Worse decision of my life. Came back far worse - anxiety is off the charts. Fight or flight 24/7. Went back on Ativan. Feel totally defeated but did not know what else to do. I am just done at this point. Hope Elandem and Wc vet that you are both doing well. I’m so down on myself as I got right back in the benzo merry go round but nothing else was helping and my anxiety is bordering on psychosis. I feel trapped now as the Ativan is not helping either. Still on the Zoloft which is doing nothing. I am not sleeping at all and once again in bed all the time. She wants me to take Zyprexa. Yikes - here I go again.
You have been on my mind, wondering how you were doing. Spravato was interesting, and it did
help my depression some--but didn't take me to remission (which is my goal) so I stopped. I'm going to try IV ketamine and/or TMS very soon. But for now I'm holding my own--not good--but not awful either, so that's something I suppose.
Sorry the rehab was awful, and also sorry you are now in what sounds like an even worse state.
I really do wish you would consider Spravato, Ketamine, or TMS. IMHO the odds of you recovering with the same old stuff is slim at this point (and you know I always try to paint the best picture, but after 4 years of ZERO help, it's time to move on-- you have tried everything in every class and gotten no response). That said, the one thing I think would be worth a shot is an MAOI. I, personally, wouldn't worry too much about being back on low dose benzos, but what I WOULD worry about is that they are not helping.
Finally, your brain is NOT damaged by these meds, it doesn't work that way. These meds do NOT cause brain "damage", but what does is being ill for so long. That is why I think you need to move on to things that might have a good shot at helping. You can STILL recover, people recover after 10 years or more -- so don't give up.
My diagnosis is PRSD now with a number of other things. I cannot get out of bed and I have nothing inside of me. No feelings for anyone or anything.
Elandem - since my main problem is terrible anxiety, don’t you think an MAOI would make that worse? Honestly though, I am willing to try it but I remember my psychiatrist saying it would increase anxiety.
Meant PTSD for above. She put me on the zyprexa last night with Ativan? I’m so scared. I just don’t have anything left. Haven’t been out of bed since Friday.
RE: MAOI and anxiety, it depends on which MAOI . Some are very sedating and are better for anxiety (e.g. Nardil).
I could only see the first part of you last message? Not sure what is going on. But no, I don't know anybody that has been on Nardil. Old med and not used much anymore b/c of all the food restrictions. But if you read the reviews here doesn't sound that bad. But you do need to have you liver panels done b/c seems hard on the liver (which many of these are).
Well - she is keeping me on the Zoloft (don’t know why). She thinks that even if I feel it’s not working, in her mind it is somehow keeping me out of the worst of it. Really? I would think being in bed all week is pretty bad. Anyway, she now has me taking zyprexa (dreaded atypical antipsychotic) along with 1 mg of Ativan at bedtime because I am not sleeping. Weird thing is - everyone on here and other places say zyprexa makes them extremely tired. I think it’s had the opposite effect on me. I mean last night I only got 45 minutes of sleep so you would think tonight after taken 2.5 mg of zyprexa and 1 mg of Ativan that I would be comatose. But NO. Wide awake and after midnight. Does Zyprexa cause insomnia in some? Of course, I would be one of the rare few. Anyway, I guess I will stick with the zyprexa and see how it goes. I’m not really sure why this was prescribed. I think for anxiety and maybe somewhat for PTSD, depression and OCD.
So now Zoloft, Zyprexa and Ativan. Here we go again. If you try TMS - let me know how it goes. However, if I go on disability and lose my work insurance, I probably won’t be able to do the TMS. Also, since my problem is mainly anxiety, does it work for that or mainly depression. Sorry for the long post. I hope you are well.
Anyone who is reading these posts and has experience with Zyprexa, please feel free to give an opinion on the insomnia. Again, 90% of what I see are people who are very sedated on it and who gain a ton of weight on it (something else I’m concerned about) as through these four years my weight has ballooned up and gone down because of these meds. And I mean 30 pound weight gain - then 20’pound weight loss; etc.
Not sure when I will start TMS, but hopefully in the next month or so. Maybe the Zoloft is keeping you up, or maybe it interacts somehow with Zyprexa? Who knows. Maybe when the dose increases you will sleep better. I'm going to try Ketamine injections soon to see if it is better than Spravato--Spravato helped a bit (maybe 25%) and Ketamine is supposed to be much better, so worth a try.
I'm treading water but not sinking. Sorry you are still so sick. Your experiences with the antipsychotics verify my opinion of them--which is why I have never tried one and likely will never try one.
Further Information
- Seroquel uses and safety info
- Seroquel information for Healthcare Professionals (includes dosage details)
- Side effects of Seroquel (detailed)
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